Residential aged care facilities as an accommodation option for severely
disabled young people
This chapter discusses the following terms of reference:
- the appropriateness of the aged care system for care of young people
with serious and/or permanent mental or physical disabilities; and
- the options, consequences and considerations of the
deinstitutionalisation of young people with serious and/or permanent mental,
physical or intellectual disabilities.
The committee has received a range of evidence from individuals,
families, peak bodies, advocacy and charity groups, and service providers
outlining the inappropriateness of aged care accommodation for young people
with a disability including but not limited to a lack of:
independent living options;
rehabilitation options to facilitate a transition to more
lack of age appropriate activities and friends;
options for supported accommodation;
advocacy support for young people and their families; and
a sense of community and economic involvement.
Most of these issues stem from a young person's lack of choice when
deciding the accommodation and support structures that best suit their stage of
life and ambitions. Currently, Residential Aged Care Facilities (RACF) are designed
for older Australians and are not funded to provide care for young people or
people with severe disability. In many cases, young people living in RACF are
receiving care more appropriate for elderly people nearing the end of their
life. Most of these young people want to participate in education, employment,
and social and recreational activities, but are impeded by the RACF environment
which does not provide support structures to enable this.
For those young people and their family who deem RACF the best option
for their circumstance, there needs to be a sustained improvement in how aged
care providers adapt their facilities and services to meet the requirements of
their younger clients.
Australia is a signatory to the United Nations Convention on the Rights
of Persons with Disabilities. Article 19 of the Convention enshrines the 'right
to live independently and [be] included in the community' and asserts:
The equal right of all persons with disabilities to live in
the community, with choices equal to others, and [that signatories] will take
effective and appropriate measures to facilitate full enjoyment by persons with
disabilities of this right and their full inclusion and participation in the
Further, the International Covenant on Civil and Political
Rights states 'that all people with a disability should have the opportunity to
choose their residence and where and with whom they live on an equal basis with
others, and not be obliged to live in particular living arrangements'.
This chapter will examine how these obligations are not met for young
people with a disability in RACF.
The right to choose a home
Many submissions to the inquiry raise the concept of social inclusion as
being as important as the provision of support services and devices to people
with disability. All people regardless of their disability status need to feel
connected to the broader community through reciprocal interactions with other
human beings. In its submission, JFA Purple Orange eloquently requotes the role
of living arrangements—the home—in facilitating that community connection:
Home is more than shelter; it is a place of identity and
expression, sanctuary and safety, a place that fosters strength, wellbeing and
revival. Home is intimately and inextricably connected to the person. People
with disability need to have choice in the place and with whom they live rather
than simply accepting an accommodation offer or not. Current accommodation
offers rarely relate to social networks, location of family, recognition of
culture, personal desires or ambition.
The catalyst for greater life choices is provided if a person with
disability is empowered to choose where they live. This opportunity of choice
and control is the natural precursor to an individual 'having valued roles in
community life and the economy (often described as inclusion)'.
In its submission, Youth Disability Advocacy Services agreed with this
proposition citing the results of a research project into disability housing:
[The research project] was clear in identifying that ordinary
housing, dispersed within the community, where there is access to
individualised supports, consistently outperforms clustered and institutional
settings in measures of social inclusion, interpersonal relationships and in
material, emotional and physical wellbeing.
In its submission, Occupational Therapists Australia also discussed the
importance of social inclusion and the occupational deprivation that living in
RACF can bring. Occupational deprivation occurs when an individual is excluded
from the everyday activities of life including social isolation:
76% of our sample of people living in supported accommodation
had occasional, or no known contact with friends and outsiders
And a lack of involvement in basic tasks:
Things like ringing the bell for dinner, folding the washing,
using a microwave oven to make the hot drinks, watering pot plants—all basic
but key occupational tasks offering elements of autonomy and symbolic
work-related roles that involve clients, however in many [RACF] such duties are
the sole responsibility of nurse or care staff.
And inappropriate activities and poor community engagement:
I often find one of my clients sitting in his bedroom, alone
in the dark. Activities of the nursing home are not age appropriate. This was
minimal stimulation for a young 22 year old man. I have reviewed the activities
available for the nursing home and they are all targeted towards a very elderly
The concept of social inclusion underpins the next section, the
appropriateness of RACF and other types of accommodation.
