Chapter 2
Young people in residential care and unmet need—trends and statistics
Introduction
2.1
This chapter discusses the following terms of reference:
-
The estimated number and distribution of young people in care in the
aged care system in Australia, and the number of young people who require care
but are not currently receiving care; and
-
Short- and long-term trends in relation to the number of young people
being cared for within the aged care system.
Young people living in the residential aged care system and other cared
accommodation
2.2
In the context of this inquiry, young people are defined as those under
65 years of age. The young people referred to in this inquiry are most likely
subject to severe or profound core activity limitation. A person may experience
a severe or profound core limitation if they require assistance (sometimes or
always) with self-care, mobility and communication. In addition to these core
activity limitations, a person with disability may experience obstacles to
participation in education, employment, and social or recreational
opportunities. These are referred to as participation restrictions.[1]
2.3
The disabilities that these young people present with are generally
the 'result of catastrophic injury or through progressive [and degenerative]
neurological diseases', with most of these people 'categorised as high
dependency enter[ing] residential aged care on discharge from hospital'.[2]
Examples of catastrophic injury include acquired brain injury (ABI) and
traumatic brain injury (TBI). Progressive and degenerative neurological
diseases include multiple sclerosis, neuromuscular disorders (such as muscular
dystrophy), motor neurone disease, Huntington's disease and Parkinson's
disease.[3]
Those with intellectual disabilities such as Down Syndrome or severe autism may
find themselves in a RACF not as a result of their disability, but due to the
advanced ageing or death of parent carers.[4]
Aged care
2.4
The committee notes that aged care facilities are designed for those
aged over the age of 65 years and that there are a range of age-appropriate
supports for those aged over 65 living in these facilities. However, evidence
to the committee throughout this inquiry has shown this is not the case for
those under 65.
2.5
Young Australians under the age of 65 currently occupy 5 per cent of
residential aged care facility (RACF) beds. This is primarily because the
current disability system cannot provide appropriate supports and services for
these young people.[5]
2.6
The Productivity Commission's Report on Government Services states that
in 2013–14 there
were 7 183 young people living in residential aged care (YPIRAC) facilities
across Australia, with the vast majority of these people living in NSW,
followed by Victoria and Queensland. Nearly 90 per cent of these people were
aged between 50–64 years.[6]
This data can be seen below in Table 2.1. A more comprehensive breakdown of
young people by age cohort can be seen below in Table 2.2.[7]
Table 2.1: Number of young people (<65 years of age) in residential aged
care facilities by state and age group in 2013–14
Source: Australian Government
Productivity Commission, Report on Government Services 2015, Table
14A.68.
Table 2.2: Number and per cent of young people in permanent residential
aged care by age group in 2013–14
|
Age group
|
Number of young people
in care
|
Per cent of total
|
|
<20
|
2
|
0.03
|
|
20–24
|
13
|
0.18
|
|
25–29
|
22
|
0.31
|
|
30–34
|
36
|
0.50
|
|
35–39
|
60
|
0.83
|
|
40–44
|
190
|
2.64
|
|
45–49
|
404
|
5.62
|
|
50–54
|
891
|
12.39
|
|
55–59
|
1 867
|
25.95
|
|
60–64
|
3 709
|
51.56
|
|
TOTAL <65
|
7 194
|
100.00
|
Source: Australian Institute
of Health and Welfare, Submission 141, p. [5].
2.7
The committee notes
that the committee has received evidence suggesting a wide range of statistics
and is concerned that these statistics appear to be unreliable, and may in fact
be understated. Most submissions agreed that there are currently between
6000 to 7000 young people living in aged care, the committee has received
evidence suggesting that these numbers could be higher.[8].
Aged and Community Services argues in its submission that between 2008–09 and
2013–14, the number of young people in aged care have increased from 7 755 to
8 658.[9]
2.8
Further to this, there
is confusion in some states as to the age at which it is considered
inappropriate for a person to live in aged care. In evidence to the committee
Dr Ron Chalmers, Director General of the Western Australian Disability Services
Commission (DSC) argued that Western Australia only considered those under 50
living in RACF as being inappropriately placed.
[A]t the moment we are aware of only about 50 people under
the age of 49 who, we believe, are inappropriately placed...
Clearly, there are hundreds of people in that range,
predominantly between 50 and 60, and the bulk of those people are there for
medical reasons—again, I come back to say I talk from a Disability Services
perspective—but the number of people who we are aware of and whom we focus on
who would be eligible for disability services, either current or NDIS, is 49 [people
under the age of 50] at the moment.[10]
The committee notes its concern that the Director General of
the DSC does not deem the 50–64 year cohort as being inappropriately placed in
RACF or consider that they require a specific focus. It is the committee's view
that it is the 50–64 year cohort—who
make up nearly 90 per cent of all young people living in RACF—that require
urgent attention.
