Why are younger people
with disability in residential aged care
facilities?
It appears that younger people with
disability end up living in residential aged care
facilities partly because there are no other options
available. Even if there are other options, people end up
in aged care facilities because these options are not
sought and explored. In the past some of the reasons why
younger people with disability entered residential aged
care facilities included:
- A lack of other accommodation
and support alternatives;
- Ageing carers 'bringing along'
a family member with a disability when moving into the
nursing home;
- Residential aged care
facilities were perceived by many as the only 'secure'
option;
- Residential aged care
facilities were known to people while other
alternatives were not generally well known and
understood;
- A Residential aged care
facility may be the only facility close to family
members;
- Expectations of 'high quality'
medical/ nursing care in residential aged care
facilities; and
- Residential aged care
facilities are seen as a 'final' alternative for
people with high medical/ nursing care
needs.
How many younger people with
disability are in residential aged care
facilities?
The number of younger people with
disability in residential aged care facilities has been
increasing since 1990.
The following data is indicative
only and does not represent absolute numbers.
The Australian Institute of Health
and Welfare (AIHW) reported 2302 people aged under 65
years living in aged care facilities in NSW at June 1999
(AIHW, 2000). AIHW reported 2339 residents aged under 65
years in NSW at June 2001.
Recent (unpublished) data obtained
from the Commonwealth Department of Health and Aged Care
indicates that in residential aged care facilities in NSW
at June 2002 there are:
- 2215 people under 65 years (28
of whom are Aboriginal or Torres Strait Islander
peoples);
- 420 people under 50 years (10
people are Aboriginal or Torres Strait Islander);
and
- 28 people under 30 years (1
Aboriginal or Torres Strait Islander
person).
Of those residents under 50 years,
344 are classified 'high care' (Nursing Home Level Care)
and 67 classified 'low care' (Hostel Level Care) on the
Department's Residential Classification Scale
(RCS).
Of those residents under 30 years,
27 are classified high care and 3 are classified low
care.
At a recent NSW Parliamentary
Inquiry into Disability Services the Department of
Ageing, Disability and Home Care made available the
following:
"The figure most often
quoted is 1,316 people aged under 60 live in
residential aged care facilities … 883 are aged
between 50 to 60 years. 433 are aged 50 years or less.
Of those aged 50 or less, one in ten have an
intellectual disability or developmental disability,
one in three have a brain injury, two in three require
high levels of care"
Funding and Program
barriers
There are a range of program
barriers, including barriers within and across
Governments. Residential aged care facilities are funded
by the Federal Government through the Department of
Health and Aged Care. This funding is not part of the
Commonwealth State (and Territory) Disability Agreement
(CSTDA).
In the early '90s an attempt was
made to relocate younger people with disability from
residential aged care facilities through the provision of
funds to State governments. Since then, a combination of
pressures for discharge from hospitals (such as the
improved treatment of people sustaining catastrophic
injuries, such as brain injuries, as well as medical
advances in treatment and maintenance of degenerative
conditions) has meant that younger people with disability
continue to be placed in residential aged care facilities
due to lack of appropriate community based care options
being researched and funded by State
governments.
Community aged care packages
(CACPs) in particular have been used to provide community
care to younger people with disability. Although the
program targets older people in the community who have
complex care needs, younger people with disabilities can
also receive packages if their care needs fit the
criteria of the program and if there are no other
appropriate services operating in their area. In 2000,
the total number of CACP recipients was 16,000. Of those
about 7% went to people aged under 65, and only 1% of
care recipients were under the age of 50.
It is estimated that the cost to
accommodate a younger person in a nursing home is $319
per day . The difficulty arises in enabling these funds
to 'follow' a younger person with disability. This
involves a transfer of funds from the Commonwealth
Department of Health and Aged Care to pay for community
based care as part of a disability accommodation funding
program, which is considered a State responsibility under
the CSTDA.
