Current systems of care for young people living with severe disability
This chapter discusses the following terms of reference:
(c) the health and support pathways available to young people with complex
(e) alternative systems of care available in federal, state and territory
jurisdictions for young people with serious and/or permanent mental, physical
or intellectual disabilities; and
(g) what Australian jurisdictions are currently doing for young people with
serious and/or permanent mental, physical or intellectual disabilities, and
what they intend to do differently in the future.
Service delivery and transition
A siloed approach
Most of the young people who are the subject of this inquiry have a
range of complex support needs.
These complex support needs can range from healthcare (including acute care,
rehabilitation, primary health care), housing, on-going daily care (ranging
from housekeeping tasks such as shopping to being turned in bed or showered),
and access to supports (such as wheelchairs and hoists). Most of these tasks
are deemed mainstream services, that is, everyone's expectation—regardless of
ability or disability—is to be able to access healthcare, housing and to eat a
meal in their own home. Some of these tasks are deemed specialist disability
services such as access to supports and to disability support personnel. There
are also other support services that cross-over between the mainstream and
disability sectors such as rehabilitation and housing—including housing people
with disability within the aged care sector. In their submission, Developmental
Disability WA (DDWA) and People with Disability WA (PwDWA) say that:
By the very nature of their needs, young people with complex
needs are more likely to be at the interface between the disability support
system and mainstream supports and services.
Due to the complexity of their needs, one of the difficulties that young
people and their families face is navigating the many different departments and
agencies in order to cobble together the services that are required. DDWA and
PwDWA note that 'pathways between human service systems are inherently
difficult to navigate'.
The committee received a significant amount of evidence indicating that
many state, territory and Commonwealth departments operate within a silo,
independent of the other agencies and departments around them.
Dr Bronwyn Morkham, National Director of the National Alliance for Young People
in Nursing Homes noted that governments at all levels have not articulated a
standard (or series of) pathways for all agencies to follow when seeking to
place a young person in long term accommodation:
It is not just about information and the lack thereof. There
is no clearly articulated pathway for anybody to go down. So health does not
know about a pathway; it stops at the hospital door. Disability does or does
not pick it up, and it has its particular pathway. But there is no integrated
pathway for families, for clinicians, for anybody to look to, to do that with.
Ms Sue Hodgson, a mother of a young woman, describes the 'twenty years
[that] was spent working my way through a minefield of systems'.
Other witnesses describe the apparent abdication of responsibility by some
agencies. For example, Daniel Everingham 'is not even eligible for funding for
a wheelchair while he is in the nursing home as this is only available if he
goes into a group home or lives at home.'
The perversity of this outcome is reinforced further when the logic of why he
lives in a nursing home is considered:
It seems inconceivable that Daniel can be in receipt of
disability services from the NSW government but denied access to essential
equipment just because he is in a nursing home. The fact he is in aged care
because the [NSW Government Ageing, Disability and Home Care] cannot provide a
suitable housing option, which then makes him ineligible for equipment services
just adds insult to injury.
This example aptly illustrates how a young person requiring
multiple services can slip through the cracks.
There seems to be limited or no co-ordinated approach between the departments
and agencies—housing, disability services, the National Disability Insurance
Agency (NDIA)—that offer relevant services for Mr Everingham to ensure
that he receives an acceptable service outcome—his own wheelchair.
Dr Morkham elaborated on how different departments abdicate their
responsibility to the individual:
So when the NDIS [National Disability Insurance Scheme] looks
to Health and says, 'Here is someone with a health need—Health, you deal with
it,' Health says, 'Hang on a minute—we have a very limited budget, we are
overwhelmed already, we are under-resourced; we don't have anything to offer
you; back to you, baby.' Back over it goes to the NDIS, who then says, 'But Health,
you are legislatively responsible for this: you step up.' We have this butting
of heads again. We continue to go round in that circle...
Ms Lyn Morgain, Chair of the National Complex Needs Alliance,
explained that this occurs due to the 'jurisdictional push-pull between levels
Once somebody is in a particular facility funded by a certain
level of government with a certain scope of responsibility, there can be a
reticence on the part of another level of government to provide much-required
supplementary support. That is your first level of responsibility shifting—the
'blame game', if you like.
In their submission, Developmental Disability WA and People with
Disabilities WA went further describing each department or service system as
Each service system is effectively designed to 'gate keep'
access to it and each system is primarily focussed on addressing the needs that
specifically relate to its particular focus and trying to distinguish between
different needs within the same individual person. This is profoundly obvious
in the experience of young people with disabilities who have complex needs who
by the nature of their needs tend to need to access multiple service systems
and who as a consequence of their complex needs tend to experience significant
challenges in navigating these systems independently.
One family spelt out what this lack of support translates into for an
My experience with [the Victorian Department of Human
Services] was really disappointing. I spent hours on the phone just to be told
there was nowhere except RAC[F] for Emily. I contacted Mary Wooldridge, the
minister for disability services, via a radio program. She passed me onto her
representative who took three weeks to get back to me. This representative
passed me onto yet another representative. I finally received a phone call from
the latest representative while collecting my grandchildren from school. The
representative cemented their stance that there was "nothing" for Emily.
I felt disgusted and angry and I noticed that everyone in the schoolyard had
turned around to look at me. All I remember saying was "How can it be that
there was nothing 16 years ago and there is still nothing now? Why is there
nothing?" The next day I received a twelve page document with nothing but
RAC[F] facilities for Emily. Emily is now living in RAC[F] where she doesn't
want to be.
Within some state governments, there is an apparent disconnect between
what the relevant disability agency believes is being delivered and what
clients actually perceive as being delivered on the ground. Dr Ron Chalmers,
Director-General of the Western Australian (WA) Disability Services Commission
(DSC), stated that WA is providing information and support to young people:
Through a whole range of processes, including the statewide
local area coordination [LAC] system and now the rollout of NDIS My Way, the
focus is on not just giving people a list of where the different houses are
around the state, which I think might be useful for some, but I think, more
importantly, having confidence that people who are seeking a particular style
of support arrangement get good quality information about the range of those
services and supports...
A local area coordinator employed by the Disability Services
Commission regularly liaises with social workers in that hospital setting. 
This in stark contrast to evidence received in the same hearing from
non-government service providers:
[S]o there are some LACs who have extremely good relationships
with families, who know exactly what is available in their area and who can
point families towards organisations. Then I have come across families in the
community who were not even aware of what an LAC is, or where they should go
and what they should do.
Improved co-operation and linkages between the silos of service delivery
is crucial. In the discussion paper, Cross sector service co-ordination for
people with high and complex needs: Harnessing existing evidence and knowledge,
cross sector co-ordination is noted as being:
[A] critical scheme design element to ensure that NDIS
participants get the range of services and supports they need to pursue their
goals and participate in society and the economy. Any failure of other sectors
to provide access to quality services will increase the costs of disability
support and risk the sustainability of the NDIS. Coordination can thus also be
seen as a way of addressing this fundamental risk facing the NDIS. For these
reasons cross-sector coordination should be a core element in NDIS design.
Cross sector service should include the following elements:
high level inter-sectoral collaborative agreements and related
infrastructure (macro level) so that system barriers do not undermine NDIS aims;
coordinators actively negotiating between sectors and services to
ensure people obtain the necessary supports: a range of local and
cross-sectoral mechanisms enable coordination activities; and
agreed goals focussed on outcomes for people, including social
and economic participation.
The next sections will explore how young people access services within
each of the silos—primary and allied healthcare, aged care, disability and
housing—and the current transition process.
Many, but not all, young people described in this report begin their
journey with disability in the healthcare system. The previous chapter
highlighted how an informed transition with adequate supports results in more
sustainable and higher quality outcomes for young people including living where
they want to live and living their life in a way that matches their capability
and ambition. This section will focus on the reasons that many young people
migrate directly from the health system to the aged care sector.