Cared Accommodation
2.9
It is important to note that this inquiry is not limited to those young
people in aged care; it also includes young people living in other congregate
or institutional care. In their submission, the Australian Bureau of Statistics
stated that in 2012 there are 11 000 people, aged 64 years or less, with
severe or profound core-activity limitation living in cared accommodation.[11]
Cared accommodation is defined as hospitals, nursing homes, hostels and other
homes with six or more people.[12]
As such, taking into account that there are approximately 7 000 in aged care, there
are nearly 3 000 people living in some form of congregate or institutional
care.
Trends for young people
2.10
The total numbers of young people living in RACF has fluctuated from a
low of 6 451 in 1997–98 to a peak of 7 516 in 2007–08. Between 1997–98 and
2013–14, young people living in RACF decreased from 19 to 2 for those aged
under 20 years; from 118 to 37 for those aged under 30 years; from 1 358 to 727
for those aged under 50 years. These represent decreases in numbers in aged care
by 950, 318 and 186 per cent respectively. For those aged 50–64, there was an
increase from 5 093 to 6 487 for young people living in aged care; and from 2
686 to 3 709 for those aged 60–64. These represented increases of 127 and 138
per cent respectively.[13]
2.11
It is clear from these statistics that there are two distinct groups of
young people that receive different service responses resulting in different
accommodation and support options. There are those under the age of 50, where
numbers are decreasing, and there are those aged 50–64 where numbers are
increasing.
2.12
There are two key trends behind these statistics, one is numbers of
people being admitted to RACF and the other is numbers of those returning to
live in the community within these two age cohorts. Between 2006–07 and
2013–14, there has been a decrease of 0.9 per cent of admissions into RACF for
those aged 0–49 years; this compares to a 26.3 per cent increase for those aged
50–64 years during the same period. There has been a 16 per cent increase in
the numbers of young people leaving RACF to return to live in their own home or
with family (aged 0–49). Conversely, for those aged between 50–64 years, there
has been a 6.3 per cent increase in the numbers of young people moving from the
community into RACF.[14]
2.13
There have been a range of different experiences between the states and
territories during the period 2006–07 and 2013–14. For those under the age of
49 years, Tasmania and the NT had less than five people in RACF, whilst the ACT
records none. Queensland recorded a 33 per cent fall. The states with larger
populations registered small increases. The general trend for this age group
was either down or small increases. For the 50–64 years age group during the
same time period, nearly all states except the ACT—where numbers decreased by
25 per cent—registered an increase in numbers living in RACF. Tasmania recorded
the greatest percentage increase (80 per cent), although this started from a
small base. The greatest increase in absolute numbers occurred in the most
populous states—NSW, Victoria and Queensland.[15]
Recent initiatives and inquiries for young people with disability in RACF[16]
2.14
In 2005, the Senate held an inquiry into Quality and equity in aged
care, with Chapter 4 addressing the issue of young people in RACF.
Recommendation 22 of that report states:
The Committee is strongly of the view that the accommodation
of young people in aged care facilities is unacceptable in most instances.
The Committee therefore recommends that all jurisdictions work
cooperatively to:
-
assess the suitability of the location of each young person
currently living in aged care facilities;
-
provide alternative accommodation for young people who are
currently accommodated in aged care facilities; and
-
ensure that no further young people are moved into aged care
facilities in the future because of the lack of accommodation options.[17]
2.15
In response, the Council of Australian Governments (COAG) agreed to a
five year initiative—Younger People with Disability in Residential Aged
Care (YPIRAC)—in February 2006. The YPIRAC program has been the key driver
behind the fall in numbers for the 0–49 year cohort.[18]
This five year Council of Australian Government (COAG) initiative operated from
2006 until 2011. The main objectives of YPIRAC were:
- People moving out of residential aged care to more age-appropriate
supported disability accommodation
-
People at risk diverted from inappropriate admission to residential aged
care
- People provided with enhanced services within a residential aged care
setting, for whom residential aged care is the only available, suitable
supported accommodation option.[19]
Despite making up a much lower proportion of the total in
aged care, the primary beneficiaries of the YPIRAC program have been the 0–49
year cohort. There has been no sustained push for those aged 50–64 years to be
moved into the community. This trend is illustrated in Figure 2.1, where a
sustained fall in numbers of people (aged 0–49 years) admitted to residential
aged care falls during the years when the YPIRAC program is operating
(2006–2011), with increases in admissions from the programs end. The YPIRAC
program will be discussed in more detail in Chapter 5.
Figure 2.1: Number of people (aged 0–49 years) admitted to permanent
residential aged care
Source: Department of Social
Services, Submission 55, p. 7.
