Creating opportunities,
achieving expectations
Identifying and meeting the needs
of children who are deafblind
Sense
Children’s
Specialist
Services
New research commissioned by
Sense has estimated that there
are at least 4,000 children who
are deafblind in the UK.
Only one third of these children have been identified
by their local authority – even though they have a
legal responsibility towards children who are deafblind
under the Deafblind Guidance.
A child who is born deafblind or with multi-sensory
impairments will face immense challenges – including
with communication, mobility and participating in
the world around them. But with the right support,
and skilled individualised help, each child can learn,
develop and achieve. Without this, they are often
misunderstood, and families can feel isolated and
overwhelmed by having a child with such complex
difficulties. It is vital that these children and their
families get help early.
Sense works closely in partnership with families and
other professionals to bring about real choice and
opportunities for children who are deafblind in social
care, health and education.
Contents
1
A minimum of 4000 deafblind children in the UK
2
Low incidence, significant impact
3
A core offer to all families
4
What parents want
5
Defining deafblindness
A minimum of 4,000
deafblind children in the UK
Sense commissioned independent, expert
research on the numbers of deafblind people
now and over the next 20 years.
The Centre for Disability Research (CeDR) report1
estimates there are a minimum of 4,000 children who
are deafblind in the UK. These children will require
support from trained professionals who understand
the impact deafblindness can have on a child and their
family.
CeDR’s report also estimates that as many as 21,000
children in the UK may experience some degree of
longstanding sight and hearing difficulties for a period
of time during their childhood.
CeDR’s research method utilised a number of robust
and representative surveys, and the report sought to
collate information on the presence and sometimes
nature and severity of vision and hearing impairment.
This government-accepted methodology was also
recently used in estimating the learning disabilities
population.
The challenge of identifying
deafblind children
While some rare syndromes cause deafblindness in
childhood, such as CHARGE and Usher syndrome,
many deafblind children will have other disabilities
and health conditions meaning that diagnosis and the
identification of combined sight and hearing loss are
difficult.
In a separate report2, CeDR estimate there were
14,744 children with profound and multiple learning
disabilities in England aged under 18 in 2008.
The report recognises many of these children
will experience limited communication skills and
impairments of vision and hearing.
In England alone approximately 54,000 live births per
year are born pre term (before 37 weeks)3 and 1 in 10
of these babies will develop a permanent disability
such as lung disease, cerebral palsy, blindness or
deafness .
The frequency of Usher syndrome was previously
estimated to be between 3 and 4.4 per 100,000
live births, but recent advances in genetic screening
suggest a higher prevalence of 17 per 100,0005.
A three year national surveillance co-ordinated by the
Canadian Paediatric Surveillance Program in 2001
identified a national average of 3.5 children with
CHARGE per 100,000 live births. In the UK currently,
95% of people with CHARGE known to Sense and the
CHARGE Family Support Group get a diagnosis before
the age of 18 months6.
Rubella is no longer a significant cause of congenital
deafblindness but other infections during pregnancy
are a factor. The birth prevalence of congenital
cytomegalovirus is estimated at 70 per 100,000, with
17-20% having permanent conditions resulting from
the infection, including sight and hearing loss7.
Sense Children’s Specialist Services
1
Low incidence,
significant impact
Deafblindness has a significant impact on both the child
and the family. The impact will vary according to the
degree of sensory impairment, the type and timing of
onset and the skills the child has in using their residual
senses. But it is the difficulties of communication,
accessing information about the world and mobility
that all children who are deafblind have in common.
Children who are deafblind are often misunderstood
and families can feel isolated by having a child with
such complex difficulties. The impact of this can have
a detrimental effect on learning, health and well-being,
but with the right support a child can develop and be
an effective learner.
A child who is born deafblind has many challenges
and obstacles to overcome. The child perceives the
world differently due to the restricted information
received by the distance senses of sight and hearing.
The child needs to use their other senses – touch,
body awareness in space, balance, taste and
smell – to access information which is more easily
available to other children. This can significantly delay
development.
Their journey is different and our role is to join them on
this journey – supporting them to make sense of the
world if they are to reach their full potential.
Delays in development
Communication and learning are significant challenges
for children with deafblindness, and key concepts
are often achieved later than might be expected.