Mrs Fiona May of the ACT Disability, Aged and Carer Advocacy Service
argued that the primary driver for the health system to move individuals
occupying hospital beds—specifically acute care beds—is cost. The health system
views young people with disability living in a hospital as 'bed-blockers' and as
such seeks to move that young person elsewhere to free up the bed. Mrs May
There is one other thing I would like to add to that, and it
is about people who are in the hospital system and on the fast-track pathway to
nursing home care. What we know is that, for people who have a catastrophic
injury, a stroke or another event that pushes them into hospital, once their
health issue is to an extent stabilised the hospital system is incredibly keen
to move them out of the hospital bed. The hospitals call them 'bed blockers'.
The hospital system puts a lot of pressure on the social workers within
hospitals to find alternative places for people to go, and generally nursing
homes are the only open door. So we find that we are doing quite a lot of
advocacy in that setting to stop people from being pushed into a nursing home.
The committee received evidence that young people end up staying longer
than they should in the acute care system due to a lack of options:
The bed blockages in the rehabilitation services (or
downstream blockages) mean that pressure starts to build up in acute hospitals
to the extent that the next wave of people with ABI [acquired brain injury]
have nowhere to go once the acute phase of their care has passed.
The Office of the Public Advocate (Queensland) noted that 'it does not
make good economic sense to care for people in acute hospital beds, for
example, when the same person could be receiving more appropriate support in a
community based setting at a significantly reduced cost'.
The Victorian Department of Health and Human Services defines the actual cost
in an acute ward at between $473 and $824 per bed day ($172 645–$300 760 per
This compares with a cost of approximately $70 000 per annum for an aged care
Although these costs are directly borne by different levels of government—state
governments pay for hospitals and the Commonwealth pays for aged care—it is
salient to note that the cost of providing care in hospitals is more than aged
In turn, the provision of aged care costs more than providing similar services
in the community.
Every example is different; however, Table 4.1 below compares two
similar cases assessed by the Office of the Public Advocate (Queensland)—one
remained in the acute system, the other began to receive rehabilitation support
at the optimum time—and gives a sense of proportion to the costs imposed on a
congested acute system. For case study 1, the cost to both the individual and
the system is significant. Case study 1 remains in the acute system, not
receiving any rehabilitation services at a total cost of $1 200 per day,
whereas case study 2 is living in the community and receiving rehabilitation
support at one third of that cost.
Table 4.1: Estimated costs of delayed transitions through the
Office of the Public Guardian (Queensland), Submission 134, p. 8.
Quarterly Brain Injury Services Meeting (QBISM) Group, A Comprehensive
Service System for Queenslanders with Brain Injury, Positioning Paper
In its submission, Headwest stated that a lack of appropriate facilities
leads to young people with disability being moved from the health system into
residential aged care facilities (RACF):
The health and hospital systems in WA are unable to
accommodate individuals indefinitely while waiting for a suitable alternative
to become available. Lack of appropriate and timely access to rehabilitation
and transitional services puts additional stress on an already stretched
system. This further increases the pressure to discharge young people as
quickly as possible. In this environment, the only option often available is
through the aged care sector...
In WA, there are few hospital based rehabilitation and
transitional services and even fewer non-hospital services such as provided by
Brightwater Care Group.
The committee also heard that many 'people with ABI, while waiting for
appropriate rehabilitation services, spend their time in acute hospital beds,
without receiving the important rehabilitation they need'.
The committee received evidence from Alfred Health indicating that if dedicated
resources made available to young people whilst in the health system—from
injury to discharge and as they transition away from the health system—can make
a substantial difference to whether that person ends up in RACF or in other
accommodation. Alfred Health works at the interface between the health system
and the community to ensure adequate and appropriate rehabilitation services are
provided to optimise the transition process.
Mrs Janet Wagland of the Brightwater Care Group noted the need for
greater communication and co-ordination between different departments at the
Really what should happen is that there should be a closer
connection between the hospital system and the Disability Services Commission
or the disability system that is relevant in every state. There is a very large
disconnect between both, and many of the people we see who have a newly
acquired disability—and often a very complex newly acquired disability—have no
understanding of any disability system. They have never been connected with it,
and before they know it they have an ACAT and are in a nursing home. They do
not even know how to apply to the Disability Services Commission. Their
families do not understand. The hospital system is such a fast-track system by
necessity—because it is around people who are acutely unwell—that they cannot
keep people in their beds for too long; otherwise, there are no places for
At its Melbourne public hearing, the committee received evidence about a
successful Canadian scheme—Alberta Assessment and Placement Instrument—which
utilises a 'nationwide assessment and placement protocol for young people
deemed to be at immediate risk of aged care placement', which 'enables the most
appropriate rather than the most immediately convenient recommendation for
This type of scheme will be discussed in later chapters.
Evidence to the committee suggests that there are many young people
presenting to the health system with an ABI or TBI. In some cases, these young
people and their families have no previous experiences with disability or the
disability sector and, as such, are in many respects guided almost entirely by
the health professionals within the acute system. Current decision making
processes around transition from acute care to other options including aged
care are poorly informed. The committee is concerned that young people, with
little knowledge of other accommodation or transition options are being moved
into aged care. The committee is also concerned that the health system itself
is not aware of other accommodation or transition options and is operating in a
silo removed from other government agencies and service providers such as
disability and housing. It is the committee's view that a more comprehensive
assessment tool, such as the Alberta Assessment and Placement Instrument needs
to be established and utilised in the health system. This will ensure that the
support and accommodation requirements in the short and longer term—including
the likely journey of transition and placement—are clearly identified and understood
by young people, their families, and state and Commonwealth Governments.
The next section will examine the role of support services both in the
health and aged care sectors.
Rehabilitation and other health
The lack of access and the inadequacy of rehabilitation services in hospitals
and RACF is highlighted in Chapter 3. Many submitters and witnesses discussed
the importance of rehabilitation in helping young people with severe
disabilities regain independence. In its submission, Leading Age Services
Australia (LASA) raises the concept of 'reablement' rather than rehabilitation,
stating that this is:
[G]enerally focused on short-term, targeted intervention and
is about bringing a person to their full potential, to accommodate their
illness by learning or re-learning the skills necessary for daily living...
Further, LASA notes that this is difficult to fit within the
[RACF] currently follows a medical model, and is geared to
support the resident with the illness and frailty they live with, not to
rehabilitate to a pre-existing level of fitness.
Mrs Helen Barker, mother of Angela, said that 'rehabilitation is the
most important thing'
and that poor access to rehabilitation shortly after acquiring or developing a
disease or disability resulted in delaying a young persons' pathway to
independence or reaching independence at all.
One witness described the despair that some young people feel having made
substantial progress with rehabilitation in hospital only to suffer a fall and
be told they will be moved into RACF with little or no access to
The committee received evidence describing the importance of integrated
slow stream rehabilitation programs to some people. Slow stream rehabilitation
is a specialist program designed for those who are likely to have longer term
and more complex rehabilitation needs yielding incremental progress.
Mr Peter Bewart of The Salvation Army noted:
We also advocate that step-down units attached to hospitals
and transitional living services that provide slow stream rehabilitation are critical
within this area of care need. These services would give young people at risk
of admission to residential aged care the time and services they require to
recover and maximise their abilities in activities of daily living, thereby
decreasing the dependence on the service system. Indeed, traditionally, aged
care has not had a rehabilitation culture, focusing on supporting people with
limited capacity and often unable to meet the complex social and rehabilitative
needs of younger people.
Further, Ms Lyn Morgain of the National Complex Needs Alliance noted the
Alliance's 'concern about the inadequacy of funding' for this type of
rehabilitation and asked which agency would accept funding responsibility with
the introduction of the NDIS.
