Enhancing Participation in Individual
and Community Life Activities
Practice Guide for Physiotherapists who
Support People with Disability
.
Document approval
The Enhancing Participation in Individual and Community Life Activities
Practice Guide has been endorsed and approved by:
___________________________________
David Coyne
Director, Clinical Innovation and Governance
Approved:
Document version control
Distribution:
Internal and external distribution
Document name:
Enhancing Participation in Individual and
Community Life Activities Practice Guide
Trim Reference:
AH14/151714
Version:
Version 1.0
This document
replaces
Nil
Link
This document is a supporting resource material for
the Enhancing Participation in Individual and
Community Life Activities Core Standard
Document status:
Final
File name:
Enhancing Participation in Individual and
Community Life Activities Practice Guide
Authoring unit:
Clinical Innovation and Governance
Date:
December 2015
Next Review Date:
December 2017
Enhancing Participation in Individual and Community Life Activities Practice Guide
2
Table of contents
1.
2.
Copyright ....................................................................................................... 6
Disclaimer ...................................................................................................... 6
Introduction .................................................................................................. 8
Movement development for people with disability .................................. 10
2.1 Introduction ............................................................................................ 10
2.1.1 Theory can inform practice ................................................................... 10
2.2 Motor control .......................................................................................... 11
2.2.1 Characteristics of motor control ............................................................ 11
2.2.2 Motor control for people with intellectual disability ................................. 12
2.2.2.1 Motor control for people with Down syndrome ....................... 12
2.2.2.2 Motor control for people with cerebral palsy ........................... 12
2.2.3 Variability ............................................................................................. 13
2.3 Motor learning ........................................................................................ 14
3.
4.
2.3.1 Principles of motor learning .................................................................. 14
2.3.2 Motor learning for people with intellectual disability ............................... 14
Supporting people to select their own goals ........................................... 15
3.1 Introduction ............................................................................................ 15
3.2 Supporting people through major life transitions..................................... 15
3.3 Planning support for people to choose their own goals .......................... 16
3.3.1 Gather information ................................................................................ 16
3.3.2 Interview collaboratively........................................................................ 16
3.3.3 Know the variety of assessment tools available..................................... 17
3.3.4 Consider factors influencing skill acquisition and maintenance .............. 17
3.3.5 Determine which resources will be needed ........................................... 17
3.3.6 Consider different service delivery models ............................................ 18
3.3.7 Developing programs with people and/or their carers ............................ 19
Assessment of movement abilities and constraints ............................... 20
4.1 Assessing movement skills through the lifespan .................................... 20
4.2 Interactive ‘Dynamic assessments’ ........................................................ 20
4.4 Assessing and monitoring physical constraints on movement ................ 31
4.4.1 Muscle length ....................................................................................... 31
4.4.2 Understanding and measuring muscle tone .......................................... 31
Hypertonia ........................................................................................ 31
d) Hypotonia.................................................................................... 33
4.4.3 Bony and joint deformity ....................................................................... 33
4.4.3.1 Scoliosis................................................................................ 34
4.4.3.2 Head Shape .......................................................................... 35
4.4.3.3 Joint Hypermobility ................................................................ 37
4.4.3.4 Musculoskeletal conditions of the lower limb .......................... 37
Assessing foot posture ...................................................................... 37
Assessment of In-toeing.................................................................... 37
Genu Varum/Genu Valgum ............................................................... 39
Hip Surveillance ................................................................................ 39
Sciatica 39
4.4.3.5 Musculoskeletal conditions of the upper limb ......................... 40
Glenohumeral Dislocation/ Subluxation ............................................. 40
Glenohumeral impingement .............................................................. 41
Tendinopathy .................................................................................... 41
Rotator cuff muscle pathologies ........................................................ 41
Adhesive capsulitis ........................................................................... 42
Neuropathies .................................................................................... 42
Long thoracic nerve pathology .......................................................... 42
Thoracic outlet syndrome .................................................................. 43
Axillary nerve compressions.............................................................. 43
Enhancing Participation in Individual and Community Life Activities Practice Guide
3
Suprascapular nerve entrapment ...................................................... 43
4.4.3.6 Osteoporosis and osteopenia ................................................ 44
4.4.3.7 Importance of nutrition ........................................................... 44
4.5 Assessing a person’s ability to transfer .................................................. 45
5
Selecting interventions to support movement ability ............................. 46
5.1 Introduction ............................................................................................ 46
5.2 Assisting acquisition of motor skills ........................................................ 46
5.3 Basing practice on evidence .................................................................. 47
6.
Supporting the management of physical impairment ............................. 51
6.1 Medical, surgical and orthopaedic procedures.................................. 51
7.
Promoting health, fitness, physical activity, and participation in
community recreational activities ........................................................................ 55
7.1 Typical physical activity levels for people with intellectual disability ........ 55
7.1.2 Children................................................................................................ 55
7.2 Benefits of physical activity for people with disability .............................. 55
7.3 Risks of physical inactivity for people with disability ............................... 56
7.4 Barriers and enabling factors for physical activity ................................... 57
7.5 The physiotherapist’s role in promoting physical activity......................... 59
8.
7.5.1 Assisting goal-setting for physical activity.............................................. 59
7.5.2 Physiotherapy interventions to encourage physical activity.................... 61
Planning 61
Engagement ..................................................................................... 62
Review 62
7.5.3 Promoting participation in community recreational activities .................. 62
7.5.3.1 Community based physiotherapy ........................................... 62
7.5.3.2 Community-based activity options for good health and physical
fitness
62
7.5.3.3 Useful contacts...................................................................... 64
7.5.3.4 Movement-based therapy activities........................................ 65
Prescription of assistive devices.............................................................. 70
8.1 Complying with relevant standards and legislation when prescribing
equipment .................................................................................................... 71
8.2 Factors to consider when prescribing equipment to maximise mobility in
all environments........................................................................................... 74
8.3 Funding for equipment ........................................................................... 75
8.3.1 The National Disability Insurance Scheme (NDIS)................................. 75
8.3.2 EnableNSW.......................................................................................... 76
8.3.3 Aids and Equipment for Supported Accommodation Services (AESA) ... 77
8.3.4 FACS Individual funding packages ....................................................... 77
8.3.5 Independent funding organisations ....................................................... 77
8.3.6 Community Participation and Transition to Work ................................... 78
8.3.7 Equipment and modifications to support employment............................ 78
8.3.8 Younger People in Residential Aged Care ............................................ 78
8.3.9 Helping Children with Autism/Better Start Funding ................................ 79
8.3.10 Equipment loan pools (ELPs).............................................................. 79
9.
8.4 After the equipment is purchased and delivered ..................................... 80
The impact of ageing on movement for people with disability ............... 80
9.1 Healthcare vulnerability of people with disability..................................... 80
9.1.1 Dementia and disability......................................................................... 81
9.2 Promoting mobility for people with an intellectual disability as they age . 81
9.3 Falls intervention and prevention............................................................ 84
9.3.1 Incidence of falls................................................................................... 84
9.3.2 Causes of falls...................................................................................... 84
9.3.3 Assessment of falls risk ........................................................................ 85
9.3.4 Falls Risk Assessment Tools ................................................................ 86
9.3.4.1 Berg Balance Scale. .............................................................. 87
9.3.4.2 Tinetti’s Performance-oriented Mobility Assessment (POMA). 87
Enhancing Participation in Individual and Community Life Activities Practice Guide
4
9.3.4.3 Timed Up and Go Test (TUG)................................................ 87
9.3.4.4 The Community Balance and Mobility Scale .......................... 88
9.3.4.5 The NeuRA QuickScreen © Clinical Falls Risk Assessment (or
QuickScreen ©).
88
9.3.4.6 Fallscreen ............................................................................. 88
9.3.5 Supports to prevent falls ....................................................................... 88
9.3.6 Useful resources for falls prevention ..................................................... 90
9.4 Educating about physical changes across the lifespan........................... 91
10.
11.
12.
9.4.1 Referral for x-rays and orthopaedic review ............................................ 91
Evaluating outcomes related to people’s goals ...................................... 92
10.1 Introduction .......................................................................................... 92
10.2 Assisting people and/or their carers to monitor intervention ................. 92
10.3 Coaching.............................................................................................. 93
10.4 Assisting people and/or their carers to choose the next goal ................ 93
Appendices ................................................................................................ 94
Appendix 1: Outcome Measures .................................................................. 94
Please note that FACS does not endorse any particular resource. .............. 94
The Canadian Occupational Performance Measure ..................................... 94
Appendix 2: Assessment tools ..................................................................... 98
Alberta Infant Motor Scale............................................................................ 98
Bruininks Oseretesky test of motor proficiency (2nd edition) ...................... 102
Functional Independence Measure ............................................................ 105
Functional Mobility Scale ........................................................................... 107
Gross Motor Function Classification System (GMFCS) .............................. 109
Gross Motor Function Measure (GMFM) .................................................... 113
High-Level Mobility Assessment Tool (HiMAT) & Revised High Level Mobility
Assessment Tool (Revised HiMAT)............................................................ 117
Movement Assessment Battery for Children – Second Edition ................... 120
Paediatric Evaluation of Disability Inventory ............................................... 125
WeeFIM ..................................................................................................... 131
Appendix 3: Hypertonia Assessment Tool .................................................. 135
Appendix 5: Best Practice Checklist for Equipment Modified or Fabricated by
FACS staff ................................................................................................. 138
Appendix 6: Risk assessment / clinical reasoning proforma ....................... 145
Appendix 7: Newly Prescribed Equipment Information Sheet ..................... 147
Appendix 8: Alternative sources of funding ................................................ 150
Appendix 9: Assessment tools for Physical Activity .................................... 153
The Children’s Assessment of Participation Enjoyment – CAPE ................ 153
The International Physical Activity Questionnaire ....................................... 155
Six minute walk test ................................................................................... 156
Appendix 10: Bike Riding Checklist ............................................................ 161
References ............................................................................................... 164
Enhancing Participation in Individual and Community Life Activities Practice Guide
5
Copyright
The content of this guide has been developed by drawing from a range of
resources and people. The developers of this guide have endeavoured to
acknowledge the source of the information provided in this guide. The guide
also has a number of hyperlinks to documents and internet sites. Please be
mindful of copyright laws when accessing and utilising the information through
hyperlinks. Some content on external websites is provided for your
information only, and may not be reproduced without the author’s written
consent.
Disclaimer
This resource was developed by the Clinical Innovation and Governance
Directorate of Ageing, Disability and Home Care in the Department of Family
and Community Services, New South Wales, Australia (FACS).
This practice guide has been developed to support practitioners1 who are
working with people with disability. It has been designed to promote
consistent and efficient good practice. It forms part of the supporting resource
material for the Core Standards Program developed by FACS.
This resource has references to FACS guidelines, procedures and links,
which may not be appropriate for practitioners working in other settings.
Practitioners in other workplaces should be guided by the terms and
conditions of their employment and current workplace.
Access to this document to practitioners working outside of FACS has been
provided in the interests of sharing resources. The Information is made
available on the understanding that FACS and its employees and agents shall
have no liability (including liability by reason of negligence) to the users for
any loss, damage, cost or expense incurred or arising by reason of any
person using or relying on the information and whether caused by reason of
any error, negligent act, omission or misrepresentation in the Information or
otherwise.
Reproduction of this document is subject to copyright and permission. Please
refer to the ADHC website disclaimer for more details:
http://www.adhc.nsw.gov.au/copyright.
The guide is not considered to be the sole source of information on this topic
and as such practitioners should read this document in the context of one of
many possible resources to assist them in their work.
1
The term practitioner as used here includes dieticians, speech pathologists, occupational therapists,
physiotherapists, psychologists, behaviour support practitioners and nurses.
Enhancing Participation in Individual and Community Life Activities Practice Guide
6
Practitioners should always refer to relevant professional practice standards.
The information is not intended to replace the application of clinical judgment
to each individual person with disability. Each recommendation should be
considered within the context of each individual person’s circumstances.
When using this information, it is strongly recommended practitioners seek
input from appropriate senior practitioners and experts before any adaption or
use.
The information contained in this practice guide is current as at 9th November
2015 and may be subject to change. Whilst the information contained in this
practice guide has been compiled and presented with all due care, FACS
gives no assurance or warranty nor makes any representation as to the
accuracy or completeness or legitimacy of its content.
FACS takes no responsibility for the accuracy, currency, reliability and
correctness of any information included in the Information provided by third
parties nor for the accuracy, currency, reliability and correctness of references
to information sources (including Internet content) outside of FACS.
Enhancing Participation in Individual and Community Life Activities Practice Guide
7
1. Introduction
Welcome to the Enhancing Participation in Individual and Community Life
Activities Practice Guide. This practice guide is part of the Family and
Community Services (FACS) Core Standards Program and is accompanied
by an optional appraisal in this topic area. The core standards program and
associated resource materials can be found at Core Standards Program.
There are a number of other practice guides/packages available that could be
read in conjunction with this practice guide. Some of these guides provide
more general information to guide practice. They also provide a context for
practice for example implementation of evidence based practice, professional
supervision and underpinning philosophies, values and beliefs.
The physiotherapy core standards and the foundation common core
standards represent some of the more significant core knowledge for
physiotherapists supporting people with disability of all ages. Although they
cannot cover all of the knowledge required, they aim to enhance the capacity
of practitioners by providing a convenient and up to date summary of
information and links. Practitioners across FACS have provided significant
content and consultation in developing the core standards. The core
standards are intended to form part of a practitioner’s learning plan as
developed with a professional supervisor (see the Professional Supervision
common core standard).
Use of the core standards to develop knowledge, skill and recognition is
outlined in the Frequently Asked Questions document. This includes the
importance of supervision, coaching and mentoring to build knowledge and
application.
The information contained may be useful to others (eg carers, educators,
practitioners, and managers) interested in the topic of enhancing participation
in individual and community life activities. The core standards aim to support
role and resource sharing, transdisciplinary work and best practice to support
person-centred outcomes in a modern world. Be mindful that the core
standards should always be used in the context of the practitioner’s scope of
practice, their organisational policies and procedures, and their professional
obligations. The work practice support person guiding participation in this core
standard should have an extensive background in physiotherapy.
This practice guide forms part of the supporting resource material for the Core
Standards Program developed by Clinical Innovation and Governance. Please
note that some of the information contained in this guide is specific to
practitioners working with people with disability in New South Wales,
Australia.
Feedback on this practice guide is welcomed via the core standards web site
at [email protected]– ensure you include the title
Enhancing Participation in Individual and Community Life Activities in the
subject line.
Enhancing Participation in Individual and Community Life Activities Practice Guide
8
1.2 Enhancing Participation
The introduction of the Disability Inclusion Act 2014 sets the scene for
protecting and advocating for the rights of people with disability within society
by:
“Committing the NSW Government to making communities more inclusive and
accessible for people with disability now and into the future, even when the
National Disability Insurance Scheme (NDIS) is fully operating”
“Regulating specialist disability supports and services to people with disability
in NSW and introducing better safeguards for these services until the change
over to the NDIS”
(NSW Department of Family and Community Services, 2014, Para 1).
This legislation supports physiotherapy practice in the area of supporting
people with disability to participate in individual and community life activities.
Principles of practice for physiotherapists include the provision of strengths
based and person-centred approaches, and supporting and building a
person's capacity to be involved in goal setting and support planning and to
make decisions around the activities that they wish to participate in.
Enhancing Participation in Individual and Community Life Activities Practice Guide
9
2. Movement development for people
with disability
“Movement is essential to our ability to walk, run and play; to seek out and
eat the food that nourishes us; to communicate with friends and family; to
earn our living –in essence to survive” (Terri Nash, M.S., C.P.M., as quoted
by Shumway-Cook and Woollacott, 2012, p. 1).
2.1 Introduction
Physiotherapists involved in assisting the development of movement in a
growing child require knowledge of motor development, in both its typical and
atypical presentations and need to stay up to date with the discourse around
these issues. They must also “recognize that different phases in the human
lifespan are characterized by different motor behaviours and different
demands on the neuromotor system” (Connolly & Montgomery, 2005 p.13).
2.1.1 Theory can inform practice
The way that physiotherapists decide to support people with movement
disorders is strongly influenced by their assumptions regarding how
movement is developed and controlled. More recent developments in theory,
such as ‘Motor control’ - a systems approach (Shumway-Cook & Woollacott,
2012) and the ‘Motor learning’ approach (Carr & Shepherd, 1987) can be
translated into clinical practice to integrate new research about typical and
atypical movement development. An example of this integration can be seen
in new approaches to intervention such as the task-oriented approach, which
has been developed in response to changing theories of motor control.
Development of these movement theories, along with the recognition of the
rights of people with disability to the full and equal enjoyment of all human
rights (UN Convention on the rights of people with disabilities, 2006) have led
to important changes in the way healthcare and support is provided to people
with disability and their families. With advocacy from the World Health
Organisation, the International Classification of Functioning (ICF)
differentiates the concepts of impairment and disability. Disability is viewed as
arising from the interaction of people with their environment and society rather
than just a function of any physical impairment they may have. It provides
language and a way of measuring which can engender attitudes towards the
gaining of wellbeing and good health for all people. This viewpoint can have
an important influence on how physiotherapists understand the development
of movement abilities for children and adults across the lifespan and help
prepare them to interact with people experiencing movement difficulties.
Enhancing Participation in Individual and Community Life Activities Practice Guide
10
2.2 Motor control
2.2.1 Characteristics of motor control
The term ‘Motor control’ refers to the way that the body and its nervous
system work together to produce purposeful movement that is coordinated
over a variety of environments (Latash, 2012). Movement arises from the
interaction of perceptual, cognitive and motor processes within each person
and interactions between that person, tasks and their surrounding
environment (Shumway-Cook & Woolacott, 2012).Typical development of
motor control is a complex phenomenon but has the characteristics outlined in
table 2.1:
Table 2.1
Characteristics of motor control development
Movement acquisition develops sequentially
Developmental rates vary individually
Skills are based on those that come before
Motor skills take time to fully develop competence
Initial movements may look clumsy and uncoordinated but practice
assists the development of coordinated and precise movement
Practice also tends to increase muscle strength.
Learned neuromotor programs develop for specific movements.
Learned neuromotor programs become increasingly automatic
(automatised)
Practice and automatisation lead to increasing speed as well as
increasing smoothness and accuracy
The brain continuously controls movement as it occurs, by using
feedback from proprioception, vision and the vestibular system.
(Adapted from information sourced from Down Syndrome Education
International Online, 2014)
Development of motor control for people with disability will vary but can be
dependent on the nature and development of a particular diagnosis.
Physiotherapists should expect a different developmental picture to emerge
across the lifespan for a person with Down syndrome, compared to a person
with Rett’s syndrome or cerebral palsy. Physiotherapists will need to research
the characteristics of each person’s situation to be aware of what to expect
when providing supports for people to develop motor control and acquire
motor skills. It will also be helpful to seek out the experience of colleagues
Enhancing Participation in Individual and Community Life Activities Practice Guide
11
and possibly video records to better understand such differences and build a
sufficient background of knowledge with which to practice.
2.2.2 Motor control for people with intellectual disability
For people with intellectual disability, motor control of balance and walking
can be affected across their lifespan, with experiences of increased muscle
stiffness, decreased stability in standing and walking and slower walking
speeds than their peers without a disability (Enkelaar et al., 2012). Poor coordination can make it difficult for people with intellectual disability to
participate in work, sport, recreation and activities of daily living (Carmeli et
al., 2008: Westendorp, Houwen, Hartman, & Visscher, 2011). People with
intellectual disability can have decreased static and dynamic balance and
decreased performance of muscles in their trunk and legs (Blomqvist et al.,
2013), decreased sensori-motor abilities and increased postural rigidity
compared with people their same age (Carmeli et al., 2008). They may also
have difficulty balancing or playing with balls (Vuijk et al, 2010).
Motor control impairments contribute to safety in mobility. Their risk of falling
can be increased (Enkelaar et al., 2012; Speechley, 2011) and the injuries
sustained can range from bruising and cuts to fractures, dislocations and
head injuries (Cox et al, 2010). The causation of falls is multi-factorial, as are
the required interventions to prevent them (Speechley, 2011) but motor
control is an obvious contributing factor.
2.2.2.1 Motor control for people with Down syndrome
Movement skills for people with Down syndrome can be variable. Stages of
development of motor control for people with Down syndrome tend to occur in
the same order as for people in the general population and at the same pace
as their cognitive development but those stages are significantly
delayed. Down Syndrome Education International, 2016. People with Down
syndrome may have hypotonia, persistence of infantile reflexes and slowed
reaction times resulting in difficulties with balancing while moving.
2.2.2.2 Motor control for people with cerebral palsy
The different types of cerebral palsy have different effects on the control of
movement available at body joints, and varying levels of weakness and
spasticity in different muscles. Different types of cerebral palsy have different
effects on the development of movement (Ostensjø, Carlberg, & Vøllestad,
2004) and different body systems can also be affected in the presence of
cerebral palsy, for example, vision, hearing, sensation and movement.
Therefore the movement ability picture for each person will be different and
specific to them. Classifications of different levels of movement abilities, such
as the extended Gross Motor Function Classification System for cerebral
palsy can give therapists and families some indication of possible movement
ability development for people with cerebral palsy (Palisano,et al.,
2003; Rosenbaum et al., 2008)
Enhancing Participation in Individual and Community Life Activities Practice Guide
12
Useful resources can be found on websites devoted to specific disabilities, for
example:
Rett’s Syndrome:
Rettsyndrome.org
Cerebral palsy:
Cerebralpalsy.org
Cerebral Palsy Australia
Down syndrome:
Down Syndrome Education Online
2.2.3 Variability
Variability exists in the reproduction of all movement. It is not possible to
move in exactly the same way more than once. Such variation can mean that
we have great flexibility to interact with our environment. Too much variability
in movement leads to instability and too little variability in movement leads to
rigidity; both situations leading to a decreased ability to interact adaptively
with the environment (Stergiou, &Cavanaugh, 2006).
Implications for practice arise from knowledge of the influence of variability of
movement on the development of motor control for people with disability.
Practically speaking, this can be perceived as a need for physiotherapists to
improve the variety as well as the control of movement for people. For
example; “Practitioners should endeavour to build complexity in the tasks they
give (the people they support), cleverly varying the practice space and
encouraging multiple movement approaches” (Verijken, 2010, p. 1858).
The concept of variability in movement abilities will also relate to a person’s
mobility interaction with differing environments (Tieman et al., 2007). For
example, people may be more independent within their own homes but find
their interaction (mobility-wise) within the environment of school or the wider
community is harder (Palisano et al., 2003). Physiotherapists will need to
discover how a person moves within the many different contexts they will
encounter during their day’s activities if they are to effectively assist them to
participate to their full capability.
Evidence also indicates that variability also occurs more generally in
movement development for children (Darrah, Piper & Watt, 1998).
Identification of times when children might be more ready to change and
develop could assist physiotherapists to better plan intervention. However, to
date we do not know enough about these periods of “transition” to make such
predictions (Sauve & Bartlett, 2010).
Enhancing Participation in Individual and Community Life Activities Practice Guide
13
2.3 Motor learning
“While motor control focuses on understanding the nature and control of
movement already acquired, motor learning focuses on understanding the
acquisition and/or modification of movement” (Shumway-Cook & Woollacott,
2012, p. 21).
Learning is an essential part of assisting people with disability. It is a complex
process involving an important triad of influences of who, what and where:
•
the person (who)
•
the task - skill or activity (what)
•
the environmental context (where).
While adults may be trying to regain function, children often do not have a
vision or feeling for how a movement task should be performed. Their learning
needs to take place within the context of their movement development and
that natural process occurs with maturation over time.
2.3.1 Principles of motor learning
•
Good practising matters
•
Intensity of training matters
•
Using tasks and the environment to optimise learning
•
Making tasks meaningful (salience) enhances the natural plasticity of
the brain.
(Campbell et al., 2006)
2.3.2 Motor learning for people with intellectual disability
People with intellectual disability may often have associated delays in
movement development and difficulties with motor learning and motor control.
Applying principles of motor control theory, physiotherapists can modify or
supplement assessment and intervention approaches for them:
•
learning in natural environments
•
incorporating behavioural techniques into the physiotherapy
intervention chosen for example, using positive reinforcement, and
providing antecedent techniques (for example, cueing by tapping an
object within a task to direct and maintain a person’s attention preferably not a physical cue)
•
providing tasks that have a functional outcome (for example, standing
walking and opening doors to get to lunch).
Enhancing Participation in Individual and Community Life Activities Practice Guide
14
(Campbell et al., 2006)
While many physiotherapists do incorporate elements of motor learning in
their approaches to physiotherapy for people with disability, it can benefit
practice to make those practices more explicit and planned. Ongoing reading
and discussion with peers and supervisors regarding the application of such
theory to specific practice situations will assist physiotherapists to develop
their skills in applying motor learning to their practice.
3. Supporting people to select their own
goals
3.1 Introduction
Specific motor skills are required to access different environments and to
achieve a variety of mobility outcomes at each of the different life stages.
When assisting people with disability and their families, physiotherapists will
need to ascertain the activity and participation needs of the person. Any
impairments or environmental conditions which might create barriers to their
activity and participation need to be considered.
This approach is in line with the guidelines set down in the International
Classification of Functioning (ICF), which was developed by the World Health
Organisation (World Health Organization, 2001). The ICF has advocated for
each person’s right to the achievement of wellbeing.
3.2 Supporting people through major life transitions
The transition to adulthood is a gradual process, rather than a discrete event,
and the length of this process varies for each individual. People with a
disability may require additional time and guidance for moving between
different life stages and/or different community settings. Examples of the
different life stages are childcare, preschool, school, post-school placements,
residential care settings, living/housing options, work and recreational/leisure
activities. At points of transition, the nature and level of available support may
change. Effective transition processes ensure that the needs of a child,
teenager or adult and their family are the primary focus. Typically, these
processes include:
•
starting the planning process early and involving all of the person’s
supports (for example, education, health, community, employment)
•
ensuring that the individual person is kept at the centre of the planning
process
•
establishing clear guidelines for planning (i.e. special requirements,
specified timeframes, roles, responsibilities, key tasks and outcomes)
Enhancing Participation in Individual and Community Life Activities Practice Guide
15
•
supporting family involvement in planning and decision making
•
promoting the sharing of information between the family and the care
or educational setting to allow staff in the new setting to build on the
knowledge, skills and experiences already acquired
•
limiting the number of staff, assessments and forms involved.
Transition can be a difficult time for all involved, and the person with disability
and their family may require additional support, understanding and
counselling. Good communication, planning and support is essential at this
time.
Some useful resources to support transition are:
NSW Government Education Public Schools (transition to school resource)
Broaden Your Horizons (resources to assist with preparing for life after
school)
Youth Disability Advocacy Service (VIC) (resource to support transition to
TAFE or University
3.3 Planning support for people to choose their own goals
Several steps are helpful to consider when supporting people to select their
own goals:
3.3.1 Gather information
Sufficient information from the person and/or their carers needs to be
gathered. This includes what the individual likes to do and considers their
interests and wishes (using person-centred practices).
Some useful resources to support person centred information gathering and
planning are available at:
Helen Sanderson Associates - Person Centred Thinking Tools
Person Centred Planning Resources
3.3.2 Interview collaboratively
Interviews start a collaborative process with a person, parents and/or carers
to create goals. Interviews should be based on a person’s strengths, such as
what is most enjoyable, what they like doing and range from a few questions
(Meade, 2008) to longer routines-based (McWilliams, Casey, & Sims, 2009),
all which lead toward developing meaningful goals for an individual within the
context of their lives.
Enhancing Participation in Individual and Community Life Activities Practice Guide
16
3.3.3 Know the variety of assessment tools available
Physiotherapists need to consider the purpose of the assessment and the
outcomes that the person/family wish to achieve. The results may be used to
measure change over time or be used as a baseline of function.
Physiotherapists will need to review and consider relevant assessment tools
(See Section 4: Assessment of movement abilities and constraints).
3.3.4 Consider factors influencing skill acquisition and
maintenance
The International Classification of Functioning advises that environmental
factors can affect all components of functioning and disability. These factors
occur within different levels of an individual’s personal, functional and general
environments (World Health Organization, 2001). Environmental factors will
start at a personal level but extend from there. It is important to consider the
impact of these factors when setting goals with the person with disability.
3.3.5 Determine which resources will be needed
The resources needed for a person within all the levels of their environment
(as above) are specific to that environment and depend on the outcomes
wanted by people and their carers and families. For example, physiotherapists
may be seeking to assist people to maintain current function, prevent
deterioration of skills or prepare for a new environment or transitional phase.
When considering resources required, it is important to include mainstream
services and community supports as key resources that can assist people to
achieve their goals.
Determination of the resources necessary can be accomplished by:
•
Identifying the skills required to achieve the goals which the
person/carers have set.
•
Asking if there are specific resources, funding or liaisons with other
disciplines/providers needed to support that desired goal attainment.
•
Identifying the resources required to perform the skills. For example, it
may be necessary to support a person’s body structure through the
application of splints or orthoses to aid their ability to explore their
environment, participate in physical activity or interact with their
community and peers (Centre for Developmental Disability Studies
(CDDS), 2003).
Enhancing Participation in Individual and Community Life Activities Practice Guide
17
•
Identifying funding issues related to the purchase or loan of required
equipment. This will require knowledge of different agencies and their
policy, procedures and forms (see Section 8).
•
With the person’s consent liaising with other team members regarding
lifestyle and functional goals over a variety of settings and
environments. For example it may be important to liaise with an
occupational therapist for wheelchair mobility in the community, or an
orthotist/podiatrist for braces/orthotics for school. The involvement of
other disciplines including speech pathology, behaviour support and
psychologists is a critical component of the team process.
3.3.6 Consider different service delivery models
It is important that specialist supports are provided in the person/families'
natural environments, where they are incorporated into every-day tasks and
routines. This includes integrating specialist supports into a person’s life,
complementing their life in a functional manner rather than treating it as an
isolated event. Wherever possible, exercise programs should be simple,
functional and activity-based. Interventions should aim to be non-invasive to
family life and able to be incorporated into the person’s daily activities. Key
service delivery models are described in the practice guide that supports the
common core standard Service Delivery Approaches.
Decisions about which form of service delivery is most suitable for any
particular situation need to be made in consultation with people with disability
and their carers and families. At times it will be necessary to use a mixture of
the different models of service delivery (See Table 3.1 below).
Table 3.1
Different styles of service delivery in physiotherapy for people with disability
Direct therapy may involve assessment of mobility, equipment or training
needs, provision of equipment, and recommendations regarding safe
movement and transfers (Bundy et al., 2008)
Indirect therapy may involve providing the carers with a program of
therapeutic strategies to carry out with the person (Arlin & Bundy, 2008)
Consultative therapy may involve altering the environment or day to day
activities to increase safety and function (e.g. a falls prevention program)
(Bundy et al., 2008)
Enhancing Participation in Individual and Community Life Activities Practice Guide
18
3.3.7 Developing programs with people and/or their carers
If a person and their family feels empowered to develop their own goals they
are more likely to follow through with these goals (Bundy et al., 2008).
Physiotherapists may need to undertake a range of different activities when
developing physiotherapy interventions for people with disability. Skills and
ideas of the family and carers should be incorporated into all decision-making
around goals, strategies and outcomes. Indeed, caregivers may often have
more appropriate ideas than therapists do (Novak, Cusick, & Lannin 2009). It
is often difficult to develop programs, which are specifically exercise based;
therefore the primary aim of the therapist is to assist the support network of
the person with disability to set up opportunities to create meaningful
activities, which can be completed in natural environments.
When developing physiotherapy interventions for people with disability,
physiotherapists need to:
•
spend time with the person and caregivers to identify the strengths in
their support network that can assist with goal setting, program design
and program implementation
•
develop parameters in collaboration with person/parents/carers
(Hickman et al., 2011)
•
limit goals of an intervention. Research has shown that most families
can only work on 2 – 3 goals at one time (Novak, Cusick, & Lannin,
2009)
•
take into account issues for the person which could influence motor
skill acquisition
•
conduct an assessment to establish a baseline of performance
•
identify and validate the motor skills that the person already has
•
know what motor learning strategies can be used within a functional
activity
•
consider all of the person’s environments and work with the person to
choose which aspects of the program can be incorporated in to which
environment. Functional settings ensure maximum impact of skill
development in that setting (Bundy et al., 2008), create opportunities
for high volume, task specific practice in a context which is meaningful
for the person (Hickman et al., 2011)
•
provide the program in a format that is understood and easily
implemented by the people carrying out the program, for example;
-
written instructions with visual cues (Novak et al., 2009)
-
use of photo and video footage and
-
visiting PhysiotherapyExercises.com which may contain some
appropriate exercises.
Enhancing Participation in Individual and Community Life Activities Practice Guide
19
A useful reference to assist physiotherapists with the development of
intervention for people with intellectual disability is:
Carr, J. H. (2010). Neurological rehabilitation: Optimising motor performance.
(2nd ed.). Edinburgh; New York: Churchill Livingstone.
4. Assessment of movement abilities and
constraints
4.1 Assessing movement skills through the lifespan
Each individual’s movement system develops, adapts and changes across the
lifespan. Movement enhances a person’s quality of life by enabling them to
explore the world around them and participate in activities along with their
peers. When difficulties in moving arise for children and adults with disability,
physiotherapy can assist by analysing the development of, and changes in, an
individual’s movement abilities.
During infancy and young childhood, physiotherapists may need to analyse
gross motor skills such as sitting, walking, running, jumping, ball skills etc., to
understand how a movement is performed and the motivations behind
movement, including interests and goals. Children develop self-perceptions by
acting on the world through exploring, falling, and failing. Decreased activity
levels in childhood may predispose children to being overweight and limit skill
development, eventually limiting lifetime choices for enjoyment in leisure and
sport pursuits (Logan et al., 2012). A recent study confirmed that children with
cerebral palsy spend significantly less time in activities which require
movement than their typically developing peers (Bjornson et al., 2007). Welldesigned and supported exercise programs for school aged children with
cerebral palsy can produce significant functional and participation outcomes,
although limited opportunities could adversely impact these gains (Verschuren
et al., 2007).
Assessments can have different purposes, for example, to evaluate, diagnose
and predict function. It is important that the purpose for the assessment is
determined with the person/family/caregiver or guardian before starting the
process of assessment. The information gained should be useful and be able
to measure the goals selected by each person and their family.
4.2 Interactive ‘Dynamic assessments’
Areas of need or concern for the person and their carers should be identified
prior to any assessment being conducted. Functional goals that are important
to the person with disability and their carers need to be identified, and form
the basis for assessment and clinical intervention. These goals can then be
used to guide the assessment process, informing decision-making around the
Enhancing Participation in Individual and Community Life Activities Practice Guide
20
type/s of assessment that physiotherapists will conduct, and which, if any
formal assessment tools are used. The Canadian Occupational Performance
Measure (COPM) is a useful tool for supporting the person and their carers to
identify functional goals that are meaningful and important to them. Goal
Attainment Scaling can be used to support a person to set goals to work
towards and quantifies changes over time towards those goals.
Table 4.1: Goal setting tools that can be used when supporting people with an
intellectual disability.
Name
Purpose of
Admin
time
Valid for
people
with
Intellectual
Disability
(Y/N)
Reliable
for people
with
Intellectual
Disability
(Y/N)
Accreditation
required
(Y/N)
of tool
tool
Canadian
Occupational
Performance
Measure
(COPM)
Explores
20 to 40
how well
minutes
the person
perceives
that they
perform
the task
and how
satisfied
the person
is with their
performan
ce of the
task.
Y when
scored
using the
support of
a family
member,
carer or
proxy
Y when
scored
using the
support of
a family
member,
carer or
proxy
N
Goal
Attainment
Scale (GAS)
Supports a
person to
set goals
to work
towards
and
quantifies
changes
over time
toward
those
goals
Up to 45 Y (as can
mins
be
completed
by proxy)
Y (as can
be
completed
by proxy)
N
For more information on COPM and GAS see Appendix 1.
Enhancing Participation in Individual and Community Life Activities Practice Guide
21
Support for the person with disability begins when interaction begins. Dynamic
assessment uses an interactive approach to embed assessment within the
whole of the intervention process. Testing problem-solves movement issues
of concern. Intervention and then retesting (reviewing) can then be used to
focus in on the person’s response, thereby revealing potential for improved
and more functional movement. Dynamic assessment “involves some sort of
instructional interaction between the assessor and the individual being
assessed. The purpose is to reveal learning potential rather than (just)
measure performance” (Law & Camilleri, 2007, p. 271).
Assessment tools are used in conjunction with interviews, observations and
input from many different sources. Formal or informal interviews and
questionnaires can be used with the person, their family, caregiver, teachers,
specialists and direct care staff. Assessment is part of intervention and should
take into account the many variables, which may affect performance and
potential. All assessments should provide the physiotherapist with meaningful
information to assist with:
•
diagnosis
•
planning person-centred support options
•
identifying and clarifying goals and
•
measuring outcomes.
Observation and reporting from the person, their family and/or carers, use of
checklists and questionnaires are all valid ways of gaining information as well
as the use of formalised tests.
Enhancing Participation in Individual and Community Life Activities Practice Guide
22
4.3 Deciding on the most appropriate assessment tools
Assessment tools are used to discriminate, predict and evaluate motor
development. Standardised assessment tools have a consistent set of rules
for administration and scoring to ensure that all individuals are assessed
under the same conditions to ensure valid results. Standardised assessment
can be either norm-referenced (compare performance to the normal
population), criterion-referenced (compare performance against set criteria) or
both.
When choosing an assessment it is important to consider the purpose of the
assessment and the characteristics of the assessment tool, such as:
•
the theoretical constraints behind the tool
•
the population the tool was normed against
•
the ease of administration and scoring
•
the tool’s availability
•
its reliability and validity.
Table 4.2 outlines a list of assessment tools that may be considered when
assessing the movement skills of a person with a disability.
Enhancing Participation in Individual and Community Life Activities Practice Guide
23
Table 4.2: Assessment tools that may be considered when assessing the movement skills of a person with a disability
Name of the
tool
Purpose of the tool
Admin
time. (App.
Guide only)
Valid for people with
intellectual disability
(Y/N)
Reliable for people
with intellectual
disability (Y/N)
Accreditation
Alberta
Infant Motor
Scale
(AIMS)
Used to assess and monitor motor skill
development of infants at risk of motor
delays. Measures skills from 40 weeks
gestation to 18 months of age or
independent walking
15-20
mins
Only for infants who
do not have a
diagnosis that
explains their motor
delay
Only for infants who
do not have a
diagnosis that
explains their motor
delay
N
Berg
Balance
Scale (BBS)
Evaluates a person’s functional balance
when performing activities that are
required to safely and independently
function in their home and community
15-20mins
No evidence in
literature
Y
N
- a modified paediatric version is also
available
Enhancing Participation in Individual and Community Life Activities Practice Guide
24
(adults)
No evidence in
literature (children)
Required
(Y/N)
Admin
time.
(App.
Guide
only)
Valid for people with
intellectual disability
(Y/N)
Reliable for people
with intellectual
disability (Y/N)
Accreditation
Measures an array of motor
skills between the age of 4
years and 21 years and 11
months
Short form
15 – 20
minutes
Preliminary Y
Not established
N
Functional Independence
Measure
Measure of the severity of
disability and designed to
track changes in a person’s
function during inpatient
rehabilitation
45
minutes
Not established
Not established
Y
Functional Mobility Scale
Assesses functional mobility
in children with cerebral
palsy, taking into account the
range of assistive devices a
child might use.
10-15mins
Likely but not
established in the
literature
Likely but not
established in the
literature
N
Name of the tool
Bruininks Oseretsky test of
motor proficiency (2nd
edition)
Purpose of the tool
Required (Y/N)
Complete
form 45 –
60
minutes
Enhancing Participation in Individual and Community Life Activities Practice Guide
25
Name of the tool
Purpose of the tool
Admin
time (app.
guide
only)
Valid for people with
intellectual disability
Reliable for people
with intellectual
disability (Y/N)
Accrediation
required (Y/N)
Gross Motor Function
Classification System
(GMFCS)
Describes the gross motor
function of children and
youth with cerebral palsy
on the basis of their selfinitiated movement with
particular emphasis on
sitting, walking, and
wheeled mobility.
10
minutes
Y if the person has
cerebral palsy
Y if the person has
cerebral palsy
N
Technically this scale was
designed to be a
classification system and
not an assessment tool but
it gives an indication of the
child's capacity for
community ambulation.
Enhancing Participation in Individual and Community Life Activities Practice Guide
26
Name of the tool
Purpose of the tool
Admin
time (app.
guide
only)
Valid for people with
intellectual disability
Gross Motor Function
Measure (GMFM)
Measures change in gross
motor function over time in
children (up to 18 years)
with cerebral palsy. The
full version GMFM 88 can
be used to measure
change in motor skills in
individuals with Down
syndrome.