Suitability of Residential Aged Care Facilities and other types of accommodation
The committee has received a large number of submissions and evidence
from individuals living in RACF, family members, professional bodies, peak
organisations and aged care providers. The vast majority of these submissions
outlined the inappropriateness of RACF as accommodation for young people under
the age of 65.
The committee received evidence from one family suggesting that some
families would struggle on with their children or loved one at home rather than
leave them in an RACF:
On her return to the facility, Emily's anger increased to an
uncomfortable level. Upon entering and "signing in" we proceeded to
her room upstairs, which resembled an unused storeroom being the last room at
the end of a long corridor with excess equipment and furniture stored outside
it. Her bedroom door was locked. We then returned to reception which was
unattended to obtain a key. Halfway back up to the room we could not continue
the journey. I found myself saying "I cannot put the key in the door,
let's go home Ems" and we just left...
I just couldn't bear the thought of leaving my daughter in a place
which felt so inappropriate. To me, it felt like I was just deserting her.
Not all families are in a position to take their child or
loved one home. These families are left to accept that their loved young person
will live in a RACF. This section will discuss the many reasons why an RACF is
an inappropriate place for young people to live.
Age appropriate accommodation
Many submitters and witnesses agreed that a RACF is not an environment
for young people.
The committee received evidence that the average age of a resident living in residential
aged care is over 85 years old.
Many submissions noted the 'cultural distance between the old and the young':
They usually have very different preferences in music, décor,
entertainment and generally, just in the ways they fill their day. It is nice
to mix together sometimes, but usually young people do not want to live with
old people all the time. Why would a young person want to visit their friends
in a nursing home?
A lot of the activities they have there are for elderly
people, not for young people. For example they have bingo, where they win
chocolates and they play carpet bowls. They do music therapy – people come in
to play music and they sing all those old songs, Terry does not participate in
any of it.
Mr Sandra Walker, General Manager at Multiple Sclerosis Ltd spoke about
the difficulty young people have when forming friendships in a RACF:
Living in a nursing home has meant I have lost all my
friends. Even though I make friends with other elderly residents, they die.
Being surrounded by death is upsetting and depressing.
Access to services
The committee received evidence highlighting many of the inherent
shortcomings that exist for young people living within a sector designed to
care for people in the final years of their lives. These include inadequate
access to rehabilitation, non-availability of certain supports due to funding
restrictions within the aged care sector, and the loss of personal effects and
There is a very strong link between access to adequate rehabilitation
and independent living for people with severe disabilities. Many young people
have been able to live relatively independently due to regular rehabilitation
and occupational therapy only to regress upon entering a RACF when those
services are not provided.
Where services are provided they are often inadequate. Mr Darrell
Bainbridge relayed the current situation in his brother's RACF where 'they have
a physiotherapist at the nursing home that has 60 residents to consult in only
two days a week'.
Mrs Ann Newland, mother of Michelle, noted the lack of progress made during her
daughter's stay in a nursing home:
During this time Michelle spent 23 hours in bed with very few
visitors, apart from my husband and me. We visited her every day and brought
her home on weekends. Michelle made no gains in the nursing home, and in fact
the gains made in rehab were compromised. It was a very hard time for all of
us, filled with great sadness, immense stress, fear and loneliness. Every
goodbye whilst Michelle was in the nursing home was heartbreaking. I would cry
all the way home.
Michelle was described during her stay in the nursing home as:
[O]nly saying a few words and... walking, but not very well,
still requiring a wheelchair. She was incontinent. She was fed through a PEG
tube and could not even swallow her own saliva. She required 24-hour care.
This description contrasts with the 'vibrant, beautiful person' attending
the committee's Melbourne public hearing who stood and was acknowledged with
applause by the committee.
Nominally RACFs offer rehabilitation services but the actual availability of
the service and its provision are patently inadequate, and do not facilitate
people to regain some or all of their independence. The importance of
rehabilitation for this cohort will be expanded on in Chapter 4.
Inadequate provision of services leads to some families feeling that
they have to fill these gaps. Ms Nicole Everingham still 'provides daily
support for her son, despite the involvement of 2 funded service systems'
showing that the 'overall system is utterly and completely deficient in its capacity
to deliver the care my son so obviously needs'.