Despite the lack of funding, there are some good examples of slow stream
rehabilitation working in a range of settings. Brightwater Care Group (BCG), a
Western Australian based aged care provider, operates a range of rehabilitation
programs specifically for young people with severe disabilities. These include:
additional Care Subsidy Scheme—additional services within RACF;
Long Stay Younger Person Program—'transitional support and
interim accommodation for people with complex disability unable to discharge
from the metropolitan hospital system'; and
Oats St Rehabilitation Program—'a residential and community based
rehabilitation program for people with a diagnosis of neurological disability,
due to ABI. The program has a strong focus on Cognitive Rehabilitation Therapy
and goal directed individualised outcomes'.
Endeavour House—'shared supported living in a high care
environment conducive to supporting people with brain injury who have
extremely complex care and health needs'
In their submission, Greystanes Disability Services described the mobile
health team they operate in the Blue Mountains region of NSW, with expertise in
supporting people with intellectual disability, consisting of nurses, a
physiotherapist and a dietician. This support is provided to people in their
home. Greystanes focuses on Person Centred Active Support (PCAS) 'as the
framework for how staff work with and assist the people they support.' Further:
Research has demonstrated that people with severe
intellectual disability can spend eighty percent or more of their daily awake
hours disengaged and not involved in any meaningful activity and that
disengagement is a leading cause of challenging behaviour. PCAS is about the
skills and capacity of staff and the service in enabling engagement of the person
with a disability in meaningful activities and relationships. This is an
evidence based approach that focuses on ensuring people, no matter their level
of intellectual disability, spend their time engaged in meaningful activities
and relationships and experience choice and control as valued members of the
Rehabilitation should not be seen as a generic static service; it should
be a dynamic service reflecting an individual's capacity, ambition and the
nature of their disability. It should be delivered as an evolving holistic
service focusing on the fundamentals initially—such as prevention of
contractures, continence training, speech pathology (communication and
swallowing)—with the ultimate objective being to facilitate socialisation and
reintegration of the young person into the community in a way that they feel
valued and can contribute according to their capacity.
The role of the health system in transitioning young people with
disability to the aged care sector as a default option has been considered in
the previous section. This section will examine the role of the Aged Care
Assessment Teams in facilitating that transition and also some of the obstacles
for those seeking to transition from RACF to other forms of accommodation.
Aged Care Assessment Teams
An assessment from an Aged Care Assessment Team (ACAT) must be
undertaken prior to a person of any age being granted funding for short stay
(respite care), transition care and longer or permanent positions in RACF.
For those aged under 65, ACAT must contact the state or territory government
and be 'satisfied that there is no other alternative' before recommending a
Graham Prior, CEO of Hall & Prior, described ACAT as the gatekeepers of the
system ensuring that 'people in need are identified and placed appropriately in
care, in community, in mental health or into aged care':
These people are the eyes and ears out in the community,
working with doctor's surgeries, working with social workers and they are very,
very skilled and very focused on finding pathways for most people in care today
In theory, the ACAT process ensures that no young person is
inappropriately transferred to live in RACF if other community options are
available. Although this works in some cases, the committee has received
evidence suggesting that this process is not a failsafe. Mrs Rosenthal of the
Salvation Army agreed with Mr Prior's assessment of ACAT, however, noted that
changes to the Commonwealth Home Support Program has resulted in the loss of
complex case management services. The loss of these services decrease the
likelihood that a young person with complex needs will successfully transition
to live in the community.
In WA, Ms Laurence of the Brightwater Care Group noted that despite the
ACAT process it is possible that 'there is no actual registration within the
Disability Services Commission that that person has been given an ACAT or in
fact that they exist'. The young person is moved into RACF 'without any ongoing
follow-up or any ability to apply for funding unless somebody within the
aged-care facility then follows through that more formal process'. It is not clear whether or not there is a
requirement to review the initial ACAT recommendation either at a fixed
interval or when an individual's circumstances change.
The committee notes that despite its shortcomings, ACAT fulfils a
gatekeeping process and with further refinement may prove to be integral in
diverting new admissions of young people into aged care. This will be discussed
further in chapter 6.
Transition from RACF
The committee has received a range of evidence outlining the impediments
for young people seeking to transition from RACF to other forms of
accommodation. The previous section has discussed the role of rehabilitation
and other services, highlighting that the absence of appropriate access to
support hampers the ability for young people to maintain or regain their
The committee received evidence that described many young people developing
a learned dependency by living in a RACF. This loss or lack of independent
living skills for young people with complex disabilities can often prove
decisive in determining whether a young person lives independently or in a
RACF. Ms Vicki Wilkinson shared her experience when moving from a RACF to the
It was an hour by hour, minute by minute experience. The idea
of living a normal life in the community was just so far away. It was still so
foreign. It is like you know that normalcy is somewhere there just beyond your
fingertips. You can almost smell, taste, and feel it, but you just can’t manage
to get a grasp of it. It is like you are searching around in the dark for the right
steps, the right levers to get you to where you know you should be and could
It really is like you are groping aimlessly in the dark,
every lead of potential information you grasp for dear life...... because there is
no manual to guide your transition from a high care, institutional nursing
home, back into the community.
There is not a How to Guide in community reintegration!
Often the ability to live independently hinges on quite fundamental
aspects of living:
I have come to realise there were things that I took for
granted in the nursing home, now I’m out, without regular care, I have realised
that really I have no idea.
Who do you call when your catheter comes out? Who do you
ring? Who can you rely on?
A basic continent aid, can be the undoing of you. In the
nursing home I didn’t need to know what size catheter I used, where to get it
from nor how to use it. It always just arrived when I needed it. This
institutionalisation of myself has led me to being unknowledgeable and
ill-equipped in the community. My lack of knowledge on my own simple
necessities now creates a barrier between people that can assist me. I can’t
tell them exactly what it is that I need.
Terry Bainbridge currently lives in a nursing home, but spends up to 4
nights a week at home living with his brother. Mr Bainbridge is able to do this
through funding of support services which provide 5 hours of support per week—1
hour of speech pathology, 2 hours of physiotherapy, and 2 hours of occupational
therapy. With some additional support services funded through his individual
support package, he could live at home fulltime:
The barrier to getting him home is getting his ISP funded, we
were told that getting him home would save the Government around half a million
dollars. When he does come home he will save money. At the moment he is paying
$1450 per month for aged care fees. If he was at home he would pay about $1000
a month for rent food and bills.
The committee also received evidence that RACFs should be viewed as a
valid transition option when there are genuinely no other options available.
However, this transition should only be engaged with clear entry and exit
provisions (detailed in a care plan) for young people. MS Australia recommends
We need to create articulated pathways of care to delay young
people from entering residential care prematurely. Where appropriate move young
people currently residing in nursing homes into age–appropriate accommodation.
[We need to] provide support to young people who remain in aged care settings
to facilitate enhanced recreational, social and community participation.
Positive stories of successful transitions to independent living from
RACF were also heard by the committee. Mr Ben Thompson moved into a YPIRAC
funded shared supported accommodation after living in a RACF for three years.
He has access to support services such as physiotherapy and speech pathology,
and is supported by a key worker who helps co-ordinate his care. Mr Thompson
has noted substantial improvements since then:
I see my physio three times a week. I was getting physio just
two times a week in the nursing home. I am so motivated with my rehab. I have
begun walking with a frame and I can now walk in the pool. It feels tremendous.
I would do physio everyday of the week if I could. I would also do more speech
therapy; I currently see my speech therapist once a week. I am re-learning to
speak. It’s so much better to communicate now, not such a long process. It
makes me feel normal now that I can communicate by talking. When I moved out of
the nursing home, I stopped being Peg-fed and was able to eat again too!