Developing an awareness of others, self perception and
the impact of actions on others can all be affected. The
result is often a misdiagnosis of a greater degree of
learning disability or perhaps autism, when in fact the
key factor impacting on learning is the combined sight
and hearing loss.
A child who becomes deafblind in their childhood
or teenage years will have developed language and
communication but their sight and hearing loss
will require changes to how they communicate,
access information and explore the environment.
The diagnosis of sight and hearing loss can have a
significant emotional impact.
Support at key times
Specialist support is crucial at key moments in a child’s life.
Identification and early
intervention gives the child and
family the opportunities they
need to learn and develop. Early
bonding may be affected and
many children experience multiple
medical interventions in their early
years. Getting it right early is vital
to the child and the family if they
are to reach their full potential.
Choosing pre-school and school
placements are important
decisions for families. Children
who are deafblind are educated
2
in a wide variety of mainstream
and specialist settings. Whatever
the setting, the child will need
individual support to access the
learning environment. Additional
health and social needs will impact
on the child’s ability to access all
the opportunities school provides.
Assessment of all these needs and
collaboration between agencies to
meet them is important.
Transition between primary and
secondary school can be a
challenge, and as children develop
Creating opportunities, achieving expectations
their skills it is vital that support is
maintained.
As the young person becomes an
adult it is important to focus on
the support they will need to lead
an active life – for example, the
communication and mobility skills
they need to make friends and the
information they need to access
and plan for the future. Individual
and personalised support will be
needed.
A core offer to all families
Sense works in partnership with families and
professionals to help children and young
people who are deafblind – offering support
from early childhood until the young person
moves into adulthood.
We provide a core offer of support for all families that
includes:
The full range of services
provided by Sense
• Getting in touch within two working days from
when first contacting Sense.
Sense provides a range of information, advice and
services for children and their families.
• A meeting with a Sense worker within eight weeks
of first getting in touch.
Intervenors and communicator guides provide oneto-one support to children who are deafblind to enable
the individual to join in the world around them as much
as possible. This support may be provided in someone’s
home, their local community, in an educational or work
setting – or combination of these. Schemes are usually
paid for by direct payments, individual budgets, social
services, local health or education authorities.
• A personal case worker.
• The opportunity to attend at least one family event
a year and staying in regular contact.
Other support is offered at times of particular
need, including help when a child is first diagnosed,
assessments that focus on what a child can do, help
to meet other families, support at times of crisis or
significant change for the child, and in some areas
access to resource libraries.
Summer holidays give children who are deafblind the
chance to enjoy new experiences, make friends and
grow in confidence. They also give families and carers a
much needed break.
Support into adulthood helps young people, their
families and carers to plan for the move from childhood
to adulthood and provides a range of supported
housing choices and resource centres providing
stimulating activities and programmes
Membership keeps families in touch with each other
and Sense so they can share information, offer mutual
support and socialise.
Campaigning supports children, families and young
people to address the issues that are important to
them.
Sense Children’s Specialist Services
3
Supporting professionals
Sense works with professionals in health, education and
social care to help them support families who have a
child with multi-sensory impairments. Services which
can be commissioned from Sense include:
• Holistic assessments that offer insight into potential
abilities and identify support needs. These can
feed into the preparation of a Statement of Special
Educational Needs or assessments of social care
(under the Deafblind Guidance).
• Training opportunities, including the accredited
intervenor course, Regional Centre of Expertise (in
partnership with NatSIP) and bespoke training/inset
packages.
4
Creating opportunities, achieving expectations
• Consultancy work including mandatory qualification
multi-sensory impairment teacher provision (in
absence of local provision), ongoing continual
professional development and independent second
opinions.
• Mentoring to local multi-sensory impairment
teachers
In addition, we can often offer some support to the
families of children who have problems with either
hearing or vision combined with learning or other
additional disabilities.
What parents want
Recognition and provision
It is hard to underestimate the impact deafblindness
has on a child’s development and education – it often
results in complex health, educational and social care
needs requiring multi-agency support.
No matter what the impact of deafblindness and how
complex the needs that result, Sense believes that all
children and their parents should receive:
• Timely services that prepare children and families
for the next stage in their lives and which support
their independence and choices.
