Younger Australians with disability were placed in residential aged care (RAC) because the housing and support services they needed had not been anticipated and developed.
Designed and funded to meet the needs of older Australians at the end of their lives, residential aged care is the wrong place for people with disability who are generations younger and have very different needs and priorities to older residents.
Continuing to place younger disabled people in residential aged care simply allows other services like health, housing and disability, to avoid their responsibility for developing the services these young people need to live.
While YPIRAC numbers have declined in recent years, younger people continue to be placed in RAC. Many people turn 65 without the opportunity to move but stop being counted as part of this group.
Solving the YPIRAC problem demands collaboration by health, disability and housing programs and by providers to develop the specific services these younger people need.
Government leadership to drive innovative service design, commissioning of new services and the full commitment of the NDIS is essential.
Who are younger people in aged care?
Younger Australians who were placed in aged care had a range of disabilities and impairments, including:
Progressive neurological conditions such as Multiple Sclerosis and Huntington’s Disease
Acquired brain injury
Psychosocial disability
Intellectual disability including Down Syndrome
Physical disability
Life in residential aged care
Visiting a residential aged care home can be confronting.
Younger residents tend to see their social and family relationships decline and have few visitors. They talk of the loneliness of life in aged care and the grief they feel when older residents with whom they’ve formed friendships, die around them.
Living with grief is often accompanied by a sense of hopelessness when younger residents do not see their life changing in the future. Inadequate support in RAC and the loss of their skills and abilities can increase the profound sense of loss many younger residents feel.
Where the NDIS provides funding for wheelchairs, hoists and other equipment as well as funding for younger residents to access the community, these NDIS services are rarely coordinated well with aged care or health services. Accessing quality rehabilitation and healthcare can often be problematic for younger people living in aged care settings.
Specialist services for younger people
As well as younger people living in generic aged care services, there are a number of aged care settings across Australia providing specialist services for younger people living with a particular disability.
These facilities provide targetted services for people living with acquired brain injury, psychosocial disability and progressive neurological conditions.
Established to meet the needs of a particular group of people when there was no other option, these facilities relied on the aged care system to respond where state and territory disability systems could or would not.
Even though their residents are under 65 and most are NDIS participants, the aged care system continues to provide accommodation and care in these settings.
Younger People In Residential Aged Care (YPIRAC) Targets and Strategy
On 25 November 2019 and in response to the Royal Commission into Aged Care Quality and Safety’s Interim Report, Neglect, the Morrison Government announced three Younger People In Residential Aged Care (YPIRAC) Targets and development of a YPIRAC Strategy to meet the Targets which were
no people under the age of 65 entering residential aged care by 2022;
no people under the age of 45 living in residential aged care by 2022; and
no people under the age of 65 living in residential aged care by 2025.
With the failure to achieve the 2022 Targets, the Albanese government has discarded the YPIRAC Strategy and focussed instead on achieving the Target of no younger Australian under 65 living involuntarily in residential aged care by 2025.
While a small number of younger residents have moved to live in the community through the YPIRAC Strategy, the reduction in numbers is largely due to younger people either dying in aged care while they wait; or individuals turning 65 and no longer being counted as part of the <65 YPIRAC group.
Despite the efforts and good intentions of many people to fix this issue, until the housing and support options they need are developed, aged care will remain a default destination for too many younger people.
We still have a long way to go for individuals to have the support and housing choices they need, and for systems to change to enable these choices to be real.
Q: What do you mean by "young people in nursing homes"?
The term “young people in nursing homes” refers to people under the age of 65 living in, or at risk of entry into, aged care facilities.
These young people have an acquired disability with complex support needs that often bridge the aged care, disability, health, housing and community services sectors.
Characterised by disabilities acquired largely as a result of catastrophic injury or through progressive neurological diseases, these young people require service responses from not one arm of the service system, but multiple, including health, disability and sometimes aged care, amongst others.
Having an able bodied life before the acquisition of a lifelong injury or illness means our members have different expectations concerning service responses to those living with a congenital disability. They expect to access the rehabilitation needed to restore health and independence; and to live in the community as other able bodied young people do.
Approximately 6500 young Australians with disability presently occupy a not insignificant 5% of residential aged care beds.
Q: How is it possible for a young person in Australia to end up living in a nursing home?
There are any number of paths that result in young people finding themselves living in a nursing home.
Discharge from hospital
One of the most common circumstances is following admission to acute hospital care. They may have been admitted for any number of reasons, such as:
Catastrophic acquired brain injury (ABI) or spinal cord injury through an accident, (non-compensable) motor vehicle accident, assault or near drowning.
Stroke
Heart attack, or
an episode or sharp decline in a progressive disease such as Multiple Sclerosis or Parkinson’s Disease
Acquired disabilities such as these are not covered under a workcover or motor vehicle accident scheme, and therefore the young person is forced to rely on the family income, and/or more likely the grossly underfunded state disability system to support and provide for all their needs.
Once acute care is no longer needed, the hospital, understandably, looks to discharge the person as soon as is possible in order to free a bed for the next person in need. At this point a problem is presented – the young person is not able to return to their previous circumstance for one or multiple reasons:
Constant medical assistance is needed to maintain their health
Extra carer support is needed for their daily care and living activities
The family home is not adapted for their needs – accessible bathrooms, stairs etc
The family does not have vital and expensive equipment, such as a hoist or pressure mattress, available to them
Applications for support can always be made to the state government disability services, however unfortunately they often simply do not have the funding available. They will not be able to provide enough funding for the young person to live at home or elsewhere with their family and community. There are limited supported accommodation places available with very long waiting lists.
So, where is the young person to go? They cannot stay in the hospital forever and they do not have enough support or funding to move back into the community. Systemically, the disability systems are asked to support the very high needs of these young people, and this is just not possible for a system that is chronically underfunded.
When this happens, the default option becomes aged care. Unfortunately, while nursing homes often do their best to support these young people, aged care is not set up to provide said support. Their purpose is to support older people with steadily declining needs. They just do not have the equipment, staff levels or medical knowledge to look after the health and wellbeing of a young person with fluctuating and very individual needs.
Other paths to aged care
Other common paths resulting in aged care entry include:
The primary carer, often parents, becoming too old or unwell to continue in the intensive caring role that they may have had for decades.
The young person lives in a rural area and cannot access the appropriate accommodation or support they need to maintain their health.
The young person, their family and carers are not adequately informed on the options available. They may have been inadvertently misinformed, simply do not know where to find the information, or that it even exists!
Very often, once a young person is placed in a nursing home, disability services considers them much less of a priority for funding or placement in more suitable accommodation. They then find themselves without enough support for their physical health needs, resulting in constant health crises and admissions to hospital, not to mention the almost complete absence of connection with their friends, community and family.
Q: How can I get in touch with other people in the YPINH community?
Social media is an excellent way to connect with others in the YPINH community.
Access our Facebook and Twitter pages, where you can contact organisations and individuals active in your area. You are welcome to join in discussions, raise questions and talk about your own experiences.