As discussed earlier in this chapter failures within the service system
can lead to family playing a decisive role in determining the success or
failure of transition. Ms Lauren Bellert's husband, Michael, moved from a RACF
to a shared supported accommodation late last year. Michael's doctor described
Ms Bellert as 'tenacious' and integral to this transition:
Without me, visiting [Michael] with [our daughters], fighting
for his rights and assisting him with regular physio with outside specialists
Michael would not have come as far as he has or continue to make progress. The
system tries to fit everyone into neat boxes but the reality for every
situation is different and needs to be assessed accordingly. I noticed
improvement in the first week of Michael leaving the nursing home, which makes
me wonder how far he may have come, if only he was transferred there from the
In noting the important role ACAT plays as the gatekeeper to every
person admitted to RACF, it is the committee's view that the ACAT process needs
to be refined to ensure that if aged care is used, it is only used as a
transition after a clear entry and exit plan is put in place. In order for
transition to be a realistic objective, it is imperative that young people are
able to remain independent, have access to allied health services—such as
speech pathology and rehabilitation, and access to a key worker to help
facilitate the process. It is the committee's view that the key worker should
be engaged prior to the young person entering aged care as this will ensure
that an informed decisions will be made. Key workers will be discussed later in
this chapter and in Chapter 5.
Lack of suitable housing is a key constraint for young people seeking to
transition from the health and aged care systems. In its submission, National
Disability Services noted that 'demand for specialist disability accommodation
exceeds supply' and that it should be a priority to 'improve access to housing
options that are affordable and provide security of tenure.'
Mrs Nicola Rosenthal of The Salvation Army went further saying that the
provision of service is futile if accommodation options are not available for
We can slow-stream-rehab people as long as we like, but, if
there is nowhere to go, there is nowhere to go.
Security of tenure is important if young people are to use part of an
ISP to build access and mobility supports within a house or unit.
Some submitters noted that mainstream public housing should be made more
available for young people as this would help free up specialist disability
housing for those most in need.
Focus ACT raised the impact of housing affordability on housing options for
young people seeking to move from or avoid being placed in a RACF.
Public housing waitlists
There are other factors that challenge young people seeking to live in
the community. One submitter, Ms Sam Petersen, related her story about being
hospitalised and receiving rehabilitation after suffering a stroke. Ms Petersen
was in hospital and rehabilitation for a period of five months. During this
time she was forced to give up her public housing unit. After recovering to a
state where she could return to independent living, she has instead been forced
to move into a RACF until public housing becomes available again. This has led
to Ms Petersen receiving less support services and feeling very uncertain about
The committee is concerned about the apparent low priority given to those with
severe disability on public housing waiting lists.
Integrating housing and support
Integrating housing and supports reflects the movement of disability
policy from a nursing model to one of person-centred support under the NDIS.
The key to person-centred support provision revolves around accessible housing
and adequate in-home support.
Australian Home Care Services noted that 'appropriate supports and appropriate
capital to provide suitable housing options result in many people report[ing]
improved life experiences'.
The committee received evidence about the Combined Application Process
(CAP) administered by the Western Australia Disability Services Commission
(DSC). CAP funding, if approved, can be used to fund support services and
accommodation. Mrs Gail Palmer noted that 90 per cent of those who apply for
funding are not approved. Further, Ms Palmer noted the process for those with progressive
and degenerative illnesses:
It was noted many years ago now—about six years ago—that for
a certain group of people who were rapidly deteriorating the process was
inadequate and unfair. They would be developing a disease such as motor neurone
disease, be rapidly deteriorating and would put in an application to the
commission. Perhaps they would be knocked back the first time and the second
time. By the third time they may be accepted, but by then their needs were so
critical that they had already entered a nursing home or even died from their
condition. The family was destroyed by having to care for them.
For those who are successful in obtaining funding, access to supports
and accommodation services is not necessarily any easier. Ms Kirstine Bruce
lodged a funding CAP on behalf of her daughter, Ms Ariana Pila. This
application was successful, however, Ms Bruce pointed out that no support was
provided to link Ms Bruce and her daughter with a service provider and that Ms
Pila has been unable to find accommodation:
Ms Bruce: Yes, they have been to see us. We have
got—what is it called?
Ms Foulds: The CAP funding.
Ms Bruce: Yes, the CAP funding. So now it is just
sitting and waiting for somewhere for her to go, whether it be Rocky Bay or
Nulsen or whether it becomes home.
Senator Reynolds: Have they left that up to you, or
what is your understanding of the process? You have the potential for funding,
but has anyone explained to you what the process is from here?
Ms Bruce: Basically, we have just applied for
government housing, and now we just sit and wait until something comes up in
Senator Reynolds: Is Brightwater actively looking for
somewhere for her to go where she can get accommodation or rehabilitation?
Ms Bruce: Not that I know of.
Senator Reynolds: And the Disability Services
Commission is not doing that either?
Ms Bruce: Not that I know of.
Senator Reynolds: So you have got to a certain point there with them.
Ms Bruce: And it is on a standstill, yes.
The committee notes the need for improved linkages between
individuals and providers.
The different needs of young people are not just measured at one point
in time, but should be measured across a lifetime. A person's continuum of care
or care requirements over a lifetime reflects a person's age and their
disability or disease. Just as care and support requirements will change over
time, so will the type of accommodation a young person will want to live in
during these different life stages.
The Continuous Care Pilot, undertaken by MS Australia and Calvary Health
Care Bethlehem, was a scheme that sought to recognise the 'continuum of care'
operating from 2008–2010. This pilot targeted young people with chronic
progressive neurological diseases who were at risk of entering RACF. This pilot
sought to 'work collaboratively and in partnership across service areas in
health, disability, aged care and community services; and utilises a proactive,
preventative approach to service interventions that ensures existing resources
are used in a timely and more effective manner than may be possible
The committee notes that continuous care does not end once a placement is
found, instead there is an ongoing process of assessment and review with a full
understanding of the particular risks a person may have. Accommodation is a
critical component of continuous care. Figure 4.1 below illustrates the model.
Figure 4.1: Model of continuous care
MS Australia, Submission 65c, p. 29.
MS Australia remarked on the importance of integrating housing and
Young people with progressive neurological disease such as
multiple sclerosis need an integrated housing and support model that is
tailored to their needs and offers access to support and health services, while
keeping them connected to the community.
The Summer Foundation noted several examples of integrated housing and
support services including the Square Woodville West Project (South Australia),
Cairo Southbank (Victoria), Abbotsford Housing Demonstration Project (Victoria)
and the Hunter Housing Demonstration Project (NSW). The Summer Foundation
described the Abbotsford Project:
In 2013 the Summer Foundation launched its first housing
demonstration project. This project has six accessible apartments for people
with high support needs peppered throughout a 59 unit mixed private and social
housing inner city development in Melbourne. The Summer Foundation purchased
two apartments for young people at risk of or in aged care facilities. The
Transport Accident Commission (TAC) clients tenant the other four accessible
This housing is centrally located, within 500 metres of a
train station and shops. This maximises independence and inclusion and
minimises transport costs and reliance on paid support staff. Use of home
automation technology and communication technology allows tenants to alert
staff of unanticipated needs for assistance. There is a small staff office that
provides a hub for support staff on site 24 hours a day.
Success in this project—as measured by increased levels of home, social
and economic participation—was attributed not only to the excellent location
'near accessible public transport, shops and recreation services', but to the
support received from a Community Inclusion Facilitator who offered support to
plan their transitions, test out new life roles and helped establish links to
Bricks and mortar—accommodation
options and funding
Throughout the inquiry, the committee has received evidence on the
suitability of accommodation for young people living with a disability. In its
submission, the Youth Disability Advocacy Service has defined 13 key benchmarks
or principles against which the suitability of housing and support for young
people with disabilities should be measured:
- Accessible quality housing
- Affordable housing
- Tenancy Rights
- Choice of where you live and with whom you live
- Investment in assistive technology
- Separation of tenancy from service provision
- Opportunity for friendships and sexual relationships
- Community belonging
- Choice of support staff
- Phased steps towards living independently
- Access to information and peer support
There are a range of different accommodation options available for young
people living with disability that are summarised in Table 4.2. Some of these
options meet all or most of these 13 basic principles.
