Disability Conversations
The Dignity of Choice and Risk
Summary: Recognising that more than 300,000
Australians are living with some physical, intellectual
or psychiatric disability that requires the support of
services in the community, our federal and state governments have committed to a reform package which
aims to deliver the biggest shift in disability policy for
a generation. With the establishment of the National
Disability Insurance Scheme [NDIS] individuals with
a disability, their families and carers, will have more
choice and control over the care they receive and the
agencies that they choose to deliver their care services.
There is an increasing recognition of the rights of people with disabilities, of according them the dignity of
control over their own lives and of their right to take
the normal risks in life which the rest of the community takes for granted. Yet access to these rights can be
hampered by concerns about risk management within disability service organisations, resulting in client
needs and aspirations being marginalised.
Significant changes in the public and disability sectors
have affected the way in which community services
are provided. Outsourcing, complex tendering processes, quality assurance programs and accreditation
requirements have seen risk management emerge as
a key factor in community services. Bureaucratic regulatory control has also been expanded. Often this has
been due to pressure on governments in the face of
media coverage and public outcry in response to scandals of abuse or neglect.
2015
Balancing freedom of choice with the need for security is an ongoing challenge. Freedom to pursue goals,
to act on impulse and to undertake risk is necessarily
constrained by strong needs for safety, security and
comfort. For those people with disabilities who experience significant regulation and controls over their
lives, there is often a hunger for freedom, choice, and
access to justice, fair treatment, and independence.
Protecting vulnerable consumers from exploitation,
abuse and neglect will continue to be a concern and
require independent monitoring and advocacy that is
independent of service providers as a key consumer
protection mechanism.
Agencies that prioritise putting their mission and values into practice around a person-centred framework
are more likely to get the balance right between dignity of choice and undertaking risk. Baptcare attempts
to do this. Baptcare is committed to self-directed
approaches that place the individual with a disability at
the centre of decision-making, expanding their choices and assisting them to become more connected to
their communities. Baptcare is a strong supporter of
the NDIS and our participation in the NDIS trial site
in Tasmania has allowed us to support young people
with disabilities to take up new exciting options in life.
Contents
Creating a new climate of choice
2
Opinion Piece: Dignity of Choice & Risk
3
Baptcare – Committed to client choice
12
References
18
Baptcare Social Policy Position Paper
2
Creating a new climate of choice
By 2009, one in five Australians – or around 4 million
people – had some form of disability, with 1.3 million needing help with the core activities of daily life1.
A key factor is the ageing of the Australian population. While older Australians can expect to live longer
and fitter than in earlier generations, the number of
frail aged and those with disabilities is nevertheless
increasing. In the state with the oldest population profile – Tasmania – the rate of disability is nearly one in
four people2.
Many people with a disability are living independently without assistance or with some help provided by
family and informal carers. However, others need substantial assistance in daily life and support to access
study and employment, and participate in the life of
the wider community. By 2012 there were around
317,600 Australians using disability support services3.
Their most common primary or significant disabilities
were an intellectual disability (33 per cent of service
users), physical disabilities (32 per cent), and psychiatric disorders (28 per cent)4 .
In light of the needs identified within the community, the Council of Australian Governments [COAG]5
endorsed a National Disability Strategy 2010–2020.
This was followed by a Productivity Commission
inquiry into disability care and support, leading to a
COAG agreement on the need for reform through
an insurance-based scheme. As a result, the new
Commonwealth National Disability Insurance Scheme
Act of 2013 was passed by federal parliament with
support from all parties in the political process and
with widespread support from the broader Australian
community.
Administered by the National Disability Insurance
Agency [NDIA]6, the new system aims to deliver individualised funding to support people who are living
with permanent and significant disability. With NDIS
funds allocated to individuals with a disability on the
basis of their assessed need (rather than allocated as
block funding to service agencies), a new era of consumer-directed care aims to hand greater control to
clients and their carers. This will increase the opportunities for many people to make their own choices
about their care priorities and service providers.
AIHW, 2013
ABS, 2011
AIHW, 2013
AIHW, 2013
COAG is the regular meeting of the Commonwealth, state and
territory governments to formulate national policy agreements.
6 The NDIA is the government body charged with the
implementation of the National Disability Insurance Scheme [NDIS]
Therefore, “the creation of a National Disability
Insurance Scheme (NDIS) is arguably the largest shift
in disability policy and programs for a generation” –
Australian Federation of Disability Organisations7 .
Within the framework of the United Nations
Convention on the Rights of Persons with Disabilities,
and in light of the national roll-out of the NDIS, there
is an increasing focus on the rights of Australians with
disabilities. This is an important cultural change within the disability sector. The Australian Federation of
Disability Organisations has argued that decades of
institutionalisation and medicalization have left many
people with disabilities accepting whatever the system offers8. As more choice is offered, some clients
will need to be supported in their decision-making
process, while others will keenly claim the advantages
of greater independent choice.
Discussions about this cultural change often talk in
terms of choice and control. However, the issue of
risk is intrinsically linked to the exercise of choice. In
all aspects of life we face some level of risk. People
with disabilities need to be accorded the dignity and
respect given to people in the general population
and be encouraged to act on informed choices in
life. This may make some individuals, their family and
carers, and disability service providers nervous about
the intrinsic risks involved. However, wherever possible, people can be facilitated to take reasonable risks
which allow them to learn and grow.
In light of the roll-out of the new NDIS model, this
Paper aims to explore some of the issues allied with
choice and risk; and to stimulate discussion between
clients, advocates and service organisations. It aims to
foster a balanced approach to the question of dignity
of choice for consumers with disabilities, including the
right to take risks in life, and thus contribute to the
wider debate.
Cheryl Fairclough
Social Policy Officer,
Baptcare
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7 AFDO 2012, p4
8 AFDO, 2012
Disability Conversations – The Dignity of Choice, Control and Risk
Opinion Piece: Dignity of Choice & Risk
by David Craig, Adegget Consulting
David Craig has worked in the community
services sector for the last 36 years, particularly in disability and aged care. This
included roles with Scope Victoria, Benetas,
RMIT & Deakin Universities, and COTA
Victoria. For more than 12 years David was
Executive Officer of the disability advocacy
agency Action for Community Living. He
has played a leading role in the development of disability peak bodies including
the Victorian Disability Advocacy Network
and Disability Advocacy Network Australia.
He is currently with Adegget Consulting.
David is a strong believer in collaborative approaches, and the importance of
community sector agencies and civil society
groups representing and advocating for
their communities of interest in a manner
that promotes healthy, just and diverse
communities.
In this Opinion Piece, David explores
the issues of choice and risk within a
Victorian context.
“There is no real guarantee of safety in this world.
In a practical, immediate sense, we are all unsafe.
The only way to try to escape danger is to build
a prison around ourselves. Some people, in this
hazardous world, choose one way or another
to do just that. True communities have always
known this truth. Systems – whether advocacy,
therapeutic or regulatory – do not.”