Often different government departments cannot agree on who is
responsible for the provision of a particular service. These disagreements exist
between mainstream services (for example, health, housing, aged care) and the
disability sector about where responsibility lies for funding particular
services or supports. The committee received evidence from a number of
witnesses about people requiring wheelchairs who were not being given access to
The only reason Daniel has a wheelchair is that the
specialist who was looking after him was kind enough to pay for it, because I
did not have the money after him being in hospital for a year...
Our daughter has been given, by somebody who is very kind, a
second-hand wheelchair. I was promised by the NDIS 12 months ago that she would
have a purpose-built wheelchair. She is not going to live that long and I want
that wheelchair really badly.
This siloed approach to service provision seems to focus more on a
department minimising its costs and, where possible, transferring those costs
to other state or commonwealth departments and agencies rather than achieving
outcomes for individuals. The committee notes that decisions made at a
macro-economic level have significant tangible impacts on individuals and the
basic provision of supports and services such as wheelchairs. The committee
also recognises that this siloed approach manifests as an inability to work
across agencies. This will be explored further in Chapter 4.
Social inclusion and individualism
Occupational health and safety requirements in many residential care
settings have created homogenised environments in which many young people do
not feel at home or do not feel that they can express their own personality.
In her submission, Marina Nikolova, currently residing in hospital and who will
shortly move into a RACF, noted that:
Prior to admission [to hospital], I was able to invite
friends to my flat, care for my cat named "Kitty" and look after my
pot plants. Kitty is all I have in life and I cannot have a cat in any of the
aged care facilities. It is very distressing to know that I need to relinquish
Kitty to Pet Rescue or to a person or family who will love her as I do. I
already really miss my "old life" and knowing that I will have to
sell my furniture and effects is also very upsetting and depressing.
Ms Deborah Farrell of Multiple Sclerosis Limited discussed staff patient
relations relating a young man's feedback on living in an RACF:
You don't live in residential aged care, you just exist...
It was the loss of freedom, loss of respect, loss of
intelligence. Pretty much you were treated like a person needing aged care,
that you haven't got a brain.
Another young woman described her interactions with staff at
The staff—they were almost robotic. They did their work but
not with any feeling. Like they were milking cows.
Many submissions focused on the social isolation experienced by young
people living in RACF. In addition to inappropriate age-related activities and
a lack of opportunities to remain independent, the resources to allow people to
encourage social and community engagement are simply not available in the aged
care sector. For example, the committee received evidence about the lack of
flexibility around bedtimes and meals:
The times that the meals are structured do not suit them, nor
does bedtime. In aged care your staffing numbers get lower at the end of the
day. That is when those younger people say, 'Excuse me, I want to go to bed at
11.' Our staff finish at 11 and we bring in night staff. We do not have three
people to put someone with severe disabilities to bed at 11 o'clock. Those
things really do affect people. They have to make a lot of sacrifices, those
younger people, because they are compromising.
Mrs Gail Palmer of the MS Society of WA spoke about the problems of
imposing a strict regime on people who must make difficult decisions about their
daily activities due to their illness:
You are told what time to shower. One of the chronic problems
with MS is that people get fatigue. Almost 100 per cent of people get fatigue.
For a person with MS, they might decide in the morning: 'Will I shower, or will
I have coffee with my friend? I have to do one or the other; I cannot do both.'
When you are living in an aged-care facility, there are rules and regulations
that everyone will be showered every day, and it will be done in the morning at
that time—I know that some are better, but it is still very often like that. It
is for staffing: you have x number of staff on because that is when the
personal care is done. And your choices are taken away.
The ACT Disability Aged and Carer Advocacy Service Inc (ADACAS) submitted
that '44% of younger people in aged care will receive a visit from friends less
than once a year; 34% will never participate in community based activities such
as shopping; and 21% will go outside the home less than once a month'.
These statistics are symptomatic of the social dislocation that many of these young
people experience. Lack of opportunity to engage in suitable community and
other physical activities can result in entrenching unhealthy and introverted
behaviour, further alienating these young people from society:
One of our younger clients who lives in a nursing home, for
example, spends his days outside smoking, watching television or playing video
games as his sole forms of entertainment. He has very few other options
available to him.