Table 4.2: Summary of accommodation options for young people living with
Supported at home
Melba Support Services
Hospital and Extended Care
Residential Aged Care
Mt St Vincent Home
The last two of these options in Table 4.2—hospital and extended care,
and RACF—are only appropriate as transition options (with clear entry and exit
provisions detailed in a care plan) or where the young person has made a
conscious decision that these arrangements are best suited to their
circumstances. For example, a young person may choose to live in a Quadriplegic
centre for access to rehabilitation options with the goal of becoming
independent. Similarly, a young person may choose to live in a RACF in a wing
dedicated to young people such as at the Mt St Vincent Home in Ulverstone,
This inquiry has also highlighted that 'younger people with disabilities
are not an homogenous group':
[T]heir needs differ greatly and they have individual
interests and approaches to life. If the lives of these young people are really
to be enhanced as much as possible they need to have choices in regard to the
way they live, and in particular their accommodation. Some young people may
prefer independent living, others group homes, others supported accommodation.
Developing new models of accommodation and support which link in with aged care
would widen the choice for these young people and create real life communities
where different generations can mix as they choose.
It is important that housing solutions recognise the differing needs of
young people. In the ACT, the Community Services Directorate has developed a
Housing Options Program. This program utilises 'easily accessible Housing
Options Facilitators (HOF) who assist people with disability to identify and
develop housing options that best meet their individual need'. More than that,
the HOFs deliver the following practical solutions that actually match young
people with the accommodation that they want to live in:
assist by providing a housing options planning service to people
with disability, their families and advocates;
assist by working in partnership with community agencies who are
responsible for planning;
provide community education about housing options for people with
provide information tools including the housing options decision
The committee has been presented with examples of appropriate housing
models for young people with severe disability. The committee conducted a site
visit to the Rowallan Park facility, south of Hobart, and met a group of young
people with varying degrees of independence living together in a range of supported
accommodation types (see Box 4.1).
Box 4.1: Rowallan Park Intentional Community (Uniting Church)
The Uniting Church at Kingston (Rowallan Park) hosted a visit by the
Community Affairs References Committee and Secretariat on Thursday 12
March 2015 prior to the Hobart public hearing. The purpose of the visit was to
inspect the new accommodation constructed at this site for young people with
severe disability. This accommodation has a range of different supported living
options with a community feel.
The committee was presented with an overview of the project by Richard and
Janine Romaszko, Lucia Fitzgerald and other members of the Kingston
congregation. This project has been in planning for over nine years and was
inspired by the needs of the Romaszko's daughter, Elise, who has Down
syndrome. Elise would often ask her parents about the future:
'…where will my friends and I live?'
The congregation believes that this project is not simply about buildings, but
rather creating a series of inter-related communities—the community within the
house, the community within the site, and the interactions with the surrounding
community of Kingston. The committee heard that these types of projects
cannot only be about 'bums on beds', there must be a sense that these people are
valued as members of the communities that they live in. The overarching
principle of supported accommodation must be—'Would you want to live
here?'—as this is the basis of what builds a community.
The planning, capital funding, construction and on-going operation of the
facility was discussed. Rowallan Park adopts an innovative structure with the
Uniting Church as property owner, developer and landlord renting these units to
young people. Optia is the disability support provider that manages the support
services provided to these young people. Each young person is funded through
However, despite the success of the Rowallan Park project, there are a
number of issues surrounding this facility that illustrate some wider problems.
First, this facility has been operational since October 2014, yet still has
vacancies despite identifying suitable young people willing to accept a placement.
Reverend David Parker described the frustrations of the Uniting Church:
The person has been selected and we are now three months down
the track, and we still do not have the approval from the NDIS process. There
seems to be significant confusion and a lack of clarity around the objectives
and how you might run a business model that can provide service to customers as
opposed to being bureaucratic. I do not have the detail, but in principle it is
quite a significant issue right at the moment.
The second issue is the source of funding for the Rowallan Park
facility. Mrs Lucia Fitzgerald of the Uniting Church of Australia discussed the
funding source for the current development at Rowallan Park and then
highlighted impediments to future projects:
It was federal government money, and that gave certainty
around the whole project because the money was there for the accommodation. It
therefore allowed the state government to be aware of it, and they certainly
came through with the individual support packages as required. The issue now
with my portfolio is that we have available land to replicate the pilot
project, but we do not have the capital for the accommodation, because that
structure has now moved on; it is gone. We are now talking about what structure
is going to assist us to replicate this model. At the moment, if we attach the
capital with any type of individual person, there are problems. That is because
all of a sudden you have to herd people together and for a reasonable amount of
time, because a project, as Lindy said, takes a fair bit of time in planning
and to coordinate before you actually get the accommodation on the ground.
There, you see, is the problem.
The committee notes that the funding for this project was provided
through the discontinued Supported Accommodation Innovation Fund (SAIF) funded
by the Commonwealth Government. This fund delivered one round of funding in
early 2012 and was not continued.
[C]ommitted $60 million for 150 supported accommodation
places for people with disability. Projects included renovations to existing
homes, pooled resources to build contemporary accommodation services close to
community and health services, or the modification of established buildings.
Funding for this initiative ended in June 2014.
Block and individualised funding
Funding for disability support services in Australia has traditionally
been delivered as 'block funding'. Block funding is 'where a government or
contracted service provider is funded to provide a defined disability support
to a defined number of people or as many people as they can'.
In its submission, the Summer Foundation said:
The NDIS is a massive and complex reform. Unlike the existing
disability service system in Australia that is largely a welfare-based and
rationed model where people with disability are passive recipients of
block-funded services, the NDIS is a market driven system based on rights where
people with disability are empowered to make choices regarding services and
The NDIS aims to provide individualised person-centred
processes where people with disability have choice and control over the
supports and services they need to make progress towards goals. People with
disability will also have choice regarding who provides their supports and how
they are delivered, the extent to which they manage their own funding and the
level of risk they take in organising their lives.
The committee received evidence from many witnesses indicating that the
move to individualised funding would result in better outcomes. Mr Colin Rose
I live in shared accommodation. We get block funding, but it
would be so much better if we had individualised funding. To keep me at the
place I am in now is about $120,000. If I had individualised funding, I could
be out in the community for about $60,000, so it just does not gel for me.
Mr Glenn Foard, CEO of Melba Support Services agreed:
It might strike senators as a little strange, representing a
service provider organisation as we do, but we do not want the funding coming
to us as an organisation. We want the funding going to individuals. Our
experience has been that when that happens—and it has happened in certain
situations; we still have a lot of block funding arrangements in place, but
where individuals have control over the support funding that is being provided
to them—innovation follows, and great arrangements are put in place that allow
people to exercise genuine choice and that allow people to live in a home they
genuinely can call their own. That is one of the important things that I think
we need to continue to progress.
The committee also received evidence that outlines the benefits of young
people being able to choose their own supports such as rehabilitation services
or support for activities in the community. However, concerns were expressed to
the committee about the funding pathway for capital investment in specialised
I would like to just comment on the individualised funding
versus the block funding. Individualised funding meets lots of needs; it gives
respect, autonomy—there are many, many pluses. I would suggest that the
experience of our members is that there is also a need for block funding. One
member established group housing for young people with ABI, and that could only
have been done with block funding. If there are a dozen people who each had an
individualised package, the work involved in getting those dozen young people
in the room to put the capital upfront to build the facility needed for the care
would have meant it would not have happened. With respite care, for example,
the individualised package is good—there are huge advantages—but someone has to
actually bankroll the facility. So the mix of block funding and individualised
funding has got to come together. We come across it time and time again.
The committee recognises the importance of individualised care packages
for young people with disability as part of the NDIS's movement to
person-centred care. However, the committee also notes the difficulties that
arise with respect to funding capital works. State and Commonwealth Governments
should give consideration to capital funding for construction of specialised
Ms Lindy O'Neill of UnitingCare Tasmania noted that disability housing
needs to heed some of the lessons from the aged care sector.