—John McKnight9
In society today, parents face a major challenge in getting the right balance between the protection of vulnerable children and the promotion of their choices,
dignity, and the value of risk taking as they seek to do
a good job of raising their children. There is also growing evidence that, with the support of medicine and
science, our good intentions and efforts to prevent
contact with infection and disease may be making
our children more vulnerable to more serious health
risks because they have been rendered less resilient.
This brings into question our understanding about the
value and place of risk-taking and its overall impact
on quality of life.
For those who depend on aged and disability services for their survival and activities of daily living, the
situation is somewhat more precarious and the outcomes even more critical. This is because, for many
9 McKnight, 1995
people with disabilities, there often have been little
or no moderating forces to help to keep the balance
between protection and the offering of support for
their right to take risks.
‘Captives of Care’
A rather extreme case from the 1970s makes this
point. A group of residents living in an institution
called the Weemalla Home for Incurables, located in
the Sydney suburb of Ryde, stood up to the management of this institution that was described as “like
a prison” due to its strict rules governing behaviour,
outings and fraternisation with other residents. The
residents demanded more flexible times for outings
and bed times, access to electric wheelchairs to promote more independence, and freedom of movement.
As a consequence, management threatened to have
them kicked out of the institution. Their story was
told by one of the residents, John Roarty, and was
the basis for a television documentary piece on Mike
Willisee’s Current Affair, and a book10 and film titled
“Captives of Care”. This gave public exposure to the
plight of people with disabilities dependant on institutional support for their freedom, movement, and a life
that is self-directed. It did much to bring about radical
reform in how disability supports are provided.
Despite this, the notion of captivity in care is still one
that runs deep and wide in the service system today.
It continues to limit and constrain people with disabilities in ways that are not consistent with the legal
frameworks and human rights conventions that have
been created to protect and promote the rights and
freedoms of the community in general.
In theory, dignity of choice and self-determination are
fundamental features of all current legal frameworks
and human rights conventions affecting people with
disabilities in Australia. Yet access to these rights is
significantly mitigated by the conflicting drivers of risk
management.
Risk management vs choice
in care
There is growing anecdotal evidence that a range of
service providers are using risk management strategies in such a manner that their organisations are
in danger of becoming irrelevant to the very people
they are funded to serve. On the consumer grapevines,
stories are rife about people being told that they are
too disabled, have the wrong type of disability, do not
10 Roarty, 1981
3
Baptcare Social Policy Position Paper
4
In residential settings, the question “My home or
your workplace?” has been the topic of multiple
conference papers and service improvement projects.
Research by Clement and Bigby into changes in the
quality of life for those people with intellectual disabilities who moved out from Kew Cottages into the
community, highlighted that the design of shared
residential group homes is often more attuned to the
workplace needs of staff than the creation of personalised homelike environments11.
Service provider organisations can appear to be heavily influenced by the threats of Work Health and Safety
regulation. Client needs and aspirations can often be
marginalised in this contest.
Disabled clients can feel like flyweights in a superheavy weight contest.
fit the agency’s criteria or target group, or present too
great a risk to the service.
Some examples of this process, as taken from advocacy casework, include:
• Two women attending a social support group at
a Community Health Service were advised they
would no longer be able to attend the program following an Occupational Health and Safety review.
This review had determined that pushing a person
around in a wheelchair on community outings presented an unnecessary risk to staff. In this case, the
two women were often supported by a daughter
who came along as a volunteer, but this was not
seen as an acceptable alternative solution.
• A person with a physical disability living in their
own unit in the community received a package
of support that funded the 34 hours of attendant
support deemed by a Needs Assessment as necessary for her to sustain independent living. She
was advised by her service provider that her support now physically required two staff and so her
hours would be halved to 17 hours per week – far
below her assessed need. Pressure was then placed
on the individual to move to a more institutional
congregate care facility.
• A person with a disability who was moving into a
community residential unit had to undergo three
different assessments related to the OH&S risk
they presented to staff working in the unit. Yet in
this particular organisation, there was no official
assessment undertaken to consider the impact
of the new resident on the safety or wellbeing of
existing residents.
• An advocacy organisation refused to do any home
visits because of the potential for risk to the professional staff. Yet home visits were once accepted
as an important opportunity to make better assessments about the advocacy issue and to provide
contextual information useful to addressing the
issues for which the client had requested assistance.
These cases highlight some of the extreme outcomes
for consumers when their service providers make risk
mitigation the primary focus.
The emergence of risk
management as a key factor in
community services
One of the most significant studies into the impact of
risk management practices on community services and
clients in Victoria was undertaken by Brett & Moran et
al12. The researchers (among other objectives) tested
the contention that there are dysfunctional interactions between the values, objectives and practices of
community services, and the values, objectives and
practices of risk management. This study found that
significant changes in public sector administration
have profoundly impacted the way in which community services are provided and risks managed.
This study found five transitions have been of particular significance:
1. a radical program of contracting formerly
publicly-delivered health and welfare services out
to local municipal, private and non-government
agencies
2. the implementation of complex tendering and
contractual business systems to manage these
transitions
3. the consequent requirements for service providers to reform their governance arrangements in
the interests of accountability, service standards,
efficiency and effectiveness
4. the introduction of a range of quality assurance
programs and accreditation requirements for
service providers
5. formal requirements through contracts and standards to have processes which manage risk.
This powerful set of changes, often referred to as ‘new
public management’, represented a new regulatory
regime for a wide range of businesses and services
11 Clement & Bigby, 2008
12 Brett, Moran, Green & Sawyer, 2009
Disability Conversations – The Dignity of Choice, Control and Risk
– all directed not only towards the goals of improving
efficiency, quality, and performance, but also toward
the management of the risks arising from the process
of outsourcing.
The report by Brett & Moran et al13 provides a comprehensive treatment of the topic. It outlines how some
service providers, professionals, consumers and their
families have had to struggle to make sense of the
impacts these transitions have had on the quality and
value of services provided.
The expansionary nature
of regulatory control by
bureaucratic systems
How has the management of risk reached this point?
Working for a large disability service provider through
the 1980s and 90s, the sheer size and weight of the
organisation’s policy and procedures manuals was
very overwhelming. For newcomers to the organisation, this massive folder seemed to be a rather mixed
bag of detailed policies about an eclectic set of issues
and concerns. For those who had been around when
many of these policies were initiated, the policies represented a historical record of all the incidents and
close shaves that had occurred somewhere in the
organisation. With each incident, policy and regulation, the noose threatened to draw tighter – restricting client freedom and eliminating the negotiated
balance of adventurous living with a common sense
approach to safety.
Whenever there is a public scandal, intense pressure
is put on the responsible government minister by the
media, opposition parties, and aged care and disability advocates. A facility may be closed and funding
increased for monitoring of service standards. Yet are
the residents of the offending facility left better off?
In a consumer-directed context that is an important
question. Are all other residents better off as a result
of increased regulation and monitoring throughout the sector? How do we know? It is known that
the disorientation caused by closing a facility down
and moving all residents on to other residential care
facilities takes a huge toll on many older and frailer
residents.
with disabilities seeking to find some small economic
savings by house sharing.