45-60
mins
Y for children with CP Y for children with
(GMFM-88 and
CP (GMFM-66 more
GMFM -66)
valid than GMFM88)
Y only for children
with Down syndrome Y only for children
(GMFM 88 only)
with Down
syndrome (GMFM
No evidence for other
88 only)
diagnostic categories
of intellectual
Not yet established
disability
in other diagnostic
categories of
intellectual disability
To evaluate the motor
skills of a child or young
person with an intellectual
disability (who does not
have a motor disability) if
their motor skills are below
what is expected of a
typically developing 5 yr
old. The reliability and
validity for this population
has not been established
Enhancing Participation in Individual and Community Life Activities Practice Guide
27
Reliable for people
with intellectual
disability (Y/N)
Accrediation
required (Y/N)
N
Name of the tool
Purpose of the tool
Admin
time (app.
guide
only)
Valid for people with
intellectual disability
Reliable for people
with intellectual
disability (Y/N)
Accreditaion
required (Y/N)
HiMAT and revised
HiMAT
Quantifies the physical ability of
young people with traumatic
brain injury (TBI). The revised
HiMAT is used where there is
no access to stairs.
1530mins
Not established
Not established
N
Movement
Assessment
Battery for Children
– Second Edition
Identifies children between 3 –
16 years of age at risk of mild
to moderate motor impairment.
Provides qualitative and
quantitative data about child’s
performance of age appropriate
tasks
30 mins
Not established
Not established
N
Neuro Sensory
Motor
Developmental
Assessment
(NSMDA)
Test of gross and fine motor
skills for children from one
month to six years of age
15- 60
mins
Not established
Not established
N
Enhancing Participation in Individual and Community Life Activities Practice Guide
28
Valid for people with
intellectual disability
Reliable for people
with intellectual
disability (Y/N)
Accreditaion
required (Y/N)
Identifies neurological issues in 30-50
infants which may lead to
mins
cerebral palsy and other
developmental disabilities.
Not applicable
Not applicable
Y
Paediatric
Evaluation of
Disability Inventory
For children aged 6 months to
7.5 years measures functional
skill development and the level
of independent performance of
functional activities
Y for mobility domain
for children with CP
Not established
N
Toddler and Infant
Motor Evaluation
Used to identify children from 4 15 – 45
months to 3.5 years with motor minutes
delay and to evaluate changes
in their motor skills over time
Not established
N
Name of the tool
Purpose of the tool
Prehtl General
Movements
Assessment
Admin
time (app.
guide
only)
20 – 60
mins
Not known for
intellectual disability
Not established
Enhancing Participation in Individual and Community Life Activities Practice Guide
29
Name of the tool
Purpose of the tool
Admin
time (app.
guide
only)
Valid for people with
intellectual disability
Reliabile for people
with intellectual
disability (Y/N)
Accrediation
required (Y/N)
WeeFIM
Evaluates a child’s functional
abilities and their limitations
when performing activities of
daily living. Can be used for
children without a disability
from 6 months to eight years,
and for children with a
disability from 6 months to 12
years.
20 mins
Y for children with
developmental
disabilities and
mental skills younger
than 7 years
Y for children with
developmental
disabilities and
mental skills
younger than 7
years
Y
More detail on some of these assessment tools is located in Appendix 2.
Enhancing Participation in Individual and Community Life Activities Practice Guide
30
4.4 Assessing and monitoring physical constraints on
movement
The physiotherapist’s role will involve assessment (over one or several
sessions) of the musculoskeletal constraints on an individual’s movement,
development of intervention plans to maximise function and access to, and
participation in, the community.
4.4.1 Muscle length
Length-related changes in soft tissue affect the ability of muscle to generate
tension and may affect human movement. Changes in muscle length can
occur following immobilisation, due to pain, and in people with neurological
impairments such as cerebral palsy, acquired brain injury, neuromuscular
diseases etc. Muscle length changes can also be associated with
orthopaedic problems such as fractures and sports injuries.
Hof (2001) reports that when muscle stiffness is present, muscles remain
excessively shortened most of the time. Consequently the number of
sarcomeres is reduced and a contracture develops when the muscle fibres
shorten permanently. A second type of contracture occurs; normal muscle
lengthening and normal bone growth also become affected as a result of the
impairment of permanently shortened muscle fibres and decreased numbers
of muscle. Such muscle impairments can therefore tend to increase as
children grow.
4.4.2 Understanding and measuring muscle tone
Muscle tone is the resistance (or stiffness) felt in muscles as they are being
passively lengthened (Pearson & Gordon, 2001). Assessment and
management of muscle tone is generally not done in isolation of movement
related interventions. It is however useful to know how muscle tone is defined
and measured and what the causes of altered tone can be. These help
physiotherapists to know if, and when, to refer for appropriate interventions,
for example, Botulinum Toxin Type A, or understand reports that are written
by tertiary facilities about those interventions.
Hypertonia
Hypertonia is abnormally increased resistance to externally imposed
movement about a joint. It can be caused by contracture (Vattanaslip, Ada, &
Crosbie, 2000), spasticity, dystonia, rigidity or a combination of these (Sanger
et al., 2003). It is important to determine the cause of hypertonia, because it is
the cause that needs to be treated, not the hypertonia itself.
a) Spasticity
Enhancing Participation in Individual and Community Life Activities Practice Guide
31
Spasticity is a velocity-dependant increase in tonic stretch reflexes with
exaggerated tendon jerks resulting from hyperexcitability of the stretch reflex
(Lance & Burke, 1974).
Therefore spasticity has one or both of the following characteristics (Sanger et
al., 2003):
•
the resistance to passive movement increases with the speed of
stretch and varies with the direction of joint movement
•
resistance to passive movement rises rapidly above a threshold speed
or joint angle.
Spasticity can be measured using:
•
Modified Tardieu Scale - This test is better to differentiate between
spasticity and contracture (Patrick & Ada, 2006) . For more information
see Rehab measures: Tardieu Scale / Modified Tardieu Scale or refer
to Haugh reference (Haugh, Pandyan, & Johnson, 2006).
•
Modified Ashworth Scale - See Modified Ashworth Scale
information– this test relates more to muscle tone and does not
differentiate between neural factors and intrinsic muscle stiffness
(Patrick & Ada, 2006). Therefore spasticity may appear higher when
using the Modified Ashworth Scale compared to the Modified Tardieu
Scale. Consequently the same scale should be used over time and
where possible by the same assessor.
•
Australian Spasticity Assessment Scale –this scale has been
developed by therapists at Princess Margaret Hospital, Perth (released
2009). It has been found to be reliable and valid in the measurement of
spasticity (Love, 2009). See WA health - ASAS scoring form for further
information.
The following website provides useful information regarding hypertonia and
spasticity.
The Cerebral Palsy Alliance - Spasticity
The Children's Hospital at Westmead - Spasticity
b) Dystonia
Dystonia involves involuntary sustained or intermittent muscle contractions
causing twisting and repetitive movements, abnormal postures or both
(Steinbok, 2006). Dystonia is classified by cause (primary or secondary
dystonia), by age at onset (early onset or late onset), and by distribution
(focal, segmental, multifocal, generalised and hemidystonia).
For detailed information on dystonia see The Dystonia Society - Dystonia: A
Guide to Good Practice
Dystonia can be measured using the Barry Albright Dystonia Scale (BAD) 5
Point scale for all body parts.
Enhancing Participation in Individual and Community Life Activities Practice Guide
32
For more information see The Children's Hospital at Westmead - Dystonia .
For more information on dystonia, one of the movement types seen in
dyskinetic cerebral palsy see Cerebral Palsy Alliance: Information on
dyskinesia .
c) Rigidity
Rigidity occurs where there is resistance to passive movement at very low
speeds of movement, and it does not depend on the speed of passive
movement and does not have a speed or angle threshold (Sanger et al.,
2013):
The features of rigidity are:
•
resistance to movement in both directions
•
the limb does not tend to return to a particular position
•
active movement in other muscle groups doesn’t cause involuntary
movement at the rigid joint, however rigidity can increase.
Differentiating the different types of hypertonia:
The Hypertonia assessment tool can be used for those aged between 4 and
19 years to help classify the type of hypertonia as dystonia, spasticity or
rigidity. This can assist with decision making around intervention. See
Appendix 3 for more information on the Hypertonia Assessment tool.
d) Hypotonia
Hypotonia means decreased resistance to passive movement (Ada &
Canning, 2009), arising due to problems with the brain, spinal cord, nerves or
muscles (US Library of Medicine, 2013). The characteristics most frequently
observed in people with low muscle tone are decreased strength, hypermobile
joints, and increased flexibility (Martin et al., 2007). There is no standardised
assessment tool available for the measurement of hypotonia. Some reports
consider that hypotonia should not be categorised separately from weakness
(Ada & Canning, 2009).
4.4.3 Bony and joint deformity
Immobilisation and/or abnormal pull of muscles on bones can lead to bony
and joint deformities. Postural deformities in non-ambulant children with
cerebral palsy, include scoliosis, pelvic obliquity, windswept hip deformity and
hip subluxation/dislocation (Porter Michael, & Kirkwood, 2007). Pelvic
obliquity decreases sitting tolerance, and causes pain from pelvic
impingement on the thorax. There may be resultant cardiopulmonary
complications (Tsirikos & Spielmann, 2007). Hypertonia or contractures seen
in cerebral palsy may lead to bony malformations that interfere with function
(e.g. femur end rotation) or may reduce muscles actions by changing the lever
arm (e.g. ankle varus) (Hof, 2001).
Enhancing Participation in Individual and Community Life Activities Practice Guide
33
Cervical spondylotic myelopathy, myeloradiculopathy and atlantoaxial
instability can occur in a person with cerebral palsy. Therefore any person
demonstrating a functional deterioration or insidious change in their
neurological status should be immediately referred for a detailed screening to
rule out developing upper cervical instability (Onari et al., 2002; Tsirikos et al.,
2003). Spinal cord complications are not limited to the cervical spine area.
Signs of complications include (Sommerville & Morgan, 2009):
•
change/loss of hand function, especially fine movements, e.g. doing up
buttons
•
worsening of mobility e.g. walking
•
increase in falls or unsteadiness
•
change in bowel and/or bladder control
•
changes in sensation/feeling e.g. numbness.
People should:
•
see their own GP regularly and tell them about any changes
•
ask for medical records of neurological and functional assessments to
be made available to their GP
•
ask their GP to check regularly (yearly) their spinal cord function:
continence (bowel/bladder function); mobility (walking, ability to
transfer); fine movements (hand function)
•
ask their GP for urgent assessment and to consider referral to a
specialist if anything has changed (prompt radiological investigation is
frequently recommended).
(Sommerville & Morgan, 2009)
People with Down syndrome are also at risk of developing cervical spine
instability (Mik et al., 2008). Therefore if any pain or loss of function is evident
they should undergo an immediate medical review.
4.4.3.1 Scoliosis
Driscoll and Skinner (2008) define scoliosis as a curvature in the coronal
plane of greater than 10 degrees. It is almost always associated with a sagittal
alignment abnormality such as kyphosis, lordosis or a rotational component
and may be idiopathic, congenital or neuromuscular in origin. The cause of
idiopathic scoliosis is unknown. Neuromuscular scoliosis may be due to
asymmetric weakness, spasticity, abnormal sensory feedback or mechanical
factors (e.g. pelvic obliquity or unilateral hip dislocation).
Progression of scoliosis occurs following the initial flexible postural
abnormality due to unequal compression of the vertebrae which leads to
unequal growth, which in turn leads to compression on the spinal structures
and the cycle begins again.
Enhancing Participation in Individual and Community Life Activities Practice Guide
34
Driscoll and Skinner (2008) also report that neuromuscular scoliosis may lead
to:
•
functional deficits (e.g. decreased sitting balance and reduced
availability of the arms for functional tasks as they are being used for
balance)
•
reduced neck, shoulder and spinal range of movement
•
skin breakdown
•
pain
•
reduction in lung volumes and diaphragmatic heights as the scoliosis
becomes more severe
•
pulmonary hypertension and right ventricular hypertrophy when it is
beyond 100 degrees.
It is important to evaluate “pelvic obliquity, shoulder girdle asymmetry, waist
crease asymmetry, rib prominence, or asymmetry with spinal flexion, leg
length discrepancy, fixed foot deformity, hip dislocation or subluxation, and
limitation of spinal or extremity range of motion” (Driscoll & Skinner, 2008, p.
165-166).
Scoliosis is measured using the Cobb Method, a radiological method that is
outlined by Driscoll and Skinner (2008). It is classified as:
•
mild if Cobb angle is 10 – 40 degrees
•
moderate if Cobb angle is 40 – 65 degrees
•
severe if Cobb angle is greater than 65 degrees.
Furthermore, curves are also named according to the location of the apex
vertebrae involved and as right or left based on the predominant convexity.
They are classed further as C-shaped or double. Treatment of idiopathic
scoliosis usually involves spinal orthosis (Driscoll & Skinner, 2008).
The treatment of neuromuscular scoliosis (Driscoll & Skinner, 2008) is
controversial for non-operative treatments. It is considered that bracing does
not stop progression of the curve however bracing is indicated to improve
postural control and seating. Surgical intervention is considered where there
is a progressive deformity that compromises the ability to sit or stand, cardiac
or pulmonary function, skin integrity or personal care, or where there is pain.
If the person with disability, their family or carers are concerned that they may
have a scoliosis they are advised to discuss this with their family doctor.
Other bony and joint issues that may need to be addressed include:
4.4.3.2 Head Shape
Deformational Plagiocephaly (also referred to as positional plagiocephaly)
occurs when a baby’s head shape is misshapen (asymmetrical). It can be
Enhancing Participation in Individual and Community Life Activities Practice Guide
35
caused by back sleeping, muscular torticollis, prematurity or in-utero
constraint. In particular, babies who spend extended periods in one position
are at risk of developing Deformational Plagiocephaly.
Physiotherapists need to be aware that babies presenting with more severe
asymmetrical head shapes may have the condition called craniosynostosis,
resulting from premature fusion of one or more of the skull sutures on one
side of the head. Medical tests and diagnosis will determine the case for each
baby.
The Royal Children's Hospital Melbourne provides a health practitioner
guide: Information for healthcare professionals - Deformational Plagiocephaly
which describes in detail the presentation of deformational plagiocephaly and
its difference from the more severe condition of craniosynostosis.
Physiotherapists need to be aware of the presentation of both conditions and
the best approaches for their management.
Other useful sites to source advice regarding the presentation and
management of Plagiocephaly include:
Plagiocephaly - Raising Children Network
Plagiocephaly in Babies - Baby Center
Babies who spend extended periods in one position are at risk of developing
deformational plagiocephaly.
Enhancing Participation in Individual and Community Life Activities Practice Guide
36
4.4.3.3 Joint Hypermobility
Joint hypermobility is present if range of movement is excessive for age, sex
and ethnic group (Ferrari et al., 2005). It may result from bony dysplasia,
collagen defect, hypotonia and injury. It can cause joint injury and pain,
arthritis, delayed development, poor gross motor skills, low bone density, cost
to healthcare and quality of life, and a reduction in community participation
(Pacey, 2008).
Hypermobility can be assessed using the Beighton Scale. This scale has
been found to be reliable and valid (Boyle, Witt, & Reigger-Krugh, 2003). The
Lower Limb Assessment Scale is a tool which specifically looks at the lower
limb (Ferrari et al., 2005).
Management of hypermobility can include:
•
building active protection of joints with muscle strength and endurance,
motor control, balance and proprioception, and core stability
•
intermittent passive protection of joints
•
pain relieving measures as required.
4.4.3.4 Musculoskeletal conditions of the lower limb
Assessing foot posture
This area of support describes the assessment of foot posture, referrals for
intervention if appropriate, prescription of orthoses, assistance to procure
orthoses, and the provision of advice on appropriate footwear. A useful tool to
assess foot posture is the Foot Posture Index. Consider:
•
the child’s age – be particularly mindful that the fat pad in the arch of
the foot disappears by four or five years of age (Australian
Physiotherapy Association (APA), 1996)
•
joint range of movement restrictions and stiffness/hypermobility
•
motor control and muscle strength
•
gait
•
muscle tone, spasticity
•
level of mobility, transfer ability and activity level.
Assessment of In-toeing
Physiotherapists may be asked to provide supports to a child because they
are ‘in-toeing’. In-toeing is quantified by the foot progression angle. It is
important to determine whether the child is falling within the normal range for
their age.
Enhancing Participation in Individual and Community Life Activities Practice Guide
37
If they are not, consider if the child has neurological problems. If the child has
no neurological problems, consider whether they have excessive femoral
anteversion, internal tibial torsion or metatarsus adductus (Stricker, Stricker, &
Sama, 2001). This Intoeing factsheet contains useful information for therapists
and parents.
Excessive femoral anteversion can be reflected clinically by measuring
internal (IR) and external (ER) hip rotation. Hip internal rotation >70 degrees
(or IR at least 30 degrees greater than ER) indicates excessive anteversion.
95% of in-toeing due to excessive femoral anteversion resolves
spontaneously by 8 years. Surgical de-rotation is extremely rare and is usually
undertaken after the age of 8 years in extreme cases (Stricker et al., 2001).
Internal tibial torsion is estimated by measuring the thigh foot angle in prone
with the knee flexed to 90 degrees and ankle in neutral dorsiflexion. A
goniometer is used to measure the angle between the long axis of the thigh
and longitudinal axis of the heel. The normal thigh foot angle by walking age
is 0 – 30 degrees (indicating external rotation), <-10 degrees indicates internal
tibial torsion.
Physiotherapists will need to obtain orthopaedic input if the internal tibial
torsion is asymmetrical, severe (<-15 degrees thigh-foot angle) or if it is
associated with progressive bowleg syndrome. Surgical de-rotation is usually
only undertaken in rare cases of severe internal tibial torsion after the age of 5
years (Stricker et al., 2001).
Metatarsus adductus is defined as medial subluxation of tarsometatarsal
joints with adduction and inversion of all 5 metatarsals. The hind-foot is in
neutral or valgus. Clinically the medial border of the foot is concave, with a
skin crease at the tarsometatarsal level. The lateral border is convex.
Adductor hallucis is tight and there is decreased plantarflexion.
To measure metatarsus adductus (Stricker et al., 2001):
•
Check lateral borders of the foot.
•
Use Bleck’s classification Orthobullets.com - Metatarsus Adductus.
•
The longitudinal axis should bisect between the 2nd and 4th toes. Mild
bisects the 3rd toe; moderate bisects between 3rd and 4th toes; severe
bisects between the 4th and 5th toes.
Ninety percent respond spontaneously by 5 years.
Physiotherapists should consider medical review if they or the person/family
are concerned. It is useful to provide details (with appropriate consent) to the
medical practitioner on the outcomes of assessment to assist them in
determining an appropriate course of action.
Enhancing Participation in Individual and Community Life Activities Practice Guide
38
Genu Varum/Genu Valgum
Physiotherapy supports may be sought because a child’s is “knock kneed”
(genu valgum) or “bow legged” (genu varum). Physiotherapists should
consider the person’s age. Musculoskeletal development involves a gradual
change of lower limb alignment. As the musculoskleletal system matures, a
natural progression from varum to valgus occurs and is then finalised in a
smaller degree of valgum at maturity. A newborn will typically exhibit as much
as 15 degrees genu varum which resolves by 20 months of age. Between 2.5
– 5 years as much as 15 degrees genu valgum develops (knock knees). The
lower extremities achieve 5 – 10 degrees of genu valgum by 8 years of age,
which then remains stable until skeletal maturity (Stricker et al., 2001).
When assessing a child in standing it is important that their knees are
extended and the patella rotated to the anatomic position, otherwise rotational
deformities may be confused with varum deformities. A supine position can
allow control for knee flexion and rotation when examining alignment.
Physiotherapists should refer for medical review if the lower extremity
alignment does not follow the natural progression outlined above, or if
alignment is asymmetrical, or if the physiotherapist or the parents/carers are
concerned.
Hip Surveillance
Hip surveillance of people with cerebral palsy and like conditions is important.
The relative risk of hip displacement is directly related to the Gross Motor
Function Classification System (GMFCS) level. Children should be referred
for hip surveillance when cerebral palsy is identified. Hip surveillance is the
process of identifying and monitoring the critical early indicators of
progressive hip displacement and can include passive range of motion,
subjective reports of clicking, soft signs, sitting posture, leg length difference.
See the links below for the guidelines on hip surveillance:
Australian Hip Surveillance Guidelines for children with cerebral palsy 2014
Australian Hip Surveillance Guidelines for children with cerebral palsy booklet
2014
Sciatica
Sciatica is caused by irritation of the L5-S1 nerve root. Causes of sciatica
include acute nerve root compression from prolonged sitting postures, leg
length discrepancies, pelvic/ sacroiliac joint asymmetries and pelvic muscle
weakness or imbalances/instability.
A detailed assessment includes reviewing the person for potential red flags
that need medical review, posture assessment, thoracolumbar, lumbosacral
and hip range of motion testing, reflexes, sensation and strength testing, as
well as special tests such as the straight leg raise test.
Enhancing Participation in Individual and Community Life Activities Practice Guide
39
Management includes functional training to correct deficits in posture and gait,
exercises to improve range and strength, seating and sleeping posture
assessment and assessment and education around appropriate assistive
devices. There is moderate level evidence to suggest that these therapies
opposed to bed rest are more superior (Dahm et al., 2010).
4.4.3.5 Musculoskeletal conditions of the upper limb
An individual’s use of their upper limb and hands can be affected by many
factors including: neurological problems (such as cerebral palsy, increased
muscle tone -spasticity, or ataxia); associated problems (such as
hydrocephalus in spina bifida); muscle weakness (in conditions like Duchenne
muscular dystrophy); cognitive functioning (when a client has a limited
understanding of the task); motor planning problems (where the individual
finds it hard to plan and organise what they want to do); delays in language
development (which can affect understanding and planning of the task);
biomechanical restrictions and learned patterns of movement.
Physiotherapists can work with occupational therapists to assess issues of the
hand, wrist and forearm. Physiotherapists can assist with diagnosing muscle
weakness, biomechanical restrictions and pathologies of the hand, wrist and
forearm. Pathologies that may arise and require assessing include scapholunate dissociation post a fall once a fracture has been excluded, testing and
management for De Quervain's tenosynovitis, impingement of the wrist,
triangular fibrocartilage complex tears, carpal tunnel syndrome and
intersection syndrome. Causes of these pathologies include prolonged use of
mobility aids and repetitive hyperextension stresses, which are common in
heavy transfers.
Physiotherapists will also need to consider if task modification and/or medical
and orthopaedic reviews are indicated.
The following conditions may be seen more often as people with disability
age. Long term use of a wheelchair to mobilise may also predispose people
with disability to repetitive strain injuries of their upper limbs.
Glenohumeral Dislocation/ Subluxation
The glenohumeral joint is the most mobile and unstable joint in the body with
the glenoid fossa covering only 20% of the humeral head. Glenohumeral
dislocations can occur anteriorly, posteriorly, or inferiorly, often with a labral
tear as the inferior glenohumeral ligament, the main static stabiliser of the
humeral head in the abducted position, is attached to the labrum. Most at risk
of glenohumeral dislocation and a labral tear are those people who have
hypermobile joints or need to perform repetitive overhead movements.
Management of hypermobility and labral tears can include correctly assessing
direction of instability, assessing the inclusion or exclusion of a muscle tear
and establishing a comprehensive shoulder rehabilitation program to increase
the stability of the joint (Abrams & Safran, 2010).
Enhancing Participation in Individual and Community Life Activities Practice Guide
40
Glenohumeral impingement
Glenohumeral impingement occurs from repeated compression of the sub
acromial contents; encroachment of the acromion, coracoacromial ligament,
and coracoid process which produces inflammation of the tendons and
subacromial bursa, which further reduces the space beneath the
coracoacromial arch.
Most common causes of glenohumeral impingement include congenital
anomalies such as a prominent anterior acromion, and bony spurs from under
the acromion or arising from the acromioclavicular joint. Other possible
causes are an imbalance between the rotator cuff muscles and deltoid
strength, which can result in excessive superior movement of the humeral
head causing impingement of the subacromial structures. People at most risk
of glenohumeral impingement include those with prolonged or improper use of
mobility aids and those using their arms excessively above shoulder height.
Management of glenohumeral impingement includes unloading the cause of
the subacromial compression. This includes correctly assessing the cause of
the impingement, postural retraining, manual therapy (Bang & Deyle, 2000),
and promoting muscular strength, endurance and motor control (Faber et al.,
2006).
Tendinopathy
Tendinopathy occurs when there is an environment of chronic inflammation
due to the muscle repair process continually interrupted by further tensile
forces beyond the load bearing limit of the tendon. Areas where tendinopathy
can occur include the forearm extensors and flexors, the thumb musculature
and at the shoulder. An example of a tendinopathy is supraspinatus
tendinopathy. Supraspinatus tendinopathy usually follows impingement or
overuse and involves a degenerated supraspinatus tendon. Often
accompanying supraspinatus tendinopathy is a subacromial bursitis as the
supraspinatus tendon forms the core part of the floor of the bursa. Shoulder
tendinopathy, and in particular biceps brachii tendinopathy is the most
commonly reported pathology in wheelchair users (Finley & Rodgers, 2004).
Management of tendinopathy and associated bursitis includes assessment of
the appropriate area to identify the affected tendon, inflammation
management, joint mobilisation and muscle re-education via strength and
endurance conditioning. Progressive eccentric strength training is one of the
most common and effective conservative treatments for tendinopathy (Kaux et
al., 2011).
Rotator cuff muscle pathologies
The rotator cuff comprises four muscles - supraspinatus, infraspinatus,
subscapularis and teres minor. The rotator cuff acts as a functional entity; it
depresses the humeral head, stabilising it against the glenoid fossa and
balances the forces of the deltoid muscle as it raises the humeral head
superiorly. Common causes of rotator cuff pathology include overuse,
Enhancing Participation in Individual and Community Life Activities Practice Guide
41
improper biomechanics and excessive load. Most at risk of rotator cuff
pathologies include the elderly (due to degeneration of the tendons), people
with hypermobility, people relying heavily on their arms for transfers, people
with biomechanics considered outside the normal, and those with repetitive
overhead movements. Impingement often occurs in conjunction with rotator
cuff pathologies.
Diagnosis of a rotator cuff pathology involves specific muscle testing to
identify which rotator cuff muscle is involved and if required imaging via
ultrasound or MRI. Management involves unloading the tendon/muscle,
identifying any other concurrent pathologies, continuous passive motion and
specific strengthening exercises (Green, Buchbinder, & Hetrick, 2003; Du
Plessis et al., 2011).
Adhesive capsulitis
Adhesive capsulitis (often called frozen shoulder) is an inflammatory lesion of
the glenohumeral joint capsule with consequential loss of joint volume
resulting in marked limitation in all movements. This condition often has an
insidious onset and resolves by itself over a 12 month to 2 year period,
although 20% of people are left with some degree of impairment.
There are four stages of adhesive capsulitis:
Stage 1: Pain with no great limitation; mild erythematous and fibrinous
synovitis.
Stage 2: Decreased range and deep pain and a thickened adhesive synovitis.
Stage 3: Very inflamed, gross movement loss in a capsular pattern, can have
referral down the arm in the C5 dermatome distribution.
Stage 4: No inflammation but the patient is left with gross limitation of function
but the movement begins to come back.
Most common causes of adhesive capsulitis result from overuse or incorrect
biomechanics, or excessive load. Most at risk of adhesive capsulitis include
middle aged women. Management can include hydro-dilatation, stretches,
joint mobilisation, unloading the tendon/muscle, identifying any other
concurrent pathologies and specific muscle stabilising and strengthening
exercises (Brantingham et al., 2011); Foster, 2010).
Neuropathies
Neuropathies can occur from causes such as poor postures, scoliosis, poor
manual handling and improper use of equipment. When assessing for
neuropathies, motor function and sensory function should be tested. Upper
limb neuropathies include:
Long thoracic nerve pathology
Long thoracic nerve pathologies can affect serratus anterior muscle, and
cause winging of scapula. Formed by the roots of the C5, C6 and C7 nerve, it
Enhancing Participation in Individual and Community Life Activities Practice Guide
42
passes posterior to the brachial plexus to perforate the fascia of the serratus
anterior and then passes medially to the coracoid process. Long thoracic
nerve pathologies cause paralysis of the serratus anterior muscle with winging
of the scapula. Most common causes of long thoracic nerve pathology are
traction on the neck or shoulder (such as poor manual handling skills during
transfers), blunt trauma or viral illness.
Thoracic outlet syndrome
Thoracic outlet syndrome is a condition whereby symptoms are produced
from compression of nerves or blood vessels, or both, because of an
inadequate passageway through an area (thoracic outlet) between the base of
the neck and the armpit. Symptoms include neck, shoulder, and arm pain,
numbness, or impaired circulation to the extremities (causing discoloration).
Symptoms are reproduced when the arm is positioned above the shoulder or
extended. Most common causes of thoracic outlet syndrome are due to poor
posture with anteriorly rounded shoulders, which decrease the diameter of the
cervicoaxillary canal. Other causes are due to shortened scalene muscles,
pseudoarthrosis of the clavicle, chronic scapular dyskinesia, tight pectoralis
minor, scalene and upper trapezius muscles, and weak serratus anterior and
lower trapezius muscles.
Conservative management can consist of postural education, diaphragmatic
breathing, manual therapy and stability exercises. However, surgical and
conservative management has poor low quality randomised evidence, mainly
due to a lack of criteria for the diagnosis of thoracic outlet syndrome (Povlsen
et al., 2010).
Axillary nerve compressions
Axillary nerve compression is an uncommon condition. It is caused by
compression of the posterior humeral circumflex artery and axillary nerve in
the quadrilateral space (located over the posterior scapula in the sub deltoid
region and consists of the teres minor superiorly, teres major inferiorly, long
head of triceps medially and the neck of the humerus laterally. The axillary
nerve and posterior circumflex artery pass through inferior to the
glenohumeral capsule. Most common causes of axillary nerve compression
are anterior dislocation of the shoulder, throwing and blunt trauma to
anterior/lateral deltoid muscle.
Suprascapular nerve entrapment
The suprascapular nerve (C5 C6) supplies motor innervation to the
supraspinatus and infraspinatus muscles and sensory innervation to the
posterior shoulder capsule and the acromioclavicular joints. The
suprascapular nerve runs through the suprascapular notch before entering the
suprascapular fossa. Compression occurs in the suprascapular notch which is
enclosed by a transverse ligament. When suprascapular entrapment occurs
pain is felt along the posterior lateral aspect of the arm and may radiate.
Wasting of the infraspinatus and supraspinatus muscles may follow.
Enhancing Participation in Individual and Community Life Activities Practice Guide
43
Suprascapular nerve entrapment is more common in males due to the
morphology of the nerve in males (Polgui, Jedrzejewski, & Topoi, 2013). Most
common causes of suprascapular nerve entrapment include trauma, traction
or overuse.
Management includes activity modification, non-steroidal anti inflammatory
drugs and exercises including scapula stabilisation, and specific muscle
strengthening. Last resort management is division of the transverse ligament
via surgery (Boykin et al., 2010).
4.4.3.6 Osteoporosis and osteopenia
Osteoporosis is a disease characterised by low bone mass and structural
deterioration of bone tissue. This leads to increased bone fragility and
therefore increased susceptibility to fractures (World Health Organization
(WHO), 2003). In osteopenia there is also reduced bone mineral density but
not to the same extent as in osteoporosis (Woolf & Pflieger, 2013).
With the potential for fracture and pain, handling, positioning, weight-bearing,
muscle strengthening and whole body vibration therapy (WBV) may be
considered. In non- ambulant children the use of a standing frame has been
shown to increase bone mineral density in the femur and vertebrae (Caulton,
et al., 2004; Gudjonsdottir & Stemmons Mercer, 2002).
One literature review reported that there was some evidence of the
effectiveness of WBV in enhancing skeletal mass in the elderly, in individuals
with low-bone mineral density, and adolescents (Prisby et al., 2008).
However, the most effective protocols are currently unknown, so care must be
taken to tailor the vibratory protocol to the person with disability.
4.4.3.7 Importance of nutrition
Poor nutrition can cause linear growth failure, decreased muscle strength and
circulation, immune system disturbances, delayed healing, fractures and
decreased quality of life.
Problems with weight management (underweight and overweight) can be
associated with some specific disabilities but for many people with intellectual
disability, decreased opportunities to exercise can contribute to weight
management difficulties.
Some useful factsheets:
Australian dietary guidelines
Disability - Managing overweight and obesity fact sheet
Disability - Managing underweight fact sheet
Enhancing Participation in Individual and Community Life Activities Practice Guide
44
4.4.3.8 Differentiation of causes of pain
Some examples to consider include growing pains, spasticity, bone pain,
reflux, hip migration/dislocation, musculoskeletal, fracture or bowel
obstruction.
4.5 Assessing a person’s ability to transfer
Physiotherapists often need to assess, develop (as possible) and advise
carers about people’s transfer abilities. They may also need to consult on
wheelchair prescription to accommodate their transfer capabilities. When
assessing a person’s ability to transfer physiotherapists need to determine the
level of assistance the person requires to move from one place to another.
For example:
•
independent standing transfer
•
assist with one person
•
assist with 2 people
•
assist with a transfer belt
•
walking from one place to another (and level of assistance required)
•
floor transfers such as lying to sitting, sitting to kneeling, kneeling to
standing.
Transfer skills can be developed through practice with varying levels of
assistance to encourage maximum potential. Specific practice will be needed
in the environment where those skills will be used. Programs to assist
strengthening may be possible and appropriate for developing transfer skills.
Education and advice to carers about a person’s transfer abilities is essential
to ensure the safety of the person and carer and it is important to assess that
carer’s capabilities to carry out the transfer. Physiotherapists have a role to
consult with occupational therapists around wheelchair prescription because
of their knowledge about transfer capabilities and potential of the person
needing the wheelchair. For example, the physiotherapist will need to advise
on whether or not a wheelchair is appropriate to transfer into a standing or
walking frame etc.
Enhancing Participation in Individual and Community Life Activities Practice Guide
45
5 Selecting interventions to support
movement ability
5.1 Introduction
Physiotherapists are involved in helping people, families and carers to
determine how a person’s movement can be enhanced through their everyday
routines and meaningful activities. Such activities should take place naturally
within the places where people “learn, work, play and love” (United Nations,
1986, p. 2) including family homes, group homes, nursing homes, schools,
day programs and workplaces, as well as in the general community, including
parks, gardens and leisure spaces.
Choice of supports needs to be determined by individual preferences and
goals negotiated and regularly reviewed with people, their families and carers.
An important part of this process includes verbal and written communication
regarding any physiotherapy supports undertaken and the outcomes that
result. Those should be made available for all people involved with the person
concerned (with their consent or that of their legal guardian) and in formats
that are tailored to their individual communication needs.
5.2 Assisting acquisition of motor skills
Specific motor skills are required to access different environments and to
achieve a variety of mobility outcomes, at different stages of life. The process
used to determine which skills to develop includes:
•
using evaluative assessment tools and collaborating with the person,
parents and/or carers to identify the goals for mobility (GAS and COPM
are particularly useful tools to assist with this)
•
using endorsed, discriminative assessment tools to assess skill
development compared to the normal population
•
identifying the mobility patterns, skills and limitations of the person
•
identifying the skills required to achieve goals
•
identifying the resources required to perform the skills (e.g. the support
of carers, equipment etc)
•
selecting evidence based interventions
•
identifying funding issues related to the purchase or loan of the
equipment where required
•
liaising (where appropriate) with other team members regarding
lifestyle and functional goals required to be achieved over a variety of
settings and environments. For example liaising with an occupational
Enhancing Participation in Individual and Community Life Activities Practice Guide
46
therapist for wheelchair mobility in the community, or an
orthotist/podiatrist for braces/orthoses for school)
•
determining assessment and reassessment parameters to identify
progress towards achieving the outcomes.
Factors that influence skill acquisition and maintenance in different
environments include:
•
cognitive ability
•
current mobility and physical status
•
fatigue
•
pain
•
behaviour/psychological issues/co-operation/motivation
•
balance and co-ordination
•
terrain
•
distance
•
physical space available and circulation area
•
assistance available
•
disability access
•
strength/endurance, cardio respiratory fitness
•
carer support and capacity
•
sensory hypo and hyper alertness
•
vision
•
hearing
•
opportunities to practice.
The influences and limitations of the environment and the person will inform
strategies to address goals and outcomes. The results of assessments will
inform the planning of future intervention. This may be mobility skills specific
to the targeted environment, maintenance of current function, preparation for
deterioration of skills or preparation for a new environment or transitional
phase. The involvement of other disciplines such as speech pathology or
occupational therapy may be a part of this process.
5.3 Basing practice on evidence
Whenever possible, physiotherapists should determine the most recent
evidence base for any planned therapeutic intervention. This will enable them
to best advise the person with disability, their family and their carers about the
most useful and effective way to support movement abilities for that person.
Enhancing Participation in Individual and Community Life Activities Practice Guide
47
Families can be strongly motivated to find ways to help a family member who
has disability and may often ask their physiotherapist for advice regarding a
new therapeutic intervention or a new piece of equipment. Physiotherapists
have a responsibility to carefully assess evidence for interventions. They can
also use their experience, research ability (and access to evidence literature
and data bases) and support from more senior and experienced colleagues in
order to be able to give useful advice when the evidence for intervention is
unclear, non-contextualised or absent.
There are limited randomised controlled trials, which have examined the
effectiveness of motor control interventions for people with intellectual
disability. One randomised controlled trial assessed reaction time (pushing a
button in response to a light or sound stimulus) pre and post a 12-week
intervention program which included activities such as sit ups and push ups,
upper limb strengthening with weights, and running speed training (Yildirim et
al., 2010). This group of children had mild intellectual disability (without Down
syndrome) and a mean age of 15 years (range 11-18 years). Post intervention
they had significant (p<0.01) improvements in their visual reaction time (141
milliseconds , with a 95% confidence interval calculated from the data
provided of 124 – 158 milliseconds) and auditory reaction time (114
milliseconds, with a 95% confidence interval calculated from the data provided
of 109 -119 milliseconds) compared with a control group of similar children.
Use of un-blinded assessors may explain these precise estimates. It is difficult
to draw a clinical impression as there was no discussion about whether this
actually translated in to improvements in functional motor activities.
Another small randomised controlled trial focussed on people with Down
syndrome. It compared a six week program of combined progressive
resistance training and balance exercises versus regular school activities.
The balance activities included standing on one leg, various jumping tasks
and walking on a balance beam (Gupta, Rao, & Senthil, 2011).
Improvements in strength and balance were reported however mean
between-group differences were not reported. Instead the authors only report
significance levels for the within-group changes. Not enough information is
provided to determine the size of the treatment effect.
There is some evidence to suggest that treadmill training can assist infants
with Down syndrome to walk sooner, positively impact on their gait
parameters and increase their activity levels (Damiano & De Jong, 2009).
The physiotherapist and family would however need to consider whether
these gains are significant enough to justify the cost of treadmill training both
in equipment and carer impact (including time and potential musculoskeletal
implications of supporting the child whilst treadmill walking).
One poorly controlled trial (Jankowicz-Szymanska, Mikolajczyk, &
Wojtanowski, 2012) looked at youth with Down syndrome undertaking a 3month training program using exercise balls, balancing and walking on
uneven surfaces and walking in the gym. The authors reported significant
improvements in the ability to balance on one leg at the end of the trial.
Whether this actually translated in to improvement in functional tasks such as
standing up and sitting down, walking or playing sports was not investigated.
Enhancing Participation in Individual and Community Life Activities Practice Guide
48
A small, but well conducted, randomised controlled trial has shown that a 10week program of progressive resistance training for adolescents with Down
syndrome, compared with a control group receiving usual activities, can
improve leg muscle strength (demonstrated by a mean between-group
difference of 36 kg (95% CI 15 – 58kg) in a leg press). However this is
unlikely to transfer across to an improvement in physical function (Shields &
Taylor, 2010). Similarly, in adults with Down syndrome, a 10-week
progressive resistance training program can increase arm muscle endurance.
However no significant improvement in arm muscle strength, or upper limb
function was seen in this single-blinded randomised controlled trial. Further,
this 10-week progressive resistance training program did not improve leg
muscle strength, endurance or lower limb function (Shields, Taylor, & Dodd,
2008). The estimate of treatment effects in the paper were very imprecise
(that is, the 95% confidence intervals were wide). This indicates there may
have been an insufficient sample size to detect strength, endurance or
functional changes. Further, the intervention was carried out twice per week
for 10 weeks which may not have been enough to achieve strength
gains Shields et al., 2008).
One study looked at the effects of a four times per week for two weeks
inpatient program, followed by a three times per week for six months home
program of lower limb muscle strengthening and 30 – 45 minutes of walking
for eleven adults with Prader Willi Syndrome and mild intellectual disability. It
found no effect on balance which was tested by force platform with integrated
video system. This is not a surprising finding given the intervention did not
appear to specifically target balance, the intervention group was small, and
the study was poorly controlled (Capodaglio et al., 2011).