It could be some sort of bucket—for want of a more
appropriate professional term—there at the start so that people can build.
Then, if clients do come with money, their money goes back in the bucket and
then, when they move on, it comes back out. But someone has to fund the bit at
the start, because it is fraught with danger. What happens if a person wants to
move out and take their money with them? What happens to the rest of the people
who are still there? If you end up with a situation like we have at Rowallan
Park, where we have vacancies, and no-one can go in, how does that work?...
It is similar to what happens in aged care where you pay to
go in and then you can take your money out when you go, but someone has to
underwrite it at the beginning because it cannot start from fresh air. These
buildings cost a lot of money.
In evidence to the committee, Professor Way of Alfred Health described
the approach taken by accident compensation schemes such as the Transport
Accident Commission and the Workcover Authority:
What we see is a quite different response, because they have
a different financial interest. So their response has been around
whole-life-cycle costs for the individual, with the individual making the
choices. They will create packages of care, opportunity for residences and so
on—all the things that we have been talking about—because it is in their
financial interest to do so.
The issue of statutory personal injury schemes will be
discussed further in the next chapter.
The committee also received evidence on a range of other schemes that
may help bridge the capital funding gap for 'bricks and mortar' including
allowing not-for-profits and government—owners of housing stock—access to
equity in this existing stock to finance new development. Mr Gordon Trewern of
Nulsen Disability Services stated:
Nulsen, for example, has nearly 30 government provided group
homes. Those assets sit on the state register. If those assets sat on our
balance sheet we would be able to use those as leverage for investments to
actually build additional innovative options for people. So I think we need to
look a little more laterally at how we use some of these assets. Currently, I
would call those 'dead' assets that are not really working to the benefit of
building housing capacity, whether that be group homes, individual options or
apartments or whatever it might be.
Dr Bronwyn Morkham raised the concept of delinking housing from the
disability sector to allow the department responsible for public housing to
focus on what it does best—deliver housing:
The YPIRAC program has demonstrated absolutely clearly why
disability services should not be delivering housing anymore. Most recently, we
have had one of the final YPIRAC group home developments delivered in New South
Wales—nine years, it took. We do not have nine years to wait. This is not their
expertise and it should not be left there anymore, so we want to see disability
service providers completely de-linked from housing development and delivery.
It should not sit with them at all.
It is the committee's view that there is an inadequate supply of
specialist disability accommodation (SDA). The committee notes the success of previous
Commonwealth programs such as SAIF in increasing this supply. This will be
discussed in later chapters. At the state level, there needs to be a
co-ordinated approach to ensure that young people living in or at risk of
entering residential care have priority on public housing lists. Further, when
young people leave existing housing to temporarily enter the health or aged
care system that those public housing places are protected.
The committee notes that there is not a 'one size fits all' with regard
to SDA and that the states, Commonwealth and the not-for-profit sector need to
work together to ensure that a range of SDA options are available. Finally,
future and existing housing projects need to consider how they interact with
the community and support services to ensure that they are sustainable. The
next chapter will explore the housing issue and the NDIS further.
Regional, rural and remote communities
The committee has received evidence indicating a range of additional
constraints for those young people living with disability in rural and regional
Australia including Aboriginal and Torres Strait Islander peoples. Many young
people living in non-metropolitan Australia have poor access to services
locally due to geographic isolation and low population density. This problem is
compounded further by poor access to suitable transport options to access
centralised services and often leads to a young person being placed in a RACF
rather than receiving additional supports in the community.
Independent Advocacy Townsville described the experience of one its
clients who was transferred from a hospital to a RACF an hour and half from
their hometown where she now has 'no supports, family or friends'.
In her submission, Ms Jane Thomas explained the difficulty her brother has
finding a place to live in their rural Victorian community.
4.78 The lack of accommodation and support services is compounded by higher rates of disability amongst those living in rural, regional and remote areas as opposed to those living in major metropolitan areas. In its submission, the National Rural Health Alliance (NRHA) noted that:
- the proportion of people living with a disability is higher in Inner Regional, Outer Regional and Remote areas than in Major Cities; 22%, 20% and 17% respectively.
- the burden of chronic conditions (the leading cause of disability in Australia) increases with remoteness, particularly among Aboriginal and Torres Strait Islander peoples.
Aboriginal and Torres Strait
Many Aboriginal and Torres Strait Islander peoples live in regional,
rural or remote areas.
The NRHA states that the prevalence of disability amongst Aboriginal and Torres
Strait Islander people is higher than in the overall Australian population
citing the following statistics:
the overall rate of disability among Aboriginal and Torres Strait
Islander peoples was 21.1%;
after adjusting for differences in the age structure of the two
populations [ATSI and non-ATSI], Aboriginal and Torres Strait Islander peoples
were 1.7 times as likely as non-Indigenous people to be living with disability;
rates of disability peaked at an earlier age for Aboriginal and
Torres Strait Islander peoples than for non-Indigenous people, reflecting the
earlier onset of chronic conditions, such as heart disease and diabetes;
Aboriginal and Torres Strait Islander children aged 0-14 years
had much higher rates of disability than non-Indigenous children (14.2%
compared with 6.6%);
Aboriginal and Torres Strait Islander adults in the age range of
25-54 years had rates of disability that were between 2.0 and 2.5 times the
corresponding rates for non-Indigenous adults; and
in the 35–44 years age group, the differences in disability rates
for Aboriginal and Torres Strait Islander people and non-Indigenous people were
significantly different for both men (35.1% compared with 12.3%) and women
(29.0% compared with 12.5%).
The committee received evidence during its Darwin hearing highlighting two
disabilities that disproportionately affect Aboriginal and Torres Strait
Islander peoples—Foetal Alcohol Spectrum Disorder (FASD) and Machado Joseph
Disease (MJD). Mr Trevor Sanders of the Anyinginyi Health Aboriginal
Corporation (AHAC) highlighted that not only do people in remote areas struggle
to access services, they struggle to even have their disability identified. The
committee heard that there is no word for disability in Aboriginal and Torres
Strait Islander languages.
Although this reflects an inclusive culture where everyone is valued as a
member of the broader community, it also poses problems as those people with
disability are less likely to ask for and receive the support they need. Mr
Sanders noted the scale of unidentified disability and possible unmet need:
As I said, government figures said there are about 22 people
in the Barkly that are FASD affected. We think it is closer to 600.
Mr Sanders told the committee that those with FASD will be included in
the NDIS trial site and outlined some of the issues that had delayed the
rollout of services:
Because it has not been on the radar, when we got into this
trial we said, 'We know it's out there'...
So our thing was, 'You know it's there; help us build a
service. Give us the money and build a service.' The problem we struck is that
it has been like a sleeping monster and the government has not agreed on a
diagnostic tool. So clinicians have not been able to sit down and go through a
process to say, 'This child or this adult has FASD.'
Despite this, AHAC has proactively put in place a service that seeks to
provide supports for those with FASD:
We are using the NDIS as a catalyst to set up services. We
have taken what we call the 'field of dreams' approach. If ever you saw the
movie with Kevin Costner—not my favourite actor—the message was: build it and
they will come. Just do it. That is exactly the approach we have taken. We have
set up a clinical framework with Professor Elliott, the paediatrician from
Westmead, working closely with the paediatricians at Alice Springs. They have
told us what they want in terms of school reports and the history of the mum
with alcohol. They need a speechy, occupational therapist, exercise
physiologist and a psychologist, so we have engaged them—without government
funding, yet, but we have just put them in place. The only way we will find out
the level of the problem is by getting the services up, seeing what is out
there and engaging with the community—which Aboriginal organisations have got
an advantage in doing—working closely with schools and communities.
The committee notes the scale of FASD in the Tennant Creek
community and other remote communities throughout northern Australia. It is
important that the NDIS work closely with community health services such as
AHAC to provide diagnostic and early intervention services, and other supports
to those with FASD.