Advocacy effort – formal and informal – has contributed to the development of service standards, the
creation of competency-based course curriculum for
workers in the disability and aged service sectors, and
the development of accreditation and monitoring
mechanisms to support implementation and compliance. In endeavouring to protect rights and codify
these protections in legislation and standards, advocates easily become part of the system of increasing
regulation in people’s lives. When there is a public outcry over a case of abuse or neglect, pressure is placed
on governments to act to protect. The response is
often heavy handed regulation and increased monitoring. If these activities are not fully funded, funds
that could usefully be provided for direct care are redirected to regulatory processes.
Balancing Freedom & Security
Zygmunt Bauman, in his book The Individualised
Society, has a chapter titled ‘Freedom and Security: the
unfinished story of a tempestuous union’14 in which
he discusses Freud’s observation that ‘civilised man’
has exchanged a portion of his possibilities of happiness for a portion of security. Freedom to pursue one’s
desires, to act on impulse or to follow your instincts
is necessarily constrained by equally strong needs for
security. This security is obtained by the introduction
of regulation of where, how, when and who will do
what in a manner that is prescribed, predictable and
spares us the need for hesitation and indecision. We
could take this even further to argue that it removes
the need to think or having to make a judgement call
– in an attempt to remove human fallibility from the
decision-making process.
David Schwarz15 argues that each scandal (or pattern
of incidents) in disability or aged care is likely to precipitate an expansion of regulatory control. He suggests
A case that justified significant public outrage was
the fire at Kew Cottages in Melbourne that led to
the deaths of nine men with intellectual disabilities.
One of the Victorian regulatory changes following
this tragedy was that any accommodation facility/
house, where three or more recipients of Department
of Human Services funding reside, must install extensive and expensive fire safety sprinkler systems. Recent
stories from people with individual packages who are
choosing to rent a house and share with two others
suggest that these regulations can serve to limit the
range of choices for housing available to Victorians
13 Brett, Moran, Green & Sawyer, 2009
14 Bauman, Z., 2001
15 Schwarz, D., 1992
5
Baptcare Social Policy Position Paper
6
that the weight of regulatory control, and the monitoring and bureaucratic paperwork that it entails, robs
much needed resources from direct support for the
clients. This is accompanied by a professionalisation of
the relationships with people with disabilities, growing authority of the bureaucracy and a diminishment
of the power of citizens. Continuity of administration
systems entrenches culture and practices that can only
be changed through major reforms and disruption to
the status quo.
For Australians with disabilities, the NDIS is seen as a
chance to bring about major change and a chance to
swing the pendulum back in the direction of self-determination, freedom and choice. While person-centred practice has been a core promise of funding
bodies and service providers for some time, it has
largely been rhetoric and has had little capacity to disrupt the muscular regulatory control exercised across
the system by overt risk management practices.
This trade-off between freedom and security produces ongoing tension between these two intense
needs. It is not so much a case of finding the perfect
balance but creating the negotiating space for movement between these competing needs for adventure,
excitement and risk up against an enduring need for
safety, security and comfort. It is finding some balance
within this shifting and dynamic tension that lies at
the heart of a solution to the dilemma we face around
risk and rights. The ongoing management of this balance demands a swinging pendulum, not a static one.
Consumer-Directed Care –
Putting the consumers in
control
Attempts by government funders and service providers to regulate and consolidate fixed laws, policies and
practices, lie at the heart of the growing frustrations
expressed by people who rely on care. Independent
disability advocacy agencies have been established to
uphold the rights and freedoms of people with disabilities and are thus part of the energy directed to
swinging the pendulum against life restricting regulation and control. This suggests that there is a need
to be more client or consumer focussed in the way
in which security and safety needs are assessed. This
should include their impact on client wellbeing and
rights. Only when this has been done should other risk
management considerations come into play.
For people with disabilities who experience significant
regulation and controls in their lives, the hunger for
freedom and the opportunities to act spontaneously
rate highly. This was evidenced in major consultations
undertaken to identify their aspirations, passions and
needs, such as “The Aspirations of People with a
Disability Within an Inclusive Victorian Community”16
study and the “Shut Out” national Disability Strategy
Consultation Report undertaken in 200817.
These studies provide strong messages from people
with disabilities about the kind of lives they would like
to have – lives that are in stark contrast to the reality
for far too many. Concerns that were given highest
priority in these consultations included social exclusion, lack of choices, access to flexible disability supports, access to justice and fair treatment, and access
to income and employment opportunities. Significant
themes were the desire for greater freedom and
independence that supports community participation.
Families raised concerns about the extent to which
they have felt unsupported and unheard by both governments and their communities.
16 DHS Disability Services Division, 2000
17 National People with Disabilities and Carer Council, 2008
The Commonwealth’s adoption of the UN Convention
on the Rights of Persons with Disabilities and the
COAG commitment to a National Disability Strategy,
drawn from this human rights framework, create an
important context for the implementation of the NDIS.
The National Disability Strategy sets out an action plan
in six broad areas that includes implementation of the
NDIS as one key strategy. This broader set of strategies
has become a bit lost in the attention given to the
implementation of the NDIS and the implications this
has for the disability support ‘industry’.
Handing service funding from service providers over
to the individual offers a powerful lever for systemic change and a major shift in the balance of power
between agencies and clients. Under the State
Disability Plan in Victoria, individualised funding
approaches were developed that provided people
with disabilities and their families with a taste of taking control over their own lives. This shift into the market place model that is now being introduced more
widely through the NDIS, demonstrates that consumers may make very different decisions about what
kind of services they choose and what kind of support
workers they prefer. While most disability clients are
likely to stick with the services they know, there will
be a growing number who will experiment with new
providers and different forms of service provision.
In recognition of the vulnerability of many people
with disabilities who will be eligible for disability support funding under the NDIS, disability service providers – through their peak body, National Disability
Services – have argued for strong regulation and
monitoring of service providers and disability support
staff. While they embrace the positive elements of
consumer directed funding and entitlement to support as a means of producing more responsive and
efficient services, this peak body also proposes government block funding for areas where markets will
not be effective and for specialist services18. Failure
to mention the important role of block funding for
independent advocacy services, as a key consumer
18 National Disability Services, 2013. The peak body representing
950 non-government agencies across Australia.
Disability Conversations – The Dignity of Choice, Control and Risk
protection mechanism for more vulnerable service
users, is surprising to say the least.
In terms of redressing the imbalance of protective
risk management drivers over drivers that promote
freedom, adventure and choice, the market place
may provide a significant opportunity to differentiate
between the providers that overspend on risk management from the ones that underspend. Over time
market forces driven by consumer choice may bring a
fairer balance between safety and freedom in service
delivery. Like any new adventure in life, mistakes will
be made and people – consumers, their families and
service providers – will learn how to get it right most
of the time. The market place will force providers to
listen better to their consumers and understand the
kind of lives they wish to live if they are to continue to
keep their business.
For service providers under the NDIS, and particularly the NDIA itself, there will be a challenge to shed
unnecessary infrastructure and excessive administration in order to return to consumers’ better quality
and quantity of service. Overseas experience suggests
that the more consumers are entrusted to make good
decisions for themselves with their own funding, the
more likely they are to achieve more with less funding.