There is more research into the effects of different types of training
interventions on motor control in people with cerebral palsy. A systematic
review of the evidence looking at interventions for children with cerebral palsy
found that those that are well supported by evidence include goal directed
functional training, home programs, constraint induced movement therapy,
bimanual training and context-focussed therapy (Novak,et al., 2013). Other
interventions that may be of benefit but where outcome measurement is
highly recommended include bio-feedback, hydrotherapy and hippotherapy
(Novak et al., 2013). Interventions that are likely not to be effective to improve
motor activities for people children with cerebral palsy include conductive
education, thera-suits and Vojta (Novak,et al., 2013). Finally,
neurodevelopmental therapy, hyperbaric oxygen and sensory integration have
been found to be ineffective in improving motor skills in children with cerebral
palsy and are not recommended as part of standard supports (Novak,et al.,
2013). Evidence about the effectiveness of different interventions for
improving motor control in adolescents and adults with cerebral palsy is more
sparse although there is evidence to suggest that strength training improves
walking (Jeglinsky et al., 2010). However, not all people with cerebral palsy
have an intellectual disability and this evidence relates to the broad population
of people with cerebral palsy.
Enhancing Participation in Individual and Community Life Activities Practice Guide
49
In summary, the best available evidence indicates that balance and strength
exercises, along with the practice of functional tasks in goal-directed activities,
are the most effective ways to improve motor control for people with
intellectual disability. Physiotherapists may need to contextualise evidencebased practice from other areas of physiotherapy to suit the needs of people
with intellectual disability.
A proposal for a systematic review of the available literature (Hocking,
Pearson & McNeil, 2014) suggested some particular approaches to
physiotherapy for people with intellectual disability that might be useful
including the introduction of modified or alternative approaches to
physiotherapy intervention, which would aim to:
•
concentrate on specific interventions for specific conditions within the
population of people with intellectual disability
•
improve engagement through the use of creative group therapy
approaches
•
promote less sedentary behaviour and thereby positively affect health
indicators
•
improve gross motor function by encouraging participation in
alternative forms of physical activity, such as hippotherapy (horseriding) with physiotherapy support.
The proposed literature review may shed some more light onto these areas of
interest regarding physiotherapy intervention for people with intellectual
disability.
Within the available literature, it is generally thought that best practice for
physiotherapy interventions for people with intellectual disability needs to
involve the following principles of therapeutic intervention (Campbell, 2012):
•
children or adults with disability and their families and carers as equal
partners in the physiotherapy process
•
assessments conducted within natural contexts for that person
•
emphasis on functional outcomes
•
active participation by the person with disability
•
interventions that not only address the person’s impairments but are
also designed to support activity and participation
•
teaching strategies to facilitate acquisition of skills by people with
intellectual disability
•
development in domains other than motor domains is also considered
by the physiotherapist.
Enhancing Participation in Individual and Community Life Activities Practice Guide
50
6. Supporting the management of
physical impairment
Not all people with a disability have a physical condition but people with
disability who do have physical conditions, which impact on their ability to
move and interact with their environment can benefit from physiotherapy
support. The aims of supporting the management of physical impairment for
people with disability are to:
•
limit physical impairment related to body and structural conditions,
•
prevent secondary physical impairment
•
minimise limitations to activity for the person with disability.
(Campbell, 2012).
The physiotherapist’s role in this process will include assessing and
monitoring muscle length, joint range of movement, and bony deformities. It
may also include supporting the child as they grow, with specialised
equipment, positioning, stretches and exercises. This is essential at times of
rapid growth and transition such as when the child begins school and at prepuberty.
Physiotherapists may consider:
•
Passive methods of lengthening soft tissues such as sustained
stretching, serial casting, splints, and positioning in equipment (e.g.
AFOs, leg wrap-arounds, standing frames, side -lyers, sleep systems
and seating equipment). This may involve trialling equipment and
applying for funding for the most appropriate equipment from
EnableNSW, AESA (FACS funding program for equipment for people
living in ADHC funded group homes) or other independent
organisations. It may also involve adjustments to the aid as the person
changes shape, grows or has a change in function.
•
Active methods of lengthening soft tissues including functional training
in the desired range. The following
website www.physiotherapyexercises.com may be a useful resource.
•
Referral for medical or surgical intervention where required.
•
Use of soft postural supports (the level of evidence for the use of soft
postural supports is low, so outcome measurement is important).
6.1 Medical, surgical and orthopaedic procedures
The physiotherapist’s role in medical, surgical and orthopaedic procedures
may vary according to geographical location and the type of intervention that
occurs. In some instances this may only involve referral or following up
Enhancing Participation in Individual and Community Life Activities Practice Guide
51
movement for that person after other medical interventions have been
conducted for them. At other times the physiotherapist’s role may include:
•
assisting with referrals
•
organising appointments
•
assisting the family with filling out forms (administrative)
•
informing the person/family about the process and what to expect, and
referring on when it is not possible to answer all questions
•
assisting with transport issues in collaboration with the occupational
therapist and hospital staff
•
advocating on behalf of the person
•
liaising with other professionals
•
serial casting post Botulinum Toxin Type A (BoNT- A).
•
implementing programs pre and post procedure. Physiotherapists
should work in collaboration with the hospital physiotherapists and
specialists to develop the optimal rehabilitation plan post-procedure.
This may involve a pre-intervention meeting or teleconference that
covers preparation for surgery and post-surgical management and pain
relief. It is important to discuss any contraindicated activities (e.g.
weight-bearing, hip adduction etc.) with the medical team and the time
frame these contraindications will be in place.
It is important to remember that a person’s performance in a hospital/clinic
setting may be different to their regular performance in their everyday
environment. The physiotherapist’s capacity to visit all environmental settings
with the person and implement the program is therefore integral to maximising
the benefit of post-medical, surgical and/or orthopaedic intervention.
When considering an intervention aimed at reducing spasticity it is important
to consider whether this may lead to a decrease in ambulatory function, for
example people with spastic quadriplegia may use their spasticity to assist
with standing transfers (Steinbok, 2006). When the medical team consider
options for the management of spasticity they consider whether the spasticity
is focal, regional or generalised.
6.1.1 Botulinum Toxin Type A (BoNT-A)
This is a focal intervention with generally no more than four large muscle
groups being injected (Rodda & Graham, 2001). BoNT-A is used in spasticity
and dystonia, however the management is more complex in dystonia particularly when spasticity and dystonia are present in combination (Gibson,
Graham, & Love, 2007).
Enhancing Participation in Individual and Community Life Activities Practice Guide
52
Although cerebral palsy is not a focal disorder, it can be appropriate to treat
focal problems as long as the intervention is goal directed (Gibson et al.,
2007). BoNT-A injection results in a localised, temporary, reversible chemodenervation of the injected muscles, converting weakness with muscle
hyperactivity to weakness with muscle hypo-activity (Gibson et al., 2007).
An active therapy program is central to the management of the movement
problems in the child with cerebral palsy. This includes task-specific motor
training, maintenance of muscle length, and improved muscle strength. The
aim is to achieve improvements that carry over beyond the pharmacological
affects of the botulinum toxin-A (Gibson et al., 2007). The focus of support
should be based around the goals set by the person/family prior to the BoNTA injection. Physiotherapists may consider maximising the opportunity to
strengthen weak muscles and/or maintaining muscle length.
6.1.2 Intrathecal Baclofen (ITB)
ITB is a fully reversible intervention used for people with more severe
disability, including those with spastic quadriplegia and generalised dystonia.
A pump is implanted which delivers a continuous ITB infusion. Baclofen
improves both spasticity and dystonia with the stronger evidence for the lower
limb than upper limb (Steinbok, 2006). It has also been found to improve joint
range of movement and comfort, and there is some lower level evidence for
improved function (Rodda & Graham, 2011). A consideration is that the
person needs to be able to access a tertiary institution for refills of the pump
or for any troubleshooting (Steinbok, 2006).
6.1.3 Selective Dorsal Rhizotomy (SDR)
SDR is a surgical procedure conducted via a small incision near the lumbar
spine. Sensory nerves from spastic muscles in the legs are identified and then
cut to decrease the amount of messages being sent from spastic leg muscles.
The amount of spasticity in those leg muscles is therefore reduced. SDR is
used in people with spastic diplegia with significant lower limb spasticity, and
good underlying strength and selective motor control. It is best to undertake
the procedure prior to the development of fixed contractures. Intensive
rehabilitation is required post-SDR, therefore cognitive and behaviour factors
are taken into consideration prior to performing the procedure.
Again, it is important to remember that a person’s performance in a
hospital/clinic setting may be different to their regular performance in their
everyday environment. The physiotherapist’s capacity to visit all
environmental settings with the person and implement the program is
therefore integral to maximising the benefit of SDR.
Enhancing Participation in Individual and Community Life Activities Practice Guide
53
6.1.4 Orthopaedic Surgery
“Surgery is sometimes needed when muscle contractures are severe enough
to cause permanent restrictions of movement or bone deformities. There are
several types of surgery used to lengthen muscles, realign bones and treat
contractures”. (The Sydney Children’s Hospital Network, Cerebral Palsy
Factsheet)
The aims of surgery are:
•
to prevent or reduce the severity of contractures, spasm or pain
•
to improve movement and function
•
to facilitate daily care of the child (for example, bathing, dressing and
moving)
•
in some cases, to prevent painful complications such as dislocated
hips.
Single event multi level surgery (SEMLS) involves the correction of multiple
soft tissue and/or bony deformities in the one operative procedure. It is most
commonly performed on children between the ages of 6 and 12 years when
gait has matured as far as possible. (Pain Management-CHW Practice
Guideline, 2015 ). Clinically and statistically significant improvements in gait
and function were maintained five years after SEMLS surgery in one small
prospective cohort study (RCT) of children with bilateral spastic cerebral palsy
(Thomason, Selber, & Graham, 2013). Another large prospective cohort study
of SEMLS in children with cerebral palsy spastic diplegia found that while gait
was significantly improved, changes in gross motor function were generally
small, and the GMFCS level remained stable in the majority of children after
surgery. (Rutz et al., 2012).
Physiotherapists have an important role collaborating with the orthopaedic
team and other health professionals; to plan and set goals with the person
and their family before the surgery, to ensure that the rehabilitation phase
after surgery and the return home from hospital goes smoothly and that the
person and family are well supported. The person who is having surgery may
need additional equipment, or short term modifications to their existing
equipment, and environmental modifications after returning home. In the
longer term, physiotherapy can assist the person in a variety of ways; to
maintain the increased flexibility of muscles and joints, to regain movement
and function and to give support and advice around activities to improve their
participation in activities of their choosing.
Enhancing Participation in Individual and Community Life Activities Practice Guide
54
7. Promoting health, fitness, physical
activity, and participation in community
recreational activities
7.1 Typical physical activity levels for people with
intellectual disability
7.1.1 Adults
Adults with intellectual disability can have low levels of cardiovascular fitness
and high levels of obesity, primarily due to physical inactivity (Graham & Reid,
2000). There is considerable individual variability in physical activity levels of
people with intellectual disability (Temple & Walkley, 2003). Less than one
third of adults with intellectual disability perform enough physical activity to
have health benefits but this may not be different to the general population
(Finlayson, Turner, & Granat, 2011; Temple, Stanish, & Frey, 2006, p. 79).
However, as severity of intellectual disability increases, the amount of
physical activity undertaken decreases (Peterson, Janz, & Lowe, 2008).
Further, people with intellectual disability become even less active after the
age of 50 years (Dixon-Ibarra, Lee, & Dugala, 2013; Hilgenkamp, Reis, van
Wijk, & Evenhuis, 2012). People with intellectual disability tend to be more
active during the week than on the weekend (Stanish, 2004). Unlike the
general population, males and females with intellectual disability have similar
levels of physical activity (Stanish, 2004).
7.1.2 Children
Physical activity patterns of children with intellectual disability are less clear
(Frey, Stanish, & Temple, 2008). It is likely that they are less active than their
typically developing peers although there is still work to be done on validating
measures of physical activity for this group (Hinckson & Curtis, 2013).
Nevertheless, less than half the children with Down syndrome in one
Australian study met the recommended levels of activity required for health
benefits (Shields, Dodd, & Abblitt, 2009); a finding which appears consistent
with the body of literature regarding the physical activity levels of this group
(Pitetti, Baynard, & Agiovlasitis, 2013).
7.2 Benefits of physical activity for people with disability
In a meta-analysis of 21 studies, Chanias, Reid and Hoover (1998) concluded
that exercise has been found to have:
•
large effects on muscular and cardiovascular endurance (influenced by
program length)
Enhancing Participation in Individual and Community Life Activities Practice Guide
55
•
moderate effects on muscle strength (influenced most by program
type)
•
small effects on flexibility (influenced most by program frequency) in
adolescents and adults with an intellectual disability.
This study excludes studies done with people with Down syndrome.
7.3 Risks of physical inactivity for people with disability
Children develop self-perceptions by acting on the world through exploring,
falling, and failing. Decreased activity levels in childhood may predispose
children to be overweight and limit skill development, eventually limiting
lifetime choices for enjoyment in leisure and sport pursuits (Bjornson et al.,
2007; Logan et al, 2012).
Adolescence is a time of rapid change, particularly with regards to growth and
this can influence a person’s chosen activities and sport. Lifelong fitness can
be established during these important years. As adults, lifetime activity
choices may become influenced by injuries and pain and this becomes a
common reason why adults seek consultation with a physiotherapist. Issues
regarding weight management and fitness become increasingly important for
the promotion of wellbeing. As people begin to age, changes in strength and
balance can predispose to falling and injury. Physiotherapists have a large
role to play in preventing falls and in assisting the return to function following a
fall (See Section 9: Falls assessment and prevention).
Physical inactivity is known to increase the risk of heart disease, type 2
diabetes and some cancers (Lee et al., 2012). Australia’s Physical Activity
and Sedentary Behaviour Guidelines outline the minimum levels of physical
activity required to gain a health benefit and ways to incorporate incidental
physical activity into everyday life (Australian Government, Department of
Health, 2014).
See The Department of Health website for current recommendations.
Enhancing Participation in Individual and Community Life Activities Practice Guide
56
7.4 Barriers and enabling factors for physical activity
Table 7.1 outlines the barriers and enabling factors for physical activity for people with intellectual disability. While many of these
factors are specific to people with disability, it may also be recognised that these barriers may also be relevant to the general
population.
Table 7.1: Barriers and enabling factors for physical activity for people with intellectual disability
Barriers
•
reduced understanding of the importance of exercise
•
limited ability to initiate and sustain exercise independently
•
disturbances in mood
•
limited awareness of the availability of accessible activity options
•
the weather
•
physical limitations making performance of activity difficult
•
reduced capacity to exercise at the required level of intensity
•
reduced confidence to use facilities
•
concerns for their safety and health
•
inaccessible environments and equipment
Enhancing Participation in Individual and Community Life Activities Practice Guide
57
Enablers
•
educational programs that are appropriately
pitched for people with intellectual disability
•
carers and professionals in the community
who have the knowledge, skills and
resources to promote physical activity and
include people with intellectual disability
•
motivational strategies and low to moderate
intensity activities which the individual
chooses and are age appropriate
•
activities that are affordable and fun, have a
component of social interaction and are
modified as required
Barriers
•
transport restrictions that limit access to appropriate exercise options
•
cost
•
a lack of policy guidelines in services
•
staffing constraints
•
lack of support from carers / family members to be active.
Enablers
•
environmental modifications are made and
adaptive equipment is provided where
required
•
clear policy guidelines within services
around physical activity
•
use of peers to exercise with youth with
intellectual disability – helps overcome
personal barriers
(Barr & Shields, 2011; Frey, Buchanan, & RosserSandt, 2005; Hawkins & Look, 2006; Mahy, Shields, Taylor, & Dodd, 2010;
Messent, Cooke, & Long, 1999; Rimmer, Riley, Wang, Rauworth, & Jurkowski, 2004; Temple, 2007).
Enhancing Participation in Individual and Community Life Activities Practice Guide
58
7.5 The physiotherapist’s role in promoting physical
activity
There are a range of sporting and recreational activities within communities
which are available to everyone. Some activities are specifically set up for
people with disabilities while others are mainstream activities that may or may
not require some modifications. It is important that people are able to choose
what they would like to do. The role of the physiotherapist is then to help them
do it. Physiotherapists may be able to assist organisers of mainstream
activities to modify the activity to suit the person. Participation in an activity of
one’s choice with friends, outside in the sunshine (with appropriate protection)
and fresh air is both healthy and empowering for anyone but particularly for
people with an intellectual disability who can face many barriers to such
participation.
As with the general population, any person embarking on a physical fitness
program should first be assessed medically for clearance.
7.5.1 Assisting goal-setting for physical activity
When a person or their family or carer identifies they would like assistance
with encouraging and accessing physical activity opportunities,
physiotherapists can assist goal setting to improve levels of physical activity
for someone by:
•
helping people to review their current activity levels
•
selecting a valid tool to use
•
assessing/ reviewing their physical status
•
liaising with medical practitioners regarding health checks as needed
•
considering other diagnoses that exist for that person
•
considering the ICF framework to harness possibilities for that person
•
identifying gaps – how can they be active at home, in the community,
during day activities (work, school, day placement), in leisure time, for
transport – look for gaps where they may be able to engage in more
activity
•
identifying personal motivators for that person to participate, identify
some rewards
•
identifying barriers preventing that person participating – discuss with
the person and carers to determine strategies to overcome them.
Enhancing Participation in Individual and Community Life Activities Practice Guide
59
Table 7.2: Useful participation in physical activity measures for disability
Name
Purpose of
of tool
tool
The Children's
Assessment of
Participation
Enjoyment - CAPE
Designed to document how
children with or without a
disability participate in everyday
activities outside of school hours
IPAQ-ID
Examines details of physical
activity in different domains of
activity over 7 days
6 minute walk test
Pedometer
Admin
time
Valid for people
with Intellectual
Disability (Y/N)
Reliable for people
with Intellectual
Disability (Y/N)
Not reported in
literature
Not reported in
literature
N
15mins
Y
Y
N
Measures functional walking
610mins
Not reported in
literature
Y, with modifications
N
Measures distances walked
-
Y
Y
N
30-45
mins
For further details on these tools See Appendix 9
Enhancing Participation in Individual and Community Life Activities Practice Guide
60
Accreditation
required (Y/N)
7.5.2 Physiotherapy interventions to encourage physical activity
One way to improve the health of people with intellectual disability is to
increase the intensity of physical activity they do (Robertson et al, 2000). They
need to be regularly engaging in moderate to vigorous physical activity.
However, it is still not clear how we best achieve this (Rimmer et al., 2010).
Moderate evidence exists to support the use of cardiovascular exercise
programs to improve the fitness of people with Down syndrome (at least in the
short term). However the impact of this on daily functional tasks is unknown
(Dodd & Shields, 2005). While there is some evidence that combining
strength and endurance training works best to improve fitness, mobility and
health in adults with milder intellectual disabilities (Calders et al., 2011), this
was with a fairly ambitious exercise regime involving two 70 minute sessions
per week for 20 weeks. Sustaining this level of activity is challenging. One
group of researchers noted that little was known about the effects of long term
physical activity programs for people with intellectual disability (Lante et al.,
2011) as all studies to date have only involved short term programs. Whilst
short term programs can improve physical activity levels, fitness and mental
health, it was noted that their value is limited. One systematic review
concluded that while it is possible to increase the activity levels of people with
cerebral palsy, any benefits are quickly lost once programs cease (Bania,
Dodd, & Taylor, 2011). This is to be expected. The real challenge is ensuring
exercise programs can be continued in the long term. This probably means
that exercise programs need to be based in the community and they need to
be affordable (Lante et al, 2011).
When providing supports to encourage physical activity:
Planning
•
identify the person’s goals for engaging in physical activity and ask the
person about their likes and dislikes
•
identify activity limitations
•
assess body structure and function
•
assess participation
•
identify and address barriers and enablers
•
identify available programs in the community
•
enter the details of the proposed intervention into the person’s activity
and support plan.
Enhancing Participation in Individual and Community Life Activities Practice Guide
61
Engagement
•
modify the activities or equipment as necessary
•
train carers about healthy lifestyles (Melville et al., 2007)
•
assess and analyse relevant tasks for the person to be able to do the
activity and to participate
•
encourage participation in physical activity with peers for social
interaction and fun
•
use the identified motivators and rewards.
Review
•
monitor the person’s progress against their set goals
•
discuss at staff meetings
•
if the person is not engaging in the activity, explore the reasons for this
with the person and identify strategies to overcome barriers
•
celebrate progress and highlight achievements.
7.5.3 Promoting participation in community recreational activities
7.5.3.1 Community based physiotherapy
Community based physiotherapy is expanding and developing rapidly (Hale,
Croker & Tasker, 2009). It involves supporting people with disability to
participate within their communities, identifying community resources and
facilitating the community to support the person. For example, a child with a
disability may wish to play soccer with their local team. The physiotherapist
may work with the local sports coach to develop specific drills/exercises
and/or modify the soccer activity to support the child to develop their skills and
participate in training and games. They may also provide some broader
education to the sporting club about disability, and how to support people with
disability to participate. The physiotherapist may also develop a program of
activities for the child to practice at home to develop their balance, muscle
strength and ability to kick a ball, to enable them to further develop these skills
to participate with their team.
7.5.3.2 Community-based activity options for good health and physical fitness
There are a wide variety of activity options available in most communities.
Local council and services directories are a good source of information about
what is available in the person’s local community (for example, dance classes,
rowing, sailing, adult movement classes, fitness groups etc). When supporting
people to select sport and recreational activities some of the following options
may be considered.
Enhancing Participation in Individual and Community Life Activities Practice Guide
62
Walking
There are many suggested benefits of walking including managing weight,
controlling blood pressure, reducing risk of some diseases, lowering stress
levels, relieving arthritis and back pain, strengthening muscles, bones and
joints, improving sleep, elevating mood and sense of well being, and
prevention of depression, constipation and osteoporosis. Physiotherapists
should consider the person’s and carer’s safety when suggesting where they
can walk, and for how long and educate carers about minimising the risk of
falls. Some communities have walking groups or clubs that the person may be
able to participate in. Alternatively, some people with a disability may be able
to use a treadmill or exercise bike in their home environment (after risk
assessment and advice from their therapist).
Swimming
People with disability may participate in mainstream swimming lessons,
others prefer a private swimming lesson, and yet others choose an instructor
or lesson specifically geared to people with disability. Physiotherapists can
work with the person and their family to determine what is most appropriate
and identify an appropriate facility in their area. There is also a role for
physiotherapists in supporting mainstream and other types of swimming
classes to modify/adjust programs to enable people with a disability to
participate and learn. When there is a need for specialist support for waterbased activities, this may be provided at the community pool or a
hydrotherapy pool in the community with support as required from an
attending physiotherapist.
Going to the Local Gym
Physiotherapists may consider visiting the local gym with people who need
assistance and working with the staff to develop an appropriate program both
for cardiovascular fitness and strengthening.
Kindygyms
Kindygyms may be able to accommodate children with disability and assist
them to develop their motor skills alongside their peers. Physiotherapists may
work with the provider to modify the program if it is required.
School Gross Motor Activities
All children are required to spend a certain amount of their school time
participating in gross motor/sport activities. Physiotherapists can work with
teachers to determine appropriate activities, or assist them to break down
activities into parts for the child. In schools where there are a number of
children with disability, physiotherapists might assist with setting up and
running a gross motor program which can then be continued without ongoing
physiotherapy assistance.
Mainstream Sports
Enhancing Participation in Individual and Community Life Activities Practice Guide
63
Many community sports that people without disability participate in may be
appropriate for people with disability (e.g. soccer, basketball, netball).
Physiotherapists can assist coaches to break down the task and teach the
skills required for the sport. Local councils and services directories can
provide information about community sports and contacts.
In some areas there are sports programs specifically designed for people with
disability.
Special Olympics
The Special Olympics movement provides sports training and competition for
people with intellectual disabilities. Visit Special Olympics Australia to find
details about which sports are offered in the local area and the contact
person. The sports available are aquatics, athletics, basketball, bocce, golf,
gymnastics, soccer, softball, tennis, and tenpin bowling. The site includes
pathways that Special Olympics athletes can undertake from Early
Intervention, to local level, to state level, national level and international
competition.
Horse riding (Hippotherapy)
Riding for the Disabled Association of Australia (RDAA) has many venues for
people to access horse riding individually and in groups. The literature about
this activity and its possible therapeutic effects is very mixed, in some part
due to the difficulty of assessing effects of intervention with such disparate
and changing elements. A comprehensive review of the literature regarding
horse riding as therapy, describes the different types of programs available
and examines their effectiveness for children and adults with motor, cognitive
and psychological impairments (Ratliffe & Sanekane, 2009). Movement
benefits from horse riding (also known as hippotherapy) can include improved
trunk control and balance and positive effects on the management of lower
limb spasticity (Debuse, Chandler, & Gibb, 2005). The quantitative evidence
for this is less supported, especially compared to other existing therapy.
However, there are obviously many other participatory benefits associated
with this activity, including extra incidental movement, problem-solving of
movement required for the different activities involved and positive social and
psychological effects. Parents and children give very positive feedback about
it (Debuse, Gibb, & Chandler, 2009).
7.5.3.3 Useful contacts
The NSW Office of Sport, Sport and Recreation website contains a useful
directory of contacts.
This association comes under the umbrella of NSW Sports Federation and
Sport and Recreation, NSW Communities. It aims to promote and develop
sport for disabled people in NSW. Their member associations include:
•
Riding for the Disabled Association (NSW) - provides details of
activities and contacts,
Enhancing Participation in Individual and Community Life Activities Practice Guide
64
•
Wheelchair sports NSW
•
Push and Power Sports - people in manual or electric
wheelchairs can play touch rugby or balloon soccer
•
Sailability NSW – assists people to locate a club in the local
area
•
Disabled Wintersport Australia
•
NSW Amputees Sporting Association
•
Blind Sporting Association of NSW
•
Deaf Sports Australia
•
Boccia NSW
•
Cerebral Palsy Sporting and Recreation Association NSW Inc
•
TenPin Bowling Association of NSW (Disabilities).
Other useful resources are the Can Child participation website and the All In!
Inclusion Guide. All-In! provides information and resources to help people
include children with disabilities in their activities.
The Nican website provides an Australia-wide information service including
sport and recreation. They refer people to organisations, which offer programs
and activities for people with disabilities.
7.5.3.4 Movement-based therapy activities
When it is not possible to access mainstream recreation, physiotherapists
may be required to implement gross motor, bike-riding and aquatic
physiotherapy programs. Gross motor groups can be a good way for a person
with disability to learn motor skills and develop strength and fitness.
Consideration should be given to individual choice, convenience and the
expected benefits or limitations of any movement-based therapeutic activity to
be established. Assessment and regular review of the activity’s effect on the
person’s movement will need to be included in the physiotherapist’s plan for
that person’s care. Carers and family members who are to be involved may
also need education and support within the different settings required for such
therapy plans.
Gross motor groups
What is the evidence?
•
There are limited studies investigating the effects of group therapy.
•
Similar increases in gross motor skills were found when comparing
group and individual interventions in children with developmental
delays with carryover of these skills to the home setting (Davies &
Gavin, 1994).
Enhancing Participation in Individual and Community Life Activities Practice Guide
65
•
Group circuit training in children with severe motor disability was
demonstrated to be a feasible method of improving functional
performance for children with disability. Children with cognitive
impairment were excluded from this study. (Blundell et al., 2003).
•
Group-based and individual-based motor skill training in children with
developmental coordination disorder were compared: finding that both
methods resulted in similar improvements (Hung & Pang, 2010).
Benefits of group therapy
In their literature review, “Therapy Services in the Disability Sector”, Bundy,
Hemsley and Marshall, (2008) found that groups may be more time-efficient
once they have been run a couple of times, can assist with caseload
management, and the group dynamic can have a positive impact (motivation,
learning by observation of peers, achievement of objectives relating to social
participation, peer/family support). However this has not been empirically
investigated.
Limitations of group therapy (Bundy, Hemsley, & Marshall, 2008) include:
•
difficulty in matching ‘group’ goals to ‘individuals’ in the group: some
individuals in the group may have needs that are not addressed by the
overall goals of the group
•
logistical constraints: groups often require individuals to move through
the program at the same pace. Missed sessions may not be able to be
made up
•
individual variation among group members
•
constraints of the setting for group therapy: ensuring carry-over of skills
from the group setting to other environments may require additional
direct therapy
•
not suitable for some people (behavioural issues, complexity).
Enhancing Participation in Individual and Community Life Activities Practice Guide
66
Table 7.3
Considerations for physiotherapists when organising gross motor groups
•
The ability levels and focus areas required of participants – will the group work?
•
How much space is available to conduct the group? (This will help determine the number of participants).
•
Will participants be able to transfer the skills they have learnt in the group to their natural environment? (Often the setting of
a group is not in the participant’s natural environment).
•
Consider warm up, group content and cool down as essential components.
•
Encourage participants to be punctual.
•
Will all participants do each activity at the same time, or will the group be run as a circuit class? Consider who is available
to assist the participants during the group as this will help with this decision.
•
Make the group motivating, use age appropriate music and activities.
•
What activities do participants already have on during the week? Will they be able to sustain attendance for the number of
weeks that the group is running?
•
Ensure time is set aside for the parents/carers to talk with each other outside of the group activity time. (This may mean
fewer distractions during the actual group).
•
Where possible, consider activities that develop skills which will allow participants to access generic activities.
Enhancing Participation in Individual and Community Life Activities Practice Guide
67
Bike Riding
Bike riding can be beneficial for people with disability across a range of ages
by improving muscle strength and endurance in the lower limbs, motor
planning and co-ordination, and cardiovascular fitness. An intensive 5-day
program to encourage people with Down syndrome to ride a 2-wheel bike led
to significant improvements in body fat percentage and time spent doing
physical activity at 1 year post intervention (Ulrich et al., 2011).
If a person with disability identifies bike riding as a goal, physiotherapists may
be involved by:
•
assessing bike riding ability
•
consulting on bike modifications
•
assisting with the procurement of a modified bike
•
and teaching bike riding skills.
It is important to be familiar with the ages that children normally learn to ride a
push-a-long bike, tricycle, two-wheeled bike with training wheels, a balance
bike and then a two-wheeled bike. All regulations with regards to the wearing
of helmets must be followed when working on bike riding with people with
disability.
The Bike Riding Checklist at Appendix 10 may be of assistance when looking
at bike riding.
Consider alternate options for people with disability who are not able to ride a
standard bike e.g. bikes with extra supports.
Aquatic physiotherapy programs
Physiotherapists may want to consider the use of aquatic physiotherapy not
only for recreation, health, fitness and endurance, but also for increasing
strength, developing movement patterns, increasing joint range, and
increasing self esteem and motivation (Harrison & Larsen, 2007).
Benefits of aquatic programs for people with disability include:
•
gross motor function: Children with cerebral palsy can improve gross
motor function on dry land after six week aquatic intervention, but
improvements were unsustained long-term (Dimitrijevic et al., 2012)
•
respiratory function: hydrotherapy might improve respiratory function in
children with cerebral palsy (Getz, Hutzler, & Vermeer, 2006)
•
quality of life: psycho-social effect of increasing quality of life, life habits
and socialisation (Getz, Hutzler, & Vermeer, 2007). (Research on
aquatic programs for people with disabilities.)
A systematic review of the research literature is presently being undertaken
regarding the improvement of gross motor skills in people with intellectual
Enhancing Participation in Individual and Community Life Activities Practice Guide
68
disability and the efficacy of aquatic therapy for children with intellectual
disability will be included in that review (Hocking, Pearson and McNeill, 2014).
The evidence on safety and effectiveness of aquatic exercise in children and
adolescents with cerebral palsy is limited but there is strong potential for
aquatic physical activity to benefit children and adolescents with cerebral
palsy (Gorter & Currie, 2011).
Due to the diversity of characteristics in paediatric neuro-motor impairments it
is difficult to conduct large group randomised control trials (Getz, Hutzler, &
Vermeer, 2006). Additional research is required evaluating the effects of
different durations, intensities and frequencies of aquatic exercise on fitness
levels of children with cerebral palsy (Kelly & Darrah, 2005).
A systematic review found that the evidence supported the benefits of
hydrotherapy in pain, function, self efficacy and affect, joint mobility, strength
and balance, particularly among older adults, and those with rheumatic
conditions and chronic low back pain (Geytenbeek, 2002).
When considering implementing an aquatic physiotherapy program, a useful
resource on the Australian Physiotherapy Association (APA) website is the
Australian Guidelines for aquatic physiotherapists working in and/or managing
hydrotherapy pools, available on the Aquatic Physiotherapy Group page.
Considerations for aquatic physiotherapy programs:
•
Are your cardiopulmonary resuscitation (CPR) skills current?
•
Has the participant been adequately screened? (The above
document and the facility you are using will provide you with
information about appropriate screening).
•
Does the person have current medical clearance? They should
been screened by their medical practitioner to ensure it is safe to
enter the water. (See precautions and contraindications as stated in
APA guidelines).
•
Have you considered using a hydrotherapy screening form to
ensure that all aspects of a person’s condition are covered,
including communication needs and medications. (Keep that
information by the pool in case it is required).
•
Are water-proof continence aids needed?
•
Will the person participate best in a group or an individual program?
•
Is the water temperature comfortable?
•
Does the facility you are using have the appropriate equipment to
assist the person to safely enter and exit the water and change
room facilities (e.g. pool hoist, ramp with water wheelchair, stairs
with a railing etc.)?
•
Who will be in the water with the person/s?
Enhancing Participation in Individual and Community Life Activities Practice Guide
69
•
Who will be out of the pool to “spot”?
•
Are any floatation devices required to support the person doing
exercises?
•
What are you trying to achieve in the water (what are the goals for
the program)? (activities for range of movement, strengthening,
functional tasks and pre-swimming skills will potentially look
different).
•
How long will you, the participant/s, and the carers stay in the
water?
•
Who will meet the costs of using the facility?
•
How will you support and educate the carers to continue to run the
program once you have completed your service with the person?
•
How will the outcomes of the program be measured?
•
How will the program/plan be written up?
•
When will the program be reviewed?
Active video games
Virtual reality in general is used in exercise programs for people with
intellectual disability as they value it and are attracted to it (Lotan, YalonChamovitz, & Weiss, 2010). A review of virtual reality for the assessment and
treatment of children with motor impairment found that it was a safe and
feasible intervention although there was as yet only low quality evidence to
suggest a therapeutic effect.
8. Prescription of assistive devices
“Mobility aids are designed to meet individual needs in mobility for a range of
environmental situations (such as mobility around the home, outside of the
home, in the community). Assistance provided by another person is also an
aid to mobility” (Centre for Developmental Disability Studies, CDDA, 2003).
A report by the Australian Institute of Health and Welfare considers the need
for therapy and equipment among people with cerebral palsy and similar
disability. Various sources of information have been used to examine the
effectiveness of therapy and equipment, and the nature and extent of met and
unmet need for therapy and equipment in Australia.
Enhancing Participation in Individual and Community Life Activities Practice Guide
70
8.1 Complying with relevant standards and legislation
when prescribing equipment
Part of a physiotherapist’s work involves prescribing equipment for people
with disability. In the first instance it is preferable to prescribe equipment from
a commercial manufacturer. This may be sourced directly from the
manufacturer or through a sponsor (i.e. an Australian company that imports
items from overseas). The equipment should be used as intended by the
manufacturer.
The Australian Register of Therapeutic Goods (ARTG) is a computer
database of therapeutic goods and was established under the Therapeutic
Goods Act 1989 (Cwlth). Unless excluded or exempt, medical devices must
be included on the ARTG before they may be supplied in, or exported from,
Australia. A category of medical device is “any instrument, apparatus, material
or other article…for the purpose of…diagnosis, monitoring, treatment or
compensation for an injury or handicap”. If prescribing equipment categorised
as a medical device for a person with disability, physiotherapists must ensure
that the item is listed on the Australian Register of Therapeutic Goods (unless
that item is exempt or excluded). It is good practice to document the ARTG
number in the person’s progress notes.
It may be easiest in the first instance to request the ARTG identification
number from the supplier, and then access the website to confirm that the
product is appropriately registered. It should be noted that at times the
supplier that the physiotherapist is ordering through is not the sponsor who
has the product listed on the ARTG. This is acceptable in situations where
that supplier has sourced the product from the sponsor. If however the
supplier has sourced it directly from the manufacturer themselves, they must
have the product listed on the ARTG. It can be helpful for organisations to
collate a list of medical devices commonly prescribed that have been
confirmed as listed on the ARTG. If a company advises that a product is
excluded or exempt from listing on the ARTG it is wise to have this confirmed
in writing by them.
The flowchart “Guide for FACS prescribers of commercially available
equipment: Therapeutic Goods Act Considerations” highlights these
processes. The flowchart is located at Appendix 4. Whilst specifically
developed for use in FACS, other organisations may find it of interest when
developing their own procedures.
If a physiotherapist believes that the product should be listed despite advice
from the supplier to the contrary, then the item should not be prescribed and
the specific case reviewed by the appropriate senior clinicians and legal
teams in the therapist’s organisation. More information is also available on the
TGA website at TGA - Health professional information and education. At
times manufacturers and / or suppliers discontinue items. Consequently they
remove these items from listing on the ARTG. If such an item has been
prescribed for a specific person and is still with that person, it does not need
to be recalled unless the product was discontinued for safety reasons.
However, if these items are in loan pools they should not be re-issued. Items
that have been recalled or discontinued for safety reasons should obviously
Enhancing Participation in Individual and Community Life Activities Practice Guide
71
not be issued, and if they are recalled, the attending physiotherapist may
need to offer extra support at that time.
It is advisable for physiotherapists to subscribe to the TGA’s email alert
service which advises when new alerts, recalls, monitoring communications
and advisory statements are published. Therefore, if physiotherapists are
issuing equipment from a loan pool they should first check the item has not
been discontinued by the supplier and removed from the ARTG. This is also a
consideration when looking at purchasing second hand equipment. The TGA
website advises that there are risks associated with issuing second hand
medical devices and that it is not advisable to buy second hand devices.
Important considerations include:
•
•
•
•
Is the product still covered by warranty?
Are the instructions for use included?
Is there a service provider who can undertake repairs?
Has the device undergone any repairs or has it been
refurbished?
The Australian / New Zealand Standard Management Programs for Medical
Equipment (AS/NZS 3551:2012) outlines procedures for managing medical
equipment (around procurement, acceptance, maintenance activities and
disposal). This standard applies whether the equipment is owned by an
organisation (including in an organisation’s loan pool), owned privately, is on
loan, on hire, on trial or donated. This standard recommends pre-purchase
evaluation of the equipment to ensure it will meet the clinical needs of its
users – this should include developing an understanding of the needs of the
user, assessment of the usability and ongoing safety of the medical
equipment, the whole of life cost of the system – including purchase costs,
consumables, parts, maintenance, risk, availability of hardware and software
upgrades and installation costs.
At times physiotherapists may choose to modify equipment, or make some
equipment from scratch for the person with disability. In Australia, the
Therapeutic Goods Administration administers therapeutic goods including
medical devices. There are a number of excluded goods, but some of the
equipment that physiotherapists make or modify is likely not to be excluded
and is therefore regulated under the Act.
Whether or not the equipment being made or fabricated falls within the
excluded category, it is recommended that all equipment being modified
and/or made meets basic safety and performance criteria embodied in the
following essential principle areas provided by the Therapeutic Goods
Administration:
•
use of medical devices not to compromise health and safety
•
design and construction of medical devices to conform with safety
principles
•
medical devices to be suitable for the intended purpose
•
long term safety
Enhancing Participation in Individual and Community Life Activities Practice Guide
72
•
medical devices not to be adversely affected by transport or storage
•
benefits of medical devices to outweigh any side effects
•
chemical, physical and biological properties
•
infection and microbial contamination
•
construction and environmental properties
•
medical devices with a measuring function
•
protection against radiation
•
medical devices connected to or equipped with an energy source
•
information to be provided with medical devices
•
clinical evidence.
For full details of what each essential principle involves visit: Essential
Principles Checklist (medical devices) .
FACS has liaised with the Therapeutic Goods Administration regarding
processes to ensure FACS therapists are employing best practice in the
provision of modified or fabricated equipment. A Best Practice Checklist for
provision of equipment modified or fabricated by FACS staff has been
developed, with an associated guide (see Appendix 5). It addresses the
essential principles outlined above. This checklist is used each time a FACS
therapist modifies or fabricates equipment. Other organisations / therapists
should be mindful that it was designed for the FACS setting and would need
to consider if it is appropriate for use in their setting.
In all instances of equipment prescription it is good practice to conduct a
formal documented risk assessment / clinical reasoning process as to whether
that piece of equipment is suitable for use by that particular person. See
Appendix 6 for an example of a risk assessment/clinical reasoning proforma.
Written information should be provided to the person and their carer when
newly prescribed equipment is issued. This would include a program outlining
how to incorporate the use of the equipment into the person’s daily routine
and settings and also information contained in the Newly Prescribed
Equipment Information sheet at Appendix 7.
It is important to be mindful, when lending or sharing equipment, of roles and
responsibilities regarding infection control. Standard precautions apply for
physiotherapists to protect their health and the health of the people they have
contact with. Professional associations have information regarding specific
infection control processes which apply to particular disciplines.