Lack of clarity of government
responsibility
In order to provide appropriate
supports to younger people with disability with high
support needs currently living in residential aged care
facilities, any approach must necessarily involve
Commonwealth, State and local government agencies;
particularly:
- NSW Department of Ageing,
Disability and Home Care (DADHC)
- NSW Health
- NSW Department of
Housing
- Planning NSW
- Transport NSW
- Local Government community
service and planning sections
- Commonwealth Department of
Family and Community Services
- Commonwealth Department of
Health and Aged Care
The barriers to a joint approach
range from resource constraints to an unwillingness to
engage in and take responsibility for younger
people.
For example, in providing services
to younger people with high intensity needs, there is
clearly an interface between their acute care needs and
their need for accommodation and non-medical supports.
The medical needs of people fall under the jurisdiction
of NSW Health. Support services to people with disability
are generally provided in the community or through DADHC
disability services. Where people with disability have
high medical needs it is unclear whether the primary
responsibility falls with NSW Health or DADHC or
both.
In addition, there has been a
policy vacuum between the Commonwealth and State
governments regarding the responsibility for younger
people with disability currently living in residential
aged care facilities
The 1997 Commonwealth Aged Care Act
provides subsidies and services for older people in
residential aged care facilities. These provisions are
intended for older people, generally over 65 years,
although the legislation is not limited to that age
group. Residential aged care facilities provide a range
of levels of care for people in need of more intensive
nursing care. People with disability in residential aged
care facilities are taking places originally intended for
older people requiring a degree of intensive nursing
care. While the supports younger people need may mirror
those of older people, they are not the same, nor should
they be provided in the same way at the same location.
Responsibility for ensuring that residential aged care
facilities are providing services for the target group
for whom they are funded should be clearly identified by
government.
While there is no clarity of
responsibility between State and Commonwealth
governments, younger people with disability living in
residential aged care facilities do not have access to
the same provisions as people with disability receiving
services under the NSW Disability Services Act 1993
(DSA). The DSA states that people with disability in NSW
are entitled to the same basic human rights as other
members of the community and to access the same
opportunities, so far as possible, as people of the same
age without disabilities. The placement of younger people
in residential aged care facilities is inconsistent with
the provisions of the DSA. Responsibility for ensuring
that young people with disability receive services which
accord with the principles of the DSA should be clearly
identified by government.
Lack of options, information and
certainty
Younger people in nursing homes and
other residential aged care facilities reside there
because of a lack of available, reliable and appropriate
alternative service options. It could be argued that if
such service options were generally known and available,
no younger person with disability with high support needs
would enter a residential aged care facility.
Carmel
Carmel is 41 years old and has Turner's Syndrome.
Until recently she lived independently in the
community in her own flat.
In 1999 Carmel
had a stroke and is now paralysed on the right side.
She can walk with the help of a walking frame, but is
prone to falls, and cannot use her right arm at all.
After a spell in a residential aged care facility, her
sibling had her moved to the residential aged care
facility where her mother lives.
Carmel is
extremely depressed at losing her independence. She
has retained her flat, but does not have the support
services to move back into it. The residential aged
care facility does not take her out and so she spends
all day, every day in the residential aged care
facility, with no one of her own age to talk
to.
Carmel attempted
suicide and was sent to hospital briefly. She is now
back at the residential aged care facility with
support from the hospital, which means a psychiatric
nurse visiting regularly. Carmel has declined to take
anti-depressants as a trial of them made her feel less
steady on her feet. Staff at the residential aged care
facility are very concerned about Carmel.
One argument used to justify
admitting younger people with disability to residential
aged care facilities is that the disability services
sector does not have the capacity to provide for their
needs. It is clear, however, that the real issue is much
more likely to be about insufficient resources and in
rural and regional areas a lack of resources and
services. This lack of resources is underlined by the
ability of people with sufficient funds (i.e. people with
high and complex nursing care needs who have received
sufficient compensation) to purchase appropriate support
services privately in the community. Despite their
complex needs these people do not move into residential
aged care facilities. Therefore the availability of
services is based on purchasing power which proves that
with sufficient resources, capacity can be generated and
alternative solutions can be found.
Often families have no information
about the range of support options available through
community care and other home supports which may delay
the need for more intensive services. Families may also
not have the experience or access to support to identify
and plan appropriate community based care for their
family member. Families feel they require certainty of
service provision and decide that residential aged care
facilities provide that certainty, despite not being the
best service option for the younger person with
disability.