The committee also heard that residents of RACF are 'only allowed 52
overnight days of social leave per financial year where they are absent from
This does not provide for residents' who may have family and
friends and want to stay with them overnight on the weekends as well as for
holiday periods. This restriction limits residents' social interaction and
increases their social isolation.
Bullying of residents in aged care, their families and staff was raised
as an issue including 'verbal aggression, demeaning behaviour, the failure to
respect people's privacy, [in particular] the privacy of women using the
assisted toilet'. Mr Daniel Black, an RACF resident recounted a bullying
The staff member who does most of the bullying in this
facility bullied me. I had a fall in the assisted toilet, the [registered nurse
(RN)] at the time saw me fall and asked the worker to assist me. I told her
that I need her to lift the chair out of the way. She said it was ‘too heavy’
(it weighs 16.5 kgs) and ran it over my legs. The RN and I both made a formal
complaint to the Manager but nothing was done. It was swept under the carpet like
it normally is.
The issue of food quality and even the dignity of eating were raised.
Mrs Palmer explained that young people are fed 'a brown splodge, a green
splodge and some other splodge on a plate' and sometimes fed as part of group
of four. Meals are strictly timed with food removed at the end of an allocated
time. These young people lose the 'dignity' of choosing when to start and
finish a meal, and whether to enjoy it alone or with company.
Dr Adrienne Withall of the University of New South Wales (UNSW) related the
experience of a young woman who would spend brief periods in an RACF as a form
They keep mushing up my food. I don't need my food mushed up.
I come to respite because I know my husband needs a break...but I do not need my
food mushed up, and I cannot get an internet connection. At least if I had the
internet I could sit in my room and I would still have access to the outside
world, but I cannot do that, and so I feel very alone.
A common thread throughout the evidence received by the committee is in
relation to the poor mental health of young people caused by the factors previously
discussed. In its submission, Catholic Social Services Victoria noted 'the
difficulty for young people in nursing homes to create age appropriate
friendships within their 'home': this can impact on their quality of life and
exacerbate pre-existing mental health issues'.
There is a heavy emotional impact on individuals with one submitter 'describing
himself as the "living dead" and "If I was a dog, you would put
Occupational Therapists Australia identified a number of key mental health
issues that will affect young people living in RACF including grief, loss and
depression; temporal concerns—lack of autonomy and meaning in daily tasks; and
Aged care not young care
The committee received a number of submissions from organisations that
currently operate aged care facilities indicating that accommodating young
people in their facilities is not a suitable long term option. Anglicare
Australia submitted that one of its member organisations, Benatas:
[R]ecognises [that] aged care services are not designed for
this cohort. The issues relate primarily to the lifestyle needs of younger
people in relation to service choice, and here are many cultural, lifestyle and
sexuality considerations around providing care for people in these
circumstances, which Benatas is not well placed to provide.
For self-evident reasons, many of the services Benatas
provides are age specific, and whilst adequate physical care may be able to be
provided, lifestyle options and personal support suitable for younger people
Further, Aged and Community Services Australia's submission noted:
Aged care services are designed to address the natural
processes of ageing, not disability; the term 'disability' does not appear
anywhere in the Aged Care Act. While there are provisions for supporting
younger people in residential aged care when there are no other options
available, this is clearly not the intention of aged care services.
The financial impost of living in
The committee received evidence about the debilitating fees paid by
young people living in aged care and the financial destitution this places them
in. Mr Daniel Black, an RACF resident submitted:
I pay 85% of my pension to the aged care facility. I’m not
eligible for rent assistance because I live in a nursing home. I’m left with
$50 per week for chemist bills including putting my medications in Webster
packs, which is required by the facility. I have three Webster Packs made up
each week and at a cost of $17 dollars just for the pack, the medication is an
additional cost, so that's $51.00 per week gone already. I’m living in the red,
I pay $45.00 per week on cigarettes, about $20.00 per week for my phone. I owe
the chemist money, I owe the facility money and I owe Telstra money, it’s
really stressful. Occasionally I buy a Tatts ticket on the off chance that I’ll
win and get a little bit ahead...
Since my admission to [RACF], my ISP [Individualised Support
Package] has been cut to $25,000 and they want to cut it to $6,000. I spend my
$25,000 on music therapy, massage therapy and for [carers to] come in to put my
clothes away when my budget allows.