Ms Massey Bodill of the MJD Foundation noted the complete absence of
appropriate care facilities in remote communities:
When they require assistance from outside the family, as
increasingly they do, there is very little appropriate care available to people
who have MJD and who live in remote NT communities. There is not one
functioning 24-hour residential-care facility in any of the 16 communities we
are working in. There is in fact very little more than a daily meal service in
most of those communities.
Ms Bodill emphasised that many young people requiring high
level care and support are forced to leave their local communities and move to
a regional centre, often many hundreds or thousands of kilometres from their
Currently our clients are forced to move into appropriate
care facilities in towns—in Darwin, Katherine and Alice Springs—when their
family care breaks down. Some have moved into aged-care facilities, some into
facilities for younger people with disabilities. None of them have been able to
stay close to their homes and families; none of them are cared for in language
or are able to receive regular family visits; none of them have been able to
maintain that most significant connection to country.
Advocacy and assisted decision-making is critical to ensure that
Aboriginal and Torres Strait islander peoples are aware of the services
available and how to access them. Ms June Reimer of the First Peoples
Disability Network stated:
The issue is that the way the current state funding rounds
are going individual advocacy organisations will be defunded, because they see
the NDIS or NDIA being the avenue for individuals to have their self-styled
advocacy, which will not work, particularly with Aboriginal communities when
they do not know how to deal with bureaucracy. They need individual advocacy
even they do not understand what advocacy means sometimes and they just know
they need somebody to support them. They do not use terminology like 'advocacy'
or 'case managers'; they just need somebody in the community to support them to
navigate the system. Sitting alongside the NDIA, we see the need for Aboriginal
workers who can support people—with whatever title you want to give
them—because the other issue right across the board is the low take-up rates by
Aboriginal people with the NDIA. So you are not going to solve this for those
living in nursing homes or hospital settings when they do not even know about it
because, generally, when we talk to Aboriginal communities, the length and
breadth of Australia, people have never heard of the NDIA or NDIS.
The committee recognises the difficulty in providing a range of support
services and accommodation options in regional areas where population density
is low and where those accessing the services may be spread over a large
geographic area. The committee also recognises that in some cases a RACF may be
the only option available to assist a young person to remain in their local
community. The committee received evidence suggesting that demand for high
level care and accommodation will continue to grow in these remote communities.
It is important for people living in regional, rural or remote locations
to be able to access a range of options and to be able to make decisions about
their support. The committee notes that a larger proportion of those living in
rural locations 'are cared for by family or friends'.
On the one hand, this can reflect a lack of other options, but can also reflect
the choice of a young person, especially Aboriginal and Torres Strait Islander
peoples wanting to remain 'on-country'. It is the committee view that all young
people no matter where they live are provided choices and supported where they
wish to live.
The committee notes the scale of FASD in the Tennant Creek community and
other remote communities throughout northern Australia. It is the committee
view that the NDIS should consider how its supports those with FASD and should
also work closely with community health services such as AHAC to provide
diagnostic and early intervention services, and other supports to those with
Assisted decision making and advocacy
In previous sections of this chapter, two key themes have been
identified and discussed— first, a siloed service delivery system that is
difficult to navigate and second, delivering services using a person-centred
approach. The committee has received evidence describing the apparent
disconnect between these two ideas. Many submissions have noted that young
people living in or at risk of living in RACF are often vulnerable people who
are voiceless, and are hence unable to participate in the decision making
process surrounding their care. Mr Rick van de Paverd was recently a full-time
carer for his wife until his own diagnosis with a terminal condition, is
concerned for his wife when he dies:
If I am out of Anna’s life there will be very little advocacy
on her behalf, which is a desperate concern for us both. Anna will have no Case
Manager, no appointed agent, no ally to assist with any potential problems she
lives with, other than her family.
The committee has also received evidence about inappropriate
decision-making which suggests that RACF 'staff will often make decisions for
residents thereby removing their autonomy to live their own life'. This often
reflects staff that do not have the relevant skills or experience to identify
the needs of people with 'complex communication' needs.
Poor or non-existent advocacy can result in unintended consequences. Ms
Sally Korbel describes her son Paul's experience when attempting to find new
The Disability Support Register [Victorian DHHS] had never
met Paul and had never seen the home [they] were suggesting which was totally
unsuitable. Paul would not have been able to manoeuvre his wheelchair in the
limited space available and the conditions were appalling...
As I refused this offer, I felt it then worked against us.
Several people I have asked to assist with Paul's plight have endorsed this.
Mrs Sonia Di Mezza noted the importance of advocacy stating:
Advocacy is completely crucial. I always say that, once you
are in a nursing home, getting that person out is a very, very difficult thing
Life Without Barriers (LWB) is an organisation that supports a
person-centred approach by involving the young person in the decisions that
will affect how they lead their lives. In its submission, LWB stated that:
the people we support play the
biggest role in designing their supports and choosing the services that they
The 'systems wrangler'
Many submissions and witnesses have highlighted the importance of a
young person having a strong advocate or case manager:
Where we see success, always there is strong advocacy, case
A strong family member who will not give up; who knows and
who is able to actually go out there and find the information. Other family
members who do not have the time, who are working and who have other burdens on
their time, cannot always get access to that information. So it very much about
knowing what you know, and then being able to find that information so you can
find your way through the system. Disability is complex and aged care is
complex. Trying to bring the two together just makes it very, very difficult.
Throughout its public hearings many witnesses have raised the need for a
'systems wrangler', a key person or an organisation who can help parents,
families and individuals to understand and navigate the different departments
and programs currently available. Dr Bronwyn Morkham of the Young People in
Nursing Homes National Alliance (YPINHNA) defines system wranglers as:
[P]eople who are very skilled, who know about the different
ways those health, housing, disability, and education sectors work, and can go
in and work with people in those sectors to extract the services and supports
each individually provides, but to deliver them in an integrated way for the
Mr Alan Blackwood of YPINHNA identified why case management is currently
The trouble we have had with case management over the
years—which is probably the latest profession to have come into this care
sector—is that generally it only works in the program that funds it. If you are
a home community care case manager, that is all you do. If you are a disability
case manager, you are only mandated to work with that bit of funding you have
in that one program. So if the person you are working with has needs in health
or education, you actually have no mandate to go and sort that.
Mr Blackwood also noted that in order for case management to
work, case managers must be 'given a mandate to work across sectors'.
An example of a program that successfully utilises a 'system wrangler'
is the National Younger Onset Dementia Key Worker Program (YODKWP). The key
worker 'acts as a primary point of contact for people with YOD, their families
and carers' providing 'information, support, counselling and help with
effectively engag[ing] with services appropriate to their individual needs'.
In its submission, Alzheimer's Australia related the story of a young Victorian
man who worked with a key worker:
A key worker in Victoria supported a person and his family to
accept a recent diagnosis of Fronto-Temporal Dementia. The man was supported by
the YODKW to disclose his diagnosis to his employer and receive entitlements
when he decided he was no longer able to work. The key worker worked with the
football club of which the client was a long standing member to support his
ongoing involvement in the club.
The key worker also provided support to the client’s teenage
children, including working with the school to ensure supports were put in
place. This has been done while linking the family into a number of other
services and assisting with complex behavioural and psychological symptoms that
needed extra support. This client’s wife has commented that she does not know
that she would have coped had it not been for the support from the YODKWP.
The role of a 'systems wrangler' will be discussed further in Chapter 5.
Advocacy and complaints resolution
The previous section has discussed the importance of a 'system wrangler'
who can assist young people to negotiate the service delivery system and obtain
the best outcome for them when planning their future. Equally, the other
important role that advocacy should fulfil is to advocate for young people experiencing
systemic or persistent problems where they live or with the services they
There are young people who have a range of fundamental needs that are
not being met and no one to advocate on their behalf:
For him it is not about the NDIS; it is about: 'Will I get a
shower?' 'Will someone come and help me in and out of bed?' Those are the
issues he is thinking about. He does not care what it is called. He did not
understand any of that, and the service providers were all assuming somebody
else was doing it, so his application is only now going in with our support.