If however, clients are monitored and regulated to the
last cent and expected to fight for their packages, the
greater the chance that they will feel a need to spend
everything to ensure that their funding is not reduced.
Reducing the churn of program funding before it
reaches the individual it is intended for should be a
major objective of the NDIA as well as service providers entrusted with consumers support funding.
Protecting vulnerable consumers from exploitation, abuse and neglect in the new market place
will require independent moderating mechanisms.
Continued funding by governments for the provision
of advocacy support that is clearly independent of
service provision will be a key consumer protection
mechanism. Advocacy services will need to be free to
consumers and not funded out of their packages. This
position is a key recommendation of the Productivity
Commission Report19 and has been accepted by most
major stakeholders as a critical feature of the new service funding paradigm.
19 Productivity Commission, 2011
Supporting people with
disabilities to make good
decisions
While the recommendations from the review of the
Victorian Guardianship Legislation reforms are still
waiting to be presented to parliament, the guidelines
for supported decision-making issued by the Victorian
Department of Human Services20 provide an excellent
framework for assisting people with disabilities to
make decisions.
These guidelines set out four levels of decision-making:
1. Autonomous decision making
The individual makes their own decisions with
possible access to the advice of friends and family,
information brochures, etc.
2. Supporting decision making
The individual is provided with information in
formats that are tailored to their needs, use
communication assistance or assistive technology
tools to communicate their decisions.
3. Supported or guided decision making
Formal arrangements are put in place for a
representative, advocate or group of supporters
such as a “Circle of Friends” or a Microboard who
assist in making decisions based on best interests
or known preferences of a person.
4. Substitute decision making
Decisions are made on a one-off basis by VCAT or
a guardian or an administrator is appointed (with
full or limited responsibility) to make decisions for
the individual.
These guidelines also set out seven principles for
assisting with decision making where this is appropriate. These guidelines respect the integrity of personhood and encourage an ongoing quest to support
and build capacity to contribute to decisions about
one’s own lifestyle.
These principles are:
• Everyone has a right to make decisions about matters that affect them
• We must assume capacity by the individual to
make decisions
• Individuals have a right to have support to make a
decision and be allowed the extra time and support
they may need to understand the issue and communicate their wishes or preferences
• Capacity is decision-specific – each and every situation is an opportunity to make or contribute to a
decision
• Individuals have the right to make mistakes and to
learn from experience
• People have a right to change their minds
• Individuals have a right to make a decision with
which others may not necessarily agree21.
20 DHS, 2012
21 DHS, 2012
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Baptcare Social Policy Position Paper
8
Supporting someone to experience a trial period of living on their own even, when it is deemed unlikely to
succeed, is a way of allowing individuals to be in control and discover what is possible and best. Agencies
that support an individual to test the horizons of their
capacity and capabilities demonstrate respect for
self-determination and decision-making that puts the
individual in control of their own lives in a manner
that is consistent with the rights and disability standards set out in Commonwealth and State legislation.
For people who may require substitute decision making processes, there are thoughtful examples in current best practice that facilitate shared or co-produced
decisions.
Case Example: A case presented at a 2013 forum
conducted by the Victorian Office of the Public
Advocate on the issue of “Supported Decision Making
– From Theory to Practice” illustrates the advantages
of this approach.22 A young man with significant cognitive impairment in his mid-20s at risk of aspirating
his food and choking to death was facing a decision
to have a tracheotomy inserted. His circle of support
that included his mother, a speech pathologist and a
friend met to make a decision that they felt best represented what he would want. As he had previously had
a tracheotomy earlier in his life, his mother was aware
that he had shown significant distress with its impact
on his quality of life and felt that if he was making
the decision he probably wouldn’t want to have one
again. Having the support and separate inputs from
several individuals with the young man’s best interest
at heart served to make this difficult decision less difficult in that it was a shared and supported conclusion.
Unfortunately the risk of choking to death became a
reality further down the track but the participants in
the decision felt they had still made the best decision.
Discovery of life through self
determination
Many people with disabilities have been institutionalised by routine and programmed lives. Supporting
their emergence from “learned dependence” in a
stepped or phased fashion will be an important part
of exploring choice and decision-making which is personally relevant and matches an individual’s appetite
for risk.
A significant remaining barrier is the problem of
affordable and accessible housing. Where we make
our home is a significant platform for a well lived life
and the choice of where we live, who we live with and
how we live are critical factors in the whole matter of
dignity of choice and risk. For those forced to live in a
group home, and so have no choice of house-mates,
this is a major compromise of rights and choice that
would not be tolerated by non-disabled citizens.
Case example: A DVD developed in Melbourne’s
Southern Metro Region23 captures the story of Nicole
– a young disabled woman who moves from living at
home into a group home, then to a shared house
with one other person, and then finally to a situation
where she lived in her own place. Nicole’s journey
highlights the importance of having freedom to do as
she pleases in her own place and without having to
ask permission. Her staged journey follows the kind
of housing career experienced by many other young
single adults. Each stage provided a chance to move
from restricted home environments to a home that
provided the least restrictive environment. There were
also parallel progressive developments in her employment and recreation options moving from more segregated group settings towards a more included life in
her local community.
Many people with disabilities with higher support
needs, and who live in group and congregate care
settings, rely heavily on paid staff to support their
decision-making. Staff supporting individuals living
in many of these settings often struggle to provide
much more than the core needs of shelter, security
and nutrition. Meeting the two most basic levels in
Maslow’s hierarchy of needs can come to represent
an unspoken or unofficial minimum standard of care
for people with more severe and profound intellectual
disabilities24.
Social Inclusion: Seeking to address the needs for
friendship, intimacy, acceptance and belonging lie at
the core of providing a life that is more than mere
existence. Yet these aspects may not be seen by many
providers as a core deliverable. Working to promote
social inclusion is a less certain area of practice – perhaps more art than science. It demands greater effort,
passion and expertise to deliver on these needs that
are highly important to many people with disabilities. It is also the space where risks that flow from
22 Watson, D., 2013
23 Viewed at http://www.youtube.com/watch?v=15VSqsr2nTs
24 Clement & Bigby, 2008
Disability Conversations – The Dignity of Choice, Control and Risk
individual choices and preferences can become more
complex and challenging. However, this presents a
leading edge opportunity for agencies that are committed to put in the effort to develop and deliver services that are attractive to both consumers and offer
the best quality support workers.
Making ‘space’ in Care Planning: The requirement
that Individual Care Plans be developed up front in the
individualised funding framework assumes that an
individual has already had the opportunity to explore
options, to test and taste a variety of experiences
before they advise their “planners” of the kind of life
they want to live. Where consumers have lived in a
controlled and regulated care environment, the need
to support their emergence into independence and
self-determination needs the space and time to build
in a large slab of exploring the adventure of life. This
needs to be incorporated into individualised plans.
Supporting the rights of the
individual in the context of
family carer relationships
In the development of the Victorian Disability Act
(2006) there was a strong lobby to have the rights
of ‘carers’25 to make substitute decisions for family
members included in the legislation. This was strongly opposed by disability rights advocates as denying
individuals who have decision-making impairments
their equal status before the law. This distinction was
important in the context that, while on the whole
families are vitally connected and offer critical support
that is important to the individual with a disability, not
all family members can be guaranteed to act in the
best interest of the individual.