This is in stark contrast to the 'happy years' when Mr Black
lived as a person with disability in his family home with his wife and pets adequately
funded through a Disability Support Pension and an Individualised Support
The committee notes that those living in aged care are deemed to have access to
a number of supports—that are not adequately provided—and, as such, have their
ISP reduced based on this false assumption.
There are other financial imposts placed on young people who live in
aged care facilities. Ms Lorraine Gibbs of the Darwin Community Legal Service
told the committee that an 'income and assets test applies to anybody moving
into an aged care facility' and that they may have to pay a bond in order to
secure an aged care placement. This has profound consequences on that person's
financial capacity to move out from an RACF particularly if they had to sell a
house or flat to enter the facility:
My concern is that if it is a younger person, and we are
particularly wanting to get younger people out of a facility, and somebody
moves in today, that is what would be the arrangement, as far as I am aware. If
they were to stay there for, say, 10 years but they needed to sell their unit
to pay the bond, then in 10 years time they will get some of that bond back,
but meanwhile property prices or whatever may have escalated—and establishing
themselves back out in the community may be a lot more difficult than it would
be if that did not apply.
The committee notes the financial disadvantage that some young people
are placed in whilst living in RACF and the impact that this has on those
seeking to transition into other accommodation.
When is aged care suitable?
For the vast majority of young people, aged care is a completely
inappropriate place to be accommodated. However, in some circumstances aged
care facilities can be an appropriate option for young people, but only if the
aged care sector seeks innovative ways to deliver this care. Ms Maddy Archer
noted in her submission that she has lived in a nursing home for eight years
and is 'quite comfortable', as she lives in a two bedroom apartment, not in the
main facility, allowing her to retain a sense of independence.
Mt St Vincent Aged Care Home in northwest Tasmania has built a separate wing to
accommodate younger residents. This wing is separate from the main facility and
allows the residents more age appropriate living arrangements. It even allows
the residents to come and go with their own electronic key.
Some submitters acknowledge that with an ISP to fund appropriate supports, a
young person can 'continue to live life fully in an aged care facility which is
open to partnership and person centred support'.
Appropriateness of people with
Younger Onset Dementia, intellectual disabilities and degenerative disease
being housed in aged care dementia wards
The committee received evidence about groups of young people with
specific needs and/or challenging behaviours that are difficult to manage in
the aged care environment.
Professor Brian Draper and Dr Withall of UNSW explained the behavioural issues
associated with a growing number of younger onset dementia patients being
accommodated in RACF:
There is this group, particularly younger males, often with
alcohol related problems or other brain damage to the front part of the brain,
where behaviours can get extremely challenging, and there are very few
facilities across the country that can adequately provide quality care for
[I]f you put people who are prone to behavioural disturbance
in a unit where they are sitting...with no stimulation, no meaningful engagement,
then yes, that will bring it on.
Often, aged care workers have no or little training or experience
working with disabilities. Challenging behaviour can manifest when young people
with disability 'have significant impairments in their communication and
behaviour becomes a mechanism for communicating things like discomfort in an
environment, pain or other physical distress, or sensory or emotional
In its submission, Down Syndrome Victoria noted that people who have
Down syndrome have a 'high chance of acquiring age related health conditions,
including dementia, in midlife—around 35 to 50 years—often with a more rapid
onset and deterioration in cognition, than the general population'. However,
those with Down syndrome already have a range of cognitive and language deficits
which may be exacerbated by other health conditions and present as challenging
behaviour. Diagnosis and treatment of dementia—in its development and
consolidation phases—for those with Down syndrome needs to be managed by
suitably qualified professionals. Traditional dementia wards in aged care
facilities often do not have the experience required to treat those with
A range of other groups including those diagnosed with Multiple
Sclerosis, Alzheimer's, Huntington's disease and motor neurone disease require
specialised knowledge to support and assist with living arrangements. This
specialist support often cannot be provided by age care workers.
Training of aged care workers to work with people with disability will be
discussed further in Chapter 4.
Institutions and congregate care
Many submitters to this inquiry view this issue as broader than simply
young people living in aged care and instead describe it as an institutional
issue. Melba Support Services related the story of Mr Colin Rose who described
[L]ows of being accommodated in aged care and other
congregate care services with people I had little in common with and with whom
I would not, had other options been available, have chosen to live with.