Ms Mary Mallett of Disability Advocacy Network Australia spoke about the
role that an advocate can play in solving issues that are quite fundamental to
the privacy of young people living in the aged care facilities. For example:
At one of the regional places I am thinking about, nobody is
allowed to have a lock on the door; it is all about safety. So the advocate who
goes in and tries to help the people in that facility spends a long time over
months and months trying to support people to, for instance, get doors that
they can lock themselves so that people with dementia cannot come in all the
time rifling through their drawers breaching the privacy of everybody in the
Ms Helen Bedford of Families Australia noted:
We know that there are often visitor programs or advocacy
groups that go in for older people in nursing homes, but the feeling was that
there needed to be a specially targeted program when younger people were in
nursing homes or residential care.
The committee recognises that there are a number of statutory positions
to which young people can complain to. However, there are inconsistencies between
jurisdictions with regard to what types of organisations an individual may lodge
complaints about. For instance, if a young person had a complaint about an aged
care facility, they could not complain to the WA or Victorian Ombudsman as
these bodies 'cannot deal with private individuals or businesses'.
However, the NSW Ombudsman may investigate 'organisations delivering community
services'—including RACF—and also administers an 'Official Community Visitor'
scheme. The Official Community Visitor can 'help resolve issues of concern at
the local level'. It is possible to request a visit from an 'Official Community
The ACT has a dedicated advocacy scheme for young people living in aged
care. In the ACT there are two 'Official Visitors' who are appointed by the
Minister to 'undertake visits and complaints resolution functions for people
with disability living in the community or, for those people aged under 65
years living in [RACF] in the ACT'. The Official Visitor Scheme has also
developed a Self-Advocacy Tool Kit to raise awareness of the scheme.
The success of the ACT Government's 'Official Visitor' program is noted
and it is the committee's view that the Commonwealth should accept a lead role to
ensure young people in all jurisdictions have access to an adequate complaint
resolution process such as the ACT Government's 'Official Visitor' program or
the NSW Government's 'Official Community Visitor' scheme.
The committee received evidence from the Department of Social Services saying
that states/territories and the Commonwealth share responsibility for the
provision of disability advocacy services. The Commonwealth directly
distributes funding through the National Disability Advocacy Program (NADA) and
the National Aged Care Advocacy Program (NACAP). Although the NACAP is
nominally available to all aged care residents (including young people), it is
more often used for those aged over 65 years as they make up the majority of
aged care residents.
Ms Mary Mallet of the Disability Advocacy Network Australia noted that:
The NACAP is a very small program. There are only nine
federal-funded services. There are two in the Northern Territory, but only one
agency in each of the other states and territories...
Many of the activities that they do are about educating and providing
information to workers and staff and people coming into those aged-care
services, and not so much of the funding is available for individual advocacy.
The quantum of advocacy available is very limited. The brochures and the
information about those services are meant to be available in those residential
facilities, but there is not likely to be brochures available about any of the
other disability advocacy organisations. The staff are fairly unlikely to know
about them or to refer people through...
Not only are there significant problems for some of these
younger people, but they are even less likely to be able to get help with their
problems than other people with disabilities living in other places.
The committee received significant evidence relating to the inadequacy
of funding for advocacy and assisted decision-making. Alzheimer's Australia
(AA) noted that the key worker program is in jeopardy as this program's funding
will be subsumed by the NDIS.
AA noted in further evidence to the committee that 'there is not a place in the
NDIS to fund that advocacy role in the same way that the key workers have been
able to support people'.
Ms Lorraine Gibbs of the Darwin Community Legal Service noted the level
of uncertainty around continuing funding for advocacy programs through the
Commonwealth Department of Social Services:
Both of those programs under review. We understand that the
disability advocacy program will be refunded, but we do not have that in
writing and we do not know to what level of funding that will be. We
anticipate—and hope, as with all of us here—that the aged advocacy program will
continue, and the same with the NTG [Northern Territory Government]. Most of
our funding is through the DSS and a small amount is from the NTG for disability
Ms Mary Mallett of Disability Advocacy Network Australia (DANA) noted
that 'even though the advocates and advocacy organisations in the [NDIS] trial
sites have an increased workload, there has been no recognition of that in the
The NDIA has recognised the importance of assisted decision making in
helping a young person choose an appropriate NDIS support package and to ensure
it is appropriately delivered. Mr David Bowen, CEO of the NDIA spoke about the
ability to fund 'Information, Linkages and Capacity Building' (ILC) as part of
NDIS packages in the future:
We think it needs to be very much at the community level,
very close to people, well integrated into other community supports so it is
about helping people with the connection to the community as well as helping
them through all of the different systems, including into the NDIS. It will
become a significant resource that really does not exist as part of the trials.
Although the committee is pleased to note the likely inclusion of ILC in
NDIS packages, the committee is concerned about what happens to those not
living in NDIS trial areas between now and the rollout of the full scheme.
This section considers two broad ideas—that young people need support
with decision-making and with complaint resolution. It is clear to the
committee that young people are currently not receiving adequate support in
either of these areas and that largely this is a function of funding. The
committee believes that if young people were assigned a key worker to assist
with planning and decision making this would result in more informed
placements. The YODKWP will be discussed further later in the report.
The committee also accepts that there is a level of inconsistency
between different states with regard to complaint resolution. It is the
committee's view that best practice schemes such as those found in the ACT and
NSW should be observed and replicated in all states and territories with the
Commonwealth playing a lead role in implementation.
Training the workforce
In Chapter 3, the issue of aged care workers not being suitably
experienced or trained to work with people with disability was discussed. This
generally results in poorer outcomes for young people in care and manifests in
challenging behaviours and incorrect or delayed diagnosis of diseases and
conditions such as dementia, in addition to poor job satisfaction for those
aged care workers.
The committee received significant evidence suggesting that specialised
training may be one option that would lead to better outcomes for young people
who live in a RACF. Mr Joe Smith, Manager—Step-out Community Access Service noted
that 'the carers there [in aged care] are really well-meaning people, but they
do not have the disability training'.
Other submitters noted that 'staff members are trained in aged care, but only a
minority are also trained in the field of disability'.
In their submission, Occupational Therapists Australia discussed the
importance of 'investing in upskilling and developing the professional carer
workforce so that [RACF] staff are able to provide the care and support' that
young people need. This investment in human resources would yield dividends in
'productivity and professional carer workforce outputs'.
The Brotherhood of St Lawrence submitted that 'institutions that train staff
for disability and aged care be encouraged to develop courses that integrate
In addition to training that assists staff to better understand people
with disability, it is also important for aged care staff to understand young
people and their needs. In evidence to the committee, Dr Adrienne Withall,
Senior Lecturer at the University of New South Wales noted that placing older
people who are 'frail and unsteady' together with young people who are 'fit and
agile' and who sometimes exhibit 'behavioural issues' can be difficult to
manage in the RACF environment.
Dr Morkham explained that aged care workers not only needed training,
but also required support as a young person is transitioned from hospital to an
RACF. Often this is funded only for a short period of up to one month, if at
But, because it is such a short time, the moment they leave
or the minute there is an emergency, the ambulance is called and we are back to
the hospital. Sometimes we find the providers will say it is just too hard and
close the door. So there are pockets where this is being trialled, where people
are trying very hard, with good results. But, again, there is no systemic
support for that either.
Just as RACF are not funded or designed for young people, the staff employed
by these facilities are also not formally trained or experienced in caring for
people with disability. It is the committee's view that all aged care staff
should be required to undertake a component of their formal training in caring
for people with disability. Further, RACF that accept a young person in a
placement should be given specific training or support as a young person is
transitioned into a RACF to ensure that the staff are able to meet the young
person's health, social and behavioural needs. It is the committee's view that
the key worker role that will be discussed further in the next chapter will
facilitate provision of that support.
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