• Good information and guidance to help choose the
best educational setting, based on a fair admissions
policy, access to specialist support and redress for
poor decisions.
• Support from professionals who have the skills
to understand their specific needs, the impact
deafblindness has on their lives and what is needed
to involve them in decision making.
Sense knows that what families want is a
choice in education, support for their child’s
social development and that their child
enjoys good long-term health and well-being.
Real choice in education
Parents of deafblind children are often time-poor.
The expectations the system places on them to hold
schools and services to account, maintain standards
and provide the specialist support their child needs can
place additional burdens on already vulnerable parents.
Specialist support and services should be available
across the full range of educational settings. Services
such as multi-sensory impairment teachers, intervenors
and specialist equipment can be expensive. Funding
arrangements must not compromise the specific needs
of children and young people who are deafblind.
Adequate local provision; transparent admissions
processes and funding; access to independent
information and advice; agencies working together to
recognise combined health, social care and education
needs; ongoing inspection to ensure standards are
met; and the teaching of a meaningful curriculum to
children who are deafblind – these are all needed to
support parents in their choices.
Supporting a child’s social development
Many children and young people who are deafblind
experience lives outside school that are much more
restricted than they need to be. Deafblindness is
isolating – children and young people are missing
out on opportunities to learn about the world around
them, to grow in confidence and to join in the life of
their community, but with the right services, support
and opportunities, their life experience can be greatly
enhanced.
Sense Children’s Specialist Services
5
“Early intervention is vital to
the development of children
who are deafblind”
Local authorities have mandatory responsibilities
towards children who are deafblind arising from the
Deafblind Guidance8. They are required to:
• Identify children in their area.
• Identify a senior manager with responsibility for
deafblind services.
• Provide specialist assessments, appropriate
information and services designed to meet the
needs of children who are deafblind.
Unfortunately implementation of this guidance is
very patchy for children. Our survey of local authorities
shows that in 2009 local authorities who responded
were only identifying a third of the deafblind children
whom Sense believes live in their catchment area.
Under half of the children identified as deafblind
were receiving a specialist assessment of their need
for services and only 60% of those provided with an
assessment were receiving one-to-one support. Only
60% of local authorities have appointed a senior
manager to oversee services for children who are
deafblind9.
Long-term health and well-being
Many children who are deafblind have additional,
complex and sometimes life threatening health
problems. This can be during the first days and months
of a child’s life, or be part of an ongoing need for
health interventions. Health outcomes and difficult
decisions can dominate both parents and health
professionals supporting the child. Yet it is important
to recognise the ongoing learning and developmental
needs of children who are deafblind and to take
steps to support the child’s communication, access to
information and the adaptation of their environment –
steps that are key to the child’s overall quality of life.
6
Creating opportunities, achieving expectations
Key elements of good practice
Some common elements in approach will support real
choice and opportunities for children and their families
across social care, health and education.
Identification of children who are deafblind requires
agencies to work together and will result in clarity over
the children they are responsible for, their needs and
the services and resources available to support them.
Quality assessment is key in securing good education,
health and social outcomes for children who are
deafblind, and in supporting them through transition
between the many services they receive. Assessments
must be conducted by qualified professionals who
understand the particular needs of children who are
deafblind and the particular challenges the children
face in accessing health, social care and education
services.
Early intervention is vital to the development of
children who are deafblind. It is most effective if it
begins in the first months of life, it is individualised,
specialist and intensive, and targets areas of
development particularly affected by the loss of
hearing and vision. Intervention must include providing
information normally available through an intact
sensory system, including sight and hearing. This
can be done by trained intervenors10, who have an
important role in structuring information.
Specialist professional support in a supportive
environment helps deafblind children learn, develop
socially and enjoy a healthy life.
Funding arrangements that recognise that the
services and environments deafblind children need can
be expensive and difficult for single services to make
available.
Defining Deafblindness
There are three common terms for people with
co-occurring hearing and visual problems:
deafblindness, multi-sensory impairment and dual
sensory impairment (less frequently used, particularly
with children). There have been attempts to distinguish
these terms from each other11, 12 but for this document
we are using the preferred term of ‘deafblind/ness’.
By deafblind we mean children who have difficulties
with sight and hearing and sometimes learning or
other additional disabilities; and children who have
medical conditions that are likely to cause problems
with sight and hearing as they grow older – for
example Usher syndrome.