Sandra
Sandra is 29 years old and has an intellectual
disability; she is also wearing callipers and needs to
take regular medication.
At the age of
two Sandra was placed into care and spent the next
sixteen years at a large residential facility for
children. Since the closure of that facility, Sandra
has lived in several residential aged care
facilities.
The only family
member who has any contact with Sandra is her
grandfather, who is a GP. He has approved medication
and gave consent to her being moved from one
residential aged care facility to another. He is
satisfied that she is being 'cared for' because she
has a placement in the residential aged care facility.
He is mistrustful of government departments and does
not want DADHC to become involved.
Sandra has no
day programs and receives only a very basic service
from the residential aged care facility.
Placing a younger person in a
residential aged care facility may be in response to a
crisis and may appear to be the only option in the
absence of more appropriate services available. High
levels of unmet need for disability services also add to
this crisis. Despite the best intentions for seeking
appropriate placement, the admission of the younger
person into a residential aged care facility immediately
reduces their crisis in accommodation and
support.
This lowers the priority rating for
that younger person which in turn means that by being
placed in the residential aged care facility the person
is off the crisis/ priority list and therefore the person
does not constitute a crisis for the government any
longer.
Cultural Issues
While the problems experienced by
any younger person with disability residing in a
residential aged care facility also apply to Aboriginal
and Torres Strait Islander (ATSI) peoples with disability
and people a from non-English speaking background (NESB)
with disability, the emphases are different.
For many younger indigenous people
with disability living in a nursing home the sense of
isolation is enhanced when the person lives far from
their own land, their home ground, their
people.
The cost of travel for visits may
be prohibitive for many families. In general, a family
member with disability having to live in a residential
aged care facility, away from their family, could
exacerbate their sense of desolation and marginalisation.
The inability of the family to provide for the person
with disability may add to the pressures and guilt of
families already affected by dispossession and oppression
and can result in cutting all contact with the family
member with the disability.
For some people from a NESB with
disability one of the key issues is the perception that
highly bureaucratic systems (such as residential aged
care facilities) provide better care and support than
families and non-institutionalised systems. In part, this
belief is based on a perception of the efficacy and
efficiency of 'white, western bureaucracy'. The dominance
of those kinds of bureaucracies is seen by many as a
pinnacle of civilisation, especially by those who arrive
in Australia from countries with very few and not very
well- developed bureaucratic systems.
This belief is also fuelled by a
perception that professionals know best, which can result
in a complete severance of any relationship between the
younger person with the disability and their
family.
In addition, the availability of
ethno-specific cluster residential aged care facilities
makes them a seemingly attractive alternative to
disability services, which only provide very limited
ethno-specific services. If there is any choice available
to people, they have to choose between a culturally
appropriate service and an age appropriate
service.
Finally, the lack of extended
family support systems (including the difficulties in
obtaining carers' visas for family members from overseas)
and the overall lower socio economic status of migrant
families adds to the limited ability of families to
support people with disability.
Morris
Morris is 54 and from the former Yugoslavia. He
has a brain injury as the result of a motor vehicle
accident. He is using a wheelchair, requires high
levels of physical care and has limited ability to
communicate verbally.
Morris has
resided in a number of residential aged care
facilities since his discharge from a brain injury
unit in 1996. Although awarded a compensation payment,
the amount is insufficient to provide him with the
necessary funds to purchase accommodation and support
in the community.
There are no
ethno-specific accommodation services in the
community; he presently lives in an ethno-specific
cluster residential aged care facility.
Incompatibility of systems:
younger people with disability in an aged care
system
Currently assessments for
eligibility to residential aged care facilities are
undertaken by Aged Care Assessment Teams (ACATs). These
teams are made up of professionals trained and focused on
the assessment of older people.
Whilst ACAT assessments are one of
the key pathways by which many people with disability
enter residential aged care facilities, the capacity,
skills and knowledge of these teams in assessing younger
people with disability may be limited, due to the focus
on older people. However, due to the high levels of unmet
need in disability support and accommodation services and
the number of people in 'crisis' seeking assessments by
ACATs, there is significant pressure on ACATs to assess a
younger person with disability for placement in
residential aged care facilities.