Historically, family members have carried a heavy share
of the responsibility of providing care for people with
disabilities and still do today. As a consequence, many
people with disabilities moving through their teens
into adulthood have not had the same freedoms and
supports as their non-disabled peers to break away
from their parents and become independent.
This tension is strongest where family members seek
to be party to the decision-making process but have
no formal or legal rights to do so. Protecting the rights
of the individual are important in this context because,
even where intentions are good, family members may
not be best suited to discern the best interests of the
person.
25 The use of the term ‘carers’ to refer to unpaid informal
support provided by a family member is not accepted by
many disability right groups. Their preference is that this term
refers to people paid to care and that family members who
provide care do so in the context of being family. This does
not ignore the fact that family members have had to carry an
unfair and inappropriate responsibility for providing care due
to the inadequacy of funding for disability support. This is
still an unresolved debate between advocates for people with
disabilities and family/carer organisations.
Example: A good example of this emerges out of the
battle for the closure of institutions. Family members
have often come together to lobby for keeping institutions, while disability advocacy organisations and
self-advocacy groups have campaigned for their closure. It is parents and families of people with disabilities that have been the driving force in the creation of
many of the NGOs that specialise in disability service
provision today. Often their interest in providing safe
and sheltered environments for their vulnerable sons
and daughters has been perpetuated by service providers over the interests of adults with disabilities to
experience the full adventure of life available to their
non-disabled peers. This point is well illustrated by one
young woman surveyed about her housing preferences who was adamant that she didn’t want to move
into a group home, stating “group homes are for
parents, but they don’t have to live in them”26. One
leading advocate for the retention of Kew Cottages as
a congregate residential care facility, having witnessed
positive changes in his sister after she had moved out
into a community residential unit, made the observation that perhaps he had not always advocated in her
best interests.
Supporting an individual with a disability to make
hard decisions which involve potential for disagreement with their parents or family, requires skills and
sensitivity on the part of support staff and their managers. When such matters are not resolved between
the individual and their family members, agencies are
confronted with the prospect of standing by their consumer, supporting the family position, or pursuing independent advocacy support for the individual or even a
VCAT ruling. That latter course of action is usually only
pursued as a last resort. Efforts to achieve a positive
outcome in such situations can take effort, courage
and time. Tight unit costs and increasing competition
for clients under the NDIS could potentially increase
pressure on agencies to expedite external referral
for a decision that transfers risk and responsibility.
Case study: One example of how sensitive handling
of an issue can produce a positive outcome involves
a young man with cerebral palsy attending a respite
accommodation facility27. Staff noticed behaviours
that suggested the young man might be gay but
decided to hold off from taking any action until the
individual advised one of the support staff with whom
he gets on well that he thinks he is gay. The matter
was discussed with the individual and, although they
refused his request for staff to tell his parents, they
offered him support and encouragement to do this
himself. The staff member he related to particularly
well is also gay and provided him with some helpful
resources to share with his family. Issues around sexuality, intimacy and relationships are still a difficult
area for disability support agencies and staff, and can
26 YDAS, 2013
27 Department of Human Services and Department of Education
and Early Childhood Development, 2011
9
Baptcare Social Policy Position Paper
10
particularly be so for some agencies with faith-based
affiliations.
As a society, we have not supported families well in
the process of supporting their offspring with disabilities to transition into adult life along similar patterns
to those experienced by non-disabled offspring. The
notion that family support changes once their son or
daughter is an adult is now potentially possible under
the NDIS.
Developing the informal and
natural supports of community
A further protection for consumers, as recognised in
the NDIS, is separately funded support for consumer
peer support networks and an investment in community development. Importantly, community development work needs to address capacity building of
natural and informal supports to promote inclusion
of people with disabilities in the community of their
choice – and not just plug people into clubs and
programs.
Critical to the viability of the NDIA will be the development of a mixed economy of paid and professional
services working alongside informal and natural community supports that are offered voluntarily.
Schwarz argues that the best protection we can offer
someone is friends, family and connections to community28. If Schwarz is right, the current prevailing
view in many agencies, that volunteer involvement
in disability support is associated with increased risk,
needs to be shifted to a position that recognises that
volunteer and citizen engagement in the lives of people with disabilities is a positive risk mitigation strategy.
This is an area of support that is poorly done in many
areas and probably is a topic large enough for a separate conversation.
The dignity of choice and risk –
getting the balance right
The nature of risk is best determined by analysis of a
number of variables.
A critical variable, or set of variables, relate to the
individual themselves. Individual capacity, risk appetite, personality, social support networks, etc., all contribute important information to the risk analysis. In a
person-centred approach, any blanket or universal risk
management systems that do not take into account
individual difference are not appropriate. Individuals
sit at different points on the risk appetite continuum, between the dare devil and the cocoon dweller.
Person-centred support endeavours to meet a person
at their point of comfort and seeks to encourage
adventuring in life’s myriad of opportunities, supporting growth and development, and then to balance
this with the need to retreat to a place of comfort
and safety.
While we more often associate risk in disability support
arrangements with physical adventure and potential
for physical injury, the social world of intimacy, relationship and social engagement is also a space where
risks are taken or avoided.
Privacy & confidentiality: Privacy regulation and the
duty of care to maintain confidentiality in relation to
information about consumers, when applied excessively, has the potential to harm the individual being
protected. Protection of privacy can be at odds with
the objectives relating to social inclusion. In a sense,
privacy and community are on the same continuum.
In order to experience the bonds of community we
need to be known to others and they to us. The depth
of these bonds and social relationships depends on
our capacity to share information about ourselves and
reveal more of who we are. People with disabilities
who rely on a third party to mediate and facilitate this
process are at risk of not being known and consequently not experiencing belonging, acceptance and
social inclusion.
Rob van Esch / Shutterstock.com
The way in which privacy is managed by governments
and community organisations also impacts on those
who seek to be present in the lives of individuals,
particularly those who require assistance with decision-making, as supporters and friends. In our endeavours to protect the individual’s privacy we can exclude
or marginalise important information, support and
valuable resources critical to the person’s welfare.
So how can agency mission statements and values,
and the varied and individual aspirations of consumers, be bettered aligned with risk management compliance obligations?
28 Schwarz, D., 1992
A very brief survey of a number of experienced disability advocates who have seen the worst and best
examples of how the tension between freedom and
protection are managed, suggests that agencies that
prioritise putting their mission and values into practice around a person-centred framework usually get
it right. Several advocates spoke highly of Personal
Disability Conversations – The Dignity of Choice, Control and Risk
Outcome Measures, a service quality evaluation tool
developed in the US and operated by the Council on
Quality and Leadership29. This provides 21 outcome
areas that put person-centred and rights-based thinking and practice at its core. It provides an integrated
approach to consumer empowerment and choice
within an approach to risk management that encourages dialogue and shared decision making.