Organisational policies and procedures on infection control should also be
followed.
Additional information can be found in the Australian Guidelines for the
Prevention and Control of Infection in Healthcare (2010) - National Health and
Medical Research Council.
Enhancing Participation in Individual and Community Life Activities Practice Guide
73
Any adverse events with medical devices should not only be dealt with
according to organisation policy and procedures, but also reported to the TGA
at TGA - Incident reporting.
8.2 Factors to consider when prescribing equipment to
maximise mobility in all environments
Physiotherapists will be required to:
•
consider the person’s goals and whether equipment is needed to assist
them to achieve these goals
•
assess the need for equipment, which includes conducting a
documented risk assessment (see Appendix 6)
•
trial different models of equipment with the person and then make
recommendations for the purchase/loan of equipment. A common
reason equipment is not used is because people and their families
weren’t involved in choosing the equipment. Therefore, it is important
to include the person and their carers in the planning and decision
making process. Equipment for trial may be obtained from local loan
pools or by contacting equipment suppliers. Items can include
positioning/mobility equipment such as standing and walking frames,
crutches, prone wedges etc. as well as exercise equipment such as
bikes. A useful website is the Independent Living Centre NSW Product
Search. It provides information about what equipment is available, who
supplies it and how to contact them
•
provide recommendations for the purchase of relevant equipment to
support the person in a variety of settings (e.g. school, day programs).
A person may be able to use a walker at home but is not be able to use
it in the community and requires a wheelchair for that environment.
The Functional Mobility Scale (Version 2) is a useful tool for assessing
mobility in children with cerebral palsy across settings
•
make recommendations for orthotics and footwear to support
equipment use (as required)
•
consult with occupational therapists and speech pathologists where
appropriate for wheelchair and seating options, positioning for feeding
and respiratory function
•
seek funding options for the purchase of equipment and write
supporting letters/therapy reports for funding
•
complete the required documentation (e.g. the Newly Prescribed
Equipment Information Sheet (See Appendix 7) and a therapy
program)
Enhancing Participation in Individual and Community Life Activities Practice Guide
74
•
provide training to the person/carers in the use of the equipment (e.g.
transfers, timeframes for use, supervision, contraindications and alerts)
and document who the training was provided to in the clinical notes
•
review the use of the equipment to ensure it is meeting the person’s
goals.
Trialling and prescribing equipment can be a lengthy process with many
and varied factors influencing decisions and choices of equipment. It is
crucial to ensure that all parties understand and agree with decisions
made prior to ordering equipment, especially with regard to size and fit. It
is essential to provide written information to the person/carers on how to
maintain the equipment, who to call if it breaks and instructions on how to
use the equipment.
In addition organisations / physiotherapists should:
•
develop a list of equipment suppliers local to the area
•
establish repair and maintenance protocols for equipment in loan
pools.
8.3 Funding for equipment
Equipment can be highly expensive and physiotherapists may be involved in
seeking funding for it.
Consult with a senior physiotherapist for support and advice on equipment
prescription as required. Physiotherapists should consider whether the person
they are supporting can access any of the following funding options for the
equipment they require:
8.3.1 The National Disability Insurance Scheme (NDIS)
The National Disability Insurance Agency (NDIA) provides long-term,
individualised support that is reasonable and necessary to meet the needs of
people with permanent and significant disability, or who meet the eligibility
requirements for early intervention. This includes providing modified or
specialised equipment to allow participants to engage in activities of daily
living; recreational activities; mobility; personal care and safety; and to
maintain personal hygiene. The NDIA will fund the equipment item, specialist
assessment, set up and training, and repairs and maintenance where
required. As people transition between now and 2018 in to the scheme they
may become eligible to have their mobility equipment funded by the NDIA.
The NDIA does not fund equipment that is more appropriately funded through
other service systems or items that people would typically fund themselves.
For more information see the NDIS website.
Enhancing Participation in Individual and Community Life Activities Practice Guide
75
8.3.2 EnableNSW
EnableNSW was established in 2007 and has commenced implementation of
the major reforms based on recommendations made in the
PriceWaterHouseCooper “Review of the Program of Appliances for Disabled
People (PADP)” (2006) that were supported by the NSW Government. For
further information please refer to EnableNSW's website.
EnableNSW is responsible for the administration of the NSW Health disability
support programs including the Aids and Equipment Program (formerly known
as Program of Appliances for Disabled People (PADP)). This is a NSW
Government program to assist eligible residents of NSW, who have life-long
or long-term disability, to live and participate within their community by
providing appropriate equipment, aids and appliances. Information on
eligibility, prescription and provision guidelines, and application forms can be
found on their website. Online registration is required before making
applications. It is advised that therapists regularly check the EnableNSW
website to ensure that the most current version of forms is being used.
An online prescriber dashboard has also become available on the website.
The dashboard provides prescribers with the ability to look up information
about the progress of a person’s EnableNSW application, find out the status
of submitted requests, and lodge new requests for equipment and
consumables online without having to fill in forms.
The Equipment Allocation Program (EAP) is a process of issuing equipment
to EnableNSW consumers from stock. Stock equipment can be brand new or
equipment returned to Enable that has been refurbished to 'like new'
condition. Stock equipment can be requested for people living in certain areas
of NSW, and there is an equipment catalogue available online for therapists to
see details of available stock equipment.
EnableNSW is developing Prescription and Provision Guidelines for specific
equipment groups. These guidelines have been developed in consultation
with expert clinicians and are based on clinical evidence whenever possible.
They are designed to be a guide for the provision of equipment by
EnableNSW and do not replace evidence based clinical guidelines. The
guidelines have been developed to:
•
specify eligibility criteria for each equipment item
•
provide prompts regarding sound prescription and documentation
practice
•
provide a basis for consistent, transparent decision making.
EnableNSW has clear guidelines about qualifications and experience required
to be an equipment prescriber. The prescription of equipment must be
supervised by an appropriately qualified person if the physiotherapist does not
have the required experience. To become an approved EnableNSW
prescriber, therapists are required to complete an application form found on
the EnableNSW website.
Enhancing Participation in Individual and Community Life Activities Practice Guide
76
EnableNSW usually requires therapists to complete an equipment evaluation
form following supply of the equipment. This form is available at the same
website.
Therapists can subscribe to the EnableNSW quarterly newsletter by emailing
contact details to EnableNSW .
8.3.3 Aids and Equipment for Supported Accommodation Services
(AESA)
People with disability who live in FACS operated accommodation services are
currently ineligible for EnableNSW funding for specialised equipment needs.
FACS has a locally coordinated funding assistance program for adults living in
FACS operated group homes, AIDAS (Aids for Individuals in ADHC
Accommodation Services) – now known as AESA (Aids and Equipment in
Supported Accommodation).
Consult a FACS senior physiotherapist and/or contact person in the local
district for more information about the AESA (formerly known as AIDAS)
process. Some districts have a specific therapy report template that needs to
be completed when applying for AESA funds.
8.3.4 FACS Individual funding packages
People who are already receiving FACS individual funding packages can use
this funding to purchase equipment, which they have not been able to get
from other sources (eg. EnableNSW) if the need for the equipment is included
in the person’s plan.
For more information see the FACS Individual funding handbook.
People with disability in NSW who are receiving ADHC or ADHC funded
services may consider applying to the Therapeutic Brokerage Pool to purchase
equipment which they have not been able to access from other sources. This
equipment must support the person to work towards their goals.
8.3.5 Independent funding organisations
Alternative sources of funding such as charitable organisations may consider
providing funds for the purchase of equipment. The organisations that are
relevant to the person with disability can vary across geographical areas, so
consult with your senior physiotherapist/occupational therapists to obtain a
local list. A list of some national charitable organisations can be found in
Appendix 8.
When seeking funds from a charitable organisation, it is important to consider
the cost of ongoing maintenance of the equipment and whether the person/
Enhancing Participation in Individual and Community Life Activities Practice Guide
77
family will be able to cover these costs. These costs may need to be factored
into the original funding application.
8.3.6 Community Participation and Transition to Work
An Equipment and Modifications Fund has been established to support
people with disability accessing Community Participation or Transition to Work
Programs. The service provider is able to apply for equipment or building
modifications to help support service users attendance and participation in the
program. This fund does not provide equipment or modifications that are funded
from any other NSW or Australian Government program (e.g. Aids and
Equipment Program, Continence Aids Assistance Scheme). Applications for
equipment and building modifications must be supported by an appropriately
qualified professional.
8.3.7 Equipment and modifications to support employment
The Australian Government Employment Assistance Fund may provide
financial assistance for people with disability and mental health conditions to
purchase a range of work related modifications and services. This fund is
available for people who meet the eligibility criteria, and who are about to start
a job or who are currently working, as well as those who require assistance to
find and prepare for work.
For more information visit Employment assistance fund.
8.3.8 Younger People in Residential Aged Care
FACS has engaged and funded EnableNSW to manage the equipment
provision for people with disability accessing the NSW Younger People in
Residential Aged Care (YPIRAC) program.
FACS makes referrals for YPIRAC clients with equipment needs directly to
EnableNSW. If the person is not already linked to a clinical service,
EnableNSW will identify a local clinician and refer the person for assessment.
If a local service cannot be identified, or is unable to provide a timely service,
other options will be considered.
Following assessment, clinicians will be required to complete two key tasks:
1. Prescribe equipment required immediately using the EnableNSW
equipment request processes.
2. Provide a summary of the person’s long term or future equipment needs
if/when their accommodation setting changes.
Enhancing Participation in Individual and Community Life Activities Practice Guide
78
Formal assessment reports are not required. However, any other issues
identified by clinicians should be referred to the person’s FACS YPIRAC
Support Planner.
EnableNSW has employed an occupational therapy advisor to support the
YPIRAC program and provide information to assist clinicians.
(EnableNSW, November 2011)
Any questions about equipment prescription for NSW YPIRAC clients should
be directed to EnableNSW on 1800-362-253
or [email protected]
8.3.9 Helping Children with Autism/Better Start Funding
The Department of Social Services helps to support people with disability
through programs and services and benefits and payments. Further support
is provided through grants and funding for organisations delivering services
for people with disability.
For more information regarding this funding please refer to link below;
HCWA/Better Start Funding
8.3.10 Equipment loan pools (ELPs)
Most public hospitals operate equipment loan pools (ELP) for short term loan
of basic equipment such as walking aids, for the benefit of inpatients and non
inpatients. Equipment can be accessed at a cost to the person. Inquiries
should be made to the person’s local hospital. Please note that Enable NSW
does not have a loan pool service.
Organisations such as the NSW Paraplegic and Quadriplegic Association, the
Australian Quadriplegic Association and the Multiple Sclerosis Society
occasionally have items for loan. The Cerebral Palsy Alliance’s “Holiday
Equipment Loan Pool” is an initiative of Children’s Services. Eligible
individuals may access a pool of portable, light weight equipment which will
assist access, the management of personal care and allow participation in
social activities during holidays away from home. For further information,
please contact Ryde office on Ph: (02) 8878 3500.
Equipment can often be hired from equipment suppliers, at a cost including a
deposit.
Equipment for use at childcare centres may be accessed through the NSW
Inclusion Specialist Equipment Pool. For school aged children equipment may
be available for loan through the NSW Department of Education and
Communities for the child’s use at school.
Enhancing Participation in Individual and Community Life Activities Practice Guide
79
There may be other loan pools available in the local area. Physiotherapists
may find out information about these via local communities of practice.
8.4 After the equipment is purchased and delivered
It is the responsibility of the supplier/manufacturer to ensure that all
equipment delivered is in good working order, set up correctly for the person’s
use and that the person and family/carer have received adequate training in
its correct use. The therapist is responsible for supporting the person and
family/carer in this process and ensuring that the equipment meets the agreed
goals. All details of the equipment, including its use/purpose, the funder and
the supplier and contact information, should be recorded on the Newly
Prescribed Equipment Information sheet (Appendix 7) and given to
families/carers for their record.
Physiotherapists need to ensure that a suitable program of support for
movement/positioning is developed around the use of the equipment that
reflects the person’s goals and supports the integration of the prescribed
equipment into the person’s daily life.
9. The impact of ageing on movement for
people with disability
Increased life expectancy during the past 30 years means that ageing has
become an integral part of the life-course for people with intellectual disability
(Doody, Markey, & Doody, 2012)
9.1 Healthcare vulnerability of people with disability
For everyone, aging tends to bring the unwanted effects of decreased
physical mobility. For people with intellectual disability a “combination of lifelong disorders and their associated medications use, and the “normal” ageing
processes, puts them at a greater risk for ill-health and an earlier burden of
disease in terms of neurological decline…” (Haveman et al., 2009, p. 40).
Although little research has been undertaken into the specific area of
physiotherapy interventions for people with intellectual disability who are
aging, preliminary studies suggest that mobility limitations and difficulties do
increase with age and vary according to the degree of intellectual disability
and the gender of people with intellectual disability (Cleaver, Ouellette-Kuntz,
& Hunter, 2009).
Enhancing Participation in Individual and Community Life Activities Practice Guide
80
9.1.1 Dementia and disability
40% of older adults with disability will develop signs of Alzheimer’s or other
forms of dementia such as vascular or fronto-temporal dementia during their
fifth and sixth decades with onset commonly occurring in the mid-fifties; much
younger than the general population (Strydom et al, 2010).
Dementia can present differently for people with intellectual disability
compared to the general population because of pre-existing cognitive
impairment or other co-existing conditions (Strydom et al, 2010). For example,
the age of onset of Alzheimer’s disease in people with Down syndrome tends
to be younger than that for the general population (Lee et al., 2011).
The presentation and diagnosis of dementia for people with Down syndrome
is complex and complicated by a variety of different factors, for example:
“Psychosocial masking” occurs where the lack of social sophistication and life
experience makes the diagnosis of dementia difficult for medical practitioners
(Stanton & Coetzee, 2004). The diagnosis of dementia can be complicated by
the communication difficulties commonly experienced by people with Down
syndrome and it is often necessary for carers and families to provide the
necessary information to the doctor for diagnosis of dementia.
“Diagnostic overshadowing” occurs when changes in behaviour or abilities are
attributed to existing disability rather than a developing dementia (Stanton &
Coetzee, 2004). This is particularly important in intellectual disability when
healthcare issues can present or deteriorate, for example challenging
behaviours or falls. Staff, therapists, carers and families need to be very alert
to such changes occurring for the person concerned and avoid attributing
such issues just to existing disability.
9.2 Promoting mobility for people with an intellectual
disability as they age
The physiotherapist’s role in assisting people with intellectual disability as they
age involves liaising and working closely with other healthcare practitioners
including occupational therapists, clinical nurse consultants, doctors,
dieticians, speech pathologists, psychologists, behaviour support
practitioners, orthoptists and audiologists.
Table 9.1
Examples of physiotherapy roles in healthcare for older adults with intellectual
disability
Promoting community, leisure, and health-related fitness activities.
Helping prevent secondary conditions and promotion of wellness by providing
Enhancing Participation in Individual and Community Life Activities Practice Guide
81
Examples of physiotherapy roles in healthcare for older adults with intellectual
disability
anticipatory guidance.
Providing input and intervention for mobility, biomechanics, materials and
equipment access, public transportation, assistive technology, and movement
dysfunction.
Practising problem-solving skills with people such as asking for help and
instructing others to correctly and safely assist in performance of activities.
Examples of areas requiring such problem-solving can include pain
management, mobility management, communication independence, rights
advocacy and exploration of recreational activities.
Considering the need for assessment and consultation regarding how to live
and work within the community rather than within a segregated setting.
Collaborating with other professionals (vocational, educational, adult living,
medical, and other community-based agencies) to address barriers to function
and ensure success.
Offering assessments and consultations in community settings where people
“learn, work, play and love” (United Nations, 1986) p. 2).
Helping prevent secondary conditions while promoting wellness.
Consulting and collaborating with medical and non medical professionals to
facilitate and support the wellbeing of individuals with intellectual disabilities.
Information sourced from (Orlin et al., 2014)
Physiotherapy roles vary from those needed for children but will similarly
include the assessment, monitoring and management of mobility for people
seeking their supports and advice for their families and carers. However,
physiotherapists will need to consider supports beyond direct or hands-on
forms of physiotherapy intervention if wellness and wellbeing are to be
maximised for people with intellectual disability as they age (See Table 9.1).
The concept of aging may not be understood well by all people with
intellectual disability and their understanding of the mechanism of physical
illness may be limited. In a study into perceptions of health by people with
intellectual disability, participants identified three particular themes of concern
and interest to them, including:
•
participating in activities
Enhancing Participation in Individual and Community Life Activities Practice Guide
82
•
nutrition
•
self-care (Connolly & Montgomery, 2005)
People with intellectual disability are concerned about their participation in life
roles and activities and their interests will be well-served by physiotherapists if
those needs and desires can be viewed via the biopsychosocial model of
healthcare.
Specific syndromes, for example, Fragile X syndrome and Down syndrome
can be associated with additional musculoskeletal disorders as people age.
The physiotherapist should consider whether the person they are supporting
has a diagnosis of a specific syndrome, and familiarise themselves with the
specific issues that can manifest themselves within those syndromes.
As people with intellectual disability age, some of the long-term consequences
of interventions they have undergone throughout their life may become
apparent and start to take effect. For example, side effects of some
medications can include movement disorders or bone demineralisation.
To date there is no research on optimal physiotherapy supports for people
with dementia and intellectual disability. Physiotherapists may therefore need
to draw from the dementia literature regarding the value of movement and
exercise for people with dementia. Examples include:
•
balance difficulties (which can increase the risk of falls) can be
improved by physiotherapy-led exercise (Christofoletti, et al., 2008)
•
exercise can positively influence behavioural and psychological
symptoms of dementia (Cerga-Pashojo et al., 2010)
•
exercise can improve cognitive function and mood and reduce the
need for medication (Lawlor, 2002).
Physiotherapists can assess physical impairments, activity restrictions and
limitations to participation for people with dementia and provide supports to
assist carers to care for and promote people’s independence. People with
dementia often have difficulty expressing pain and physiotherapists can assist
in identifying and treating pain and liaise regarding pain management
techniques with carers and families.
For older people with intellectual disability living in group home situations or
with carers, physiotherapy can also provide valuable support and advice
regarding the many issues that can arise for people as a result of their
dementia.
Useful resources
Choose Health: Be Active, A physical activity guide for older Australians Department of Veterans’ Affairs and Department of Health and Ageing in
association with Sports Medicine Australia
Physiotherapy works: Dementia care.
Enhancing Participation in Individual and Community Life Activities Practice Guide
83
9.3 Falls intervention and prevention
9.3.1 Incidence of falls
Fall related injury is one of the leading causes of morbidity and mortality in
older Australians. For people with intellectual disability, 50 – 60.2 % of injuries
were attributed to a fall (Hale, Bray & Littman, 2007). People with intellectual
disability were twice as likely to be hospitalised than the general population
from falls-related injuries (Sherrard, Tonge, & Ozanne-Smith, 2001). As the
life expectancy of the population increases so does that of the population with
intellectual disability, so people with intellectual disability will face an
increased risk of falls as they continue to live longer lives.
9.3.2 Causes of falls
Accidental falls in older adults are associated with low physical functioning,
reduced postural and gait stability, slow righting responses and orthostatic
hypotension (Ganz et al., 2007). Such issues can be of relevance to people
with intellectual disability but the effects of aging alone can also cause them to
fall (Bruckner & Herge, 2003; Hsieh, Heller, & Miller, 2003; Wagemans &
Cluitmans, 2006). Falls risk factors for people with intellectual disability
include “concurrent medical problems, medication, the context and
environment of falling, movement impulsiveness and distractibility, and visual
deficits” (Hale, Bray, & Littman, 2007). However, despite this list, it is notable
that “balance, comfortable gait speed, strength, and muscular endurance
were not significant predictors for falls in older adults with intellectual
disability” (Oppewal et al., 2014, p. 1323).
Falls are seldom due to a single cause. Numerous intrinsic factors and
extrinsic factors may contribute to postural instability and increase the risk of
falls. Risk increases exponentially when people have more than one factor
(Scott et al., 2007).
Intrinsic factors include impaired balance, reduced mobility, muscle weakness
history of falls, cognitive impairment, incontinence, foot deformities, syncope,
dizziness, the use of medications that affect the central nervous system /
cardiovascular system, psychotropic medications, visual impairment,
depression and impaired peripheral sensation.
Extrinsic factors include: poor footwear, poor lighting, environmental hazards
(floor surfaces, furnishings, furniture placement), incorrect use of assistive
devices (e.g. walkers, canes), lack of adequate supervision for people with a
high risk of falling.
Further research is needed to prioritise the risk factors for falls in people with
intellectual disability and to develop effective strategies for injury prevention.
A longitudinal cohort study is currently being conducted by the Falls and
Balance Research Group of Neuroscience Research Australia. The study
Enhancing Participation in Individual and Community Life Activities Practice Guide
84
aims to develop an understanding of factors that contribute to risk of falling in
older people with cognitive impairment and dementia. Two hundred and fifty
community and/or hostel-dwelling older adults (age 65+) with mild to
moderate cognitive impairment will be recruited from a number of sources
including hospitals, out-patient clinics, community services, retirement villages
and hostels.
Through this study, it is anticipated that risk factors and underlying
mechanisms most strongly associated with falling in cognitively impaired older
people will be identified. The information will be used to design targeted and
tailored intervention strategies to reduce falls and fractures in this high risk
population. The results of this study could have implications for the prevention
of falls in people with intellectual disability.
For further information, refer to the Neuroscience Research Australia website
9.3.3 Assessment of falls risk
“Falls risk is multi-factorial, involving the interaction of individual abilities,
behavioural patterns and contextual factors” (Cahill et al., 2014, p. 330).
Physiotherapists are often asked to provide supports to people who have
already fallen. However regular screening with assessment of both the
physical and environmental considerations is recognised as a valuable
contribution towards preventing and/or reducing falls across the population.
A “dynamic fall scenario” occurs when a variety of factors interact to increase
falls risk to the point of a fall occurring. Therefore a process of fall
reconstruction using the observations of carers can help determine what
particular factors may have caused that person to fall (Cahill et al., 2014).
Any assessment process for a person who has fallen or who has been
screened as at risk of falling should consider the following:
•
observations by the person’s family and carers regarding areas of falls risk
concern physically, environmentally and behaviourally
•
static and dynamic balance in sit and stand
•
gait/locomotion qualities noting walking speed, step lengths, step
symmetries and gait abnormalities
•
need/ appropriateness of adaptive devices in place, for example, walking
aids, handled belts, hip protectors, bed or chair pad alarms
•
cardio respiratory function and endurance
•
functional mobility
•
muscle strength: gross functional upper limb and lower limb strength
assessments with attention to quadriceps. The presence of weakness in
quadriceps group was a valid predictor of falls in women aged 65 to 75
Enhancing Participation in Individual and Community Life Activities Practice Guide
85
years of age (Carter et al., 2002). Assessment of spinal extensor
weakness which may increase forward lean and increased falls risk
•
posture - review of postural instability and presence of increased postural
sway
•
range of movement
•
sensory testing: sensation to light touch and proprioceptive deficits can
result in compensatory strategies being adopted to maintain balance
•
visual impairments warrant further referrals
•
assess environmental risk factors in the home and the community.
9.3.4 Falls Risk Assessment Tools
Falls risk assessment tools are designed to help target those at greatest risk
of falling and to assist with the development of prevention strategies.
Physiotherapists will need to use falls risk assessment tools with
discrimination. If a person with intellectual disability does not properly
understand how to carry out an assessment test, that test will fail to give a
clear indication of that person’s balance abilities. Therefore their falls risk
assessment will be inaccurate and of little use to assist falls prevention for
them (Waninge, van Wijck, Steenbergen, & van der Schans, 2011).
Given the difficulty of establishing sufficient understanding of balance test
items by people with intellectual disability, use of a scored observational tool
might also provide an alternative means of assessing balance and gait
abilities (Hale, Bray, & Littman, 2007). This suggestion has been supported by
a more recent study which argued for the use of a multi-factorial falls risk
assessment to be used via a multi-disciplinary falls clinic for people with
intellectual disability (Smulders et al., 2013). Similarly, fall reconstructions and
ethnographic-style interviews conducted in the person’s home could be a
useful way to prevent falls in people identified as at risk (Cahill et al., 2014).
Some examples of possible observational assessment tools that may give
some information about falls risk include:
•
Activities-specific Balance Confidence Scale
•
Gait Assessment Rating Scale
•
videoing of familiar tasks (climbing stairs, getting dressed) to be
watched and scored later by a therapist.(Hale, 2014)
•
Sit to stand test
•
4 step square test
•
Functional reach test.
Enhancing Participation in Individual and Community Life Activities Practice Guide
86
As with the above tests, the following assessment tools have not been
validated for use with people with intellectual disability. However, they still
may be used for people with disabilities. No single falls risk assessment will
be appropriate for all people across all environments but the following
assessment tools may be worth considering:
•
Berg Balance Scale
•
Modified Berg Balance Scale
•
Tinetti’s Performance-oriented Mobility Assessment (POMA)
•
Timed Up and Go Test (TUG)
•
The NeuRA QuickScreen © Clinical Falls Risk Assessment (or
QuickScreen ©)
•
Fallscreen.
9.3.4.1 Berg Balance Scale.
This performance-based scale evaluates standing balance during functional
activities. This tool has been used with people who have exhibited a decline in
function, balance or unexplained falls. The full tool has been validated for use
for people with Parkinson’s disease, stroke and multiple sclerosis and reports
90% specificity in predicting non fallers and a 64% sensitivity in fall prediction
(Riddle & Stratford, 1999). However, given the difficulties for people with
intellectual disability in carrying out the full test, it has been argued that using
a modified Berg Balance Scale (mBBS) is also feasible (Hale, Bray, &
Littman, 2007). A study to determine the reliability and efficacy of a mBBS for
people with severe intellectual and visual disabilities also reported that 10 out
of 12 elements of a mBBS can provide a suitable and reliable falls risk test for
this population (Waninge et al, 2011).
Despite the increasing complexity of instructions as the test progresses in the
Berg Balance Scale, it is a preferable test to use for testing balance for people
with intellectual disability than the Tinetti Instrument (see below), due to its
more objective evaluation (Hilgenkamp, van Wijck, & Evanhuis, 2012).
9.3.4.2 Tinetti’s Performance-oriented Mobility Assessment (POMA)
This performance based tool evaluates balance and gait. An isolated study,
reported the POMA was successful and accurate for people with intellectual
disability (Chiba et al., 2009). The Tinetti Instrument has answering
categories, which are quite subjective, for example, describing gait as
steady/unsteady.
9.3.4.3 Timed Up and Go Test (TUG)
A quick to administer tool used to assess dynamic balance and mobility skills
predominantly in the older population group. The TUG is a simple screening
test that is a sensitive and specific measure of probability for falls among older
adults (Shumway-Cook, Brauer, & Woolacott, 2000).
Enhancing Participation in Individual and Community Life Activities Practice Guide
87
9.3.4.4 The Community Balance and Mobility Scale
This is a valid and reliable outcome measure for the ambulatory individual
with traumatic brain injury and may provide useful information to assist with
the assessment of balance for people with intellectual disability (Howe et al.,
2006). Participant therapists in Howe’s study agreed that the test’s guidelines
were clear and concise and took approximately 30 minutes to administer.
All these tools warrant controlled clinical trials and further investigation to
determine their validity and reliability for use for people with intellectual
disability.
9.3.4.5 The NeuRA QuickScreen © Clinical Falls Risk Assessment (or
QuickScreen ©).
This was developed by researchers at Neuroscience Research Australia
(NeuRA) and is a multifactorial assessment tool, which was designed
specifically for use in clinical settings. It takes 5-10 minutes to administer
using minimal equipment, which is portable. It has been rigorously tested in a
large sample of community-dwelling older people in which it was found that
performance in the QuickScreen © was able to accurately predict faller status.
In a sub-group of these people, the QuickScreen © measures exhibited good
reliability, demonstrating low measurement error and a high ability to detect
change in physical status over time, although for people with intellectual
disability, a simple and shorter test may be more suitable. See here for further
information.
9.3.4.6 Fallscreen
Fallscreen is a multifactorial falls risk assessment tool, which is designed to
identify people at risk of falls, to identify which specific risk factors are placing
the person at risk and to guide interventions for the prevention of future falls. It
takes 15-20mins to administer, using the specialised equipment
recommended. The interpretation of assessment results requires use of
computer software, and the quantitative scoring method allows for change in
individual test scores to be compared over time.
9.3.5 Supports to prevent falls
A 2009 systematic review of randomised controlled trials assessed
interventions for preventing falls in community dwelling older people and
identified the following effective interventions (Centre for Health Advancement
NSW Department of Health, 2011):
•
exercise programs, for example, Otago exercise program, NSW
Stepping on Programs, Tai Chi group exercise
•
therapeutic exercises and functional training that address specific
impairments in strength, balance and ROM to reduce deficits in
transfers, posture and gait
Enhancing Participation in Individual and Community Life Activities Practice Guide
88
•
exercises that have a focus on balance training
•
programs of at least 2 hours exercise per week for 6 months or longer
(more effective than lower dose programs).
In 2008 the NSW Department of Health commissioned recommendations
for physical activity to prevent falls in older people based on meta-analysis
of exercise interventions. These recommendations included:
•
home hazard assessment and modification for people with disability at
high risk of falls and/ or with severe vision impairment
•
review of any assistive device is necessary to ensure they are being
used appropriately and are not imposing a higher falls risk
•
education for individuals, families and staff to increase the awareness
of anyone at risk of falling. Education should emphasise the importance
of being healthy, active and being as independent as possible.
A multi-faceted, interdisciplinary approach is indicated for falls intervention
and prevention strategies. Physiotherapists will need to work closely with a
wide range of service providers (physicians, orthoptists, audiologists,
podiatrists, occupational therapists, clinical nurse consultants, dieticians,
speech pathologists, psychologists and behaviour support practitioners) to
assess, monitor and manage mobility for people with intellectual disability if
falls are to be prevented. Examples of such collaboration could include:
•
The provision of education to the person and their family/carer to assist
them to understand their falls risk factors (acute and chronic) and
actions required to address them. Education should emphasise what
people can do to be healthy, active and independent, rather than
focusing on “falls prevention”, which may be seen as negative and
demotivating.
•
The involvement of carers is of primary importance in the prevention of
falls for people with intellectual disability. They will have highly
personalised information about the person’s daily routines and habits,
which can provide useful information towards fall reconstruction
strategies and falls prevention strategies. Physiotherapists may need to
train carers in monitoring the environment and identification of hazards,
the use of prescribed equipment and the implementation of exercise
programs.
•
Working in collaboration with an occupational therapist in order to
modify environmental hazards and to deliver functional training to
maximise independence in activities of daily living.
•
A referral to psychology may be required if the individual appears
depressed or anxious or has significant fear of falling resulting in self
imposed activity limitations.
Enhancing Participation in Individual and Community Life Activities Practice Guide
89
•
The inclusion of dietician support is indicated if nutrition is identified as
a component of risk for the individual. This can be particularly important
where bone density or skin integrity is compromised.
The involvement of, and liaison with, medical practitioners is critical in the
falls risk management for people with intellectual disability. It is important
to recognise any sudden deterioration in mobility status and refer back to
the local doctor, the medical practitioner, neurologist or orthopaedic
surgeon (depending upon the identified change). The presence of epilepsy
for people with intellectual disability can also cause falls resulting in
increased levels of injury. People with epilepsy will not be able to avoid
falling during epileptic activity or protect themselves as they fall.
Medication reviews with their doctor can help to provide better epileptic
control and thereby assist in the prevention of falls and improved quality of
life. A mix of interventions tailored to the perspective and individual desires
of the person needing assistance with falls prevention are key components
in any program. The principle of maintaining the highest quality of life
possible whilst aiming for a safe environment and practices should guide
recommendations. Risk-taking, autonomy and self-determination need to
be supported, respected and considered within the falls prevention care
plan for each person at risk of falling.
9.3.6 Useful resources for falls prevention
NSW Falls Prevention Network
Austalian Commission on Safety and Quality in Health Care
Don’t Fall For It: Falls Can Be Prevented – Department of Health and Ageing
Choose Health: Be Active, A physical activity guide for older Australians -The
Department of Health, Australian Government
Enhancing Participation in Individual and Community Life Activities Practice Guide
90
9.4 Educating about physical changes across the lifespan
Physiotherapists may need to research the likely progression of physical
changes relating to a person’s condition across their lifespan and at key
transitions. For example, Driscoll and Skinner (2008) report that frequently
encountered musculoskeletal complications of neuromuscular disorders in
children include scoliosis, bony rotational deformities and hip dysplasia. In
these cases they may need to have a discussion with the person and their
family/ carer. Discussion regarding the possible complications may need to
occur at various stages of contact between physiotherapists, carers and
families, during assessment, during ongoing therapy sessions or when
reviewing outcomes of intervention. The relevant information can be passed
on in an interactive manner so parents/carers are not frightened but are
prepared for the possible occurrence of change.
9.4.1 Referral for x-rays and orthopaedic review
If there is any change in walking or pain, discomfort when sitting or moving,
change in posture, or the hip surveillance guidelines are indicating a need,
physiotherapists may need to liaise with a general practitioner or specialist for
referral for an x-ray. This may indicate that referral for an orthopaedic
specialist is necessary. If the person lives a long distance from the relevant
specialists, photos or DVD recordings of the person’s posture and movement
can be sent (with the permission of their guardian) to assist with the
specialist’s decision-making.
Enhancing Participation in Individual and Community Life Activities Practice Guide
91
10. Evaluating outcomes related to
people’s goals
10.1 Introduction
The evaluation of outcomes for people with disability takes place throughout
the ongoing process of dynamic assessment as well as towards the end of a
therapist’s intervention with a child or adult with disability. In some situations,
that therapist may not see that person again. In other situations, they may see
them later within the same service following a request for further supports. In
either case, evaluation of outcomes related to goals, which have been set by
the person, their family and carers with the physiotherapist provides a variety
of benefits.
Careful and sensitive evaluation of outcomes related to people’s goals is an
important way for physiotherapists to monitor the safety and effectiveness of
supports for people with disability. It provides the physiotherapist with a way
to visualise and plan further directions for a person’s movement development.
People with disability, their families and carers can be reassured regarding
their input as well, building trust between them and the therapist and
promoting a calm and relaxing relational environment for the people in
whichever setting has been chosen.
Aiming efforts towards the achievement of a desired goal gathers and focuses
energy towards that goal, while setting timelines for its achievement can
improve organisation and effort by all concerned. The physiotherapist has a
responsibility to be accountable professionally (to their peers and people with
disability) and time-wise (to their employers).
10.2 Assisting people and/or their carers to monitor
intervention
A timeframe for reassessment should be set with the person/carers to
measure change. Outcome measures such as GAS and COPM (see Section
4: Assessment of movement abilities and constraints) can be used to
determine if the physiotherapy program is meeting the goals effectively. It is
important to show the person/carers how to identify if improvements have
occurred, and to provide feedback about how they are implementing the
program (Novak, Cusick & Lannin, 2009).
Skill acquisition can sometimes be slow and many tools are not sensitive
enough to measure incremental changes in function over time. Photographic
and video footage may be used to record baselines and changes in function in
a pictorial form where other measures are difficult to take reliably.
Alternatively, an outcome measure such as GAS or COPM may assist the
Enhancing Participation in Individual and Community Life Activities Practice Guide
92
person/carers to identify if improvements have occurred, and to provide
feedback about how they are implementing the program (Novak et al., 2009).
10.3 Coaching
When a coaching model was used in the family-centred COPCA program as
compared to a traditional physical therapy program, based on
Neurodevelopmental treatment principles, it resulted in changes when
functional tasks were measured (Blauw-Hospers et al., 2011). The video
analysis used to determine difference between the programs, highlighted that
although all therapists thought they were teaching parents home programs as
part of their sessions, only 4% of the time was actually spent on
teaching/coaching activities (Blauw-Hospers et al., 2010) before therapists
underwent training for the COPCA program (Dirks et al., 2011). Further
research is needed to determine the formats and intensity of coaching needed
to assist people and their families to effectively use therapeutic strategies in
their own lives.
If there are difficulties identified with achieving the outcomes, multiple factors
need to be considered, rather than assuming the intervention strategy has
been ineffective. Communicate with the person/carers to re-determine the
goals of intervention or to modify the strategies to achieve them.
10.4 Assisting people and/or their carers to choose the
next goal
When the goals have been achieved, physiotherapists will need to determine
whether further intervention should be provided for a period of time on new
goals or if they require no further physiotherapy intervention at this point. In
some situations this may include the option of returning to a waiting list for
more therapy. This should be decided in collaboration with the person/carers,
and where relevant with senior therapists and line managers.
The decision to work on new goals should be based on a reassessment of the
person to determine which movement abilities it is appropriate to develop
next. If the person requires no further physiotherapy intervention,
physiotherapists should ensure that they are clear about whom to contact if
their situation changes and they require further physiotherapy support.
Enhancing Participation in Individual and Community Life Activities Practice Guide
93
11. Appendices
Appendix 1: Outcome Measures
Please note that FACS does not endorse any particular resource.
The Canadian Occupational Performance Measure
The Canadian Occupational Performance Measure (COPM) is a person
centered, goal focused outcome measurement tool. The tool supports people
to identify tasks that are important to them and that they want or need to do.
The COPM explores how well the person perceives that they perform the task
and how satisfied the person is with their performance of the task.
Although the COPM was originally designed for use by Occupational
Therapists, it is now used by many professions, across all ages, with any
diagnosis and in any setting 7.
The tool is a standardised instrument with a semi-structured interview format
and structured scoring methods. The interview can be completed by the
person, their family members or carers and by proxy. The person or the
person’s family or career choose up to 5 tasks and rate them in order of
importance. The person then uses a 10-point scale to rate their performance
and their satisfaction with their performance on completing the task. Total
satisfaction and performance scores are calculated.
The COPM is quick to administer, on average it takes 20 to 40 minutes and to
score. No standardised or accredited training is required to use the COPM
although training is recommended.
Information on the administration and scoring of the COPM is outlined in the
manual.
Reliability and Validity of the COPM.
The COPM has good reliability and adequate test re-test reliability. It has
good validity and adequate criterion validity . Research suggests that a
change score of 2 or more points represents a clinically important change.
Is This Tool Reliable and Valid For The Population With Intellectual
Disability?
The COPM is reliable and valid when scored using the support of a family
member, carer or proxy. When used with a person with intellectual disability
the COPM will often be scored this way, hence it is reliable and valid to use
with people who have intellectual disability.
Enhancing Participation in Individual and Community Life Activities Practice Guide
94
What does this tool measure?
•
•
a person’s performance and their satisfaction with their performance of the
tasks that they have identified as being important to them
the outcome of an intervention.
Potential uses of the tool.
•
to identify person specific issues that are not identified or assessed with
standardised measurement instruments
•
to support a person to identify the tasks that are important to them to be
able to perform
•
to define the goals of an intervention program. It can be used with Goal
Attainment Scaling
•
to measure the outcome of the intervention program
•
for use in research to identify which intervention approaches have
evidence supporting their use.
REFERENCES.
Carswell, A., McColl ,M.A., Baptiste, S., Law, M,. Polatajko, H., & Pollock, N. (2004).
The Canadian Occupational Performance Measure: A research and clinical literature
review. Canadian Journal of Occupational Therapy, 71(4), 210-222.
Chan, C. C., & Lee, T.M.C. (1997). Validity of the Canadian Occupational
Performance Measure. Occupational Therapy International, 4, 229-247.
Cusick, A., Mcintyre, S., Novak, I., Lannin, N., & Lowe, K. (2006). A comparison of
goal attainment scaling and the Canadian Occupational Performance Measure for
paediatric rehabilitation research. Pediatric Rehabilitation, 9(2), 149-157.
Doig, E., Flemming, J., Kuipers , K,. Cornwell, P. L. (2010). Clinical Utility of the
Combined use of the Canadian Occupational Performance Measure and Goal
Attainment Scaling. American Journal of Occupational Therapy, 64(6), 904-914.
Finch, E., Brooks, D., Stratford ,P.W., & Mayo, N.E. (2002). Physical Rehabilitation
Outcome Measurers. A Guide to Enhanced Clinical Decision Making, Canadian
Physiotherapy Association.
McColl, M., Paterson, M., Davies, D., Doubt, L., & Law, M. (2000). Validity and
community utility of the Canadian Occupational Performance Measure. Canadian
Journal of Occupational Therapy, 67(1), 22-30.
Novak, I. (2013). Canadian Occupation Performance Measure (COPM). Aged
Disability and Home Care.
Wallen , M. A., & Ziviani, J. M. (2012). Canadian Occupational Performance
Measure: Impact of blinded parent-proxy ratings on outcome. Canadian Journal of
occupational Therapy, 79(1), 7-14.
Enhancing Participation in Individual and Community Life Activities Practice Guide
95
Goal Attainment Scaling
The Goal Attainment Scale supports a person to identify what is important to
them and to set goals to work towards. GAS is an individualised, person
centred, goal focused outcome measure.