It may also be possible that in
those assessments the physical care needs of a person
with disability are focused on and maybe overemphasised,
whilst cognitive, behavioural, support, cultural and
personal issues, in particular issues relating to
sexuality, are overlooked, underestimated or
discounted.
There is grave concern that
residential aged care facilities are not obliged to
respond to the changing needs of younger people with
disability, either via monitoring and reassessment or
development of an Individual Service Plan as required of
disability services by the NSW DSA. It is possible that
any focus on the cognitive, behavioral and social needs
of a younger person with a disability occurs only when
problems arise for the provider due to the person's
expressed behaviours. For example, the nature of the
disability of the younger person (e.g. alcohol related
dementia) may cause additional problems if there is no
access to any age-appropriate social life, no appropriate
mechanism for sexual expression, no peers to talk to or
to share interests with. A response by residential aged
care providers is likely to be similar to the responses
to people with age-related cognitive decline (for
example, dementia and Alzheimer's disease).
Costa
Costa is 48 and experiences cognitive impairment
due to alcohol related brain injury. He is physically
able but cannot undertake activities of daily living
and is at risk of neglect and vulnerable to abuse, if
not provided with accommodation and care. His previous
boarding house accommodation provided insufficient
support and protection. Costa now lives in a
residential aged care facility.
Furthermore, in a residential aged
care facility environment the focus is clearly on
maintenance, prevention and slowing of further
deterioration. This is clearly different from the
dominant focus in disability service provision, which is
on identifying and developing people's ability and
potential, and re-assessing and adapting this over time.
Such a system of maintenance for many younger people with
disability may result in a decrease of skills and
abilities.
Amanda
Amanda is 21 and she has a moderate to severe
intellectual disability as a result of a birth injury.
She is using a wheelchair and has high physical care
needs but no nursing needs. Amanda was placed in a
residential aged care facility on leaving a
residential 'special' school she had been attending.
The nursing home
has over 100 residents. Amanda is the only person
under 50 years of age. In the three years since her
admission to the facility there has been an
appreciable deterioration of her abilities and skills.
Amanda has lost self-caring skills and now exhibits
challenging behaviours. Amanda has little to stimulate
her and she is clinically depressed.
It is the
opinion of all professionals involved that Amanda's
deterioration is due to the inappropriate environment
she is living in.
In addition, deaths are a reality
in residential aged care facilities. However, while death
may be expected for older people who are in end stages of
life, death ought not to be a frequent event in the
environment of a younger person with disability. The
placement of younger people in aged care facilities where
death is an accepted and expected occurrence may
contribute to the false perception that they are in end
stages of life 'awaiting death' and this may influence
the care received.
Bob
Bob is 56 years old and has a chronic depressive
illness. He has attempted suicide on several occasions
in the past. Bob has no physical care or nursing care
needs but requires an environment that offers 24 -
hour supervision to reduce the risk of further suicide
attempts.
He was placed in
a nursing home because there were no services that
were prepared to provide the level of supervision
required.
People with disability have a
right to live as valued individuals receiving support
to:
- live in safety and security,
free from neglect, abuse and harm;
- experience opportunities for
positive growth and development;
- be contributing members of
their community.
These rights are stated in
international conventions on the rights of people with
disability and are further enshrined in the
DSA.
The following system of support
must be in place for people with disability to live
valued lives in accordance with these
principles:
- A lifetime guarantee of support
for individuals with disability as and when
needed;
- Planning and resources to
provide a coherent and comprehensive system of
support, i.e. a planned, resourced and effective
service delivery and specialist support system through
government and non-government agencies, including
effective staff training; a planned and resourced
system to allocate funding packages to individuals; a
planned and resourced system for allocating funds to
meet developmental and changing needs of
individuals;
- Service planning and design
that identifies and highlights ongoing opportunities
for learning and development;
- Infrastructure and specialist
support to effectively support the individual,
particularly as needs change;
- A planned, resourced and
effective system of monitoring supports and services
to ensure quality of service for the
individual;
- A commitment to continuous
improvement in service quality and effectiveness,
including responsiveness to individual and changing
needs;
- Community environments that are
accessible and welcoming to, and inclusive of people
with disability.