A commonly used definition in the UK is that “a
person is regarded as deafblind if their combined
sight and hearing impairment cause difficulties with
communication, access to information and mobility.
This includes people with a progressive sight and
hearing loss13.”
Deafblind children are defined as: “a heterogeneous
group of children who may suffer from varying degrees
of visual and hearing impairment, perhaps combined
with learning difficulties and physical disabilities, which
can cause severe communication, developmental and
educational problems. A precise description is difficult
because of the degrees of deafness and blindness
– possibly combined with different degrees of other
disabilities – are not uniform, and the educational needs
of each child will have to be decided individually14.”
People do not necessarily label themselves and so
a child or young person may not identify or define
themselves as being deafblind. They may say they
don’t see or hear too well, or identify with particular
causes of sight and hearing loss (e.g. Usher, CHARGE)
or see other disabilities or complex health problems as
more significant. However, if the way they see and hear
has a significant functional impact on communication,
education and development, access to information or
mobility it is important to recognise and respond to an
individual’s sensory loss.
Sense Children’s Specialist Services
7
References
1 Estimating the Number of People with Co-Occurring
Vision and Hearing Impairments in the UK
(full report available via: www.sense.org.uk/urgency)
2http://www.dh.gov.uk/en/Publicationsandstatistics/
Publications/PublicationsPolicyAndGuidance/
DH_103201 (accessed February 2011)
3http://www.bliss.org.uk/page.asp?section=760&sect
ionTitle=Premature+babies+%96+definitions+and+
statistics (accessed February 2011)
4http://www.tommys.org/Page.aspx?pid=387
(accessed February 2011)
5 Kimberling W, et al,: Frequency of Usher syndrome
in two pediatric populations, Genetics in Medicine;
2010 Aug: 12(8): 512-6
6 A joint Sense and CHARGE Family Support Group
Survey, 2011, unpublished (March 2011)
7 Dollard, S et al; New estimates of the prevalence of
neurological and sensory sequelae and mortality
associated with congenital cytomegalovirus
infection; Rev.Med.Virol.2007; 17
8 Issued by the Department of Health for England
(LAC(DH)(2009)6) and National Assembly for Wales
(National Assembly for Wales Circular No.10/01)
9 Sense 2009-10 Children’s Services Survey http://
www.sense.org.uk/help_and_advice/social_services/
deafblind_guidance/survey.htm (accessed March
2011)
10Murdoch, H. Early intervention for children who are
deafblind. Education and Child Psychology 2004;
21(2): 67-79)
11Gibbons, P. (2001) Policy for Educational
Entitlement for Children who have Multi-Sensory
Impairments. Greater Manchester MSI Network
Consortium (GMMSINC): Manchester
12QCA. (1999). Shared Worlds – Different Experiences;
designing the curriculum for pupils who are
deafblind. Qualifications and Curriculum Agency:
London.
13Think Dual Sensory, Department of Health, 1995
14DES Policy Statement March 1989: Education
Provision for Deafblind Children
8
Creating opportunities, achieving expectations
“A child who is born
deafblind or with multisensory impairments will
face immense challenges.
But with the right support,
and skilled individualised
help, each child can learn,
develop and achieve.”
Sense Children’s Specialist Services
9
Sense
Sense is the leading national charity that supports and
campaigns for children and adults who are deafblind.
We provide expert advice and information as well as
specialist services to deafblind people, their families,
carers and the professionals who work with them.
In addition, we support people who have sensory
impairments with additional disabilities.
Getting in touch
To find out more about Sense and our work with children, please contact
the Information and Advice team who will ensure you are put in touch
with the right person:
If you would like a copy of this leaflet in another format – such as Braille
or audio tape, or you would like it to be translated into your first language
please contact us.
Tel: 0845 127 0066
Email: [email protected]
website: www.sense.org.uk/children
Sense
101 Pentonville Road,
London N1 9LG
Sense Cymru
Tŷ Penderyn, 26 High Street
Merthyr Tydfil CF47 8DP
Sense Northern Ireland
Sense Family Centre
The Manor House, 51 Mallusk Road
Mallusk, County Antrim BT37 9AA
March 2011
Registered charity no: 289868
Company number: 1825301