Ms Kathryn Bruce outlined some of her concerns about the group home
where her daughter lives:
Funding appears to be on a shoe string, and always done [at
the] cheapest possible. Staff are barely qualified, and although they mean
well, and try really hard, they are often not highly experienced or skilled in
working with those with disabilities. Their pay is low, meaning they often
leave to get a better job maybe with more regular hours.
Further, Ms Bruce noted:
We do appreciate how difficult it must be to run houses,
however we as parents would like more say in who our daughter lives with and
who works with her.
The Office of the Public Advocate Queensland (OPAQ) stated that there
were 131 people with severe intellectual or cognitive impairment living as
long-stay residents in Queensland public health facilities or institutions.
These facilities include public residential health facilities, public aged care
facilities, hospitals and other health services, and mental health facilities.
OPAQ noted that 'it is neither acceptable or appropriate for people with
disabilities to continue living in hospitals or other institutions' citing poor
access to the community, educational and vocational opportunities. OPAQ noted
that many of these institutional facilities 'are not home-like':
[D]espite the fact that many people with disabilities live
there, some for most of their lives. Many people with disability in health
facilities sleep in hospital beds in ward‐type
environments with other people. This is despite the fact that hospital beds are
often not required for their disability (for example if they have an
intellectual disability). It was submitted to the Public Advocate that the
living conditions in one particular health facility:
"directly contrasts how an ordinary home would look;
dividing a multi‐story
building into living areas and providing sleeping arrangements where up to four
people share a room is far from the ordinary home. Indeed, the centre is
reminiscent of a nursing home which perpetuates the stereotype that people with
a disability are sick and/or close to death." 
The committee received evidence about the symbolic importance of
removing young people from RACF as a first step in recognising that institutions
are not appropriate places for young people to live:
The more we condone young people in Residential Aged Care
Services, the more we reinforce the message that people with disabilities
belong in institutions [and not in the community].
Young people, regardless of whether they have a disability
must have the right to experience a full life of adventure and exploration.
They are not dying nor are they frail. They are vital to the future of our
society and as such must be seen, heard, engaged with and learnt from.
Living in an institution rather than in the community means
that these young people cannot be 'seen, heard, engaged with and learnt from'.
The Office of the Public Advocate Victoria recommends that all Australian
Governments 'commit to a timeframe in which all remaining congregate care
(institutions) for people with disability will be closed'.
This section has established that RACF is inappropriate for a number of
reasons as they are not designed or funded to provide care for young people.
The committee notes that there needs to be a paradigm shift in how society
views young people with disabilities and how services are provided to them, not
only in aged care facilities, but in all institutional settings. BaptistCare says:
As a nation, we need to be better at designing services for
individuals so meeting resource constraints are not the priority. We also need
to be mindful of how such services restore balance in terms of the things that
are free—the natural networks of individuals. Children with profound
disabilities access supports and services through the early years, these
services often change when they reach high school age, and they change again
post school. Their visibility and engagement through such early to teenage
years are not in a bubble, they involve having others around them. Yet a time
comes when our systems bring all of that to an end.
In the next chapter, a range of different housing and support models
will be examined.
Supporting families and individuals to stay at home or in the community
The previous section noted many of the reasons why it is inappropriate
for young people to live in RACF and institutions. This section will explore the
options for enabling young people to continue living with their families or independently
in the community.
Families Australia's submission recognises that young people with severe
disabilities are members of families and communities, that 'young people may
have children and a partner as well as parents, siblings and broader family
members' and the centrality of these familial relationships in their lives.
The committee heard that many young people living in aged care yearned
to participate in normal relationships with friends and family like others
their own age would expect. Mr James Bailey explained that his 'needs and
interests are exactly what you'd expect of a twenty-eight year old man' and
that like most twenty-eight year olds, every Wednesday night he and a friend:
Go to the dockyards (pub) and
have a meal and then some drinks then on to cold rock for an ice cream or a
I am out most days, and often
on Saturdays at mum and dad's place.
In its submission, JFA Purple Orange contained an excerpt of an
interview with a young person explaining why it is important to live at home:
[You have an] independent back yard, having your own things,
family visiting. The family can sit in a casual setting, and you don’t get that
in a nursing home—you have to go to a day area. There’s more time to sit—no
time limits or restrictions. You can go to bed anytime you like. A better
The committee notes the importance of living in an environment—whether
independently, with friends or family—that fosters these relationships and the
support structures they create.