The GAS can be used with children and adults, across all disabilities and by
all disciplines. It is a semi-structured interview. It can be completed by proxy if
needed. A unique feature of the GAS is that a range of 5 possible outcomes
can be specified for each goal. The GAS quantifies change over time.
The literature suggests that clinicians need a minimum of 1 years experience
to support people to be able to set realistic, functional GAS goals that are
meaningful and achievable.
Reliability and Validity of the GAS.
The GAS has good inter-rater reliability (.91- .99) and validity (content and
convergent validity). As the GAS measures different constructs to other
outcome measures its construct validity and concurrent validity is low.
Is This Tool Reliable and Valid For The Population With Intellectual
Disability?
As GAS can be used with all disabilities and can be completed by proxy it is
considered to be reliable and valid for use with people who have intellectual
disability. GAS is sensitive to change (Steenbeek 2007).
To enhance reliability and validity the literature suggests using a 5 point GAS
scale, a minimum of three goals per person, for users of the tool to attend
training and to include multiple evaluation periods4.
What does this tool measure?
•
•
a person’s success in achieving their goals
detects a change when working towards a goal.
Potential uses of the tool.
•
to enable the measurement of the person’s performance of real life,
meaningful, individualised and unique goals that are difficult to measure
using standardised measurement instruments
•
allows a comparison of people’s different goals and their success in
achieving them
•
for use in research to identify the interventions which have evidence
supporting their use.
Enhancing Participation in Individual and Community Life Activities Practice Guide
96
REFERENCES.
Cusick, A., Mcintyre, S., Novak, I., Lannin, N., & Lowe ,K. (2006). A comparison of
goal attainment scaling and the Canadian Occupational Performance Measure for
paediatric rehabilitation research. Pediatric Rehabilitation, 9(2), 149-157.
Doig, E., Flemming, J., Kuipers, P., & Cornwell, P. (2010). Clinical Utility of the
Combined use of the Canadian Occupational Performance Measure and Goal
Attainment Scaling. American Journal of Occupational Therapy, 64(6), 904-914.
King , G. A., McDougall, J., Palisano, R.J., Gritzen, J., Tucher, M.A. (1999). Goal
Attainment Scaling: Its use in evaluating pediatric therapy programs. Physical and
Occupational Therapy in Pediatrics, 19(2), 31-52.
Novak, I. (2013). Goal Attainment Scaling (GAS): Rater training. Ageing Disability
and Home Care.
Steenbeek, D., Ketelaar, M., Galama, K., & Gorter, G. W. (2007). Goal Attainment
Scaling in paediatric rehabilitation: A critical review of the literature. Disability
Medicine and Child Neurology, 49(7), 550-556.
Enhancing Participation in Individual and Community Life Activities Practice Guide
97
Appendix 2: Assessment tools
Alberta Infant Motor Scale
The Alberta Infant Motor Scale (AIMS) is a normed, criterion referenced scale
that can be used to assess and monitor the motor skill development of infants
at risk of motor delays who were born prematurely or at term. The AIMS is
designed to measure motor skills from 40-week gestation through to 18
months of age or independent walking.
The AIMS has 58 test items that are arranged in a developmental sequence in
four positions; supine, prone, sitting and standing. With each item the
qualitative aspects of movement, such as the body parts that are bearing
weight, the postural alignment of each body part and the antigravity
movements that items are scored against set criteria outlined in the manual.
The total score is the sum of scores in all of the sub-scores in the four
positions. The total score can be converted to a percentile rank and compared
to age equivalent peers in a normative sample. The test, consisting of the
manual and the score sheets is described in detail in the manual.
Reliability of the AIMS
The AIMS has excellent inter-rater reliability (ICC was greater than .96) and
test retest reliability (ICC= .86 to .99) when used with term infants (Piper,
1992) and preterm infants: Intra-rater reliability (ICC≥ .99) and inter-rater
reliability (.85 to .97) (Pin TW, 2010). The lower values for the inter-rater
reliability reflect that there are fewer items at the ends of the scale.
The AIMS is a reliable measurement tool to evaluate motor function in infants
born at term and in the preterm population. As the ICC values are low at both
ends of the scale clinicians need to be cautious in using the AIMS at the very
young age and once infants are standing and beginning to walk.
Validity of the AIMS
Content validity: The AIMS was constructed following a literature review of
existing instruments and narratives of early motor development and
consultation with clinicians and international experts in infant motor
development.
Construct validity: The scale properties of the AIMS were examined for the
ordering of the items during its development and through a rash analysis of
the AIMS items. The rash analysis showed that the items are arranged in
order of difficulty and identified a ceiling effect. The AIMS is a good
discriminative tool from three to nine months of age, but not after 12 months
as few test items are available at the end of the scale (Liano Pai-Jum M,
2004).
Criterion validity: The test authors examined the concurrent validity of the
AIMS by comparing it to the Bailey Psychomotor Developmental Scale and
the Peabody Developmental Motor Scale. They found the AIMS to have
excellent reliability with these tools.
The predictive validity of the AIMS has been explored by comparing the
sensitivity (ability of the test to identify someone with the condition), specificity
Enhancing Participation in Individual and Community Life Activities Practice Guide
98
(ability of the test to correctly identify individuals without the condition) and
positive and negative predictive values of the AIMS with the Motor
Assessment of Infants (MAI) and the first version of the Peabody
Developmental Gross Motor Scale. This allowed recommended cut off points
for the AIMS to be set to identify infants with “suspicious motor development”.
The 10th percentile (using the percentile ranks on the score sheets) is
recommended at a 4 month corrected age assessment and the 5th percentile
is recommended from an 8 month corrected age (Darrah, 1998).
Is This Tool Reliable and Valid For The Population With Intellectual
Disability?
This tool is valid and reliable for a select group of infants with a motor delay or
atypical motor development who do not have a diagnosis that explains their
motor delay.
What does this tool measure?
Motor skill development of infants at risk of motor delays who were born
prematurely or at term.
Potential uses of the Tool
•
identify infants whose motor performance is delayed or different to the
typically developing infant so they can be provided with targeted early
intervention
•
serial assessment to monitor motor performance over time
•
as an outcome measure to monitor the effects of intervention.
REFERENCES.
Darrah, J., Piper, M., Watt, M-J. (1998). Assessment of gross motor skills of at-risk
infants: Predictive validity of the Alberta Infant Motor Scale. Developmental Medicine
& Child Neurology, 40(7), 485–491.
Liano, P. J., & Campbell, S. K. (2004). Examination of the item structure of the
Albert Infant Motor Scale. Pediatric Physical Therapy 16(1), 31-38.
Pin, T. W., de Valle, K.,, Elridge, B., & Galea, M. P. (2010). Clinematic properties of
the Alberta Infant Motor Scale in infants born preterm. Pediatric Physical Therapy,
22(3), 278-286.
Piper, M. C. & Darrah, J. (1994). Motor Assessment of the Developing Infant.
Philadelphia: Saunders.
Piper, M. C., Pinnell, L. E., Darrah, J., Maguire, T., & Byrne, P. J. (1992).
Construction and validation of the Alberta Infant Motor Scale (AIMS). Canadian
Journal of Public Health, 83(Suppl 2), S46-50.
Spittle, A. J., Doyle, L. W. & Boyd, R. N. (2008). A systematic review of the
clinimetric properties of neuromotor assessments for preterm infants during the first
year of life. Developmental Medicine & Child Neurology, 50(4), 254-266.
Enhancing Participation in Individual and Community Life Activities Practice Guide
99
Berg Balance Scale
The Berg Balance Scale (BBS) evaluates an individual’s functional balance
when performing activities that are required to safely and independently
function in their home and community.
The scale was developed to measure balance in the elderly and with
individuals who have a neurological impairment. The original scale has been
modified to create a Paediatric Scale (PBS). The Paediatric Scale can be
used with school age children who have mild to moderate motor impairment
and to assess the balance abilities of children who have cerebral palsy.
One researcher found that competent typically developing 4 year olds and
most typically developing 7 year olds can achieve a score of 56/56 (Franjoine,
Gunther, & Taylor, 2003).
The scale consist of 14 observational tasks, each item is scored from 0 to 4,
with a possible maximum score of 56. Test items include standing up and
sitting down, standing still, stepping on and off an elevated surface, turning
around, reaching forwards and to the floor. Administration requires little
training, minimal equipment and 15 to 20 minutes to perform. It can be used in
a clinical or community setting.
Reliability and validity of the Berg Balance Scale
The Berg Balance scale has undergone extensive reliability and validity
testing within the geriatric population. Interrater reliability using the BBS is
reported to be extremely high (ICC.98), similarly intrarater reliability is high
(ICC .99).
More reading is recommended for further information on validity
Is This Tool Reliable and Valid For The Population With Intellectual
Disability?
A small number of studies have shown the Berg Balance Scale to be a
reliable tool to evaluate functional balance in adults with intellectual disability.
A 2011 study (Waninge et al, 2011) has modified the Berg Balance scale
(mBBS) for use with individuals with severe intellectual and visual disabilities
and GMFCS level 1 and 11. This scale was shown to have sufficient reliability
except for items 9 and 10. This article supports more research into the
reliability and validity of this tool. For more information see: Feasibility and
reliability of a modified Berg Balance Scale in persons with severe intellectual
and visual disabilities
The PBS has been shown to be a reliable tool for school aged children with
cerebral palsy (GMFCS level 1 to 3) and mild to moderate motor impairment
(Franjoine et al 2003; Kembhavi 2002).
No studies have been found using the Berg Balance Scale with children with
intellectual disability.
What does this tool measure?
Enhancing Participation in Individual and Community Life Activities Practice Guide
100
Functional balance in school aged children with motor impairment, children
with cerebral palsy (GMFCS levels 1 to 3), older adults and adults with
neurological, motor and intellectual disability.
Potential uses of the tool
•
Standardised series of reproducible observations of balance.
REFERENCES.
Franjoine, M. R., Gunther, J. S. & Taylor, M. J. (2003). Pediatric Balance
Scale: A modified version of the Berg Balance Scale for the school-age child
with mild to moderate motor impairment. Pediatric Physical Therapy, 15(2),
114-128.
Kembhavi, J. D., Darrah, J., Magill-Evans,J., & Loomis, J. (2002). Using the
Berg Balance Scale to distinguish balance abilities in children with Cerebral
Palsy. Pediatric Physical Therapy, 14(2), 92-99.
Waninge, A., van Wijck, R., Steenbergen, B., & van der Schans, C. P. (2011).
Feasibility and reliability of a modified Berg Balance Scale in persons with
severe intellectual and visual disabilities. Journal of Intellectual Disability
Research, 55(3), 292-301.
Enhancing Participation in Individual and Community Life Activities Practice Guide
101
Bruininks Oseretesky test of motor proficiency (2nd
edition)
The Bruininks-Oseretsky Test of Motor Proficiency, 2nd Edition (BOT-2) is a
revision of the original Bruininks Oseretsky Test of Motor Proficiency
(BOTMP). It is a norm referenced, standardised tool used to measure an
array of motor skills between the age of 4 years and 21 years and 11 months.
The BOT-2 divides motor function into four domains (composites): Fine
Manual Control, Manual Coordination, Body Coordination and Strength and
Agility. There are 2 subtests in each of the domains/composites. These
scores can be combined to produce a Total Motor Composite.
There is a long and short form of the Assessment. There are four
administration options: the complete form, short form, select composites or
select subtests of the composites.
The test consists of a testing kit, an administration easel, record forms and a
manual. All tasks receive a raw score, which becomes a point score on the
record form, is summed with the other scores and transferred to a standard
scores and percentile ranks. There is an optional computer scoring CD.
Reliability and validity of the BOT-2
•
The standardisation of the BOT2 took place from 2004 to 2005 in America,
using a random sample (1520 participants) stratified across sex,
race/ethnicity, socioeconomic status and disability status covering 12 age
groups from 2 to 21 years.
•
The test authors report on three measures of reliability: internal
consistency, test retest and inter-rater reliability.
•
The internal consistency reliability coefficients are high (≥ .93) for the total
motor composite for all age groups. For the short form they were
acceptable (≥. 80), for all age groups except the 4 to 8 year olds. For the
subtests of individual age groups the internal consistency estimates of
reliability were borderline to high (.6- to .80).
•
Test re-test reliability. There is weak test re-test reliability for some
subtests and motor composites for some age groups. This indicated that
therapists can be more confident in the stability of scores related to agility
and strength.
•
The inter-rater reliability coefficients are high ranging from .92 for the fine
manual control composite to .98 - .99 for manual coordination, body coordination and strength and agility.
•
The authors of the test report on the content and construct validity but
findings are unclear.
•
Intercorrelation coefficients among subtest scores decrease with age and
are small to moderate among composite scores suggesting that the
subsets and composite measure different things, which provides support
for the construct and content validity of the tool.
Enhancing Participation in Individual and Community Life Activities Practice Guide
102
•
Criterion validity studies were carried out by the test authors on the
standardisation sample. They compared scores on the BOT-2 with
participants scores on the Bruininks-Oseretsky Test of Motor Proficiency
(BOTMP), the Peabody Developmental Motor Scales (2nd Edition) and the
Test of Visual Motor Skills-Revised. The test authors report that the BOT-2
composite correlates at an acceptable level with the Peabody motor scales
(r =. 73) and the Test of Visual Motor Skills revised (r =.74).
•
The test developers carried out clinical group studies with individuals with
Developmental Coordination Disorder, mild to moderate intellectual;
disability and Asperger’s Disorder. The numbers in each of the clinical
groups were small and in each of the clinical groups the participants
scores were statistically lower than the non-clinical group.
Is This Tool Reliable For the Population with Intellectual Disability?
•
•
•
•
•
•
One study, a prospective cohort explored the reliability and
responsiveness of the BOT-2 when assessing motor skills of individuals
with intellectual disability.
Study participants, 100 Taiwanese children, and all receiving “conventional
paediatric rehabilitation” at least one day a week. The study participants
were between 4 to 12 years (limited information about spread across age
groups) with a diagnosis of intellectual disability (on a full scale IQ≤ 70; 64
children classified as having a mild ID and 36 with a moderate to severe
ID). Participants, who also had a diagnosis of cerebral palsy, autism, and
neurological disorders, traumatic brain injury, muscular dystrophy,
epilepsy, blindness and deafness were excluded.
The BOT-2 was administered three times, twice, two weeks apart at the
beginning of the study (to assess test-retest reliability) and the third time
after 4 months of “therapeutic intervention”.
Test re-test reliability was considered “excellent” in this study.
(ICC for the total score was .99, and varied between .88 and .99 for the
subtests and composites). No inter-rater reliability was explored in this
study. Internal consistency (a measure of the extent to which the tests
items or scales measure the same thing) was excellent for the total score
(Cronbach’s α =.92) and good for the subtests (Cronbach’s α =.81 to .88)
and the composite scores (Cronbach’s α =.87 to .88). The authors of the
test report internal consistency measures ranging from .78 to .97.
The responsiveness of the BOT 2 to detect change in the study group
(Effect Size and Standard Response Mean) was moderate with the
exception of the balance and body coordination subtests, which was poor.
The responsiveness of individual scores (minimally important differences
and minimum detectable change) to detect change is reported to be
acceptable. A change of between 3.5 to 4 points is required to indicate that
improvement has occurred.
Is this tool valid for the population with Intellectual Disability?
•
The Validity for the BOT-2 with people with intellectual disability has not
been established. There are questions over the validity of the tool in the
Enhancing Participation in Individual and Community Life Activities Practice Guide
103
standardisation sample. Although one of the clinical sample groups
studied by the authors were individuals with mild to moderate intellectual
disability the numbers of participants in this clinical study were small.
What does this tool measure?
•
•
Motor proficiency in four motor domains/composites; Fine Manual Control,
Manual Coordination, Body Coordination and Strength and Agility. The
scores can be combined to yield a total motor composite.
Identifying mild to moderate motor control problems.
Potential uses of the tool
•
•
•
For assessment of motor skill problems in individuals with mild to
moderate motor skill difficulties.
To support an application for a child entering the education system for
extra support in the physical education (P.E) classes. The BOT2 will
compare the child’s motor skill proficiency to the skills of his peers.
For research into the evaluation of motor programs.
REFERENCES.
Bruininks, R. H., & Bruininks, B. D. (2005). Bruininks-Oseretsky Test of Motor
Proficiency: Examiners manual (2nd Ed.). Minneapolis, USA: Pearson.
Deitz, J. C., Kartin, D. & Kopp, K. (2007). Review of the Bruininks-Oseretsky
Test of Motor Proficiency, Second Edition (BOT-2). Physical & Occupational
Therapy in Pediatrics, 27(4), 87-102.
Wuang, Y. P. & Su, C. Y. (2009). Reliability and responsiveness of the
Bruininks-Oseretsky Test of Motor Proficiency-Second Edition in children with
intellectual disability. Research in Developmental Disabilities, 30(5), 847-855.
Enhancing Participation in Individual and Community Life Activities Practice Guide
104
Functional Independence Measure
The Functional Independence Measure (FIM) is an outcome measure of the
severity of disability. It was designed to track changes in a person’s function
during inpatient rehabilitation.
The FIM rates 18 activities of daily living - self care (eating, grooming, bathing,
upper body dressing, lower body dressing, toileting), sphincter control
(bladder management, bowel management), transfers and locomotion
(bed/chair/ wheelchair transfers, toilet transfer, walk/wheelchair), cognition
(comprehension, expression, memory). The items are scored on a 7-point
scale ranging from 1 (fully dependent) to 7 (independent with no aids). The
maximum total score is 126, indicating functional independence and the
lowest score is 18 suggesting complete functional dependence. The items are
divided into two groups: 13 motor items and 5 cognitive items.
In an inpatient setting the FIM is scored by direct observation of the
individual’s performance of the daily living activities, usually over a 72-hour
period. In an outpatient setting self-report, reports from carers (in person or
over the phone) or observation can be used.
The FIM is used globally, including in Australia, in rehabilitation settings
following a stroke, traumatic brain injury, spinal cord injury and with people
who have multiple sclerosis.
All clinicians using the tool are required to be an accredited user. The
Australian Rehabilitation Outcomes Center (AROC) is the national certification
and training centre for the FIM.
Information about the FIM and the Accreditation process can be found at:
http://ahsri.uow.edu.au/aroc/whatisfim/index.htm.
Reliability and Validity of the FIM.
Reliability and validity of the FIM has been established. Ottenbacher K et al
(1996) reported on the reliability of the FIM: the inter-rater reliability is ICC .95
and test retest reliability is ICC .95.
Construct and concurrent validity of the FIM has been established. FIM scores
discriminate between disabilities and levels of impairment (Heinermann et al
1994): correlate with time taken for care (Disler et al 1993) and with other
functional measures such as the Barthel index.
Is This Tool Reliable and Valid For The Population With Intellectual
Disability?
A search of the literature did not return any studies on the validity or reliability
of the FIM when used with adults with intellectual disability.
An Australian study by the Spastic Center of NSW, now called the Cerebral
Palsy Alliance discusses the use of the FIM during an annual review to
Enhancing Participation in Individual and Community Life Activities Practice Guide
105
determine the attendant care services that adults with cerebral palsy require
to function optimally in the community. This study did not explore the reliability
or validity of the tool for use with this client group (Balandin et al., 1997).
What does this tool measure?
•
the level of support a person requires to perform activities of daily living.
Potential uses of the tool.
•
to identify the changes in a person’s function and to monitor their support
needs over time.
REFERENCES.
Balandin, S., & Alexander, B. (1997). Using the Functional Independence Measure
to assess adults with Cerebral Palsy: An exploratory report. Journal of Applied
Research in Intellectual Disabilities 10(4), 323-332.
Disler, P. B., Roy. C. W., & Smith, B. P. (1993). Predicting hours of care needed.
Archives of Physical Medicine and Rehabilitation, 74(2), 139-143.
Heinemann, A. W., Linacre, J. M., Wright, B. D., & Hamilton, B. B., & Granger, C.
(1994). Prediction of rehabilitation outcomes with disability measures. Archives of
Physical Medicine and Rehabilitation, 75(2), 133-143.
Ottenbacher, K. J., Hsu, Y., Granger, C. V., & Fielder, R. C. (1996). The reliability of
the Functional Independence Measure: A quantitative review. Archives of Physical
Medicine and Rehabilitation, 77(12), 1226-1232.
Mackintosh, S. (2009). Functional Independence Measure (Appraisal. Clinimetrics).
The Australian Journal of Physiotherapy, 55, 65. (Tool available from
http://www.rehabmeasures.org/Lists/RehabMeasures/DispForm.aspx?ID=889)
Enhancing Participation in Individual and Community Life Activities Practice Guide
106
Functional Mobility Scale
The Functional Mobility Scale (FMS) is an outcome measure designed to
evaluate mobility in children with cerebral palsy. Mobility is rated for three
distances (5, 50, 500m). These distances correspond to the different
environment settings of home, school and the community (Harvey et al.,
2007).
For each distance a rating of 1-6 is given depending on the assistance
required; ranging from a score of 1 when a wheelchair is used to a score of 6
when the distance is covered independently without devices. A rating of “C” is
given if the child crawls and of “N” if the child does not cover the distance.
The FMS can be administered by direct observation or phone interview.
Reliability and Validity of the FMS
The inter-rater reliability for the FMS is excellent, with the Kappa coefficients
of .87 for 5 m, .92 for 50m and .86 for 500m (Harvey 2010).
The construct validity of the FMS has been explored by comparing parent
FMS scores taken on the telephone to scores from observing children as they
moved. There was good agreement between the ratings, with Kappa values
and percentage agreement better over the longer distances. (5m k=.71, 45%:
50m K=.76 95%. 500m k=.74 95%).
Is This Tool Reliable and Valid For The Population With Intellectual
Disability?
The authors of the FMS consider that the tool is reliable and valid for use with
children with intellectual disability (personal correspondence). There are no
reports exploring this in the literature.
What does this tool measure?
The FMS evaluates a child’s mobility over three distances that correspond to
home, school and community. The FMS takes into account the assistive
devices that are used.
The FMS has been used to detect change in mobility following multilevel
surgery; the FMS detected both deterioration and improvement in mobility
(Harvey, 2007).
Enhancing Participation in Individual and Community Life Activities Practice Guide
107
Potential uses of the tool
•
•
•
•
•
quick to administer, requiring no formal training other that reading the
brochure
can be used with other outcome measures to comprehensively assess
function in individuals with cerebral palsy
defines the assistive devices that a child may use in different settings;
this is a unique feature of the tool
can track the progression of a child with different devices
can be use to detect changes in mobility following multilevel surgery.
REFERENCES.
Graham, H. K., Harvey, A. (2007). Assessment of mobility after multilevel surgery for
Cerebral Palsy. The Journal of Bone And Joint Surgery, 89-B(8), 993-994.
Harvey, A., Baker, R., Morris, M. E., Hough, J., Hughes, M., & Graham, H. K. (2010).
Does parent report measure performance? A study of the construct validity of the
Functional Mobility Scale. Developmental Medicine and Child Neurology, 52(2), 181185.
Harvey, A., Baker, R., Morris, M. E.,, Graham, H. K., Wolfe, R., Baker, R. (2010).
Reliability of the Functional Mobility Scale for children with Cerebral Palsy. Physical
and Occupational Therapy in Pediatrics, 30, 139-149.
Harvey, A., Graham, H. K., Morris, M. E., Baker, R., Wolfe, R. (2007). The Functional
Mobility Scale: Ability to detect change following single event multilevel surgery.
Developmental Medicine and Child Neurology, 49(8), 603-607.
Harvey, A. (2008). The functional mobility scale for children with cerebral palsy:
Reliability and validity. Unpublished doctoral dissertation, La Trobe University,
Australia. Retrieved from
: https://minervaaccess.unimelb.edu.au/bitstream/handle/11343/39403/67753_00004270_01_harvey
thesisfinal.pdf?sequence=1
Harvey, A., Robin, J., Morris, M. E., Graham, H. K, & Baker, R. (2008). A systematic
review of measures of activity limitation for children with cerebral palsy.
Developmental Medicine and Child Neurology, 50(3), 190-198.
Enhancing Participation in Individual and Community Life Activities Practice Guide
108
Gross Motor Function Classification System (GMFCS)
The Gross Motor Function Classification System (GMFCS) is a 5 level
classification system that describes the gross motor function of children and
youth with cerebral palsy on the basis of their self-initiated movement with
particular emphasis on sitting, walking, and wheeled mobility. Distinctions
between levels are based on functional abilities, the need for assistive
technology, including hand-held mobility devices (walkers, crutches, or canes)
or wheeled mobility, and to a much lesser extent, quality of movement.
The Gross Motor Function Classification System - Expanded and Revised
(GMFCS-ER) was developed in 2007 following a revision of the original
GMFCS. The original GMFCS within each level has several age bands;
before age 2, 2 to 4 years, 4 to 6 years, 6 to 12 years. A revision of the 6 to 12
year age band and the development of the 12 to 18 year old age bands lead
to the development of the GMFCS-ER. The 12 to 18 years age band
emphasises the concepts of capacity and performance and the impact of the
environment and personal factors on movement, these concepts are inherent
in the International Classification of Function (ICF) (CanChild).
Classification of motor function by family members using the GMFCS Family
and Self Report Questionnaire is available for three age groups of children: 2
to 4 years, 4 to 6 years, and 6 to 12 years. The GMFCS family report
questionnaire has been shown to correlate well (K= .75) with therapists rating
in the younger age groups (2 to 4 years and 4 to 6 years). The reliability of
family report using the questionnaire for children aged 6 to 12 years is
excellent (ICC=.94). (Morris, Galuppi & Rosenbaum, 2004).
No training is required to use the GMFCS. For each age band the level of the
individuals motor function is determined by reading the criteria outlined in the
scale. Physical therapists, occupational therapists, physicians, and other
health service providers familiar with movement abilities of children with
cerebral palsy can use the scale.
Is this tool reliable for the population with Intellectual Disability?
The GMFCS was developed to classify the motor function of individuals with
cerebral palsy. It can be used with individuals with intellectual disability if they
have impairments in posture and movement resulting from cerebral palsy.
Inter-rater reliability is fair to good for children less than 2 years (Kappa.55)
and excellent for children between 2 to 12 years of age (Kappa =7.5). One
study (a retrospective file audit) found that at 12 years of age the inter-rater
reliability of the GMFCS is excellent .978) (Palisano et al., 2006).
The reliability of the 12 to 18 year old age band has not been established.
Test Retest reliability. The extent to which individuals remain in the same
classification over time are a reflection of the stability of the tool and therefore
of the test retest reliability. Wood and Rosenbaum (2000) examined the
stability of the GMFCS using a retrospective chart review and found that 38%
Enhancing Participation in Individual and Community Life Activities Practice Guide
109
of children were classified at the same level at 1 to 2 years as at 6 to 12
years. If the children were reclassified their level was most likely to change by
one level. The test re-test reliability in this study was .79 (Wood &
Rosenbaum, 2000).
Palisano et al.,2006) conducted a prospective study with children up to 12
years of age, to examine the stability of the GMFCS levels over time. They
found that 73% remain in their initial classification level over a period of 33.5
months. Children initially classified at levels 1 and V were less likely to be
reclassified. There was a tendency for children initially classified when they
were less than 6 to be reclassified to a lower level. There was a slightly lower
stability in the GMFCS for children initially classified at levels II to IV.
Gorter et al (2009) explored the stability of the GMFCS in infants less than 2
with a follow up at age 2 to 4 years. They found that, in this younger age
group 42% of infants changed one or more levels which is a much higher
percentage than in the 27% who changed in the Palisano study (2006). The
authors of the study recommend classifying children early, but a more solid
classification should be made after 2 years of age (Gorter et al., 2009).
A study by McCormick et al showed that the gross motor classification of
individuals at 12 years of age remains stable into adulthood (McCormick et
al., 2007).
Is this tool valid for the population with Intellectual Disability?
The GMFCS is a valid tool to use with individuals with intellectual disability, if
they have impairments in posture and movement resulting from cerebral
palsy.
Content validity: This was established during the development of the tool
using a nominal group process and Delphi method.
Construct validity: The high correlation between the GMFM and the GMFCS (.91) supports the construct validity of the GMFCS (R. Palisano et al., 1997;
Rosenbaum et al., 2002).
Criterion Validity (concurrent and predictive validity: As there is no other
reliable and valid classification system for individuals with cerebral palsy the
concurrent validity of the GMFCS was established during the nominal group
process and Delphi survey (Palisano et al., 2008; Rosenbaum et al., 2008).
Predictive validity: The stability of the gross motor classification system
supports the validity of the GMFCS for estimating the prognosis of gross
motor function. The positive predictive value of the GMFCS at age 1 to 2 to
predict walking at age 6 to 12 years is .74, at age 4 to 6 years is .87 and at
age 4 to 6 years is .91. (Wood et al, 2002).
Studies have shown that the GMFCS levels at age 12 are highly predictive of
adult motor function. The positive predictive value of the GMFCS at age 12 to
predict walking without aids as an adult is .88. If an individual is a wheelchair
Enhancing Participation in Individual and Community Life Activities Practice Guide
110
user at age 12 the positive predictive value that the individual will be in a
wheelchair as an adult is .96 (McCormick et al., 2007).
Potential uses of the GMFCS
The GMFCS is a classification system to describe the motor function of
children and youth with cerebral palsy.
The stability of an individual’s classification over time supports the prediction
of their future motor function.
The GMFCS can be used:
1.
In clinical practice:
•
Knowledge of an individual’s GMFCS level can direct individuals,
families, careers and clinicians to set goals that are appropriate to their
age and level of motor function.
•
The GMFCS level can provide a guide to help service providers to
monitor hip problems in children with CP. Hip surveillance data indicate
that the rate of hip subluxation increases linearly from level 1 to level 5.
•
Provides a common language for communication between caregivers,
clinicians and researchers.
2.
In research:
•
Sample selection. By identifying a more homogeneous subset of
children with cerebral palsy with similar gross motor abilities.
•
Sample description. By facilitating communication between researcher
and consumers.
•
Stratification. To assist in ensuring that groups in experimental
research studies are comparable.
3.
In teaching:
To introduce students and service providers in all disciplines to the
complexities of cerebral palsy relating to the extremely wide variation in
gross motor abilities of children with cerebral palsy.
4. In administration:
The GMFCS is useful in terms of caseload management and resource
allocation in health, recreation, and education settings for children with
cerebral palsy.
REFERENCES.
Gorter, J. W., Ketelaar, M., Rosenbaum, P., Helders, P. J. & Palisano, R. (2009).
Use of the GMFCS in infants with CP: The need for reclassification at age 2 years or
older. Developmental Medicine & Child Neurology, 51(1), 46-52.
Jewell, A. T., Stokes, A. I., & Bartlett, D. J. (2011). Correspondence of classifications
between parents of children with cerebral palsy aged 2 to 6 years and therapists
using the Gross Motor Function Classification System. Developmental Medicine &
Child Neurology, 53(4), 334-337.
Enhancing Participation in Individual and Community Life Activities Practice Guide
111
McCormick, A., Brien, M., Plourde, J., Wood, E., Rosenbaum, P. & McLean, J.
(2007). Stability of the Gross Motor Function Classification System in adults with
cerebral palsy. Developmental Medicine & Child Neurology, 49(4), 265-269.
Morris, C., Galuppi, B. E. & Rosenbaum, P. L. (2004). Reliability of family report for
the Gross Motor Function Classification System. Developmental Medicine & Child
Neurology, 46(7), 455-460.
Palisano, R., Rosenbaum, P., Walter, S., Russll, D., Wood, E. & Galuppi, B. (1997).
Development and reliability of a system to classify gross motor function in children
with cerebral palsy. Developmental Medicine & Child Neurology, 39(4), 214-223.
Palisano, R. J., Cameron, D., Rosenbaum P. L., Walter, S. D. & Russell, D. (2006).
Stability of the Gross Motor Function Classification System. Developmental Medicine
& Child Neurology, 48(6), 424-428.
Palisano, R. J., Rosenbaum, P., Bartlett, D. & Livingston, M. H. (2008). Content
validity of the expanded and revised Gross Motor Function Classification System.
Developmental Medicine & Child Neurology, 50(10), 744-750.
Rosenbaum, P. L., Palisano, R , Barlett, D. J., Galuppi, B. E., & Russell, D. J. (2008).
Development of the Gross Motor Function Classification System for cerebral palsy.
Developmental Medicine and Child Neurology, 50(4), 249-253.
Rosenbaum, P. L., Walter, S. D., Hanna, S. E., Palisano, R. J., Russell, D. J., Raina,
P., Wood, E., Bartlett, D. J. & Galuppi, B. E. (2002). Prognosis for Gross Motor
Function in Cerebral Palsy. JAMA: The Journal of the American Medical Association,
288(11), 1357-1363.
Wood, E. & Rosenbaum, P. (2000). The Gross Motor Function Classification System
for Cerebral palsy: A study of reliability and stability over time. Developmental
Medicine & Child Neurology, 42(5), 292-296.
Enhancing Participation in Individual and Community Life Activities Practice Guide
112
Gross Motor Function Measure (GMFM)
The Gross Motor Function Measure (GMFM) is designed to evaluate change
in gross motor function in children with cerebral palsy. It is a standardised
criterion referenced measure. There are two versions of the GMFM: the
original 88-item measure (GMFM-88) and the more recent 66-item GMFM
(GMFM-66). Items on the GMFM-88 evaluate motor skills in lying and rolling
up to walking, running and jumping skills. The GMFM-66 is comprised of a
subset of the 88 items identified (through Rasch analysis) as contributing to
the measure of gross motor function in children with cerebral palsy. The
GMFM-66 provides detailed information on the level of difficulty of each item
thereby providing information to assist with realistic goal setting.
Research into the clinical utility of the GMFM is continuing. Two shortened
versions of the GMFM-66 have been developed. The first, GMFM-66-IS (Item
Set) contains items subsets in each of the five levels of the GMFCS. This will
provide a set of items tailored to a person’s ability to enable accurate scoring
with fewer items (Russell, et al., 2010). The second abbreviated version is
the GMFM-66-B&C (Basal & Ceiling), which uses one of 4 sets of test items
based on an individual child’s ability. Both these versions have been devised
using retrospective data; prospective studies have yet to be completed. At
present it is recommended that the full version of the GMFM-66 be used
(Brunton & Bartlett, 2011).
The CanChild web site has a detailed discussion on the GMFM and
information on where to purchase the manual for GMFM-88 and GMFM-66.
The score sheets can be downloaded from the CanChild web site (CanChild).
The GMFM-66 is scored using a software program, the GMFM Ability
Estimator; this is supplied with the GMFM-88 and the GMFM-66 manual.
The creation of the motor growth curves
GMFM-66 scores of a sample of over 650 Ontario children with cerebral palsy
with varying GMFCS levels have been used to create five Motor Growth
Curves. These curves describe the patterns of motor development of this
sample of children with cerebral palsy (aged 2 to 12 years) and are similar to
the growth charts that are used to follow the height and weight of children as
they grow.
The Motor Growth Curves present a plot of GMFM-66 scores (on the vertical
axis) by age (across the horizontal axis) for each of the five GMFCS levels.
Reference curves have been developed by age and for each GMFCS level
plotted at the 3rd, 5th, 10th, 25th, 50th, 75th, 90th and 97th percentiles.
Assessment using the GMFM-66, allows a child's relative ranking compared
to children with cerebral palsy to be determined. With repeated scoring over
time, it is possible to determine whether a child is functioning as well as
expected, better than expected or more poorly then expected (Rosenbaum et
al., 2002).
A follow up study of the original sample of 650 children in Ontario, 5 years
later with participants ranging in age from 16 months to 21 years uses motor
Enhancing Participation in Individual and Community Life Activities Practice Guide
113
growth curves to outline the changes in adolescent gross motor function
across all GMFCS levels of cerebral palsy. The study illustrates when the
peak in motor skills occurs and when a clinically meaningful loss of skills is
likely to happen. The findings indicate that children and youth in levels III, IV
and V are at risk of losing motor function with the greatest decline apparent at
level V (Hanna, et al., 2009).
Motor growth curves for children aged one month to six years with Down
syndrome have been developed (Robert J. Palisano et al., 2001). The GMFM88 scores of 121 children who were classified as having mild, moderate or
sever motor impairment (using a Motor impairment rating scale) and who
were clients or had been clients of a Early Intervention program in Ontario
were used to create the curves. The author of the curves supports more study
into this tool (Palisano et al., 2001).
Reliability of the GMFM
The test–retest reliability of both the GMFM-88 and the GMFM-66 is excellent.
(ICC=.994 for the GMFM-88 and ICC=.9932 for the GMFM-66). Both
abbreviated versions of the GMFM-66; the GMFM 66-IS and the GMFM66B&C have been shown to be highly reliable with ICC of greater than .98 at
the 95% confidence interval.
Validity of the GMFM
The GMFM has been validated for children and youth with cerebral palsy, the
original sample included children 5 months to 16 years of age.
Responsiveness is an element of validity that is important in an evaluative tool
such as the GMFM. The responsiveness of an assessment tool is its
sensitivity to detect clinically meaningful change over time. The GMFM-88 and
the GMFM-66 total scores have been found to be equally responsive; they
differ in sensitivity across the scale. The GMFM-66 was found to have better
specificity for therapist’s judgment of meaningful motor improvements and to
be more sensitive at the extreme ends of the scale for those children scoring
very low and those scoring very high. The GMFM-66 is less sensitive than the
GMFM-88 for those children functioning in the middle of the scale. For the
children and youth whose motor skills are on the higher end of the scale there
is a ceiling effect with the GMFM. Other tools, such as the HiMat and the
Challenge Model are being developed to assess the children and youth with
cerebral palsy whose motor skills are on the higher end.
The Gross Motor Function Measure (GMFM-66 and GMFM-88) User’s
Manual has an appendix of average change scores for children of varying
ages and GMFCS levels over six and twelve month intervals receiving
intervention at children’s rehabilitation centres in Ontario, Canada (Russell et
al., 2002). In the original validation work with the GMFM-88, parents and
therapists identified a gain of about 5 and 7 percentage points respectively, as
being a “medium” positive change. Both abbreviated versions of the GMFM;
the GMFM 66-IS and the GMFM- 66-B&C demonstrated high levels of validity
Enhancing Participation in Individual and Community Life Activities Practice Guide
114
with an ICC of .99 (95% confidence intervals) reflecting good association with
the GMFM-66.
Is this tool reliable and valid to use with individuals with Intellectual
Disability?
The GMFM-88 evaluates motor skills up to the level of what is expected in a
typically developing 5 year old. It is an appropriate tool to use to evaluate the
motor skills of a child or young person with intellectual disability (who doesn’t
have motor disability) whose motor skills are below what is expected of a five
year old. The reliability and validity with this group has not been established.
The GMFM-88 but not the GMFM-66 has been shown to be a valid and
reliable tool (Inter-rater reliability ICC= .96 and test re-test reliability ICC=.96)
to measure change in motor skills in children with Down syndrome (Russell et
al.,1998).
Potential uses of the GMFM
•
•
•
•
•
•
•
The GMFM-88 and the GMFM-66 have been shown to be reliable and
valid tools to use with individuals with cerebral palsy to determine the
level of their motor skills compared to other individuals with cerebral
palsy.
The GMFM-66 is seen as the more valid measure. It can only be used
for individuals with cerebral palsy.
The GMFM-88 should be used when evaluating children with
ambulatory aids and/or orthoses. The GMFM-66 has been developed
using data from children who did not use aids and orthoses.
The GMFM, (both versions) can be used to evaluate a change in motor
skills over time.
The GMFM-88 has been shown to be a valid and reliable tool to
measure change in motor skills in individuals with Down syndrome.
The GMFM-88 can be used to assess the motor skills of individuals
with intellectual disability (if their movement is below what is expected
of a typically developing 5 year old) but it has not been validated with
this population.
The GMFM can be used to evaluate the outcome of a program or a
medical intervention and to guide and evaluate goals set with
individuals.
REFERENCES.
Brunton, L. K. & Bartlett, D. J. (2011). Validity and reliability of two abbreviated
versions of the Gross Motor Function Measure. Physical Therapy, 91(4), 577-588.
Hanna, S. E, Bartlett, D. J, Rivard, L. M & Russell, D. J. (2008). Reference curves for
the Gross Motor Function Measure: Percentiles for clinical description and tracking
Enhancing Participation in Individual and Community Life Activities Practice Guide
115
over time among children with Cerebral Palsy. Physical Therapy, 88(5), 596-607.
Hanna, S. E., Rosenbaum, P. L., Bartlett, D. J., Palisano, R. J., Walter, S. D., Avery,
L. & Russell, D. J. (2009). Stability and decline in gross motor function among
children and youth with cerebral palsy aged 2 to 21 years. Developmental Medicine
& Child Neurology, 51(4), 295-302.
Palisano, R. J., Walters. S. D., Russell, D. J., Rosenbaum, P. L., Gemus, M.,
Galuppi, B. E. & Cunningham, L. (2001). Gross motor function of children with Down
syndrome: Creation of motor growth curves. Archives of Physical Medicine and
Rehabilitation, 82(4), 494-500.