2.16
On 1 January 2009, the National Disability Agreement (NDA) replaced
YPIRAC and the Commonwealth State and Territory Disability Agreement. However,
the YPIRAC targets remained in place and were assessed in the final report for
the YPIRAC initiative:
Over the five years of YPIRAC to 2010–11, an estimated 1,432
received services from the YPIRAC initiative. Of these, an estimated 250 people
achieved the first YPIRAC objective (a move out of residential aged care to
more appropriate accommodation); 244 people achieved the second YPIRAC
objective (diversion from residential aged care); and 456 people achieved the
third YPIRAC objective (receiving enhanced services within residential aged
care, when this was the only available, suitable accommodation option).
Over the life of the YPIRAC initiative, the total number of
permanent residents of residential aged care under 65 has generally decreased
and, in particular, there has been a 35% drop in the number of persons under 50
living in permanent aged care since 2005–06.[20]
2.17
However, in 2011, a joint study conducted by the Summer Foundation and
Monash University assessed that the first four years of the YPIRAC program had
not met its objectives. The study found:
[T]he development of new accommodation options has been slow.
The 5‑year program aims to move 689 young people out of nursing
homes; in the first 4 years of the initiative 139 people had been moved
out.
However, the study also noted that 'the lives of those who
have been helped by the program have been enormously improved'. The report
concluded with the following observation:
The accommodation options currently being developed for this
target group will soon be at capacity. Without sustained investment in
developing alternative accommodation options and resources to implement
systemic change [approximately] 250 people under 50 are likely to continue to
be admitted to aged care each year.[21]
2.18
In 2014, the Senate held an inquiry into Care and management of
younger and older Australians living with dementia and behavioural and psychiatric
symptoms of dementia, with Chapter 7 examining the issue of younger onset
dementia. Recommendation 17 of this report states:
The committee recommends that a review of the adequacy of
respite facilities for Younger Onset Dementia patients be carried out urgently.
Recommendation 18 states:
The committee recommends that the Commonwealth fund the
development of a pilot Younger Onset Dementia specific respite facility at
either the Barwon or Hunter area National Disability Insurance Scheme trial
sites.[22]
2.19
The YPIRAC initiative and the NDA will be discussed in more detail in
Chapter 5.
Unmet need
2.20
In addition to quantifying the number of those young people who
currently live in residential care and those who are transitioning, it is also
important to quantify the level of unmet need. That is, those individuals
living in the community who require further assistance now or in the future.
2.21
As discussed earlier in this chapter, this inquiry is focused on those
with a severe or profound core activity limitation. According to the Australian
Bureau of Statistics, there are:
[A]pproximately 440,700 people with severe or profound
disability under the age of 65 and who are not in cared-accommodation who have
a need for formal assistance (such as from a nurse, a Government service, a
housekeeper, etc). Around 280,500 of these people with a need for formal
assistance report that their need was unmet.[23]
2.22
Clearly these statistics do not differentiate between those who require
access to support services and those requiring accommodation. However, a 2005
report by the Australian Institute of Health and Welfare (AIHW) found that for
people with severe and profound core activity limitation 'unmet demand for
accommodation and respite services was estimated at 23 800 people [and] for
community access services at 3 700'. The AIHW classified unmet demand as the
total of undermet demand and unmet demand.[24]
2.23
The committee received evidence from Ms Taryn Harvey, CEO of
Developmental Disability WA about unmet need being as much about those who
indicate a need for a planned transition as those who are currently not having
their needs met. Ms Harvey spoke specifically about the group of young people
with 'significant intellectual disabilities who are [currently] living at home
with [ageing] parents' and will need to plan for the day when their parents are
unable to care for them any longer:
One of the priorities for us in working on supporting the
NDIS is how we will negotiate the concept of 'reasonable and necessary' and how
that will intersect with the expectations of individuals and families around
making planned transitions out of the family home: what does 'reasonable and
necessary' mean when people are anticipating wanting to make a planned
transition as opposed to reinforcing the existing system that we have via CAP
[Combined Application Process], where people are actually not making
transitions until the system deems that it is necessary?[25]
2.24
In its submission, Children with Disability Australia suggests that
'identifying the number of young people who require high levels of care and who
are at risk of entering into the aged care system is complex'. The Australian
Bureau of Statistics notes that there are currently 11 300 primary carers aged
over 65 years of age caring for someone with a severe or profound disability;
there are over 40 000 primary carers aged 50–64 years.[26]
Although this data is valuable there is a need for more comprehensive data
detailing current and future needs. It is unclear how many of these young
people will be accommodated in residential care facilities as their parents age
and their capacity to fulfil their caring duties decreases.
2.25
Some partners, families and friends manage to care for their young
disabled through sheer courage and determination with little support from government
and service providers. In most cases, it is the unexpected crisis that can
upset this delicate equilibrium. The crisis point can manifest in many forms
but will likely relate to the health of the carer, other caring or employment
responsibilities (including other children), an increase in the level of care
required due to deterioration of the care receiver's health, financial stress,
and mental and physical exhaustion after a long period of caring with no
respite.[27]
The importance of carer respite in the context of maintaining family units will
be discussed in Chapter 3.
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