Australian Home Care Services (AHCS) currently supports over 30 people
to live in supported accommodation.
AHCS found that young people in this environment:
[E]ngage with and access their communities more frequently,
at times developing friendships outside of the service delivery models; develop
skills to use services and facilities within their communities, including
undertaking personal shopping, banking and recreational and leisure interests
and re-establish family connections and their roles as parent, partner, sibling
Importantly there are options, designed to help them live the
life they have chosen and the support to participate in the things that give
The committee also received evidence suggesting it would be more cost
effective to support young people in their own homes than in RACF. As Mr Chris
The government currently pays significant amounts of money to
nursing homes. We could have gone home with 50% of that money, i.e. the $150 000
for one person to live in a nursing home could have kept both [Lisa and Chris
have MS] at home. We should have had choices rather than others deciding where
we should live. We should have had access to more care at home and a case
manager assigned to us to explain our funding options and to make plans for our
future. We could have stayed at home longer and we could have avoided a crisis.
Mr Anastasiou concluded his submission by sharing why it was important
for him and his wife to be living at home again:
Now I'm home, I can go out the back and take in the view of
the mountains and draw a deep breath without hearing the screams from the room
The committee also notes the importance of young people being able to
live independently in their own home or their own room in supported
accommodation. Ms Anita Geach-Bennell and her husband currently support their
two daughters to live in independently in their own home. Ms Geach-Bennell
outlined the importance of this independent living arrangement to her daughters
as a means of participating in society and everyday activities:
While I am alive, my girls will not enter a nursing home.
They will continue to access their community, they will ride their bikes, and
they will go to shows.
When Nicole and Craig Jones moved to Karroong:
Nicole was ecstatic, she wanted everyone to know about where
she was living and how it was going for her. She was proud of her room and
loved decorating it.
For Craig, it was important that:
He could bring his beloved dog Dusty with him...
Respite—adequacy and access
Respite can be the most effective mechanism to support a young person's
primary carer—especially if that carer is a family member—and allow a young
person to remain in their family home. Respite care allows the primary carer to
take a break from caring duties. Respite may be in the form of partial
care—where another carer may undertake specific tasks such as cleaning,
shopping or taking a young person on an outing—or full care, where another
carer undertakes all caring duties for a short defined period lasting days or
weeks. This fulltime care can take place in the family home or in another
supported accommodation facility. Respite allows the primary carer to have a
mental and physical break from the demands of caring. It can also allow them to
focus on other caring duties or responsibilities they might have such as
raising other children, working or studying. Respite can be the difference
between a young person being relinquished to an institution or remaining in
their own home with their family.
Mr Gregory McMahon of Carpentaria Disability Services emphasised the
importance of respite for maintaining the family unit:
[F]amilies could certainly benefit from more respite. You
cannot give too much. You can term that as 'early intervention' if you want...
Coming back to the question of how you would do it better,
for me it is: keep families together. If you build those resources and you give
them those regular breaks—that is not me trying to get my service bigger—that
respite can go right across. Everyone can be in that game, because it can be
done in the community. I would much rather see it happen in the community than in
a centre based facility.
Evidence to the committee suggested that there is an inadequate supply
of respite leading to people moving into aged care by 'default'.
The Australian Bureau of Statistics states that over 81 per cent of resident
parent primary carers have 'never used respite care'.
A common story was relayed by Dr Withall: 'We can't manage any more. There's no
respite. We can't get a break.'
Others, like Ms Robyn Keyte, feel prevented from leaving the hospital or an
[W]hen we go out, if we leave, we have not got respite
anymore. We are not allowed to come back. So that is another issue. Our carers
need rest but also we need somewhere to go that knows how to turn us—and not to
Ms Natalie Ryan of the service provider Royal Rehab highlighted a key
constraint hindering the availability of respite—funding:
We have supportive accommodation vacancies. In some instances
we could accommodate them, but we understand there is a process involved. So we
cannot even offer respite. We cannot even offer in-home behaviour support. We
cannot offer anything, because there is no funding, and they have to go through
this process that often takes many years.
Dr Withall noted that 'not only is there a lack of [respite] services
that can accept [young people], but they also find it very difficult to handle
people who are quite young and fit and agile'.