The following guidelines outlined in the Council on
Quality and Leadership’s resources30 provide a useful
tip-sheet for practitioners of disability support:
• Give people permission to try. Take action and enable the person to experience new situations. Many
discussions about risk get mired in the hypothetical
particulars of a specific event or activity that have
not yet taken place. Don’t let this happen. Act by
learning about the person and then assisting the
person to gain experience and skill under the safest
conditions.
• Assess the true cost of failure. All risky situations
are not equal. Some consequences are minor and
inconvenient; others are dramatic and permanent.
• Minimize risk through dialogue. Don’t assume
that people understand the skills and experiences
required for different situations. Discuss requirements and outcomes with people and develop a
shared understanding.
• Plan for “what if” situations. Anticipate and plan
for mistakes or failure. Practice contingencies.
This prevents minor failures from becoming major
disasters.
• Give people the opportunity to learn from small
mistakes. No person should be placed in the position of making major risky decisions, without the
benefit of previous experience and practice.
• Support the person. When risk increases, so does
the need for support.
Within a Consumer-Directed Care [CDC] environment: In the market place for disability support that
is being created by the shift to consumer directed
funding, disability support agencies need to be less
consumed by their marketing and public relations
activities and pay more attention to the benefits that
will accrue from listening to what consumers, their
families and advocates are saying about the quality
of their services.
The recently advertised funding for Disability Support
Organisations (DSOs) by the NDIA, to establish peer to
peer networks among users and their families, aims
to make consumers more informed and empowered.
Reviews of agencies, case managers and individual
support workers will be shared within these networks, and apps are already being developed with
“trip advisor” style features to enable quick access to
user perspectives. Agencies that gain a reputation for
managing risk in a manner that gets the right balance
between supporting dignity of risk and choice, and
29 Council on Quality and Leadership, 2014
30 Council on Quality and Leadership, 2014
meeting expectations of safety and wellbeing, will
be more likely to attract users of disability support
services.
At the systemic and structural level: Disability support agencies, in conjunction with their peak bodies,
should be aiming to change the culture within their
sector to ensure that regulatory frameworks and service standards support a balanced approach to risk
management that more effectively incorporates the
human rights obligations and positive benefits associated with risk taking and personal freedom.
Further work needs to be done to ensure that legislation supports codes of practice respecting a better
integration of the right to take risks and to be protected from negligence and abuse. Where there are
obvious conflicts that present a legal hazard for providers of disability support, agencies need to lobby for
legislative and policy reforms to ensure that duty of
care obligations recognise the need for balance.
Conclusion
A good life is not one that has no tragedies, mistakes,
disappointments or failures. It takes a healthy mixture
of highs and lows, achievement and failure to have a
life that is worth living.
For disability service providers there is the challenge to
reinvent their approaches to risk management and to
take up the challenge to operate closer to where their
consumers want to live. This may require the development of a stronger appetite for risks that are worthy
of the extra effort, uncertainty and tension. They may
also find that their workforce will be revitalised by
work that is more interesting and satisfying in that it
requires greater creativity and imagination and a commitment to join their consumers on a journey that is
worth taking. This is the balance that people with a
disability seek and the kind of support and backup
that will make a real difference to their lives.
David Craig
Adegget Consulting
This opinion piece was commissioned by
Baptcare as a contribution to broader
conversations within the disability sector
on the theme of expanding choice and
opportunity for people with disabilities.
11
Baptcare Social Policy Position Paper
12
Baptcare – Committed to client choice
As a strong supporter of the introduction of the
National Disability Insurance Scheme, Baptcare looks
forward to its roll-out across the country. Currently,
Baptcare’s participation in this roll-out is involvement
in the NDIS trial in Tasmania, providing support and
services to 15–24 year olds with a disability who
are deemed eligible under the NDIS. This complements our contract with the Tasmanian Department
of Health and Human Services [DHHS] to provide
Gateway Disability and Local Area Coordination
[LAC] Services in the north and south east of the
state. Through the Baptcare Gateway and LAC we
have been providing access to specialist disability
services, case coordination and case management to
Tasmanians with disabilities since July 2010. Baptcare
also has a long-standing involvement in the provision
of case management, respite and intensive support
for disability clients in Victoria.
Foundational Values and
Principles
Baptcare is concerned that many people with disabilities are disadvantaged and marginalised in our
society. This disadvantage precludes them from having an acceptable standard of living, from accessing
the goods, services and activities that are regarded as
essential in our society. A broader issue of concern
to Baptcare is the social exclusion which exists when
people cannot participate in key activities in society31.
The recent Victorian Parliamentary Inquiry into social
inclusion and the lives of Victorians living with disability32 emphasised the link between whether the
aspirations, hopes and ambitions of people with disabilities were being heard, respected and valued; and
their levels of wellbeing, sense of identity, and social
inclusion or exclusion. Participants giving evidence to
the Inquiry repeatedly emphasised that it is self-evident that people with disabilities have aspirations that
are no different to the general population (particularly
in the areas of living independently, financial security,
and being connected to the community) and that their
personal aspirations are equally unique to each individual33. Therefore, the issues of client choice, control
over own lives, and ability to undertake reasonable
risks in seeking to fulfil their aspirations, cannot be
separated from Baptcare’s commitment to fostering
social inclusion for all those with whom we work.
Our commitment to client choice and control as part
of person-centred care is also rooted in Baptcare’s fundamental organisational values of:
• Respect: We value the inherent dignity and equality of all people, regardless of their circumstances.
• Justice: We value equality of opportunity and consistency of outcome for all.
• Commitment: We value dedication to meeting
the challenges of our mission.
• Integrity: We value consistency between word
and deed.
• Accountability: We value the acceptance of personal responsibility.
• Co-operation: We value working together toward
our goals34.
These values undergird our mission of building ‘Caring
communities for all’, our commitment to social inclusion, and our Practice Frameworks which are committed to case management and service provision setting
the client at the centre of our practice.
31 Baptcare, 2010
32 Family and Community Development Committee, 2014
33 Family and Community Development Committee, 2014
34 Baptcare’s mission and values can be viewed at
www.baptcare.org.au
Disability Conversations – The Dignity of Choice, Control and Risk
As an agency established via the Baptist Union of
Victoria, our mission and values are rooted in our
heritage (see Appendix – A Theological Perspective).
Baptcare’s Practice Framework is built on some foundational principles. These include:
• The client is at the centre of all that we do.
• Our practice approach is person-centred and
strengths-based.
• We apply trauma-informed and therapeutic
approaches and understand the importance to
our clients of safety, positive relationships and the
capacity to learn and grow.
• Choice and control. Acknowledging that our society is unequal, we uphold and advocate for human
rights and the just involvement of all our clients in
decisions that affect their lives.
• Community participation and social inclusion35.
Within our work with people with disabilities, our person-centred approach includes a focus on inclusion;
enhancing resilience; and facilitating outcomes that
include independence, participation in the community,
building relationships and social connectedness36.
Baptcare is also committed to continuous improvement. This means deepening our capacity to effectively respond to clients presenting with complexity
and diversity within an increasingly consumer-driven
disability sector. Baptcare welcomes and seeks to
respond to the opportunities and challenges ahead
in a consumer climate focussed on choice, outcomes
and sustained change for people with disabilities.