Rosenbaum, P. L., Walters, S. D., Hanna, S. E., Palisano, R. J., Russell, D. J.,
Raina, P., Wood, E., Bartlett, D. J. & Galuppi, B. E. (2002). Prognosis for gross
motor function in Cerebral Palsy. JAMA: The Journal of the American Medical
Association, 288(11), 1357-1363.
Russell, D., Palisano, R., Walter, S., Rosenbaum, P., Gemus, M., Gowland, C.,
Galuppi, B. & Lane, M. (1998). Evaluating motor function in children with Down
syndrome: Validity of the GMFM. Developmental Medicine & Child Neurology,
40(10), 693-701.
Russell, D. J., Rosenbaum, P. L., Avery, L., & Lane, M. (2002). Gross Motor
Function Measure (GMFM -66 and GMFM-88): Users manual. London, United
Kingdom: MacKeith Press.
Russell, D. J., Avery, L. M., Walter, S. D., Hanna, S. E., Bartlett, D. J., Rosenbaum,
P. L., Palisano, R. J. & Gorter, J. W. (2010). Development and validation of item sets
to improve efficiency of administration of the 66-item Gross Motor Function Measure
in children with Cerebral Palsy. Developmental Medicine & Child Neurology, 52(2),
e48-e54.
Wang, H. Y., & Yang, Y. H. (2006). Evaluating the responsiveness of 2 versions of
the Gross Motor Function Measure for children With Cerebral Palsy. Archives of
Physical Medicine and Rehabilitation, 87(1), 51-56.
Enhancing Participation in Individual and Community Life Activities Practice Guide
116
High-Level Mobility Assessment Tool (HiMAT) & Revised
High Level Mobility Assessment Tool (Revised HiMAT)
The High-Level Mobility Assessment Tool (HiMAT) was originally developed
to quantify the physical ability of young people with traumatic brain injury
(TBI). It was developed as a unidimensional measure of motor performance
with only the physical component of high-level mobility being quantified. The
HiMAT is suitable for any person with a Traumatic Brain Injury (TBI) who has
goals which require a level of mobility beyond independent level walking.
Though it has been used clinically with people with a variety of neurological
conditions, it has not been validated for use in populations other than TBI.
The HiMAT consists of 13 items that assess high-level walking tasks, the
ability to negotiate stairs, and the ability to run, skip, hop, and bound.
Performance is measured with a stop watch or tape measure. People with
disability are asked to perform each item at their fastest safe speed.
Measures obtained on each item are scored and summed for a total HiMAT
score. Higher scores indicate better mobility performance.
Depending on the number of items performed, testing takes 15 – 30 minutes.
The minimum mobility requirement is independent walking over 20 metres
without gait aids (orthoses are permitted).
The tool has been specifically designed to be quick and easy to use without
any formal training requirement.
Testing can take place in any setting that has a 20m walkway and a 14 step
staircase. Items may be administered in any order. A practice trial is
recommended of each item.
The Revised HiMAT has 8 items and has been validated to use in settings
where there is no access to stairs. It assesses high-level walking tasks, the
ability to negotiate stairs, and the ability to run, skip, hop, and bound.
A specific age range for test use has not been designated. The 103
participants in the initial study had a median age of 27 years and were
representative of the TBI population. The normative data was collected on
103 people (age 18 – 25 years).
Forms and instructions can be downloaded from The Centre for Outcome
Measurement in Brain Injury.
Reliability and validity of the HIMAT
Test authors report:
Test-retest reliability:
Excellent (ICC = 0.99)
Inter rater Reliability:
Excellent (ICC = 0.99)
Internal Consistency:
Excellent (Cronbach alpha = 0.97)
Concurrent Validity:
Adequate HiMAT and motor FIM ( r= 0.53,p<.001)
Excellent HiMAT and gross function Rivermead Motor Assessment (r= .87,
p<.001)
Enhancing Participation in Individual and Community Life Activities Practice Guide
117
Content Validity. The content of the HiMAT was initially generated from a
review of existing adult and paediatric neurological mobility scales and by
surveying expert opinion (Williams et al., 2005a). Rasch analysis was then
used to establish content validity and unidimensionality of the items that were
generated (William et al., 2005b).
The reliability and validity of the HiMAT and Revised HiMAT has been
established.
Is this tool reliable and valid for the population with intellectual
disability?
The validity and reliability for the HiMAT and Revised HiMAT for the
population with intellectual disability has not been established.
A prospective observational pilot study that tested the association between
the scores determined on the HiMAT and Revised HiMAT against the scores
on the gross motor subtests of the Bruininks Oseretesky Test of Motor
Proficiency BOT2) in a sample of 13 children (one female- 8 years 8 months;
12 males with average age of 11 years 6 months) who were classified with
mild to moderate intellectual impairment, provided preliminary validation
through very high, high and moderate associations between the tests.
However, further research with enhanced cohort numbers for each age set
and normative data would be required to establish validity.
The authors state that Rasch analysis was used in the development to ensure
cognitive deficits would have a minimal impact on performance.
What does this tool measure?
High level mobility skills: walking (forward, backward, on toes, over obstacle),
running, skipping, hopping, and bounding, and stair climbing (ascending and
descending).
Potential uses of the tool:
Outcome measurement tool (pre and post intervention) for people with
disability who are able to walk independently.
REFERENCES.
Gunther, D, Low Choy, N, Milne, N, Keogh, H, Richmond, J & Steele, M Preliminary
validation of the HiMAT as a measure of motor function in children with mild to
moderated intellectual impairment when compared to the BOT2: A pilot validation
study. (Abstract No 239). Presented at Physiotherapy Conference 2011, Brisbane
Convention Centre, 27-30th, October 2011. Retrieved from
http://www.journalofphysiotherapy.com/pb/assets/raw/Health%20Advance/journals/jp
hys/2011_APA_ConferenceAbstracts.pdf
Tyson, S. & Connell, L. (2009). The psychometric properties and clinical utility of
measures of walking and mobility in neurological conditions: A systematic review.
Enhancing Participation in Individual and Community Life Activities Practice Guide
118
Clinical Rehabilitation, 23(11), 1018-1033.
Williams, G., Pallant, J., & Greenwood, K. (2010). Further development of the Highlevel Mobility Assessment Tool (HiMAT). Brain Injury, 24(7-8), 1027-1031.
Williams, G., Robertson, V., Greenwood, K., Goldie, P. & Morris, M. E. (2005). The
high-level mobility assessment tool (HiMAT) for traumatic brain injury. Part 1: Item
generation. Brain Injury, 19(11), 925-932.
Williams, G. P., Rosie, J., Denisenko, S., & Taylor, D. (2009). Normative values for
the high-level mobility assessment tool (HiMAT). International Journal of Therapy
and Rehabilitation, 16(7), 370-373.
Williams, G. P., & Morris, M. E. (2009). High-level mobility outcomes following
acquired brain injury: A preliminary evaluation. Brain Injury, 23(4), 307-312.
Williams, G. P., Robertson, V., Greenwood, K., Goldie, P. A. & Morris, M. (2005).
The high-level mobility assessment tool (HiMAT) for traumatic brain injury. Part 2:
Content validity and discriminability. Brain Injury, 19(10), 833-843.
Enhancing Participation in Individual and Community Life Activities Practice Guide
119
Movement Assessment Battery for Children – Second
Edition
The Movement Assessment Battery for Children–Second Edition (MABC-2) is
a norm-referenced assessment tool that yields quantitative and qualitative
data about a child’s performance of age-appropriate tasks in children aged
between 3-16 years. There are three subsections: Manual Dexterity, Aiming
and Catching and Balance. It was originally designed to be a screening tool to
identify children at risk of mild to moderate motor impairment. This tool is
widely used in the assessment of children with Developmental Coordination
Disorder (DCD).
The MABC-2 consists of a standardised performance test and a checklist.
The performance test can be administered by a range of professionals,
including therapists. Training to administer this test is not required. The test is
divided into 4 age bands, each band containing 8 age-appropriate physical
test items. Quantitative performance (e.g. time to complete the task) is scored
from 0 (best) to 5 (worst) and qualitative aspects of performance (e.g. body
posture) are recorded using standard cues. Item scores are summated to
produce subsection scores, which can be compared to normative tables to
determine whether performance is typical, suspect, or impaired. A sum of all
subsection scores can be used to create a total impairment score, to
determine overall performance based on the normative scales. The checklist
can be administered by therapists, teachers or parents/carers. The checklist
gathers information about how the child manages everyday tasks in the home
and school environments.
The MABC-2 consists of a manual, a test record form, checklist, and various
physical items for testing of tasks. The test is completed in two parts: a set of
physical tasks that the child attempts, and a checklist that is completed by
someone who is familiar with the child’s typical motor ability. The test takes
approximately 30 minutes to complete. The MABC-2 also comes with a
manual Ecological Approach to Intervention for Children with Motor
Difficulties, which can assist with planning interventions.
Reliability and validity of the MABC-2
Standardisation of the MABC-2 was conducted on a sample of 1172 children
in the UK. The children were selected using a stratified sampling strategy
according to demographic data obtained from the 2001 UK Census.
Limited information about reliability and validity of the MABC-2 is reported by
the test authors in the manual. The test authors assert that the reliability and
validity of the MABC (first edition) is generalisable to the MABC-2. However,
the two tests contain different items, making the MABC-2 a different
instrument, so therefore reliability and validity of the MABC-2 itself needs to
be established.
Internal consistency A study on the reliability of the MABC-2 in 3 year old
children reported that acceptable to good internal consistency for this age
group (Cronbach’s alpha 0.70- 0.76). Internal consistency for the use of the
MABC-2 in other age groups (i.e. 4-16 years) has not been established.
Enhancing Participation in Individual and Community Life Activities Practice Guide
120
Test-retest reliability was found to be reasonable in two studies conducted by
the test authors. The study which investigated the reliability of the MABC-2 in
3 year old children only, reported excellent test-retest reliability (ICC=0.94) if
the same assessor was used on both occasions.
Several studies on inter-rater and intra-rater reliability have been reported in
the manual by the test authors; however these studies are questionable in
terms of their overall quality and rigour.
Content validity was determined through the input of an expert panel and
appears reasonable. The test authors reported that the expert panel
unanimously agreed that the MABC-2 items were representative for the motor
domains it was intended to evaluate.
Construct validity. There is a lack of evidence to indicate that the MABC-2
demonstrates construct validity, that is, that the performance test items
actually measure the motor skill constructs they are claiming to measure.
Concurrent validity. The MABC-2 has not been compared to a well
established, contemporary measure, so concurrent validity cannot be
determined.
Discriminant validity. The test authors claim that the MABC-2 has
discriminative validity; however this is not well supported by the evidence.
A study by the test authors in 2010 on the original normative sample found
modest to moderate correlations between the 3 subsections of the test
(manual dexterity, aiming and catching, balance), providing some evidence for
discriminant validity.
Structural validity. The 2010 study by the test authors also found that that
structural validity of the MABC-2 was strongly supported in the 11-16 age
group. Structural validity of the tests for the 3-10 year old group is not clarified
in this study.
Responsiveness to change (evaluative ability). There is some evidence
(Smits-Engelsman et al., 2011) that the MABC-2 demonstrates sensitivity to
individual change in healthy 3 year old children.
Evaluative ability (ability to detect clinically important change) has not been
established for this test.
Is this Tool Reliable for the Population with Intellectual Disability?
Reliability of this tool in children with intellectual disability has not been
established.
Is this tool valid for the population with Intellectual Disability?
Validity of this tool in children with intellectual disability has not been
established.
What does this tool measure?
•
•
manual dexterity, aiming and catching (ball skills) and balance
performance in these three areas of motor skills
Enhancing Participation in Individual and Community Life Activities Practice Guide
121
suitable for children aged 3-16 years with mild to moderate motor
impairments.
•
Potential uses of the tool
•
•
•
•
identify mild to moderate motor impairment in children
not appropriate to use as an evaluative measure (to measure the
effectiveness of treatment)
user friendly screening tool typically used to identify children with DCD,
as it is quick and easy to administer
the checklist gathers information about how the child manages
everyday tasks in the home and school environments.
REFERENCES.
Brown, T. & Lalor, A. (2009). The Movement Assessment Battery for ChildrenSecond Edition (MABC-2): A Review and Critique. Physical & Occupational Therapy
in Pediatrics, 29(1), 86-103.
Haley, S., Coster, W., Ludlow, L., Haltiwanger, J., & Andrellos, P. (1992). Paediatric
Evaluation of Disability Inventory (PEDI) (Version 1.0): Development,
Standardization and Administration Manual. Retrieved from
http://www.commondataelements.ninds.nih.gov/Doc/NOC/Pediatric_Evaluation_of_D
isability_Inventory_NOC_Link.pdf
Henderson, S, Sugden, D. & Barnett, A. (2007). Movement Assessment Battery for
Children-2. Second Edition (Movement ABC-2): Examiner’s Manual. Available from
London, UK: Pearson:
(http://www.pearsonclinical.com/therapy/products/100000433/movementassessment-battery-for-children-second-edition-movement-abc-2.html)
Schulz, J., Henderson, S. E., Sugden, D. A., & Barnett, A. L. (2011). Structural
validity of the Movement ABC-2 test: Factor structure comparisons across three age
groups. Research in Developmental Disabilities, 32(4), 1361-1369.
Smits-Engelsman, B. C., Niemeijer, A. S., & van Waelvelde, H. (2011). Is the
Movement Assessment Battery for Children-2nd edition a reliable instrument to
measure motor performance in 3 year old children? Research in Developmental
Disabilities, 32(4), 1370-1377.
Enhancing Participation in Individual and Community Life Activities Practice Guide
122
Neuro Sensory Motor Developmental Assessment
(NSMDA)
The Neurosensory Motor Developmental Assessment (NSMDA) is a criterion
referenced standardised test of gross and fine motor skills, which can be used
for infants from one month to six years of age. In addition to assessing motor
development the test assesses an infant and child’s neurological system,
primitive reflexes, postural reactions and motor responses to sensory input
(Burns et al., 1989).
The NSMDA was designed for the longitudinal follow-up of infants who are
graduates of the neo-natal intensive care units within Australia. It is used to
discriminate between infants and children whose motor development is
normal or atypical and to predict motor outcome. The 8 months corrected age
provides the best predictor for later outcome. In addition to an item score each
area tested is given a functional grade, which is the therapist’s interpretation
of the test results (Burns et al., 1989).
,
The test consists of a manual; score sheets for each age bands and requires
the use of specific toys that are easily accessible.
Reliability and validity of the NSMDA
Reliability studies of the NSMDA (in children aged 0 to 2 years reported
correlations only (Pearsons correlation r=. 80) which does not take into
account differences between assessors). The tool is considered to have
adequate construct and content validity. The concurrent validity has been
reported in relation to paediatrician’s classification as normal or atypical motor
development. The predictive validity is dependent on the age of assessment,
being better in infants between 8 and 12 months than in younger infants (best
combination of sensitivity and specificity) ("The Neurosensory Sensory Motor
Developmental Assessment Queensland," 2000; Spittle, Doyle, & Boyd, 2008;
Westmead Childrens Hospital, 3rd-4th May, 2008).
Is this tool reliable and valid for infants with Intellectual Disability?
The NSMDA will discriminate between infants and children whose fine motor
and gross motor skills are developing normally or atypically compared to their
peers. It can be used for infants with intellectual disability although, the
reliability and validity with this group has not been researched.
What is the purpose of this assessment?
To determine if an infant or child’s motor skills are developing normally or
differently compared to infants and children of the same age.
Enhancing Participation in Individual and Community Life Activities Practice Guide
123
Potential uses of the tool
•
•
•
•
•
to determine if an infant or child’s motor performance falls within or
outside the normal range
to determine what aspects of motor performance are not developing
normally
to identify the body structure and function issues that are impacting on
an infant or child’s motor development. This knowledge can support
families and therapists when setting functional goals for their planned
interventions
to longitudinally follow motor development from birth to 6 years (e.g.
growth and development follow up for preterm infants)
in research to explore the outcome of infants who are graduates of
neonatal intensive care.
REFERENCES.
Burns, Y. R., Ensby, R. M., & Norrie, M. A., (1989a). The Neuro Sensory Motor
Developmental Assessment. Part 1: Development and administration. Australian
Journal of Physiotherapy, 35(3), 141-149.
Burns, Y. R., Ensby, R. M., & Norrie, M. A.,(1989b). The Neuro Sensory Motor
Developmental Assessment. Part 2:. Predictive and Concurrent validity. Australian
Journal of Physiotherapy, 35(3), 151-157.
Spittle, A. J., Doyle, L. W., & Boyd, R. N. (2008). A systematic review of the
clinimetric properties of neuromotor assessments for preterm infants during the first
year of life. Developmental Medicine & Child Neurology, 50(4), 254-266.
Enhancing Participation in Individual and Community Life Activities Practice Guide
124
Paediatric Evaluation of Disability Inventory
The Paediatric Evaluation of Disability Inventory (PEDI) is a standardised,
norm-referenced test that measures functional skill development and the level
of independent performance of functional activities in the child’s environment.
It is designed to be used with children aged 6 months to 7.5 years. It is
primarily designed for the functional evaluation of young children, however it
can be used to assess older children if their functional abilities fall below that
expected of 7.5 year old children without disability.
The PEDI can be administered through observations of the child, by
professional judgements by clinicians and educators who are familiar with the
child, or by structured interview and parent report.
The PEDI measures both capability and performance of functional activities
over three scales: 1) self-care, 2) mobility, and 3) social function in three
domain areas: 1) Functional skills, 2) Caregiver assistance and 3)
Modifications. Capability is measured by identifying functional skills that the
child has demonstrated mastery and competence in. Performance is
measured by the level of caregiver assistance needed to accomplish major
functional activities. The PEDI also collects information about the
environmental modifications and equipment used by the child in routine daily
activities.
The test consists of a manual, a score form, and a software program for data
entry, scoring and generation of individual summary score profiles. The test
can take between 20-60 minutes to complete, depending on the method of
administration, age and level of functional disability of the child.
Reliability and Validity of the PEDI
Standardisation of the PEDI was conducted on 412 non-disabled children in
America (New England). The children were selected using a stratified quota
sampling strategy according to demographic data obtained from the 1980
United States Census.
Internal consistency was reported by the authors of the PEDI as being
excellent, with reliability coefficients ranging between 0.95-0.99 for all six
scales in the functional skills and caregiver assistance domains. Internal
consistency for the Modifications scales was not reported.
Inter-rater reliability was reported as being very high (ICCs= .96-.99) (Intra
Class Coefficient) on all caregiver assistance scales, and high for the selfcare and mobility scales of the modifications domain. The social function
scale of the modifications domain was reported as being adequate (ICC =
.79). Inter-rater reliability was not reported for the functional skills domain
(Hayley S, Coster W, Ludlow L, Haltiwanger J, & Andrellos P, 1992).
Inter-interviewer reliability for the Caregiver assistance and Modifications
domains was found to be good, ranging between 0.84-1.00 (ICC) in a small
study (n=12) of children with disability where the parents and clinical team
were respondents.
Enhancing Participation in Individual and Community Life Activities Practice Guide
125
Reliability was high (0.74-0.96 ICC) in a study (n=24) of children with
significant disability, across all scales except for the Social function
Modifications scale (ICC 0.30). Changes have been made to the scoring of
this scale by the test authors as a result of this study.
Construct Validity was tested by examining data from three age groupings
from within the normative sample. The changes in mean scores across the
age groups were examined, and correlation coefficients between raw
summary score and age were calculated for each age group as well as a total
across groups score. These calculations provide support for the assumption
that functional status as measured by the PEDI is age-dependent.
Developmental curves developed by the test authors from the mean scaled
scores showed patterns that are consistent with expectations, further
supporting the construct validity of these scales as representing the
development of functional skills between ages 6 months to 7.5 years in
children without disability. Strong content validity was reported by the test
authors.
Concurrent validity was examined by the test authors in two separate studies.
One study compared the PEDI with the Battelle Developmental Inventory
Screening Test (BDIST) on matched groups of non-disabled children and
children with disabilities (total sample 40 children). Concurrent validity was
found to be moderate (0.70-0.73) between the two instruments in the disabled
group, low (0.62) between the caregiver assistance score and the BDIST in
the children with no disabilities, and higher (0.81) between the functional skills
scale and the BDIST in the nondisabled group. Overall, the correlations
indicate that the instruments measure similar domains, with some differences,
especially between the PEDI caregiver assistance scale and the BDIST. A
second study was conducted on more severely disabled children, comparing
the BDIST, Wee-FIM and the PEDI. High correlations (0.80-0.97) between
comparable content domains of the three instruments indicate strong
concurrent validity (Haley et al., 1992).
The mobility domains of the GMFM and PEDI demonstrated strong correlation
in one study (Han et al., 2011).
Discriminant validity was assessed in the study comparing the PEDI with the
BDIST. The PEDI modifications and functional skills scales were better
predictors of group status (disabled or non-disabled) than the BDIST.
Discriminant validity was also tested between the normative sample and the
combined sample for three age groups (infant, preschool, school aged).
Discrimination between groups (disabled or non-disabled) was demonstrated
for each age group, except for a small number in the infant age group.
Responsiveness to change (evaluative ability). The test authors studied two
small samples of children. In a study of 23 children with mild to moderate
traumatic injuries, statistically significant positive changes were seen in all
domains for both normative and scaled scores. In a sample of 23 children with
multiple significant disabilities, significant positive change was found in the
Enhancing Participation in Individual and Community Life Activities Practice Guide
126
scaled scores in the mobility domain only. Normative standard scores in this
sample decreased over time (Haley et al.,1992).
Is This Tool Reliable For The Population With Intellectual Disability?
A systematic review of the literature on the psychometric properties of
evaluative outcome measures of activity limitation used with children with
cerebral palsy (CP) included five papers that investigated the psychometric
properties of the PEDI (3 investigated GMFM and PEDI, 2 investigated PEDI
alone).This systematic review included tools that were developed for use in
children aged 0 to 18 years with CP, or developmental disabilities and
neurological conditions that include CP.
The authors of the systematic review reported that the PEDI mobility domain
was found to perform better for reliability (good-excellent) than the self-care
and social function domains in the studies. Inter-rater reliability ranged
between 0.15-0.95 (ICC) and test-retest reliability varied between 0.67-1.0
(ICC) across the studies.High internal consistency was reported by the study
authors (Cronbach’s alpha 0.98-0.99).
Responsiveness (measurement of change over time or after intervention) was
found to be positive in one study (as detected by parents), inconclusive in
one, and in the other studies change (not responsiveness) was measured.
A retrospective study (n=10) on children with cerebral palsy found the PEDI
demonstrated sensitivity to changes (responsiveness) that were also
observed clinically (Harvey et al., 2008; Knox & Usen, 2000).
One retrospective study (n=53) of children with a range of disabilities in an
inpatient rehabilitation setting (including children with non-traumatic brain
injury, congenital and developmental disabilities) reported that a change of 11
points (on 0-100 scaled score) on the functional skills and caregiver
assistance scales, this represented a minimal clinically important difference
for this clinical group (Lyer et al., 2003).
Is this tool valid for the population with intellectual disability ?
The systematic review found that the PEDI has good concurrent and
discriminative validity for related domains when compared with the PDMS,
GMFM, PODCI and CHQ.Other forms of validity (construct, content) require
testing (Harvey et al., 2008).
What does this tool measure?
The capability and performance of functional activities in three content
domains: self-care, mobility and social function.
Identifies functional skills which the child has mastered or is competent in, the
amount of caregiver assistance required to accomplish daily functional
activities, and the environmental modifications and equipment the child uses
in routine daily activities.
Enhancing Participation in Individual and Community Life Activities Practice Guide
127
Individual raw scores can be converted to normative standard scores and
scaled scores to compare a child’s functional status with peers of the same
age.
Potential uses of the tool
•
•
•
•
•
to identify and describe capability (functional skills) and performance
(amount of caregiver assistance and modifications required to
perform functional skills) in children aged between 6 months and 7.5
years
can be used with children over the age of 7.5 years where their
functional abilities are less than that expected of typically developing
7.5 year old children
caution must be taken with children under the age of 1 year, due to
the low reliability and validity of the tool with this age group
may demonstrate change in capability and performance over time
and following intervention, however responsiveness to change in
children with intellectual disabilities requires further investigation
as an outcome measure for the evaluation of intervention programs.
REFERENCES
Haley, S., Coster, W., Ludlow, L., Haltiwanger, J., & Andrellos, P. (1992). Paediatric
Evaluation of Disability Inventory (PEDI) (Version 1.0): Development, standardization
and administration manual. Boston, MA. Retrieved from
http://www.commondataelements.ninds.nih.gov/Doc/NOC/Pediatric_Evaluation_of_D
isability_Inventory_NOC_Link.pdf
Han, T., Gray, N., Vasquez, M. M., Zou, L. P., Shen, K., & Duncan, B. (2011).
Comparison of the GMFM-66 and the PEDI Functional Skills Mobility domain in a
group of Chinese children with Cerebral Palsy. Child: Care, Health and
Development, 37(3), 398-403.
Harvey, A., Robin, J., Morris, M. E., Graham, H. K., & Baker, R. (2008). A systematic
review of measures of activity limitation for children with Cerebral Palsy.
Developmental Medicine & Child Neurology, 50(3), 190-198.
Iyer, L. V., Haley, S. M., Watkins, M. P. & Dumas, H. M. (2003). Establishing minimal
clinically important differences for scores on the Pediatric Evaluation of Disability
Inventory for inpatient rehabilitation. Physical Therapy, 83(10), 888-898.
Knox, K., & Usen, Y. (2000). Clinical review of the Paediatric Evaluation of Disability
Inventory. British Journal of Occupational Therapy 63(1), 29-32.
Sundberg, K. B. (1992). Inter-rater reliability of the paediatric evaluation of disability
inventory; parental and professional agreement. Unpublished doctoral dissertation,
Boston University. Cited in Haley S, Coster W, Ludlow L, Haltiwanger J, Andrellos P.
(1992). Paediatric Evaluation of Disability Inventory (PEDI) (Version 1.0)
Development, Standardization and Administration Manual. Boston, MA.
Enhancing Participation in Individual and Community Life Activities Practice Guide
128
Toddler and Infant Motor Evaluation
The Toddler Infant Motor Evaluation is a norm-referenced tool that uses an
observational, play based approach to assess the quality of movement of
children aged 4 months to 3.5 years. It is designed to be used by
Physiotherapists, Occupational Therapists and other clinicians with expertise
in the assessment of motor skills. It can be used to identify children with motor
delay and to evaluate changes in their motor skills over time and is both a
discriminative and evaluative tool.
The test consists of 5 Primary subsets: Mobility, Motor Organization, Stability,
Social/Emotional Abilities and an optional subset of Functional Performance.
There are also three clinical subsets: Quality Rating, Atypical Positions and
Component Analysis.
The majority of the assessment is completed by observation of the child and
with the parent encouraging the child to move. The parent or caregiver is
interviewed for the section on Functional Performance. The assessment is
child and parent friendly, as the examiner does not handle the child. The
assessment can be scored in real time or videoed so it can be scored later.
The scoring is lengthy and complex but provides detailed information about
the child’s movement.
Reliability and validity of the TIME
The reliability and the validity of the test is reported to be high .,Tieman et al
2005). Pearson’s correlation co-efficient for test re-test reliability for Mobility,
Stability and Motor Organisation range from .992 to .998. For inter-rater
reliability the values range from .897 to .996.
The construct validity of the TIME was established through the mean scores
and standard deviations of the scores in 14 normative age groups that show
significant age trends for the Mobility, Stability and Motor Organisation
subtests. The content validity was established by an expert panel. The
discriminative validity is established for the mobility and stability subtests.
Specificity is reported to range from 85.9 to 92.6% for the mobility subtest and
90.0 to 96.9 for the stability subtest. The sensitivity values are between 88.2%
and 93.8% for mobility and between 80.6% and 97.2 % for the stability subtest
(Tieman et al., 2005).
The responsiveness of the tool to clinical change was not evaluated
statistically by the authors of the tool; they developed a scale that they felt is
sensitive to small increments in developmental growth and standard scores
that compare the child’s score to a normative sample. The literature discusses
the need for research into the responsiveness of the tool as structural
problems and scoring problems have been detected. (Rahlin et al., 2003).
Enhancing Participation in Individual and Community Life Activities Practice Guide
129
Is this tool reliable and valid for the population with Intellectual
Disability?
The tool is used to identify motor delays in children aged 4 months to 3.5
years. The tool is an observation assessment of motor skill and is reliable and
valid for use with children with intellectual disability.
What does this tool measure?
It is used to identify children with significant and moderate motor delays and
measures the changes in motor skill development over time. 1,2,3 (It is both a
discriminative and evaluative tool).
Potential uses of the tool.
•
to discriminate between infants who are developing normally and those
that have a motor difficulty
•
to measures change in motor skills development over time.
REFERENCES.
Campbell, S. K., Palisano, R. J., & Orlin, M. (2006). Physical Therapy For Children,
St. (4th Ed. ). Louis, Missouri, USA: Sanders Elsevier.
Rahlin, M. R. W., & Cech, D. (2003). Evaluation of the Primary Subtests of Toddler
and Infant Motor Evaluation; Implications for clinical practice in pediatric physical
therapy. Pediatric Physical Therapy, 15(3), 176-183.
Tiemann, B. L., Palisano, R. J., & Sutlive, A. C. (2005). Assessment of motor
development and function in preschool children. Mental Retardation and
Developmental Disabilities, 11(3), 189-196.
Enhancing Participation in Individual and Community Life Activities Practice Guide
130
WeeFIM
The WeeFIM is an activity measure under the International Classification of
Function6. It has been adapted from the adult Functional Independent
Measure (FIM). It is designed to evaluate the child’s functional abilities and
their limitations when performing activities of daily living. The tool takes into
account the level of caregiver assistance required and the use of specialised
equipment.
The WeeFIM consists of 6 sub tests with a total of 18 items. The tool
evaluates both motor and cognitive domains. The subtests are self care
(eating, grooming, bathing, dressing upper body, dressing lower body,
toileting), sphincter control (bladder management, bowl management),
transfers (chair/bed /wheelchair, toilet transfer, tub/shower transfer),
locomotion (crawling, walking, wheelchair, stair climbing), communication
(comprehension, expression) and social cognition (social interaction, problem
solving, memory). Each item on the subscale is scored from 1-7 where 7
indicates complete independence. The minimum total score of 18 indicates
complete dependence in all skills, the maximum score is 126 which indicates
complete independence in all skills (Gunel et al., 2009).
The WeeFIM is easy to administer, it uses a minimal data set and can be
used across disciplines and in a variety of environments such as the home,
school or community. The WeeFIM can be scored by direct observation or a
combination of observation and a caregiver interview. It takes 20 minutes to
administer. In Australia to use the WeeFIM training is required and users need
to need to be accredited. There is a yearly fee to access the FIM data base
The test can be used to assess children without disability aged six months to
eight years and children with a disability aged from six months to 12 years
(Msall 1994). WeeFIM age norms for children from three to eight years of age
can be viewed at: NSW Government, Lifetime Care and Support Authority
Information about the WeeFIM can be sourced at:
Australasian Rehabilitation Outcomes Centre
Reliability and validity of the WeeFIM
The initial pilot testing of the WeeFIM involved the evaluation of its use with
more than 500 American children aged between one to seven years, without
disability. In this pilot study the WeeFIM was able to differentiate between
children with and without disability (limb deficiencies, Down syndrome, spina
bifida, cerebral palsy, prematurity). A strong correlation with the WeeFIM
scores and the age of children between 18 to 48 months was found
(Ottenbacher, 1997 and Msall, 1994).
The inter-rater reliability and test- retest reliability of the WeeFIM when used
with children with disability - cerebral palsy, developmental disabilities,
intellectual disability, Down syndrome, spina bifida and other congenital
abnormalities has been investigated. Msall,1994 and Ottenbacher et. al 1997
Enhancing Participation in Individual and Community Life Activities Practice Guide
131
report that the reliability for the 6 subscale of the WeeFIM ranged from good
to excellent (ICC were between .73 to .98). The total WeeFIM ICC were
greater than .95.
The criterion validity of the WeeFIM was reported by Masall et al (1994). The
WeeFIM scores were compared to the amount of help a carer reported that a
child needed when performing routine daily tasks. The concurrent validity of
the WeeFIM and the PEDI was investigated in an Australian study by
Ziviani et al (2001). This study was with small numbers of children aged
between 1.3 to 9.5 years with acquired brain injury, spina bifida and
chromosomal and genetic abnormalities. The study showed that there is a
high correlation between the WeeFIM and the PEDI, (ICC> .88). The WeeFIM
self care and mobility sub scales have been found to relate well to other
functional outcome measures commonly used when assessing children with
cerebral palsy.
Gunel (2008) explored the relationship between the tools used to classify
motor function in children aged 4 to 15, with cerebral palsy (Gross Motor
Function Classification System (GMFCS), the Manual Ability Classification
System (MACS) )and the WeeFIM. The highest correlations were between
the self care sub group of the WeeFIM and the MACS and the locomotion
subset of the WeeFIM and the GMFCS. Bagley et al (2007) in a study of
children between 4-18 years of age with cerebral palsy found that the
WeeFIM mobility subset was able to discriminate between levels 1 and 11 of
the GMFCS. The WeeFIM self- care scale was able to discriminate between
levels 11 and 111 of the GMFCS.
Harvey et al., 2008, in a systematic review of the literature on measure of
activity limitations for children with cerebral palsy the WeeFIM is reported to
be reliable and responsive to changes. The systematic review questions the
validity of using the WeeFIM to measure changes in activity in individuals with
cerebral palsy. The literature suggests caution when using the WeeFIM with
this group as there is a floor effect in the motor scales. This suggests that the
WeeFIM may not be sensitive enough to use as a measure of motor skills in
young children with cerebral palsy, a measure specifically constructed to
assess young children with CP should be used (Tus et al 2009).
Is this tool reliable and valid for the population with Intellectual
Disability?
Toby Long (2002) indicates that the WeeFIM can be used with children with
developmental disabilities and mental skills younger than 7 years.
What does this tool measure?
The WeeFIM is an outcome measure that can be used to evaluate the
functional abilities of a child with developmental disability and the amount of
support they need to perform activities of daily living. The WeeFIM has been
shown to be responsive to change (Msall et al1997). Oeffinger et al (2008)
reports on the minimum clinically important differences (MCIS) for WeeFIM
Enhancing Participation in Individual and Community Life Activities Practice Guide
132
scores in ambulatory children with cerebral palsy. The reader is referred to
this article which contains a table listing the change scores across the
WeeFIM subscales and the GMFCS classifications.
Potential uses of the tool.
The WeeFIM is a simple and practical tool that is quick to administer and
score. It uses a minimum data set, assess similar domains to the PEDI and
can be used when the details in the PEDI isn’t required. The WeeFIM is not a
replacement for comprehensive motor, communication and cognitive
assessment.
The WeeFIM has also been used to assess the functional change in children
with cerebral palsy after orthopaedic surgery, to report on the functional skills
of children with Down syndrome, living in Western Australia when they enter
school and to explore if a parents perception of their preschool child’s quality
of life is related to their report of the amount of support they need with
functional tasks( Leonard et al., 2002). The WeeFIM has been used in an
Australian Study to describe the different patterns of disability in people with
Rhett syndrome (Colvin et al., 2003)..
In Australia the WeeFIM is used as the functional assessment to determine
eligibility criteria for participation in the Lifetime Care and Support Scheme if
the injured person has sustained a brain injury, amputation or burn.
REFERENCES.
Bagley, A. M., Gorton, G., Oeffinger, D., Barnes, D., Calmes, J., Nicholson, D.,
Damiano, D., Abel, M., Kryscio, R., Rogers, S., & Tylkowski, C. (2007). Outcome
assessment in children with Cerebral Palsy, Part 2: Discriminatory ability of outcome
tools. Developmental Medicine and Child Neurology, 49(3), 181-186.
Colvin, C., Fyfe, S., Leonard, S., Schiavello, T., Ellaway, C., De Klerk, N.,
Christodoulou, J., Msall, M., & Leonard, H. (2003). Describing the phenotype
in Rhett syndrome using a population database. Arch Dis Child, 88(1), 38-43.
Gunel, M. K., Mutlu, A., Tarsuslu, T., & Livanelioglu, A. (2009). Relationship among
the Manual Ability Classification System (MACS), the Gross Motor Function
Classification System (GMFCS), and the functional status (WeeFIM) in children with
spastic cerebral palsy. 168(4), 477-485.
Harvey, A., Morris, M., Graham, K. G., & Baker, R. (2008). A systematic review of
measures of activity limitation for children with cerebral palsy. Developmental
Medicine and Child Neurology, 50(3), 190-198.
Leonard, S., Msall, M., Bower, C., Tremont, M., & Leonard, H. (2002). Functional
status of school-aged children with Down syndrome. Journal of Pediatric Child Health,
38(2), 160-165.
Long, T., & Toscano, K., (2002). Handbook of Pediatric Physical therapy, Baltimore:
Enhancing Participation in Individual and Community Life Activities Practice Guide
133
Lippincott Williams & Williams.
McAuliffe, C. A., Wenger, R. E., Schneider, J. W., & Gaebler-Spirs, D. J. (1998).
Usefulness of the Wee-Functional Independence Measure to Detect Functional
Change in Children with Cerebral Palsy. Pediatric Physical Therapy, 10(1), 23-28.
Msall, M. E. (2005). Measuring functional skills in preschool children at risk for
neurodevelopmental disabilities. Mental Retardation and Developmental Disabilities,
11(3), 263-273.
Msall, M. E., DiGaudio, K., Rogers, B. T., La Forest, S., Catanzaro, N. l., Campbell, J.,
Wilczenski, F., & Duffy, L. C. (1994). The Functional Independence Measure for
Children (WeeFIM): Concetual basis and pilot use in children with developmental
disabilities. Clinical Pediatrics, 33(7), 421-430.
Msall, M. E., Rogers, B. T., Ripstein, H., Lyon, N., & Wilczenski, F. (1997).
Measurements of functional outcomes in children with Cerebral Palsy. Mental
Retardation and Developmental Disabilities, 3(2), 194-203.
Oeffinger, D., Bagley, A., Rogers, S., Gorton, G., Kryscio, R., Abel, M., Damiano, D.,
Barnes, D., & Tylkowski, C. (2008). Outcome tools used for children with cerebral
palsy: responsiveness and minimum clinically important differences. Developmental
Medicine and Child Neurology, 50(12), 918-925.
Ottenbacher, K. J., Msall, M., Lyon, N. R., Duffy, L. C., Granger, C. V., & Braun, S.
(1997). Interrater agreement and stability of the Functional independence Measure for
Children (WeeFIM): Use in children with developmental disabilities. Arch Phys Med
Rehabil, 78(12), 1309-1315.
Ottenbacher, K. J., Msall, M., Braun, S., Lane, S. I., Granger, C. V., Lyons, N., &
Duffy, L. C. (1996). The stability and equivalence reliability of the Functional
Independence Measure for Children (WeeFIM). Developmental Medicine and Child
Neurology, 38(10), 907-916.
Tus, B. S., Kuchukdeveci, A., Kutlay, S., Yavuzer, G., Elham, A. H., & Tennant, A.
(2009). Psychometric properties of the WeeFIM in children with Cerebral Palsy in
Turkey. Developmental Medicine and Child Neurology, 51(9), 732-738.
Ziviani, J., Ottenbacher, K. J., Shepherd, K., Foreman, S., Astbury, W., & Ireland, P.
(2001). Concurrent validity of the Functional Independence Measure for Children
(WeeFIM) and the Pediatric Inventory for Children with Developmental Disabilities and
Acquired Brain Injuries. Physical and Occupational Therapy in Pediatrics, 21(2-3), 91101.
Enhancing Participation in Individual and Community Life Activities Practice Guide
134
Appendix 3: Hypertonia Assessment Tool
The Hypertonia Assessment scale (HAT) is a standardised clinical tool,
administered by clinicians to differentiate between the three subtypes of
hypertonia; spasticity, dystonia and rigidity in the paediatric population
(between the ages of 4-19 years). The HAT assesses the Body Structure and
Function domain of the ICF.
In 2013 the original version of the HAT was revised (Knights et al.,2013). The
first item, which was a dystonia measure, was removed from the HAT scale.
The updated HAT scale has 6 items; two items diagnose spasticity, two
diagnose dystonia and two diagnose rigidity. Each item on the scale is scored
as a positive/negative score. A positive score in at least 1 item in that subtest
indicates the presence of the hypertonia subtype.
The HAT manual is available for free download.
Reliability and validity of the HAT
The HAT has good reliability and validity for identifying spasticity and the
absence of rigidity, and moderate reliability and validity for identifying dystonia
(Albright, B & Andrews, M 2010).
Is this tool reliable and valid for the population with Intellectual
Disability?
For children who are non verbal and who are unable to follow directions to
perform the dystonia items- items 2 and 6 it may be more difficult to elicit the
dystonia. These items require the person to perform a number of voluntary
movements such as blinking, counting or fist –clenching (Albright &Andrews,
2010).
The reliability and validity of the HAT when used with children with intellectual
disability has not been investigated.