People with disability may
experience vulnerabilities and therefore safeguards and
protections are required. These are particularly critical
when the individual is experiencing a major life-change.
It is essential that the following safeguards are
provided within the system of support for people with
disability:
- Meaningful choice within the
framework of the Disability Services Act,
including:
- a right to be consulted and
participate in any change process;
- choice of service provider and
choice of how support is provided;
- responsiveness to an
individual's choice of life-style;
- Access to independent consent
mechanisms, including guardianship;
- Access to independent advocacy
support;
- Access to independent
complaints and appeals processes;
- A responsive process, which
assesses the recurring daily support needs of
individuals and which includes an understanding of,
and means of recording, the identified potential
support needs of individuals to grow, develop and
change.
Non- Compliance with NSW
legislation affecting people with disability
At present, people with
disabilities in NSW are covered by two key pieces of
legislation - the NSW Disability Services Act 1993 (DSA)
and the Community Services (Complaints, Reviews and
Monitoring) Act 1993 (CRAMA).
The DSA provides for the funding
and provision of accommodation and support services by
state government and is underpinned by principles for
service provision which address the rights of people with
disability.
The residential aged care
facilities which accommodate younger people with
disability are covered by Commonwealth legislation and
programs which have no reference to the needs, rights and
interests of people with disability. Monitoring of
residential aged care facilities only occurs in the
context of the relevant Commonwealth legislation and has
no reference to the NSW DSA.
Clearly, there is a joint
Commonwealth/ State responsibility for the younger people
who currently live in residential aged care facilities.
The Commonwealth Aged Care Act governs the accreditation
of approved aged care providers, including residential
care. The NSW Nursing Homes Act governs the licensing and
operation of residential aged care facilities in NSW. The
DSA sets out the values, policy objectives and principles
that govern the provision of services to people with
disabilities in NSW. Clearly, the DSA makes provisions
for younger people with disabilities, which the NSW
Nursing Homes Act does not address.
The primary objective of the NSW
Disability Services Act is to:
'ensure the provision
of services necessary to enable people with a
disability to achieve their maximum potential as
members of the community'
The objectives of the DSA that
relate to community living and least restrictive
alternatives do not apply to residential aged care
facilities, therefore people with disability living in
these facilities are not afforded the protection that the
Act provides.
The following Applications of
Principles of the DSA state that services and programs
must be implemented so as to:
a) have as their focus the
achievement of positive outcomes for persons with
disabilities, such as increased independence,
employment opportunities and integration into the
community
In residential aged care facilities
people have no employment opportunities and limited
opportunity to increase independence.
d) meet the individual
needs and goals of the persons with disabilities
receiving services
In residential aged care facilities
there is no requirement for individual planning aside
from medical treatment. There is no opportunity to plan
for individual needs and goals.
g) promote the
participation of persons with disabilities in the life
of the local community through maximum physical and
social integration in that community
In residential aged care facilities
there is little opportunity for people to be involved in
community life.
h) ensure that no single
organisation providing services exercises control over
all or most aspects of the life of a person with
disabilities
While living in residential aged
care facilities the lives of people with disability are
usually controlled by that facility.
j) provide opportunities
for persons with disabilities to reach goals and enjoy
lifestyles which are valued by the community generally
and are appropriate to their chronological age
It is unlikely that a person with
disability living in a residential aged care facility
will have access to age-appropriate
activities.
l) ensure that persons
with disabilities have access to advocacy support
where necessary to ensure adequate participation in
decision-making about the services they receive
Residents of services funded or
provided under the DSA are entitled to the protections of
CRAMA. These include independent complaint mechanisms,
opportunity for review of their care circumstances and
access to the Community Visitor Scheme which reports to
the Minister and the Commissioner for Community
Services.
While people living in residential
aged care facilities will receive visits from the
Commonwealth Community Visitors, this is a volunteer
scheme which lacks the legislative basis for visitors to
report or act on concerns about residents' care. In
addition, while residents of aged care facilities have
access to the Aged Care Complaints Resolution Scheme,
their complaints can only be dealt with in the context of
the service type, with no reference to the DSA and its
related Service Standards.