Consumer Choice and Control
Baptcare believes that it is incumbent on all services
to develop respectful relationships with clients that
are based on the valuing of their inherent worth and
dignity37. One outworking of this is that decision –
making with disability clients emphasises the values of
independence and choice.
Baptcare articulates our understanding of the importance of consumer choice and control as:
“We [Baptcare] believe that empowerment – the
provision of choice, control and responsibility for
action – is not only a social justice issue but also
an enabler.. of change… age-appropriate choice
and control are essential to the achievement of
independence and autonomy38.
In this understanding, Baptcare does not ignore the
issues of risk but believes that wherever possible
(and to what extent possible) the principle of taking
personal responsibility for choices should be part of
the decision-making process – as it is for the general
population.
35 Baptcare, 2014
36 Baptcare, 2013
37 Baptcare, 2011
38 Baptcare, 2014, p6
13
A self-directed approach: Baptcare is committed to
self-directed approaches that place the individual with
the disability at the centre of decision-making and
treat family members or carers, where appropriate,
as partners39. In this process the individual’s priorities
in terms of hopes, goals and lifestyle choices should
provide the guide to what support is accessed, rather
than choice being limited to a pre-determined list of
service options40. This also means that funding must
be allocated to the individual and their family/support network early in the process in order to provide
them with the opportunity to think through, identify
and design supports. For people to exercise genuine
choice, they must have sufficient time to process and
understand the choices available to them and see how
these choices can move them towards their goals.
A migrant family has two disabled adult children living at
home. Baptcare became involved due to the need for the
parents to have at least some day respite from their caring
role. Through the process of exploring day activity options, the
family and the adult children expanded their understanding
of possible choices. For the first time in years, these socially
isolated adults felt free to choose activities that took them out
of the house and suited their interests. One chose to attend
arts and crafts activities, the other volunteered in a local
business. They also expanded their own independent personal
relationship networks.
(Baptcare case study – some details changed for privacy.)
Sometimes a disabled person’s view of themselves
and their ability or right to make choices may have
been narrowed by personal or family circumstances,
or even by cultural factors. Baptcare works to expand
the concept of choice in people’s lives. Wherever possible and appropriate, we also aim to assist families
to broaden their perception of their relative’s options
and capability for undertaking choice, action and risk.
‘Appropriate’ choices: The question of what are
seen as appropriate choices is a matter of debate and
depends on the perspective from which the choice is
viewed. A system may attempt to codify the question
of ‘appropriate’ choices, based on assumptions of
what ‘should’ be done.
While there are some consumer choices which can be
expected to be widely regarded as unsafe or publicly
untenable (eg use of NDIS funds for substance abuse or
gambling addictions), the process of assessing choices
as ‘controversial’ or ‘publicly unpalatable’ based on
‘broad community norms’41 requires value judgements
which may be debated. Even some decisions as to
what constitutes ‘unsafe’ choices may be made on the
basis of value judgements rather than realistic discussions and struggles on the weighing up of risk.
39 Baptcare, 2011
40 Baptcare, 2011
41 National Disability Services, 2013
Baptcare Social Policy Position Paper
14
A 7 year old girl with a disability has never attended school
due to an inability to walk and her mother’s refusal to consider
external involvements. Although very loving and affectionate
towards her daughter, the mother carries the child around
the home rather than allow a wheelchair and has persistently
blocked the possibility of physical therapy or even a mobility
assessment. A specialist school nearby is able to plan to cater
for the child’s needs, but her mother is unable to face entrusting her to anyone else’s care. The child’s muscles are wasted
and she is totally isolated. Overprotection against risk now
produces further harm.
(Baptcare case study – some details changed for privacy.)
Defining Risk
Risk: A probability or threat of damage, injury, liability,
loss or other negative occurrence that is caused by
external or internal vulnerabilities and that may be
neutralised through pre-emptive action42.
Often discussions on risk focus on physical risk of injury – to clients or workers – and other issues of personal safety. However, there are other risks of harm
facing people with disabilities. These can be related to
social isolation and exclusion, lack of independence,
inability to move out of poverty, the risk of insecure
housing and homelessness, and risk factors linked to
loss of vital supports due to ageing or death of family
carers. Building protective factors against these risks
may require choices that contain other physical or
emotional risks within the process
Risk management: Effective management consists
of early identification and assessment of risk, and the
application of risk mitigation strategies to eliminate,
reduce, or contain the risk so that adverse impacts
are minimised43. Risk management is therefore not
the total avoidance of risk, but rather the weighing
up of risk and devising strategies to minimise adverse
impacts.
Judging “acceptable” levels of risk: While there is
general agreement in the community services and disability sector as to duty of care and what constitutes
negligence, there can be a great reluctance to confront and agree on what levels of risk are acceptable44.
The scientific and technical approaches to risk used in
engineering or medicine do not necessarily translate
well when applied in community work.
Therefore, while care organisations must demonstrate
evidence-based frameworks for decision-making, it
should be understood that the reality of collaborative care for vulnerable people is extremely complex.
So decisions about contentious risk issues must be
opened up to a broader discussion than just narrow
corporate conceptions of risk. Otherwise disability
services may become more and more risk averse and
defensive45.
Just as organisations may need to broaden their discussion of choice vs risk, so family carers may find it
difficult to envisage and discuss pathways to choice
and independence where there are inherent risks. This
is natural due to the protective desires that arise out
of love and genuine concern. Sometimes it may also
be lack of understanding of the options. Sometimes
over-protection can even arise out of deep grieving for
a child or relative’s situation.
Community participation and
inclusion
Baptcare also places a high value on assisting people
with disabilities to become more connected in their
communities. Sometimes this focus on social inclusion
and community engagement can shift the emphasis
from risk management to a greater stress on providing opportunities for life-expanding activities. In the
same way that most people in the general population
are able to participate in communal activities which
involve an element of risk (such as sport), so people
with disabilities should not be barred due to physical, psychological, emotional or mobility concerns.
Wherever possible, Baptcare will aim to foster creative
solutions to overcoming barriers to a person’s participation in the life of their community.
An intellectually disabled teenage boy wanted to participate in sport. However, family issues meant that the
only reliable option for him to regularly attend practice
sessions seemed to be transport financed by his disability package. However, the Baptcare worker contacted a
team in the local community which partnered him with
a team member of the same age and locality whose
family was willing to pick him up as they would any
other participant. Using natural community supports
rather than paid workers for transport led to greater
social inclusion, expanded relationships, and normalised
his sporting involvement.
(Baptcare case study – some details changed for privacy.)
42 Baptcare, 2012
43 Baptcare, 2012
44 Brett, Moran, Green & Sawyer, 2009
45 Brett, Moran, Green & Sawyer, 2009
Disability Conversations – The Dignity of Choice, Control and Risk
Conclusion
At this time of cultural change within the disability
sector, Baptcare welcomes the greater freedom of
choice inherent in the establishment of the NDIS and
the National Disability Insurance Agency, as well as
recognising the ongoing important contribution of
the Disability Gateway in Tasmania, the Victorian disability framework, and new models of consumer-directed care.