Dr Withall continued:
[P]eople do want to live in the community for as long as
possible and families want to stay together for as long as possible. It is much
more important for young onset dementia. That would be easier if there was more
respite. That is a major unmet need in young onset dementia because there are
quite a number of units that just say, 'The person is younger; we're going to
have difficulty finding a place for them,' or, 'They have a lot of behavioural
symptoms,' so it comes around again—'We're going to have difficulties finding a
respite place for them.' So families tend to get into crisis with young onset
Some carers have been able to access respite, only to find the care
provided to be inadequate. Mrs Vicki Brous found that when she carefully chose
a 10 day respite for her husband, many fundamental items relating to his care
were overlooked. This resulted in the respite stay being more stressful than if
he had simply stayed at home. Mrs Brous noted that 'after this experience, we
will never trust an aged care facility to provide [respite] again'.
The committee recognises the importance of adequate and accessible
respite as a means to support young people and their family carers.
Transition—crisis driven or planned
Many young people will need to transition from one form of accommodation
to another at various points in their lives. There are many iterations of the
transition journey but fundamentally it will involve movement to or from the
following—hospital (acute care), supported accommodation, RACF, family home,
shared or independent living. Transition, when coupled with planning and
choice, can result in outcomes that suit the young person and their family.
However, if transition is crisis‑driven—for example, a parent carer dying
suddenly or the young person's condition rapidly deteriorating—then often
decisions relating to the new accommodation are not considered or informed, and
ultimately not best suited to the young person. Many submitters have noted the
lack of advocacy and support to assist young people and their families to make
There is a long-standing fundamental problem in the provision
of support needed by young people with severe disabilities. The result has been
families under enormous pressure as they seek to meet the needs of their
children and many young people with severe disabilities being
institutionalised, including in aged care facilities, for want of appropriate
support in the community. Also, health services have been inadequate to meet
the often complex health needs of young people with severe disabilities.
The importance of providing support to families of young people,
particularly in times of crisis was highlighted by Mr Gordon Trewern, CEO of
Nulsen Disability Services:
Often the focus is on the person with a disability. There
also needs to be a focus on the family supporting the person with a disability.
The crisis is certainly central to the person who has suffered the acquired
brain injury, but the family itself is going through a huge trauma. Often that
impedes them from making the right decisions or asking the right questions. 'Is
this the right direction we should be going in?' 'Does this service provider
have the skill and expertise to provide support to my child or partner?'
The committee received evidence from Ms Stephanie Gotlib outlining the
principles behind successful transition from hospital to home:
The other model—and I can only speak of how it was when I was
there, and I know it has changed since then—is the Family Choice Program, which
was for children with complex medical care needs. But they had a home care
nurse who trained family and a range of attendant carers to provide the complex
care. It was so kids did not have to live in hospital. Then they had ongoing
case management and looked at what the family's needs were, what the children's
needs were, or vice versa, and looked at how they could wrap the services
around the child, their developing needs and their life. It was an expensive,
Rolls Royce kind of program at the time when I was there, but it worked and
These principles—early intervention, support pre- and
post-transition, recognition of the role of the carer, and a discussion with
the family that leads to choices—when adopted together result in quality and
sustainable outcomes for young people and their families. The issue of
transition, advocacy and support services will be discussed further in Chapter
This chapter has outlined the inappropriateness of residential care for
young people living with disability. The committee notes that RACF are designed
for older Australians and are not funded to provide care for young people or
people with severe disability. It is the committee's view that everyone is
entitled to live in a home of their choosing.
The committee recognises the importance of young people having access to
a key worker early in the diagnosis of a progressive disease or disability. The
key worker can assist a young person and their family navigate government
departments and service providers, and avoid making uninformed decisions. The
committee has been presented with evidence of key worker programs that have successfully
worked. The idea of the key worker will be expanded on later in the report.
The committee is also concerned about the inadequate provision of
respite services. This chapter has highlighted the value of these services and
that the provision of additional funding can result in improved outcomes for
both carers and young people by allowing young people to remain in the community.
The committee recognises that the mental health of young people in
residential care is often exacerbated or acquired because of the emotional and
psychological impacts of an environment which is not age-appropriate. It is the
committee's view that there must be specific attention given to ensuring good
mental health and well-being of young people in care.
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