What does this tool measure?
The HAT differentiated between the different subtypes of hypertonia:
spasticity, dystonia and rigidity in a paediatric population.
Potential uses of the tool
•
Distinguishing between the sub types of hypertonia is important from a
research and clinical point of view. Determining the nature of the
hypertonia will support the medical management of the different types.
•
The ability to differentiate between the types of hypertonia will support
the identification of participants for research studies and support the
interpretation of research results.
Enhancing Participation in Individual and Community Life Activities Practice Guide
135
REFERENCES.
Albright, B., & Andrews, M. (2010). Development of the Hypertonia
Assessment Tool (HAT). Developmental Medicine and Child Neurology 52(5),
411-412.
Knights, S. D. N., Kawamura, A., Switzer, L., Fehlings, D. (2013). Further
Evaluation of the Scoring, Reliability, and Validity of the Hypertonia
Assessment Tool (HAT). Journal of Child Neurology 29(4), 1-5.
Enhancing Participation in Individual and Community Life Activities Practice Guide
136
Guide for ADHC prescribers of commercially available equipment:
Therapeutic Goods Act considerations
What is the item of equipment and why is it required?
Document your clinical reasoning/risk assessment (Draft
risk assessment proforma can be used)
Yes
Record ARTG number in
client records
Is it on ARTG?
1. Ask supplier for the ARTG
number.
2. Then confirm the number on
the TGA website
https://www.ebs.tga.gov.au/ebs/A
NZTPAR/PublicWeb.nsf/cuDevice
s?OpenView / for that particular
No
Contact supplier and
discuss whether they
consider the item exempt or
excluded.
Excluded -not a therapeutic good.
This is a limited range of very basic
items used in the home only. Only class
items as excluded if written advice from
the supplier has been provided to that
effect. Check Regional Senior Therapy
drive for items already identified as
excluded.
supplier AND item*
*NB Check that your supplier is the
sponsor listed for the item on the
ARTG.
If not, check with your supplier that
they have sourced the item from the
listed sponsor. Otherwise, they must
have listed it themselves in order for
you to prescribe it.
Acronym buster
ARTG- Australian Register of
Therapeutic Goods
TGA- Therapeutic Goods
Administration
Exempt from inclusion on ARTG
e.g. custom made
NB these are still therapeutic goods
and still need to meet the TGA’s
Essential Principles.
Not exempt / excluded
Obtain and record
written advice from the
supplier that item is
exempt
Enhancing Participation in Individual and Community Life Activities Practice Guide
137
Must have ARTG
number
Can not prescribe
this item
Obtain and record
written advice from the
supplier that item is
excluded AND
ensure no other similar
items are listed
If uncertainty around
listing requirement,
email case to Practice
Leader outlining all
steps and outcomes
undertaken above.
Appendix 5: Best Practice Checklist for Equipment Modified or Fabricated by
FACS staff
Background
Following correspondence with the Therapeutic Goods Administration (TGA),
the Office of the Senior Practitioner (now Clinical Innovation and Governance)
developed this checklist to assist FACS staff to use best practice when
fabricating or modifying equipment. It is important that this checklist is not
amended locally as the TGA has approved this version.
The purpose of this document is to:
•
Ensure the safety of clients / carers and staff when using any
equipment modified or fabricated by FACS staff.
•
Increase the evidence base for the use of equipment.
•
Support compliance with the Therapeutic Goods Act.
Instructions
The checklist should be completed by the delegating/prescribing therapist and
filed in the client file each time a piece of equipment is modified or fabricated.
Therapists are expected to practice within the scope of their role descriptions,
with reasonable care and within the level of their expertise and experience.
This means that standard clinical decision making should be used when
completing this checklist.
This guide will assist you to complete the checklist.
For further information visit Custom made medical devices - TGA and / or
consult with your senior clinician.
Enhancing Participation in Individual and Community Life Activities Practice Guide
138
Essential Principles
Essential Principle 1: No compromise to health and safety.
Mark yes to indicate this principle has been met when:
•
You have documented analysis of benefits compared with foreseeable
risks.
Essential Principle 2: Equipment design and construction conforms with
safety principles.
Mark yes to indicate this principle has been met when:
•
You have eliminated any identified risks or hazards AND
•
If you have been unable to eliminate any identified risks or hazards you
have put methods in place to alert and inform the user of the
equipment that risks or hazards remain.
Essential Principle 3: Equipment suitable for intended purpose.
Mark yes to indicate this principle has been met when:
•
The equipment performs as intended.
Essential Principle 4: Long term safety.
Mark yes to indicate this principle has been met when:
•
The expected lifetime of the equipment has been identified.
•
The likely stresses on the equipment have been identified.
•
The regular maintenance requirements of the equipment have been
identified.
Essential Principle 5: Equipment is not adversely affected by transport
or storage.
Mark yes to indicate this principle has been met when:
•
Information on storage and transport of the equipment has been
provided.
•
Equipment is not adversely affected when stored or transported as
recommended.
Enhancing Participation in Individual and Community Life Activities Practice Guide
139
Essential Principle 6: Benefits of the equipment outweigh any side
effects.
Mark yes to indicate this principle has been met when:
•
Undesirable side effects have been identified, documented and acted
upon.
•
Side effects have been compared with the benefits expected. Process
has been documented.
•
The user has been made aware of any possible side-effects.
Essential Principle 7: Chemical, physical and biological properties.
Mark yes to indicate this principle has been met when:
•
Flammability and toxicity of materials used has been considered in
selecting materials used to construct the device. Labeling and
instructions have clearly identified any residual risks.
•
Foreseeable contaminants or residues (e.g. solvents) do not endanger
users or handlers of the equipment. If they do, labeling or instructions
have been provided with the device to reduce or mitigate the risk.
•
Risks associated with any substances that may leach from the
equipment are minimised.
•
Cleaning, disinfecting or sterilising materials (circle which is
appropriate) can be used on the equipment without adverse effect. If
not, labeling or instructions have been provided to reduce the risk of
these substances negatively interacting with the equipment or the user.
Essential Principle 8: Infection and microbial contamination.
Mark yes to indicate this principle has been met when:
•
Any risk of infection of the client by using the equipment has been
eliminated or minimised and the user informed of any residual risk.
•
Any risks of infection to handlers of the equipment has been eliminated
or minimised and the user informed of any residual risk.
Enhancing Participation in Individual and Community Life Activities Practice Guide
140
Essential Principle 9: Construction and environmental properties.
Mark yes to indicate this principle has been met when:
•
If equipment is being used in combination with another medical device,
both still operate safely when combined.
•
No risks to the equipment are posed by foreseeable environmental
conditions.
•
The user/s of the equipment has been informed of any maintenance
requirements, and the possible consequences if the equipment is not
maintained as instructed.
•
Risks associated with ageing of materials have been identified, and
eliminated or minimised. The user/s of the equipment have been
advised of any components that are “consumables” due to ageing /
wear which should be replaced as appropriate throughout the life of the
equipment.
Essential Principle 10: Medical devices with a measuring function.
It is unlikely that this principle will ever be applicable to the work of a FACS
employee in fabricating or modifying equipment. Consult with the TGA
website, your senior clinician and / or line manager for any queries.
Essential Principle 11: Protection against radiation.
It is unlikely that this principle will ever be applicable to the work of a FACS
employee in fabricating or modifying equipment. Consult with the TGA
website, your senior clinician and / or line manager for any queries.
Essential Principle 12: Devices connected to or equipped with an energy
source.
Mark yes to indicate this principle has been met when:
•
Where equipment is modified that has an existing electrical source, the
risk of accidental electric shock is not increased by that modification.
(FACS staff should not create, from original materials, any equipment
with an electrical source or electrical components.)
•
Where equipment is modified that has an existing energy source (e.g.
gas, hydraulic, pneumatic or other energy supply) the terminal or
connector (to the energy supply) on the device is not modifiedClient /
user / handler of the equipment is protected against mechanical risks.
•
Risks to the client / user / handler of the equipment as a result of
vibration are minimised.
•
Risks to the client / user / handler of the equipment as a result of noise
are minimised.
•
The equipment never reaches a potentially dangerous temperature.
Essential Principle 13: Information provided with the equipment.
Enhancing Participation in Individual and Community Life Activities Practice Guide
141
Mark yes to indicate this principle has been met when information provided
with the equipment:
•
Identified the equipment and the intended user.
•
Identified who made or modified the equipment, and their address.
•
Explained how to use the equipment safely, including any special
operating instructions, having regarded the training and knowledge of
the users of the equipment. Printed instructions for users are
particularly important with more complex devices.
•
Identified the purpose of the equipment.
•
Outlined particular handling or storage requirements of the equipment.
•
Outlined warnings, restrictions or precautions that should be taken in
relation to use of the equipment.
•
Indicates that the device has been custom made for a particular
individual and is intended for use only by that individual.
•
Where required a statement of the date up to when the equipment can
be safely used, or if this is not provided, a statement of the date when
the equipment was manufactured.
•
Information about any particular facilities required for use of the
equipment, or training or qualifications required by the user of the
device.
•
The information provided was in a format, contained content, and was
in a location (on the device, on the packaging or as a leaflet supplied
with the device – please specify) that was appropriate for the
equipment and its intended purpose.
•
Information provided was in font at least 1mm high.
The Newly Prescribed Equipment Information sheet (Appendix 7) may assist
you to meet the requirements of this Essential Principle.
Essential Principle 14: Clinical evidence:
Mark yes to indicate this principle has been met when:
•
Clinical evidence exists supporting use of such equipment e.g. clinical
trial, literature review.
•
If no clinical evidence exists, clinical data is being collected on the
outcomes of use of this piece of equipment.
Enhancing Participation in Individual and Community Life Activities Practice Guide
142
Best Practice Checklist for Provision of Equipment Modified or
Fabricated by FACS staff.
Person’s name
DOB:
Name of therapist:
Date of equipment modification / fabrication:
Description of equipment:
Intended purpose of equipment:
Equipment built from scratch/equipment modified (circle which applies)
Confirm that each of the following essential principles has been met. If you
require further information about the details of a principle refer to Appendix 5
of this practice guide, speak to your senior clinician and / or visit Essential
principles checklist - TGA.
Please note: It is important that this checklist is not amended locally as the
TGA has approved this version.
Essential Principle
Met
Y/N
Comments
1. No compromise to health and safety.
2. Equipment design and construction
conforms with safety principles
3.Equipment suitable for intended purpose
4. Long term safety
Enhancing Participation in Individual and Community Life Activities Practice Guide
143
5. Equipment is not adversely affected by
transport or storage
6. Benefits of the equipment outweigh any
side effects
7. Chemical, physical and biological
properties
8. Infection and microbial contamination
9. Construction and environmental
properties
10. Medical devices with a measuring
function
11. Protection against radiation
12. Devices connected to or equipped with
an energy source
13. Information provided with the
equipment
14. Clinical evidence
Signed by therapist:
Date:
Enhancing Participation in Individual and Community Life Activities Practice Guide
144
Appendix 6: Risk assessment / clinical reasoning proforma
Risk assessment / clinical reasoning
for (insert person’s name)’s (insert name of type of equipment being
assessed)
The purpose of this form is to assist practitioners in decision making
when prescribing equipment. It is not intended to replace organisational
Work Health and Safety Policies and Procedures.
Date:
Person’s name:
Date of birth:
Person’s address:
Therapist conducting
risk assessment:
Goal/s of the
equipment
General benefits of
this type of equipment
(e.g. pressure care,
increase bone density,
increase participation
in activities etc.)
OPTION 1:
Equipment description (specify make and model):
ARTG number (if applicable):
Does the equipment meet the above goal/s (this should be determined in collaboration with
the person / carers)?
Potential benefits for this person with this specific model of equipment:
Potential risks for this person with this specific model of equipment:
Benefits outweigh risks Y/N (consider general benefits listed above and specific benefits
versus potential risks).
Insert photo of (insert person’s name) in this equipment here (optional):
Enhancing Participation in Individual and Community Life Activities Practice Guide
145
OPTION 2:
Equipment description:
ARTG number (if applicable):
Does the equipment meet the above goal/s (this should be determined in collaboration
with the person / carers)?
Potential benefits:
Potential risks:
Benefits outweigh risks Y/N
Insert photo of (insert person’s name) in this equipment here (optional):
NOTE: Copy and insert as many option tables and photos as is appropriate
EQUIPMENT MAKE AND MODEL CHOSEN (state reason(s) why):
Therapist:
Signature
Name
Position
Date
Enhancing Participation in Individual and Community Life Activities Practice Guide
146
Appendix 7: Newly Prescribed Equipment Information Sheet
Information Sheet
for (insert person’s name)’s newly prescribed (insert equipment name)
Date:
Does this information sheet replace a
previous sheet provided regarding the
same equipment?
Person’s name:
Yes/No
Date of
birth:
Person’s
address:
Prescribing
therapist:
(including contact
details)
Equipment description: (including whether the equipment was fabricated or modified by
the organisation’s staff)
Equipment picture:
Date manufactured/made:
____/____/____
Date issued:
____/____/____
Supplier: (including contact details)
Funded by:
Period of
warranty:
(New Equipment
only)
Enhancing Participation in Individual and Community Life Activities Practice Guide
147
Instructions:
What is (name)’s (equipment) for?
What is (name)’s goal in relation to use of this piece of equipment?
How (name)’s (equipment) should be used.
Where should (name) use the (equipment)?
When should (name) not use the (equipment)? (e.g. during transport, in a certain
environment etc.)
Where should (name)’s (equipment) be kept?
How should (name)’s (equipment) be handled?
How should (name)’s (equipment) be transported?
How to clean (name)’s (equipment) and ensure good hygiene (i.e. preventing cross
infection)
When should (insert person’s name) stop using the (equipment)? (e.g. out-grown,
equipment has expired, broken etc.)
Are there any warnings or risks when (name) uses the (equipment)? (e.g. choking
hazards, airway safety etc.)
Who to contact and when to contact when it’s time to review (name)’s (equipment).
Additional instructions/pictures stored with the equipment?
Yes/No
Enhancing Participation in Individual and Community Life Activities Practice Guide
148
Please note:
(Name) or his/her carers have the responsibility to ensure that the (equipment) is
maintained and cleaned as per instructions.
The (equipment) is intended for use only in its current form (see photo on page 1)
and for (name).
If the (equipment) gets damaged, no longer fits, or is not meeting (name) goals, then
(name) or his/her carers are responsible for requesting a review.
If (name) or his/her carers are unsure about anything to do with the (equipment),
they should contact (insert name of the prescribing therapist/role) at the (insert
organisation name and office) on (insert office main phone number).
Only the people currently trained by the prescribing therapist in using the
(equipment) with (name) are able to demonstrate the (equipment)’s use to others. If
these people are no longer available new people need to be trained. In this case
contact the organisation the prescribing therapist was from at the number above, or
the National Disability Insurance Agency to discuss options.
Prescribing therapist:
Signature
Name
Position
Phone number
Date
Enhancing Participation in Individual and Community Life Activities Practice Guide
149
Appendix 8: Alternative sources of funding
General guidelines for submissions:
•
Clearly state the purpose of the item requested.
•
Provide some background information (diagnosis, description, social
situation, functional skills, current equipment, implications, other
applications)
•
Describe the equipment required (include photos, quote, features &
benefits, growth)
•
Demonstrate that you are unable to source funding elsewhere. E.g. the
item does not meet EnableNSW criteria, an EnableNSW application
was rejected, or there is a long waiting list for funding.
Here is a list of some of the charities and organisations that may provide
assistance with funding for equipment. There are also smaller local charities
that may be able to provide assistance that you can find by searching the
internet, or investigating local options.
1. Variety, the children’s charity
Through their Freedom Program, Variety helps children gain independence by
providing financial support for mobility, positioning and in-home care needs.
For further information, to make enquires, or to submit an application go
to Variety, the children's charity
2. Rotary Club
Australian Rotary Clubs are part of an international network of business,
professional and community leaders who strive to make the world a better
place through practical efforts.
You can find the local Rotary Club at Rotary Club locator. If you are unsure of
the procedure begin by phoning the selected club, explain the reason for your
call and ask them what the next steps should be. You will need to send a
letter of request.
For more information visit Rotary Australia
3. Lions Club
Assists with local community fundraising for special causes and help with
development and building of local parks, community venues and sporting
centres.
To find a local club in your area use the lions club directory.
For more information visit lions australia
Enhancing Participation in Individual and Community Life Activities Practice Guide
150
4. St George Foundation
St.George Foundation focuses on helping smaller community organisations
that work to provide a brighter future for socially, economically or physically
disadvantaged children.
For more information visit St George Foundation
5. Make a wish Foundation
Grant the wishes of children with life threatening medical conditions.
For more information visit make a wish australia
6. Starlight Foundation
Grants the wishes of seriously ill children and their families.
For more information visit Starlight children's foundation
7. Samuel Morris Foundation
This foundation purchases equipment and aids for children disabled by nonfatal drowning or other hypoxic brain injuries, to support their daily care and
quality of life.
For more information visit The Samual Morris Foundation
8. John Maclean Foundation
Provides financial and equipment assistance to children (between 3 – 18
years of age) who use wheelchairs. They can assist with purchasing
wheelchairs, home and vehicle modifications, modified sports equipment,
surgery and medical assistance, and computers, remedial aids and other
items that improve the quality of life for the child and their family.
For more information visit John Maclean Foundation
9. Benevolent Society
Helps people change their lives through support and education
For more information visit benevolent society
10. Carers NSW
Funding for equipment may be available if a carer is accessing services from
Carers NSW through their Older Parent Carers Program. This program is for
Enhancing Participation in Individual and Community Life Activities Practice Guide
151
older parent carers caring for a son or daughter with disability or long term
illness.
For more information visit carersNSW
11. Steve Waugh Foundation- Australia
The foundation provides a coordinated approach to the service, identification,
treatment and research of children affected by rare diseases to improve the
quality of their life. It may fund equipment, medicines, treatment or minor
house modifications for children and young people (0-25years).
For more information visit stevewaughfoundation
12. Youngcare at home grants
Originally a Queensland charity, it has now been expanded to include NSW.
Provides one-off funding grants to support adults aged 18 – 65 years of age
who have high support needs and are living at home and are at risk of
entering an aged care facility.
For more information visit youngcare
13. The Walter and Eliza Hall Trust, Survival Fund
An initiative of the Walter and Eliza Hall Trust, the Survival Fund aims to
assist those in poverty that are experiencing crisis. They have funded
equipment for people with disability who were unable to source funds
elsewhere.
For more information visit the survival fund.
14. NSW Fair Trading
On 1 July 2015, NSW Fair Trading assumed responsibility for administering
the Charitable Fundraising Act 1991, which outlines how an organisation can
legally undertake charitable fundraising activities.
For more information visit NSW Fair Trading - charitable fundraising
Enhancing Participation in Individual and Community Life Activities Practice Guide
152
Appendix 9: Assessment tools for Physical Activity
The Children’s Assessment of Participation Enjoyment –
CAPE
The CAPE is designed to document how children, with or without disability
participate in everyday activities outside of school hours. The CAPE
addresses the intensity and diversity of the child's participation, where the
activities are done, with whom and the child's enjoyment of the activities. The
CAPE can be used with the Preference for Activities (PAC), which is
considered an extension of the CAPE, to address the child's preference for
these activities (Clanchy et al., 2004, King et al., 2004, Ziviani et al., 2010).
These measures can be used as an assessment tool, an outcome measure
and in clinical research. Under the International Classification of Functioning,
Participation and Health (ICF), the CAPE and the PAC are measures of the
Participation domain.
The CAPE and the PAC are designed for use with children and youth 6 to 21
years of age. The children are asked to record their participation in activities
over a four month time frame. The record form can be completed by the child
or youth with assistance from a parent or a caregiver (self administered) or by
using activity cards and visual response pages showing children with and
without disabilities engaging in various activities (interviewer administered).
The test kit includes a manual, record forms (the CAPE and the PAC are
combined in one booklet), 57 activity cards, 10 category cards and the CAPE
and the PAC summary score sheets. The CAPE takes 30 -45 minutes to
complete. The PAC takes 15 to 30 minutes to complete.
These tools are not discipline specific and can be used by the different
professionals working in the health and disability sectors. Reviewing the
manual and practice administering the assessments is sufficient to learn to
administer and score the CAPE and the PAC, no additional training is
required (King et al., 2004).Instructions for the scoring of the CAPE and the
PAC are detailed in the manual. Standardised administration and scoring
procedures are outlined in the manual and should be followed to maintain the
tests reliability and to aid in the interpretation of the results.
Reliability and validity of the CAPE and the PAC
The construct validity of the tool was examined during the development of the
CAPE /PAC by conducting a thorough literature review on participation, expert
review and pilot work. This ensured that the tools sampled a comprehensive
range of activities that children commonly participated in, that the items were
placed in the appropriate domains and activity types, and that the items
reflected the conceptual model of participation based on the World Health
Organisation framework (King et al 2003). The minimally clinically important
changes over time (responsiveness) of the CAPE and PAC have not been
reported (Ziviani et al., 2010).
Enhancing Participation in Individual and Community Life Activities Practice Guide
153
The internal consistency (the degree to which the test items examine the
same thing) is low to moderate. Test retest and inter-rater reliability is
moderate to high, with the exception of scores on the enjoyment dimension,
which were low to moderate (King et al., 2004).
Is the tool reliable and valid for use with individuals who have an
Intellectual Disability?
To complete the CAPE and the PAC children and youth need to be able to
comprehend the task of recognising and sorting activities.
The reliability and validity of the tool for use with people with intellectual
disability has not been reported in the literature.
What does the CAPE/PAC measure?
The CAPE and the PAC can be used together to learn about a child’s
participation, their participation preferences, what they enjoy as well as the
intensity, location and involvement with others. The measures can be used
independently although using them together gives a more accurate account of
the complex nature of a child’s participation.
Potential uses of the tool
•
To determine specific goals
•
To evaluate change in a person’s participation over time
•
To evaluate the effectiveness of interventions that target participation.
REFERENCES.
Clanchy, K. M., Tweedy, S. M., & Boyd, R. (2011). Measurement of habitual physical
activity performance in adolescents with Cerebral Palsy: A systematic review.
Developmental Medicine and Child Neurology 53(6), 499-505.
King, G., King, I. S, Rosenbaum, P, Kertoy., M. (2004). CAPE/PAC Children’s
Assessment of Participation and Enjoyment & Preferences for Activities of
Children. San Antonio, USA: Pearson. Retrieved from
http://otforchildrenassessmentportfolio.blogspot.com/2013/04/childrensassessment-of-participation.html
Ziviani, J. Desla, L., Feeney, R., & Boyd, R. (2010). Measures of participation,
outcomes and environmental considerations for children with acquired brain
injury: A systematic review. Brain Impairment 11(2), 93-112.
Enhancing Participation in Individual and Community Life Activities Practice Guide
154
The International Physical Activity Questionnaire
The IPAQ-ID is a standardised instrument which has been designed to use
with adults with intellectual disability to measure their physical activity. The
IPAQ-ID is a face to face or a telephone interview that asks about the physical
activity a person does at their job/day placement, when moving/ transporting
between places, their home and leisure activity and the time they spend
sitting. The tool explores the intensity (moderate or vigorous) of this physical
activity. The interview can be held with the person or with someone who
knows them well. It takes, on average 15 minutes to complete.
Is the tool reliable and valid to use with individuals with Intellectual
Disability?
The reliability and validity of the IPAQ-ID was investigated with a sample of 45
adults with intellectual disability. The test re-test reliability of the tool was
collected from 14 proxy respondents. The correlation coefficients ranged from
.28 for moderate activity to .84 for vigorous activity, but as most were over
> 0.5 so the tool is felt to have good reliability.
The criterion validity of the tool was assessed by comparing data from the
IPAQ-ID proxy respondent reports for the adults with intellectual disability
against the data obtained from an accelerometer that the study participants
wore for 7 consecutive days. Overall the correlation coefficients indicated a
significant correlation between the physical activity determined by the
IPAQ-ID and the accelerometer data ( 54- 72).
What does the tool measure?
The tool is designed specifically to measure the physical activity of people
with intellectual disability across all environments that they access.
Potential uses of the tool
• To provide information on the level of physical activity of people with
intellectual disability and to compare this level with the national
recommendations for physical activity in adults to achieve a health
benefit.
• To investigate the benefits of physical activity, both from a health and a
psychosocial perspective for people with intellectual disability.
• To explore the factors that support physical activity for adults with
intellectual disability and to identify the barriers to physical activity.
• To inform caregivers and policy makers on the health benefits of
physical activity and the factors that support and hinder people with
disability to lead an active healthy lifestyle.
Please contact Dr Kerrie Lante at Flinders University for information about this
tool and its use. Email [email protected] or Ph: (08) 8201 5094
REFERENCES
Lante, K. (2007). Development of a proxy response instrument to measure the
physical activity behaviours of adults with an intellectual disability. Thesis
retrieved from https://researchbank.rmit.edu.au/view/rmit:6363.
Enhancing Participation in Individual and Community Life Activities Practice Guide
155
Six minute walk test
The Six- minute walk test (6MWT) is a measure of the activities domain under
the International Classification of Functioning, Disability and Health (ICF)
(Majnemar et al.,2012). The 6-minute walk test (6MWT) was originally
designed for use with adults with respiratory impairment. The test measures
functional walking capacity: it is a self -paced, sub maximal test of exercise
capacity which is felt to reflect the exercise level needed for daily tasks (ATS
2002).
The test is simple and inexpensive to perform and takes about 20 minutes to
complete. No specialised training is required unless the individuals to be
assessed have health issues that would necessitate that the tester has a
basic life support certification or that a doctor is present (Majnemar et al,
2012). An indoor flat straight walkway at least 30 meters long, free of
obstacles with interval markings every 3 meters, a chair and a stopwatch or
timer is required. Standardised instructions are given at the start of the test
and standardised encouragement is provided each minute of the test.
Individuals are able to stop and rest with the timer still going. The total
distance walked in 6 minutes and the individual’s limiting factors are recorded.
Optional scoring includes the number and duration of rest periods and energy
expenditure during walking (ATS 2002). The 6MWTcan be used with any
diagnostic condition and is now used with children (>4 years) and with a wide
range of impairments that may impact on walking capacity (Majnemar et
al.,2012).
A description of the test can be found at Guidelines for the 6 minute walk
test.
Modification to the testing procedures for the 6-minute walk test for use with
paediatric clients are reported in the literature. Thompson at al (2008), when
assessing ambulatory children with cerebral palsy used a corridor (20m X
45m) and marked 30m intervals on the wall. Children were instructed to walk
as many laps as possible in 6 minutes, without running. Standardised
instructions were given by an assessor walking just behind the child, a second
assessor walked one metre behind the child monitoring the stop watch.
Younger children who had difficulty understanding the concept of walking
continuously were provided with visual goals placed approximately at 20
metre intervals ahead of the child during the test.
DeGroot et al (2011) when assessing children with spina bifida recommended
using a distance of 15-20 metres between turning points in preference to the
30 metres used when testing adults. They recommend only using a pacer
(person behind the child) when there is a risk of falling. These authors
recommend using a heart rate monitor to help determine if low scores are due
to how prepared the child is to perform the test or due to movement difficulties
resulting in a higher physiological effort.
Reliability of the 6MWT.
In children without disability the 6MWT had excellent test re-test reliability
(ICC .94 ) (Majnemar et al., 2012, Pin et al., 2011, Thompson et al., 2008).
Enhancing Participation in Individual and Community Life Activities Practice Guide
156
Several studies have reported reference values for healthy children from
different geographical locations ( Klepper et al., 2011, Li et al., 2007) and
associations between age, height, weight and gender are discussed in this
literature. In general, in children without disability, those who are older and
bigger will walk longer distances.
Bartels et al (2013) systematic review of the studies on the 6MWT in chronic
paediatric conditions indicated that there is strong evidence for reliability in
children with cerebral palsy, moderate evidence in children with cystic fibrosis
and obesity and limited evidence for reliability in children with muscular
dystrophy and spina bifida.
The 6MWT is reliable (ICC ranging from .91 to .92) following practice tests
(Gyatt et al., 1985) with adults in an inpatient setting with chronic heart failure.
The 6MWT has demonstrated test retest reliability (ICC.97) in a study with 25
adults with cerebral palsy (GMFCS levels 1-111 mean age 36yrs) without
intellectual disability (Andersson et al., 2006). The average walking distance
ranged from 316m, 336 m, 341m and to 345m over 4 tests. In this study the
clinically significant change in distance walked to demonstrate improvement
for individuals walking without an aid is 37m and 44m for subjects walking
with an aid. Maanum et al (2010), with a similar age group of 126 individuals
with cerebral palsy (GMFCS 1-111) found that the mean walking distance was
485m (SD 95m).
Validity of the 6MWT
Information on the validity of the 6MWT for children with physical disability is
limited in the literature. Several studies, in children without disability and those
with physical disabilities and chronic health conditions explore the convergent
validity of the 6MWT with VO2max, indicating that there is a low correlation.
This indicates that the 6MWT is a suitable measure of walking capacity but
not of cardiopulmonary fitness in ambulatory children, adolescents and young
adults with physical disabilities (Bartels et al.,2013, Greiger et al. 2007, Guyatt
et al., 2007). Bartels et al (2013) reports that there is good discriminative
validity with control groups and sub groups of children with Duchene muscular
dystrophy.
Minimal important change scores were not calculated in any of the studies of
chronic paediatric conditions in the Bartels et al (2013) systematic review of
the 6MWT. Majnemer (2012) reports that for children with cerebral palsy the
minimally detectable change is 16%.
Redelmeier et al (1997) reports that the minimum clinically significant
difference in adults with chronic lung disease is 54 metres.
Is this tool reliable and valid for the population with intellectual
disability?
Enhancing Participation in Individual and Community Life Activities Practice Guide
157
There is limited literature discussing the use of the 6MWT with people with
intellectual disability. To perform the test the people must be able to walk and
to follow simple test instructions.
Casey et al (2012) evaluated the reliability of the 6-minute walk test with a
group of 60 individuals, aged 11 to 26 years with Down syndrome. They
report that the 6MWT showed good reliability and that a person’s intellectual
function, body mass index, physical activity and heart rate affected their
walking distance. The average walking distance ranged from 395meters, 428
meters, 433metres and to 465 meters over four tests. This group of
researchers modified the 6MWT by using a person walking behind the
participant and by providing practice trials. The authors comment that practice
trials should be considered when using the 6MWT with individuals with
intellectual disability.
Nasuti et al (2013) used the 6 MWT with 18 active adults (recruited from the
Special Olympics) aged 18 -24 with intellectual disability to explore the
reliability of this test and the concurrent validity of the tool with peak oxygen
volumes. A modified 6MWT with familiarisation, 1:1 pacer and
encouragement every 15 seconds showed excellent test retest reliability (ICC.
98) and a significant relationship with VO2 peak .
A modified 6MWT (with continuous verbal encouragements) was used in a
study by Elmahgoub et al. (2012) with 61 adolescents with intellectual
disability who were overweight and obese. The 6MWT was found to be
reliable (ICC .82) and to be significantly correlated with peak VO2 max and
relative peak VO 2 , but this correlation was not strong . The smallest real
difference in the 6MWT with this group was 82.6.meters with a standard error
of 29.8 meters.
What does this tool measure?
The 6MWT can be used to evaluate functional walking capacity in a clinical
setting without the need for specialised equipment.
The 6MWT is poorly related to peak oxygen uptake in ambulatory children,
adolescents and adults with cerebral palsy (without intellectual disability) and
in adolescents with intellectual disability and is therefore not a valid measure
of cardio-respiratory fitness in this group of individuals.
Potential uses of the tool.
•
•
as an assessment tool to evaluate the person’s functional walking
capacity.
as an outcome measurement of change in walking capacity following
an intervention.
Enhancing Participation in Individual and Community Life Activities Practice Guide
158
Many of the studies in the literature have small numbers of subjects and are
lower quality studies. This lack of evidence for the measurement properties
means that therapists need to interpret results with caution.
In the paediatric literature (both with children without disability and children
with physical disabilities) and in the literature with people with intellectual
disability the 6MWT is frequently modified. Although modifications to the tool
may be necessary for specific client groups it affects the reliability of the tool.
REFERENCE
Andersson, C., Asztalos, L., Mattsson, E. (2006). Six-minute walk test in
adults with cerebral palsy. A study of reliability. Clinical Rehabilitation 20(6),
488-495.
Bartels, B., Degroot, J. F., Terwee, C. B. (2013). “The Six-Minute Walk Test in
Chronic Conditions; A systematic review of measurement properties.”
Physical Therapy 93(4), 529-541
Casey, A., Wang, X., Osterling, K. (2012). Test-Retest Reliability of the 6Minute Walk Test in Individuals with Down syndrome. Arch Phys Med
Rehabilitation 93i(11), 2068-2074.
de Groot, J. F., Takken, T., Gooskens, R. H. Schoenmakers, M. A., Vanhees,
L., & Helders, P. J. (2011). Reproducibility of maximal and submaximal
exercise testing in normal ambulatory and community ambulatory children and
adolescents with spinal bifida: Which is best for the evaluation and application
of exercise testing? Physical Therapy 91(2), 267-276.
Elmahgoub, S., Van de Veld, A., Peersman, W., Cambier, D., & Claders, P.
(2012). Reproducibility, validity and predictors of the six-minute walk test in
overweight and obese children with intellectual disability. Disability and
Rehabilitation 34(10), 846-851.
Greiger, R., Strasak, A., Treml, B., Gasser, K., Kleinsasser, A., Fisher, V.,
Geiger, H., Loeckinger, A., & Stein, J. I. (2007). Six-Minute Walk Test in
Children and Adolescents. Journal of Pediatrics 150(4), 395-399.
Guyatt, G. H., Sullivan, M. J., Thompson, P.J., Fallen, E. L., Pugsley, S. O., &
Taylor, D. W. (1985). The 6-minute walk test: A new measure of exercise
capacity inpatients with chronic heart failure. Canadian Medical Association
132(8): 919-023.
Klepper, S. E., Muir N. (2011). Reference values on the 6-Minute Walk Test for
children living in the United States. Pediatric Physical Therapy 23(1), 32-40.
Li, A. M. Yin, J., Au, J. T., So, H. K., Tsang, T., Wong, E., Fok, T. F., & Ng, P. C.
(2007). Standard reference for the 6-minute Walk Test in healthy children ages 7 to
16 years. American Journal of Respiratory Critical Care Medicine. 176(2), 174-180.
Enhancing Participation in Individual and Community Life Activities Practice Guide
159
Majnemer, A. (2012). Measure for children with developmental disabilities An ICFCY approach. London: Mac Keith Press.
Maher, C. A., Williams, M. T., & Olds, T. S. (2008). The Six-minute Walk Test for
children with Cerebral Palsy. International Journal of Rehabilitation Research. 31(2),
185-188.
Maltais, D. B., Robitaille, N. M., Dumas, F., Boucher, N., & Richards, C. L. (2012).
Measuring steady-state oxygen uptake during the 6-minute walk test in adult with
Cerebral Palsy: Feasibility and construct validity. International Journal of
Rehabilitation Research, 35(2), 181-183.
Mannum, G., Jahnsen, R., Froslie, K., Larsen, K. L., & Keller, A. (2010). Walking
ability and predictors of performance on the 6-minute Walk Test in adults with spastic
Cerebral Palsy. Developmental Medicine & Child Neurology 52(6), e126-132.
Nasuti, G., Stuart.-Hill, L., & Temple, V. A. (2013). The Six-Minute Walk Test for
adults with intellectual disability: A study of reliability and validity. Journal of
Intellectual & Developmental Disability 38(1), 31-38.
Nsenga Leunkeu, A., Shepherd, R. J., & Ahmaidi, S., (2012). Six-minute Walk Test
in children with cerebral palsy gross motor function classification system levels 1 and
2. Archives of Physical Medicine and Rehabilitation, 93(12), 2333-2339.
Pin, T., & Lewis, J. (2011) Pilot normative study of 2-Minute and 6-Minute walk tests
for typically developing children and adolescents. Kids Rehab. Westmead Children’s
Hospital.
Redelmeier, D. A., Bayoumi, A. M., Goldstein, R. S., & Guyatt, G. H. (1997).
Interpreting small differences in functional status: The Six Minute Walk test in chronic
lung disease patients. American Journal of Respiratory and Critical Care Medicine
April: 155(4), 1278-1282.
American Thoracic Society.(2002). Guidelines for the 6-minute walk test. (Statement,
A.T.S.). American Journal of Respiratory and Critical Care Medicine 166(1), 111117.
Thompson P, Beath T, Bell J, Jacobson G, Phair , Salbach NM, Wright FV (2008).
"Test-retest reliability of the 10-metre fast walk test and the 6-minute walk test in
ambulatory school-aged children with cerebral palsy." Developmental Medicine and
Child Neurology 50(5): 370-376.
Enhancing Participation in Individual and Community Life Activities Practice Guide
160
Appendix 10: Bike Riding Checklist
Person’s name: _______________
___
Date of Assessment: __________
Checklist
Comments/Measurements
Personal
Is this an activity that the person wants to do?
How motivated is the person to ride a bike?
Participation
Riding a bike with friends/ family e.g. who will
they ride the bike with?
How often will the person ride?
Environment
Bike
Seat height from ground appropriate
Is the presence of cross bar restricting
mounting access?
Stability of the bike
Seat/handle bar distance
Handle bar height
Pedal distance
Pedal position
Crank length
Base of support (seat width) adequate
Seat size and shape adequate
Brakes
Standing height- able to straddle bike with both
feet flat on ground
Enhancing Participation in Individual and Community Life Activities Practice Guide
161
Lateral trunk supports
Other
Suitable area for riding (safe area,
appropriate surface, flat area etc.)
Activities
Ability to keep feet on pedals
Work hands/arms together to steer bike
Push through pedals with feet
Dynamic sitting balance
Motor planning/problem solving skills
Ability to stand on one leg to mount
bike/level of support required for transfers
Standing balance when getting on and off
bike
Weight transfer to one leg
Weight transfer to one leg
Reach forward /upper limb control to
reach handle bars
Ability (eccentric control) to move from
standing to sitting
Body Structure and Function
Sufficient range of movement at hips,
knees and ankles for pedalling and
transfers
Adequate muscle strength of quadriceps,
hamstrings, hip flexors, hip extensors ,
dorsiflexors and plantaflexors for
pedalling
Adequate grip strength bilaterally for
holding handle bars
Presence of muscle spasm
Core stability to sit
Cardio-vascular fitness and endurance to
sustain riding
Enhancing Participation in Individual and Community Life Activities Practice Guide
162
Adequate vision
Head control in sitting
Therapist name: ______________________________
Designation: ________________________________
Enhancing Participation in Individual and Community Life Activities Practice Guide
163
12. References
Abrams, G. D., Safran, M. R. (2010). Diagnosis and management of superior
labrum anterior posterior lesions on overhead athletes. British Journal of
Sports Medicine; 44(5). 331-338.
Ada, L. & Canning, C. (2009). Common motor impairments and their impact
on activity, in Pocketbook of Neurological Physiotherapy. S. Lennon and M.
Stokes (Eds.). Sydney, Churchill Livingstone.
Anderson, F., Annett, M., & Bischof, W. F. (2010). Lean on Wii: Physical
rehabilitation with virtual reality and Wii Peripherals. Studies in Health
Technology and Informatics, 154, 229-234.
Andrew, I., Batavia, J.D. M.S., & Guy, S. (1990). Toward the development of
consumer-based criteria for the evaluation of assistive devices. Journal of
Rehabilitation research and Development. 27(4): 425-436.
Arlin, P. K. (1999). The wise teacher: A developmental model of teaching.
Theory Into Practice, 38(1), 12-17.
Australian Government Department of Health and Ageing. (2014). Physical
Activity Guidelines. Retrieved from
http://www.health.gov.au/internet/main/publishing.nsf/content/health-pubhlthstrateg-phys-act-guidelines
Australian Physiotherapy Association (APA). (1996). Physiotherapy: Your
child’s feet and legs. (Factsheet).
Bania, T., Dodd, K. J., & Taylor, N. (2011). Habitual physical activity can be
increased in people with cerebral palsy: a systematic review. Clinical
Rehabilitation, 25(4), 303-315.
Bang, M. D., & Deyle, G. D. (2000). Comparison of supervised exercise with
and without manual physical therapy for patients with shoulder impingement
syndrome. Journal of Orthopaedic Sports Physical Therapy, 30(3), 126-137.
Barr, M., & Shields, N. (2011). Identifying the barriers and facilitators to
participation in physical activity for children with Down syndrome. Journal of
Intellectual Disability Research, 55(11),1020-1033.
Bartlett, D. J., & Palisano, R. J. (2002). Determinants of motor change for
children with cerebral palsy: A consensus exercise. Physical Therapy, 82(3),
237-248.
Bergen, A. F., Presperin, J., & Tallman, T. (1990). Positioning for Function:
The Wheelchair and Other Assistive Technologies, Valhalla, NY: Valhalla
Rehabilitation Publications, Ltd.
Bjornson, K. F., Belza, B., Kartin, D., Logsdon, R., & McLaughlin, J. F. (2007).