Baptcare advocated for and continues to strongly
support the national rollout of the NDIS. Baptcare’s
participation in the NDIS trial site in Tasmania has
reinforced our view that the NDIS provides new and
important opportunities for people with disabilities to
gain the level of care and support they need to fulfil
their aspirations for a productive life in the community.
Therefore, Baptcare urges the Commonwealth and
State governments to continue their bipartisan
national commitment to the rollout of the NDIS –
and to provide the funding required for services to
expand to the level required to meet the demand. This
demand is evidenced by the number of Victorians on
the Disability Support Register, which jumped from
3,949 people in June 2013 to 4,392 in June 201446.
We see it as vital that state governments continue to
provide funding for the current system of disability
service provision until such time as the NDIS rollout
has adequately covered their regions, so that people
with a disability do not find their options shrinking.
In all systems and locations in which we work,
Baptcare continues to be committed to assisting
people with disabilities to gain the best access
to services which meet their needs and support
their goals.
Baptcare is particularly committed to supporting
low income and disadvantaged people with disabilities. We believe that those people living on
the margins of our society have the same inherent dignity and worth as the general population
– and the same right to exercise individual choice
and take risks in life in order to pursue their individual goals.
46 National Disability Services, 2014.
NDIS Trial, Tasmania
The first stage of the NDIS in Tasmania
started July 2013, providing support for
young people (aged 15–24) with significant
and permanent disability. This trial aims
to provide valuable information on how
to best support young people transitioning from school to further training and
employment.
“From Baptcare’s perspective, it’s been
incredibly rewarding to be involved in the
rollout of the National Disability Insurance
Scheme in Tasmania. What we are seeing
are many, many young people with much
greater options available to them. They
have money to support being able to go
into education and employment options,
to go into training. They have a whole
range of different supports available to
them and to see the difference it is making
in the lives of quite vulnerable Tasmanians
is just an incredible moment.”
“From our perspective we know that being
a community based organisation we’ve
really contributed to those outcomes by
being embedded in the community and
supporting people with disability to really
have much more choice and control over
their lives.”
—Baptcare Family and Community
Services, Tasmania
15
Baptcare Social Policy Position Paper
16
Policy Response
1. Baptcare
1.1. Baptcare recognises the creation of a National
Disability Insurance Scheme (NDIS) as the most
important disability policy and program initiative in a generation.
1.2. Baptcare affirms our strong support for the
implementation of the NDIS and is committed
to taking up opportunities as they present to
participate in its roll-out around the nation.
1.3. Within its own service delivery to people with
disabilities, Baptcare is committed to:
• working towards equality of outcomes for
people with disabilities in the areas of consumer choice and control
• deepening our capacity to effectively
respond to clients presenting with complexity and diversity within an increasingly consumer-driven disability sector
• balancing organisational risk management
concerns with our commitment to consumer choice and control so as to maximise client opportunities for meaningful life choices
• working with advocacy organisations and
supporting the rights of people with disabilities to have personal advocates assist
them in their negotiations with their service
provider
• promoting opportunities for greater social
inclusion and community engagement for
people with disabilities.
2. Commonwealth government
2.1. Baptcare welcomes recent reiteration of federal bipartisan commitment to the implementation of the NDIS and urges the Commonwealth
to ensure adequate finance is made available
to allow an effective roll-out across the country in a timely manner.
2.2. Baptcare expresses concern at recent government warnings about the need to contain
average individual package costs and urges
the Commonwealth to ensure this does not
inhibit recipients from exercising genuine
choice in how the NDIS services their needs.
2.3. Baptcare urges the Commonwealth to provide targeted block funding for supported
decision-making, including individual disability
advocacy services – so as to maximise informed
choice.
3. The Community
Baptcare urges local government, churches and community groups to ensure their property and programs
provide equality of access and participation for people
with disabilities; and that they actively seek to engage
with people with disabilities in order to offer friendship and integration into the community and to foster
social inclusion.
Disability Conversations – The Dignity of Choice, Control and Risk
Appendix – A Theological Perspective
Baptcare’s Christian heritage deeply informs our current practice and attitudes. In the time of Jesus, social
exclusion stemming from deep and persistent disadvantage was a part of everyday life. Jesus acted decisively, repeatedly and radically to restore the dignity
of disadvantaged individuals and to enable their full
participation in society. Jesus called for this kind of
behaviour to be a benchmark of true leadership.
Social exclusion was systematised and pervasive in
first century Middle Eastern life. Any person with a
skin disfigurement, an untreatable illness, a mental
condition or a permanent disability was unable to
live amongst others and unable to participate in any
work. If they did not have family to bring them food
they would starve. Further the religious system codified their plight by ensuring that people who had any
contact with them would have to undergo an elaborate cleansing ceremony before they were re-admitted
into everyday life.
Jesus refused to be bound by these practices. He
would routinely go to the excluded person and touch
them, eat with them and meet their need. He usually
met their immediate need by removing whatever it
was that had cast them out of society (illness, impairment, mental illness). He also went further and deliberately did things to restore them to the centre of their
community. For example, he would give them a job to
do, or a message to deliver or make them the centre
of attention or eat at their house. There is no record
of Jesus EVER undertaking religious cleansing after an
encounter with anyone. In fact his teaching makes
clear that the excluded person and the margins where
they live are the centre of God’s community and a holy
place, so it is those who vilify marginalised people that
are the ones in need of cleansing.
Baptcare, inspired by Jesus, seeks to include and
normalise the lives of those pushed to the margins
by everyday society and to see the hidden peoples.
Baptcare is committed to bringing everyone into the
places of life as respected social participants. Baptcare
believes true ethical leadership is demonstrated by a
commitment to social inclusion.
—Rev Olivia Maclean,
GM Mission Development, Baptcare
17
Baptcare Social Policy Position Paper
18
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© Baptcare 2015. This Baptcare Social Policy Position Paper
is the first in a series of Disability Conversations.
To ensure confidentiality, photographs contained within are
not of actual Baptcare clients.
Baptcare Central Office
Ground floor/1193 Toorak Road
Camberwell VIC 3124
(PO Box 230, Hawthorn VIC 3122)
Phone: 03 9831 7222
Fax: 03 9831 7272
Email: [email protected]
www.baptcare.org.au
“Baptcare” is a registered trade mark of Baptcare Ltd. “Bringing care to life”
is a trade mark of Baptcare Ltd. ABN 12 069 130 463
Notes
Disability Conversations
The Dignity of Choice and Risk
Baptcare Central Office
Ground floor/1193 Toorak Road, Camberwell VIC 3124
(PO Box 230, Hawthorn VIC 3122)
Phone: 03 9831 7222
Fax: 03 9831 7272
Email: [email protected]
www.baptcare.org.au
Baptcare proactively responds to human need to create positive change through advocacy, a diverse range of
services and community engagement. Baptcare supports children, families, people with a disability, financially
disadvantaged people and asylum seekers, and provides residential care and community care for older people.
Baptcare works across Victoria and Tasmania.
“Baptcare” is a registered trade mark of Baptcare Ltd. “Bringing care to life” is a trade mark of Baptcare Ltd. ABN 12 069 130 463