Ambulatory physical activity performance in youth with cerebral palsy and
Enhancing Participation in Individual and Community Life Activities Practice Guide
164
youth who are developing typically, including commentary by Goodgold, S.
Physical Therapy, 87(3), 248-260.
Blauw-Hospers, C. H., Dirks, T., Hulshof, L. J., Bos, A. F., & Hadders-Algra,
M. (2011). Paediatric physical therapy in infancy: From nightmare to dream?
A two-arm randomized trial. Physical Therapy, 91(9), 1323-1338.
Blauw-Hospers, C. H., Dirks, T., Hulshof, L.J., & Hadders-Agra, M. (2010).
Development of a quantitative tool to assess the content of physical therapy
for infants. Pediatric Physical Therapy, 22(2), 189-197.
Blomqvist, S., Wester, A., Sundelin, G., & Rehn, B. (2012). Test-retest
reliability, smallest real difference and concurrent validity of six different
balance tests on young people with mild to moderate intellectual disability.
Physiotherapy, 98, 313–319.
Blundell, S. W., Shepherd, R. B., Dean, C. M., Adams, R. D., & Cahill, B. M.
(2003). Functional strength training in cerebral palsy: A pilot study of a group
circuit training class for children aged 4-8 years. Clinical Rehabilitation, 17(1),
48-57.
Boykin, R., Friedman, D., Higgins, L., Warner, J. (2010). Current concepts
review: Suprascapular neuropathy. Journal of Bone and Joint Surgery, 92:
2348-2364.
Boyle, K. L., Witt, P., & Reigger-Krugh, C. (2003). Intrarater and interrater
reliability of the Beighton and Horan Mobility Index. Journal of Athletic
Training, 38(4), 281-285.
Brantingham, J. W., Cassa, T. K., Bonnefin, D., Jensen, M., Globe, G., Hicks,
M., & Korporaal, C. (2011). Manipulative therapy for shoulder pain and
disorders: Expansion of a systematic review. Journal of Manipulative and
Physiological Therapeutics, 24(5): 314-346.
Bruckner, J., & Herge, E. A. (2003). Assessing the risk of falls in elders with
mental retardation and developmental disabilities. Topics in Geriatric
Rehabilitation, 19(3), 206-211.
Bundy, A., Brentnall, J., Hemsley, B., & Marshall, E. (2008). Therapy services
in the disability sector: Literature review. Sydney, NSW: NSW Department of
Ageing, Disability and Home Care.
Cahill, S., Stancliffe, R. J., Clemson, L., & Durvasala, S. (2014).
Reconstructing the fall: Individual, behavioural and contextual factors
associated with falls in individuals with intellectual disability. Journal of
Intellectual Disability Research, 58(4), 321-332.
Campbell, S. K., Palisano, R. J., & Orlin, M. (2006). Physical Therapy For Children,
St. (4th Ed. ). Louis, Missouri, USA: Sanders Elsevier.
Calders, O., Elmahgoub, S., de Mettelinge, T. E., Vandenbroeck, C., et al.,
(2011). Effects of combined exercise training on physical and metabolic
Enhancing Participation in Individual and Community Life Activities Practice Guide
165
fitness in adults with intellectual disability: A controlled trial. Clinical
Rehabilitation, 25(12), 1097-1108.
Capodaglio, P., Cimolin, V., Vismara, L., Grugni, G., Parisio, C., Sibilia, O., &
Galli, M. (2011). Postural adaptations to long-term training in Prader-Willi
patients. Journal Of Neuroengineering And Rehabilitation, 8, 26-26. doi:
10.1186/1743-0003-8-26
Carmeli, E., Bar-Yossef, T., Ariav, C., Paz, R., Sabbag, H., & Levy, R. (2008).
Sensorimotor impairments and strategies in adults with intellectual disabilities.
Motor Control, 12(4), 348-361.
Carr, J. H. (2010). Neurological rehabilitation: Optimising motor performance.
(2nd ed.). Edinburgh; New York: Churchill Livingstone.
Carr, J. H., & Shepherd, R. B. (1987). A motor relearning programme for
stroke. Hawaii, USA: Aspen Publishers.
Carter, N. D., Khan, K. M., McKay, H. A., Petit, M. A., Waterman, C.,
Heinonen, A., & Flicker, L. (2002). Community-based exercise program
reduces risk factors for falls in 65- to 75-year-old women with osteoporosis:
Randomized controlled trial. Canadian Medical Association Journal, 167(9),
997-1004.
Caulton, J., Ward, K., Alsop, C., Dunn, G., Adams, J., & Mughal, M. (2004). A
randomised controlled trial of standing programme on bone mineral density in
non-ambulant children with cerebral palsy. Archives of Disease in Childhood,
89(2), 131-135.
Centre for Developmental Disability Studies (CDDS). (2003). Guidelines for
the management of mobility and related issues for people with intellectual
disabilities and limited mobility. Sydney, NSW: NSW Department of Ageing,
Disability and Home Care.
Centre for Health Advancement, NSW Department of Health. (2011). Falls Prevention of Falls and Harm from Falls among Older People: 2011-2015.
Policy directive, Doc No.: PD2011_029. Published 30 May 2011. Retrieved
from http://www0.health.nsw.gov.au/policies/pd/2011/PD2011_029.html
Cerga-Pashojo, A., Lowery, D., Bhattacharya, R., Griffin, M., Illiffe, S., Lee, J., . . .
Warner, J. (2010). Evaluation exercise on individuals with dementia and their
carers: A randomised controlled trial. Trials, 11(53), 1-11.
Chanias, A. K., Reid, G., & Hoover, M. L. (1998). Exercise effects on healthrelated physical fitness of individuals with an intellectual disability: A metaanalysis. Adapted Physical Activity Quarterly, 15(2), 119-140.
Chiba, Y., Shimada, A., Yoshida, F., Keino, H., Hasegawa, M., Ikari, H., . . .
Hosokawa, M. (2009). Risk of fall for individuals with intellectual disability.
American Journal on Intellectual & Developmental Disabilities, 114(4), 225236.
Enhancing Participation in Individual and Community Life Activities Practice Guide
166
Christofoletti, G., Oliani, M. M., Gobbi, S., Stella, F., Gobbi, L. T. B., &
Canineu, P. R. (2008). A controlled clinical trial on the effects of motor
intervention on balance and cognition in institutionalized elderly patients with
dementia. Clinical Rehabilitation, 22(7), 618-626.
Clark, R. A., Bryant, A. L., Pua, Y., McCrory, P., Bennell, K., & Hunt, M.
(2010). Validity and reliability of the Nintendo Wii Balance Board for
assessment of standing balance. Gait and Posture, 31(3), 307-310.
Cleaver, S., Oueliette-Kuntz, H., & Hunter, D. (2009). The prevalence and
severity of physical mobility limitations in older adults with intellectual
disabilities. Journal of Applied Research in Intellectual Disabilities, 22(5), 477486.
Connolly, B. H., & Montgomery, P. (2005). Therapeutic exercise in
developmental exercise. Thorofare, N.J, USE: Slack Incorporated.
Costigan, F. A., & Light, J. (2011). Functional seating for school-aged children
with cerebral palsy: An evidenced-based tutorial. Language, Speech, and
Hearing Services in Schools, 42(2), 223-236.
Cox, C. R., Clemson, L., Stancliffe, R. J., Durvasula, S., & Sherrington, C.
(2010). Incidence of and risk factors for falls among adults with an intellectual
disability. Journal of Intellectual Disability Research, 54(12), 1045-1057.
Cubukcu, S., Karsli, B., Alimoglu, M. K. (2004). Meralgia paresthetica and low
back pain. Journal of Back and Musculoskeletal Rehabilitation, 17 (3-4), 135139.
Dahm, K. T., Brugberg, K. G., Jamtvedt, G., Hagen, K. B. (2010). Advice to
rest in bed versus advice to stay active for acute low back pain and sciatica.
Cochrane Database of Systematic Reviews. 16(6):CD007612.
Damiano, D. L., & DeJong, S. L. (2009). A systematic review of the
effectiveness of treadmill training and body weight support in pediatric
rehabilitation. Journal Of Neurological Physical Therapy (JNPT), 33(1), 27-44.
doi: 10.1097/NPT.0b013e31819800e2.
Darrah, J., Piper, M., Watt, M-J. (1998). Assessment of gross motor skills of
at-risk infants: Predictive validity of the Alberta Infant Motor Scale.
Developmental Medicine & Child Neurology, 40(7), 485–491.
Davies, P. L., & Gavin, W. J. (1994). Comparison of individual and
group/consultation treatment methods for preschool children with
developmental delays. American Journal of Occupational Therapy, 48(2),
155-161.
Debuse, D., Chandler, C., & Gibb, C. (2005). An exploration of German and
British physiotherapists' views on the effects of hippotherapy and their
measurement. Physiotherapy, Theory and Practice, 21(4): 219-242.
Enhancing Participation in Individual and Community Life Activities Practice Guide
167
Debuse, D., Gibb, C., & Chandler, C. (2009). Effects of hippotherapy on
people with cerebral palsy from the users' perspective: A qualitative study.
Physiotherapy Theory and Practice, 25(3), 174-192.
Devereaux, J., Pack, M., Piccott, V., Whitten, K., Basset, F., & Rohr, L. E.
(2012). Comparison of rates of perceived exertion between active video
games and traditional exercise. International Sportmed Journal, 13(3), 133140.
Dimitrijevic, L., Aleksandrovic, M., Madic, D., Okicic, T., Radovanovic, D., &
Daly, D. (2012). The effect of aquatic intervention on the gross motor function
and aquatic skills in children with Cerebral Palsy. Journal of Human Kinetics,
32, 167-174.
Dirks, T., Blauw-Hospers, C. H., Hulshof, L J., & Hadders-Algra, M. (2011).
Differences between the family-centered “COPCA” program and traditional
infant physical therapy based on neurodevelopmental treatment principles.
Physical Therapy, 91(9),1303-1322.
Dixon-Ibarra, A., Lee, M., & Dugala, A. (2013). Physical activity and sedentary
behaviour in older adults with intellectual disabilities: A comparative study.
Adapted Physical Activity Quarterly, 30(1), 1-19.
Dodd, K. J., & Shields, N. (2005). A systematic review of the outcomes of
cardiovascular exercise programs for people with Down syndrome. Archives
of Physical Medicine and Rehabilitation, 86, 2051-2058.
Doody, C., Markey, K., & Doody, O. (2012). Health of ageing people with
intellectual disability and the role of the nurse in Ireland. Journal of Intellectual
Disabilities, 16(4), 275-286.
Driscoll, S. W., & Skinner, J. (2008). Musculoskeletal complications of
neuromuscular disease in children. Physical Medicine and Rehabilitation
Clinics of North America, 19(1),163-195.
Du Plessis, M., Eksteen, E., Jenneker, A., Kriel, E., Mentoor, C., Stucky, T.,
Morris, LD. (2011). The Effectiveness of continuous passive motion on range
of motion, pain and muscle strength following rotator cuff repair: a systematic
review. Clinical Rehabilitation, 25(4), 291-302.
Enkalaar, L., Smulders, E., van Schrojenstein Lantman-de Valk, H., Geurts, A.
C. H., & Weerdesteyn, V. ( 2012). A review of balance and gait capacities in
relation to falls in persons with intellectual disability. Research in Intellectual
Disabilities, 24(6), 508-517.
Faber, E., Kuiper, J. L., Burdorf, A., Miedema, H. S., Verhaar, J. A. (2006).
Treatment of impingement syndrome: A systematic review of the effects on
functional limitations and return to work. Journal of Occupational
Rehabilitation, 16(1), 7-25.
Ferrari, J., Parslow, C., Lim, E., & Hayward, A. (2005). Joint hypermobility:
The use of a new assessment tool used to measure lower limb hypermobility.
Paediatric Rheumatology, 23(3), 413-420.
Enhancing Participation in Individual and Community Life Activities Practice Guide
168
Finlayson, J., Turner, A., & Granat, M. H. (2011). Measuring the actual levels
and patterns of physical activity/inactivity of adults with intellectual disabilities.
Journal of Applied Research in Intellectual Disabilities, 24(6), 508-517.
Finley, M, Rodgers, M. (2004). Prevalence and identification of shoulder
pathology in athletic and non athletic wheelchair users with shoulder pain: a
pilot study. Journal of Rehabilitation Research and Development, 4: 395-402.
Foster, R. L., O’Driscoll, M. (2010). Current concepts in the conservative
management of the frozen shoulder. Physical Therapy Reviews 15(5): 399404.
Frey, G. C., Buchanan, A. M., & Rosser Sandt, D. D. (2005). "I'd rather watch
TV": An Examination of Physical Activity in Adults with Mental Retardation.
Mental Retardation, 43(4), 241-254.
Frey, G. C., Stanish, H. I., & Temple, V. A. (2008). Physical activity of youth
with intellectual disability: Review and research agenda. Adapted Physical
Activity Quarterly, 25(2), 95-117.
Ganz, D. A., Bao, Y., Shekelle, P. G., & Rubenstein, L. Z. (2007). Will my
patient fall? The Journal Of The American Medical Association, 297(1), 77-86.
Getz, M., Hutzler, Y., & Vermeer, A. (2006). Effects of aquatic interventions in
children with neuromotor impairments: A systematic review of the literature.
Clinical Rehabilitation. 20(11), 927-936.
Getz, M., Hutzler, Y., & Vermeer, A. (2007). The effects of aquatic intervention
on perceived physical competence and social acceptance in children with
Cerebral Palsy. European Journal of Special Needs Education, 22(2), 217228.
Geytenbeek, J. (2002). Evidence for effective hydrotherapy: Systematic
review. Physiotherapy, 88(9), 514-529.
Gibson, N., Graham, H., & Love, S. (2007). Botulinum toxin A in the
management of focal muscle overactivity in children with cerebral palsy.
Disability and Rehabilitation, 29(23), 1812-1822.
Gorter, J. W., & Currie, S. J. (2011). Aquatic exercise programs for children
and adolescents with cerebral palsy: What do we know and where do we go/
International Journal of Pediatrics, Article ID: 712165, 1-7.
Gough, M. (2007). Serial casting in cerebral palsy: Panacea, placebo, or
peril? Developmental medicine and child neurology, 49(10), 725.
Graham, A., & Reid, G. (2000). Physical fitness of adults with an intellectual
disability: A 13-Year follow-up study. Research Quarterly for Exercise and
Sport, 71(2), 152-161.
Green, S., Buchbinder, R., & Hetrick, S. E. (2003). Physiotherapy
interventions for shoulder pain. Cochrane Database of Systematic Reviews
(2):CD004016.
Enhancing Participation in Individual and Community Life Activities Practice Guide
169
Gudjonsdottir, B., & Stemmons Mercer, V. (2002). Effects of a dynamic versus
a static prone stander on bone mineral density and behavior in four children
with severe Cerebral Palsy. Pediatric Physical Therapy: The Official
Publication Of The Section On Pediatrics Of The American Physical Therapy
Association, 14(1), 38-46.
Gupta, S., Rao, B. K., & Senthil, K. D. (2010). Effect of strength and balance
training in children with Down’s Syndrome: A randomised controlled trial.
Journal of Clinical Rehabilitation 25(5), 425-432.
Hale, L., Bray, A., & Littman, A. (2007). Assessing the balance capacities of
people with profound intellectual disabilities who have experienced a fall.
Journal of Intellectual Disability Research, 51(4), 260-268.
Hale, L., Croker, A., & Tasker, D. (2009). The Expansion of CommunityBased Physiotherapy. In J. Higgs, M. Smith, G. Webb, M. Skinner & A. Croker
(Eds.), Contexts of Physiotherapy Practice. Sydney: Churchill Livingstone.
Hale, L.,& Donovan, K. (2014). A video-based balance measure for people
with intellectual disability. Journal of Intellectual & Developmental Disability,
39(2), 206-213.
Harrison, J., & Larsen, J. (2007). Aquatic physiotherapy for disability and
paediatrics: A workshop for physiotherapists, hydrotherapy consulting and
training. Contact authors:
[email protected]@hydrotherapybrisbane.com.au
Haugh, A., Pandyan, A., & Johnson, G. (2006). A systematic review of the
Tardieu Scale for the measurement of spasticity. Disability and Rehabilitation,
28(15), 899-907.
Haveman, M. J., Heller, T., Lee, L.A., Maaskant, M. A., Shooshtari, S,. &
Strydon, A. (2009). Report on the state of science on health risks and ageing
in people with intellectual disabilities: Rehabilitation sciences. Dortmund:
University of Dortmund.
Hawkins, A., & Look, R. (2006). Levels of engagement and barriers to
physical activity in a population of adults with learning disabilities. British
Journal of Learning Disabilities, 34(4), 220-226.
Hickman, R., Westcott McCoy, S. W., Long, T., Raugh, M. J. (2011). Applying
contemporary developmental and movement sciences theories and evidence
to early intervention practice. Infants & Young Children, 24(1), 29-41.
Hilgenkamp, T. I. M., Reis, D., van Wijck, R., & Evenhuis, H. M. (2012).
Physical activity levels in older adults with intellectual disabilities are
extremely low. Research in Developmental Disabilities, 33(2), 477-483.
Hilgenkamp, T. I. M., van Wijck, R., & Evenhuis, H. M. (2012). Feasibility and
reliability of physical fitness tests in older adults with intellectual disability: A
pilot study. Journal of Intellectual and Developmental Disability, 37(2), 158162.
Enhancing Participation in Individual and Community Life Activities Practice Guide
170
Hinckson, E. A., & Curtis, A. (2013). Measuring physical activity in children
and youth living with intellectual disabilities: A systematic review. Research in
Developmental Disabilities, 34(1), 72-86.
Hocking, J. A., Pearson, A., & McNeil, J. (2014). Physiotherapy to improve
gross motor skills in people with intellectual disability: a systematic review
protocol. The JBI Database of Systematic Reviews and Implementation
Reports, [S.l.], 11(12), 94-108.
Hof, A. L. (2001). Changes in muscles and tendons due to neural motor
disorders: Implications for therapeutic intervention. Neural Plasticity, 8(1-2),
71-81.
Howe, J. A., Inness, E. L., Venturini, A., Williams, J. I., & Verrier, M. C. (2006).
The Community Balance and Mobility Scale: A balance measure for
individuals with traumatic brain injury. Clinical Rehabilitation, 20(10), 885-895.
Hsieh, K., Heller, T., & Miller, A. B. (2003). Risk factors for injuries and falls
among adults with developmental disabilities. Journal of Intellectual Disability
Research, 45(1), 76-82.
Hsu, J. K., Thibodeau, R., Wong, S. J., Zukiwsky, D., Cecile, S., & Walton, D.
M. (2011). A "Wii" bit of fun: The effects of adding Nintendo Wii® Bowling to a
standard exercise regimen for residents of long-term care with upper
extremity dysfunction. Physiotherapy Theory and Practice, 27(3), 185-193.
Hung, W. W., & Pang, M. Y. (2010). Effects of group-based versus individualbased exercise training on motor performance in children with developmental
coordination disorder: a randomized controlled study. Journal of Rehabilitation
Medicine, 42(2), 122-128.
Jankowicz-Szymanska, A., Mikolajczyk, E., & Wojtanowski, W. (2012). The
effect of physical training on static balance in young people with intellectual
disability. Research in Developmental Disabilities, 33(2), 675-681.
Jeglinski, I., Surakka, J., Carlberg, E. B., & Autti-Rämö, I. (2010). Evidence on
physiotherapeutic interventions for adults with cerebral palsy is sparse: A
systematic review. Journal of Clinical Rehabilitation. 24(9), 771-788.
Kaux, J. F., Forthomme, B., Le Goff, C., Crielaard, J. M., & Croisier, J. L.
(2011). Current opinions on tendinopathy. Journal of Sports Science and
Medicine, 10(2), 238-253.
Kelly, M., & Darrah, J. (2005). Aquatic exercise for children with Cerebral
Palsy. Developmental Medicine and Child Neurology, 47(12), 838-842.
Lance, J. & Burke, D. (1974). Mechanisms of spasticity. Archives of Physical
Medicine and Rehabilitation, 55(8): 332-337.
Lange, B., Flynn, S., & Rizzo, A. (2009). Initial usability assessment of off-theshelf video game consoles for clinical game-based motor rehabilitation.
Physical Therapy Reviews, 14(5), 355-363.
Enhancing Participation in Individual and Community Life Activities Practice Guide
171
Lante, K. (2007). Development of a proxy response instrument to measure the
physical activity behaviours of adults with an intellectual disability. Thesis
retrieved from https://researchbank.rmit.edu.au/view/rmit:6363.
Lante, K. A., Walkley, J. W., Gamble, M., & Vassos, M. V. (2011). An initial
evaluation of a long-term, sustainable, integrated community-based physical
activity program for adults with intellectual disability. Journal of Intellectual
Developmental Disability, 36(3), 197-206.
Latash, M. L. (2012). The bliss of motor abundance. Experiemental Brain
Research, 217(1), 1-5.
Law, J., & Camilleri, B. (2007). Dynamic assessment and its application to
children with speech and language learning difficulties. International Journal
of Speech-Language Pathology, 9(4), 271–272.
Lawlor, B. (2002). Managing behavioural and psychological symptoms in
dementia. The British Journal of Psychiatry, 181(6), 463-465.
Lee, I. M., Shiroma, E., Lobelo, F., Puska, P., Blair, S., & Katzmarzyk, P.
(2012). Effect of physical inactivity on major non-communicable diseases
worldwide: an analysis of burden of disease and life expectancy. Lancet, 380,
219-229.
Lee, L., Rianto, J., Raykar, V., Creasey, H., Waite, L., Berry, A., . . .
Naganathan, V. (2011). Health and functional status of adults with intellectual
disability referred to the specialist health care setting: a five-year experience.
International Journal Of Family Medicine, 312492-312492.
Lin, H. C., & Wuang, Y. P. (2012). Strength and agility training in adolescents
with Down syndrome: A randomized controlled trial. Research in
Developmental Disabilities, 33(6), 2236-2244.
Logan, S. W., Robinson, L. E., Wilson, A. E., & Lucas, W. A. (2012). Getting
the fundamentals of movement: A meta-analysis of the effectiveness of motor
skill interventions in children. Child Care, Health & Development, 38(3), 305315.
Lotan, M., Yalon-Chamovitz, S., & Weiss, P. L. (2010). Virtual reality as
means to improve physical fitness of individuals at a severe level of
intellectual and developmental disability. Research in Developmental
Disabilities, 31(4), 869-874.
Love, S. (2007). Better description of spastic Cerebral Palsy for reliable
classification. Developmental Medicine and Child Neurology, 49, 24-25.
Mahy, J., Shields, N., Taylor, N. F., Dodd, K. J. (2010). Identifying facilitators
and barriers to physical activity for adults with Down syndrome. Journal of
Intellectual Disability Research, 54(9), 795-805.
Martin, K., Kaltenmark, T., Lewallen, A., Smith, C. & Yoshida, A. (2007),
Clinical characteristics of hypotonia: A survey of pediatric physical and
occupational therapists. Pediatric Physical Therapy: The Official Publication
Enhancing Participation in Individual and Community Life Activities Practice Guide
172
Of The Section On Pediatrics Of The American Physical Therapy Association,
9, 217-226.
McDonald, R., Surtees, R., Wirz, S. (2004). The International Classification of
Functioning, Disability and Health provides a model for adaptive seating
interventions for children with Cerebral Palsy. The British Journal of
Occupational Therapy, 67, 293-302.
McGrother, C. W., Bhaumik, S., Thorp, C. F., Hauck, A., Brandford, D., &
Watson, J. M. (2006). Epilepsy in adults with intellectual disabilities:
Prevalence, associations and service implications. Seizure, 15(6), 376-386.
McLaren, A. N., LaMantia, M. A., & Callahan, C. M. (2013). Systematic review
of nonpharmacologic interventions to delay funtional decline in communitydwelling patients with dementia. Aging & Mental Health, 17(6), 655-666.
McWilliams, R. A., Casey, A. M., Sims, J. (2009). The routines-based
interview: A method for gathering information and assessing needs. Infants &
Young Children, 22:3, 224-233.
Meade, V. (1989). Partners in movement: A family approach to paediatric
kinesiology. USA: Gilberg and Gilberg. Available
through www.vickiemeade.com
Melville, C. A., Hamilton, S., Hankey, C. R., Miller, S., & Boyle, S. (2007). The
prevalence and determinants of obesity in adults with intellectual disabilities.
Obesity review, 8(3), 223-230.
Messent, P. R., & Cooke, C. B. (1998). Physical activity, exercise and health
of adults with mild and moderate learning disabilities. British Journal of
Learning Disabilities, 26(1), 17-22.
Messent, P. R., Cooke, C. B., & Long, J. (1999). Primary and secondary
barriers to physically active healthy lifestyles for adults with learning
disabilities. Disability and Rehabilitation, 21(9), 409-419.
Michalski, A., Glazebrook, C. M., Martin, A. J., Wong, W. W. N., Kim, A. J. W.,
Moody, K. D., Zabjek, K. F. (2012). Assessment of the postural control
strategies used to play two Wii Fit™ videogames. Gait & Posture, 36(3), 449453.
Mik, G., Gholve, P. A., Scher, D. M., Widmann, R. F., & Green, D. W. (2008).
Down Syndrome: Orthopaedic Issues. Current Opinion in Paediatrics, 20(1),
30-36.
Nouraei, S. A., Anand, B., & O’Neill, K. S. (2007). A novel approach to the
diagnosis and management of meralgia paresthetica. Neurosurgery, 60(4),
696-700
Novak, I., Cusick, A., & Lannin, N. (2009). Occupational therapy home
programs for Cerebral Palsy: Double-blind, randomized, controlled trial.
Pediatrics, 124(4), 606-614.
Enhancing Participation in Individual and Community Life Activities Practice Guide
173
Onari, K., Kondo, S., Mihara, H., & Iwamura, Y. (2002). Combined anteriorposterior fusion for cervical spondylotic myelopathy in patients with athetoid
cerebral palsy. Journal of Neurosurgery, 97(1), 13-19.
Oppewal, A., Higenkamp, T. I., van Wijck, R., Schoufour, J. D., & Enenhuis,
H. M. (2014). The predictive value of physical fitness for falls in older adults
with intellectual disabilities. Research in Developmental Disabilities, 35(6),
1317-1325.
Orlin, M. N., Cicirello, N. A., O'Donnell, A. E., & Doty, A. K. (2014). The
continuum of care for individuals with lifelong disabilities: Role of the physical
therapist. Physical Therapy, 9(7), 1044-1053.
Ostensjø, S., Carlberg, E. B., & Vøllestad, N. K. (2004). Motor impairments in
young children with Cerebral Palsy: Relationship to gross motor function and
everyday activities. Developmental Medicine & Child Neurology, 46(9): 580–
589.
Pacey, V. (2008). Generalised joint hypermobility. Paper presented at the
Australian Physiotherapy Association Televideo Conference.
Palisano, R. J., Beth, L., Tieman, B. L., Walter, S. D., Bartlett, D. J.,
Rosenbaum, P. L., Russell, D., & Hanna, S. E. (2003). Effect of environmental
setting on mobility methods of children with Cerebral Palsy. Developmental
Medicine & Child Neurology, 45(2), 113–120.
Pasch, M., Bianchi-Berthouze, N., vanDijk, B., & Nijholt, A. (2009). Movementbased sports video games: Investigating motivation and gaming experience.
Entertainment Computing, 1, 49-61.
Patrick, E. & Ada, L. (2006). The Tardieu Scale differentiates contracture from
spasticity whereas the Ashworth Scale is confounded by it. Clinical
Rehabilitation, 20(2), 173-182.
Pearson, K., & Gordon, J. (2001). Principles of Neuroscience (4th ed.). New
York: McGraw-Hill.
Peterson, J. J., Janz, K. F., & Lowe, J. B. (2008). Physical activity among
adults with intellectual disabilities living in community settings. Preventive
Medicine, 47(1), 101-106.
Pitetti, K., Baynard, T., & Agiovlasitis, S. (2013). Children and adolescents
with Down syndrome: Physical fitness and physical activity. Journal of Sport
and Health Science, 2(1), 47-57.
Polgui, M., Jedrzejewski, K. S., & Topoi, M. (2013). Sexual dimorphism of the
suprascapular notch - morphometric study. Neurosurgery, 60(4), 696-700.
Porter, C., Michael, S., & Kirkwood, C. (2007). Patterns of postural deformity
in non-ambulant people with cerebral palsy: What is the relationship between
the direction of scoliosis, direction of pelvic obliquity, direction of windswept
hip deformity and side of hip dislocation? Clinical Rehabilitation, 21(12), 187196.
Enhancing Participation in Individual and Community Life Activities Practice Guide
174
Povlsen, B., Belzberg, A., Hansson, T., Dorsi, M. (2010). Treatment for
Thoracic outlet Syndrome. Cochrane Database of Systematic Reviews.
(1):CD007218.
Prisby, R., Lafage-Proust, M. H., Malaval, L., Belli, A., & Vico, L. (2008).
Effects of whole-body vibration on the skeleton and other organ systems in
man and animal models: What we know and what we need to know. Ageing
Research Reviews, 7(4), 319-329.
Ratliffe, K., Sanekane, C. (2009). Equine-assisted therapy: Complementary
medicine or not? Australian Journal of Outdoor Education, 13(2), 33-43.
Riddle, D. L., & Stratford, P. W. (1999). Interpreting validity indexes for
diagnostic tests: an illustration using the Berg Balance Test. Physical
Therapy, 79(10), 939-948.
Rimmer, J. H., Chen, M. D., McCubbin, J. A., Drum, C., & Peterson. J. (2010).
Exercise intervention research on persons with disabilities. What we know
and where we need to go. American Journal of Physical Medicine and
Rehabilitation, 89, 249–263.
Rimmer, J. H., Riley, B., Wang, E., Rauworth, A., & Jurkowski, J. (2004).
Physical activity participation among persons with disabilities. American
Journal of Preventive Medicine, 26(5), 419-425.
Robertson, J., Emerson, E., Gregory, N., Hatto, C., Turner, S., Kessissoglou,
S., & Hallam, A. (2000). Lifestyle related risk factors for poor health in
residential settings for people with intellectual disabilities. Research in
Developmental Disabilities, 21(6), 469-486.
Rodda, J., & Graham, H. (2001). Classification of gait patterns in spastic
hemiplegia and spastic diplegia: A basis for a management algorithm.
European Journal Of Neurology: The Official Journal Of The European
Federation Of Neurological Societies, 8(5), 598-608.
Rosenbaum, P., Walter, S., Hanna, S., Palisano, R., Russell, D., Raina, P.,
Wood, E., Bartlett, D., & Galuppi, B. (2002). Prognosis for gross motor
function in Cerebral Palsy: Creation of motor development curves. Journal of
the American Medical Association, 288(11), 1357-1366.
Rutz, E., Tirosh, O., Thomason, P., Barg, A., & Graham, H.K. (2012). Stability
of the Gross Motor Classification System after single-event multilevel surgery
in children with cerebral palsy. Developmental Medicine and Child Neurology
54(12), 1109-1113.
Sanger, T., Delgado, M. R., Gaebler-Spira, D., Hallett, M., & Mink, J. W.
(2013). Classification and definition of disorders causing hypertonia in
childhood. Pediatrics, 111(1), 89-87.
Sauve, K., & Bartlett, D. (2010). Dynamic systems theory: A framework for
exploring readiness to change in children with cerebral palsy. CanChild
Centre for Childhood Disability Research. McMaster University. Retrieved
from
Enhancing Participation in Individual and Community Life Activities Practice Guide
175
http://www.canchild.ca/en/canchildresources/resources/kc_dynamic_systems
_theory.pdf
Scott, V., Votova, K., Scanlan, A., & Close, J. (2007). Multifactorial and
functional mobility assessment tools for fall risk among older adults in
community, home-support, long-term and acute care settings. Age And
Ageing, 36(2), 130-139.
Sherrard, J, Tonge, B. J., & Ozanne-Smith, J. (2001). Injury in young people
with intellectual disability: Descriptive epidemiology. Injury Prevention (British
Medical Journal). 7, 56-61.
Shields, N., & Taylor, N. F. (2010). A student-led progressive resistance
training program increases lower limb muscle strength in adolescents with
Down syndrome: a randomised controlled trial. Journal of Physiotherapy,
56(3), 187-193.
Shields, N., Dodd, K., & Abblitt, C. (2009). Do children with Down syndrome
perform sufficient physical activity to maintain good health? A pilot study.
Adapted Physical Activity Quarterly, 26(4), 307-320..
Shumway-Cook, A., Brauer, S., & Woollacott, M. (2000). Predicting the
probability for falls in community-dwelling older adults using the Timed Up &
Go Test. Physical Therapy, 80(9), 896-903.
Smulders, E., Enkelaar, L. Schoon, Y., Geurts, A. C., Van Schrojenstein
Lantman-deValk, H., & Weerdesteyn. V. (2013). Falls prevention in persons
with intellectual disabilities: Development, implementation and process
evaluation of a tailored multifactorial fall risk assessment and intervention
strategy. Research in Developmental Disabilities, 34, 2788-2795.
Sommerville, H., & Morgan, J. (2009). Spinal Cord Complications: Information
for People with Cerebral Palsy. In Westmead Hospital and The Spastic Centre
of NSW (Ed.).
Speechley, M. (2011). Knowledge translation for falls prevention: The view
from Canada. Journal of Safety Research, 42:6, 453-459.
Stanish, H. I. (2004). Accuracy of pedometers and walking activity in adults
with mental retardation. Adapted Physical Activity Quarterly, 21(2), 167-179.
Stanish, H. I., & Frey, G. C. (2008). Promotion of physical activity in
individuals with intellectual disability. Salud Pública de México, 50(2), S178S184.
Stanton, L., & Coetzee, R. H. (2004). Down's Syndrome and dementia.
Advances in Psychiatric Treatment, 10, 50-58.
Steinbok, P. (2006). Selection of treatment modalities in children with spastic
Cerebral Palsy. Neurosurg. Focus, 21(2), 1-8.
Enhancing Participation in Individual and Community Life Activities Practice Guide
176
Stergiou, N., Harbourne, R. T., & Cavanaugh, J. T. (2006). Optimal movement
variability: A new theoretical perspective for neurologic physical therapy.
Journal of Neurologic Physical Therapy, 30(3), 120-129.
Stricker, S. J., Stricker, M. D., & Sama, A. (2001). Assessment of angulation
and torsion of lower limbs in children. International Paediatrics, 16(3), 138143.
Strydom, A., Shooshtari, S., Lee, L., Raykar, V., Torr, J., Tsiouris, J.,
Maaskant, M. (2010). Dementia in older adults with intellectual disabilities:
Epidemiology, presentation, and diagnosis. Journal of Policy and Practice in
Intellectual Disabilities, 7(2), 96-110.
Temple, V. A. (2007). Barriers, enjoyment, and preference for physical activity
among adults with intellectual disability. International Journal of Rehabilitation
Research, 30(4), 281-287.
Temple, V. A. (2009). Factors associated with high levels of physical activity
among adults with intellectual disability. International Journal of Rehabilitation
Research, 32(1), 89-92.
Temple, V A, Walkley J.W. (2003) Physical activity of adults with intellectual
disability. Journal of Intellectual disability and Developmental Disability 28,
342-352.
Temple, V. A., Stanish, H. I., & Frey, G. C. (2006). Physical activity of adults
with mental retardation: Review and research needs. American Journal of
Health Promotion, 21, 2-12.
Thomason, P., Selber, P., & Graham, H. K. (2013). Single event multilevel
surgery in children with bilateral spastic cerebral palsy: A 5 year prospective
cohort study. Gait and Posture 37(1), 23-28
Tieman, B., Palisano, R. J., Gracely, E. J., & Rosenbaum, P. L. (2007).
Variability in mobility of children with Cerebral Palsy. Pediatric Physical
Therapy, 19, 180-187.
Trivette, C. (unpublished), cited by Dunst & Moore, ‘Family-centred practice’
presentations at Early Childhood Intervention Australia (ECIA) (Victoria)
Seminar, 3 August 2010.
Trost, S. G., Owen, N., Bauman, A. E., Sallis, J. F., & Brown, W. (2002).
Correlates of adults' participation in physical activity: Review and update.
Medical Science and Sports Exercise, 34(12),1996-2001.
Tsirikos, A., Change, W. N., Shah, S. A., & Miller, F. (2003). Acquired
atlantoaxial instability in children with spastic cerebral palsy. Journal of
Paediatric Orthopaedics, 23(3), 335-341.
Tsirikos, A., & Spielmann. (2007). Spine: Spinal deformity in paediatric
patients with Cerebral Palsy. Current Orthopaedics, 21(2), 122-134.
Ulrich, D. A., Burghardt, A. R., Lloyd, M., Tiernan, C., & Hornyak, J. E. (2011).
Physical activity benefits of learning to ride a two-wheel bicycle for children
Enhancing Participation in Individual and Community Life Activities Practice Guide
177
with Down syndrome: A randomized trial. Physical Therapy, 91(10), 14631477.
United Nations. (1986). Charter adopted at an international conference on
health promotion: The move towards a new public health. Paper presented at
the First International Conference in Health Promotion Ottawa. November, 1721, 1986, Ottawa, Ontario, Canada. WHO/HPR/HEP/95.1 Retrieved from
http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index3.ht
ml
United Nations Enable. (2006). Convention on the rights of persons with
disabilities. Retrieved from http://www.un.org/disabilities/default.asp?id=150
US National Library of Medicine. (2013). Hypotonia. From MedlinePlus
https://www.nlm.nih.gov/medlineplus/ency/article/003298.htm
Vattanaslip, W., L. Ada. (2000). Contribution of thixotropy, spasticity, and
contracture to ankle stiffness after stroke. Journal of Neurology, Neurosurgery
and Psychiatry, 69(1), 34-39.
Vereijken, B. (2010). The complexity of childhood development: Variability in
perspective. Physical Therapy, 90:12, 1850-1859.
Verschuren, O., Ketelaar, M., Gorter, J. W., Helders, P. J. M., et al. (2007).
Exercise traing program in children and adolescents with cerebral palsy: A
randomised controlled trial. Archives of Pediatric Adolescent Medicine,
161(11), 1075-1081.
Vuijk, P.J., Hartman, E., Scherder, E. and Visscher, C. (2010). Motor
performance of children with mild intellectual disability and borderline
intellectual functioning. Journal of Intellectual Disability Research, 54:11, 955965.
Wagemans, A. M. A., & Cluitmans, J. J. M. (2006). Falls and fractures: A
major health risk for adults with intellectual disabilities in residential settings.
Journal of Policy and Practice in Intellectual Disabilities, 3(2), 136-138.
Waninge, A., van Wijck, R., Steenbergen, B., & van der Schans, C. P. (2011).
Feasability and reliability of the modified Berg Balance Scale in persons with
severe intellectual and visual disabilities. Journal of Intellectual and
Development Disability Research, 55(3), 292-301.
Westendorp, M., Houwen, S., Hartman, E., & Visscher, C. (2011). Are gross
motor skills and sports participation related in children with intellectual
disabilities? Research in Developmental Disabilities, 32:3, 1147-1153.
Wilson, L. L., & Dunst, C. J. (2005). Checklist for assessing adherence to
family-centered practices. CASEtools: Instruments and procedures for
implementing early childhood and family support practices, 1(1). Retrieved
from http://w.fippcase.org/casetools/casetools_vol1_no1.pdf
Woolf, A. D., & Pfleger, B. (2003). Burden of major musculoskeletal
conditions. Bulletin of the World Health Organization, 81(9), 646-656.
Enhancing Participation in Individual and Community Life Activities Practice Guide
178
World Health Organization (WHO). (2003). Prevention and management of
osteoporosis. WHO Technical Report Series 921. Geneva: WHO.
World Health Organization (WHO). (2001). The International Classification of
World Functioning, Disability and Health. Geneva: WHO.
Wright, C., Casey, J. & Porter-Armstrong, A. (2010). Establishing best
practice in seating assessment for children with physical disabilities using
qualitative methodologies. Disability and Rehabilitation: Assistive Technology,
5(1), 34-47.
Wuang, Y. P., Chiang, C. S., Su, C. Y., & Wang, C. C. (2011). Effectiveness
of virtual reality using Wii gaming technology in children with Down syndrome.
Research in Developmental Disabilities, 32(1), 312-321.
Yildirim, N., Erbahceci, F., Ergun, N., Pitetti, K., & Beets, M. W. (2010). The
effect of physical fitness training on reaction time in youth with intellectual
disabilities. Perceptual and Motor Skills, 111(1), 178-186.
Yohannan, S. K., Tufaro, P. A., Hunter, H., Orleman, L., Palmatier, S., Sang,
C., Yurt, R. W. (2012). The utilization of Nintendo WiiTM during burn
rehabilitation: A pilot study. Journal of Burn Care and Research, 33(1), 36-45.
Zollars, J. A. (2010). Special Seating: An illustrated guide. Davie, Florida:
Prickly Pear Publications.
Enhancing Participation in Individual and Community Life Activities Practice Guide
179