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Safeguard vulnerable young from aged care isolation

Date

Di Winkler and Libby Callaway

A lack of accommodation schemes means many vulnerable people are experiencing social isolation.

A lack of accommodation schemes means many vulnerable people are experiencing social isolation. Photo: Tamara Voninski

Anj Barker was 16 years old when she was bashed to near death by her ex-boyfriend. She sustained permanent, profound brain injuries. After many months she was released from hospital with such high care needs that her parents were unable to look after her at home. There was no  alternative but nursing home placement, an experience Anj describes as ‘‘pure hell’’.

There are more than 600 people under 50 in Australia forced to live in nursing homes simply because there is nowhere else for them.

Young people living in nursing homes is a multifaceted problem, but with continued effort it is an issue that could be resolved within the next decade.

Research by the Summer Foundation and Monash University has found that 21 per cent of younger people in nursing homes never go outside, 34 per cent never have the opportunity to participate in community-based activities such as shopping, leisure pursuits or visiting friends and family, and 53 per cent receive a visit from a friend less than once a year.

This group of people are effectively excluded from society.

As Anj  told us: “Nursing homes are a place that people go to die, not a place for young people to live.”

In 2006 the Council of Australian Governments funded a five-year, $244 million Younger People in Residential Aged Care program. The program, which ended  last year, was a good start and made a tremendous difference to the lives of the people who received funding through it, allowing them to either move out of, or avoid going into, a nursing home.

In Victoria, 22 shared supported-accommodation services were developed for 104 young people as alternatives to nursing homes.  

People who have moved out of nursing homes through this initiative (and their families) reported marked improvements in their quality of life, as well as opportunities to make everyday choices and participate in daily activities.  

However, since this program ended, the system has largely begun reverting to the way things were in the past and younger people are once again at risk of placement in nursing homes.

This month the federal government announced that 21 organisations across Australia would share in the $60 million Supported Accommodation Innovation Fund to provide housing and respite for people with disabilities.

These services will be delivered by mid-2014 and demonstrate innovation that has been sadly lacking in housing for people with disabilities in the past.

The fund will provide new accommodation options for 53 people with disabilities in Victoria. However, this program needs to be put into context. In December 2009 there were 1291 people with disabilities with a critical need for supported accommodation in Victoria – thus the fund will address a need for only 4 per cent of this group.

The issue of young people in nursing homes is one clear reason we need the national disability insurance scheme proposed by the Commonwealth government. Such a scheme would provide funding for the support people such as Anj need to live in the community. Although bipartisan support appears likely, the scheme will  not be fully implemented until 2018 or 2019.  

In the meantime, while the accommodation projects are constructed, and the scheme is shaped, what happens to younger people with profound disabilities who are at risk of placement in nursing homes? They wait, and they experience the social isolation and lack of choice and control that a previous group of young people in nursing homes experienced before the start of the Younger People in Residential Aged Care initiative more than five years ago.  

We have come full circle, with no real change to the system faced by this marginalised group of vulnerable Australians.

The national disability insurance scheme promises once-in-a-lifetime disability reform. It must be delivered in a planned manner, and the model has to be based on the best evidence available regarding effective and sustainable delivery of lifetime support to a group of people with complex and varied needs.

In the short term, while this planning is undertaken, more individualised funding support and innovative accommodation places must be provided for this group. We need services that prevent new admissions to aged care and create pathways back to community living.

Slow-stream rehabilitation and transitional services will give people with severe brain injuries in acute hospitals the time they need to demonstrate their potential before they are forced into nursing homes.

If the government does not change the system and invest in other accommodation models, individualised support and alternative pathways, hundreds of people under the age of 50 will continue to be admitted to Australian nursing homes each year.

Dr Di Winkler is the chief executive of the Summer Foundation and director of Building Better Lives. Libby Callaway is a lecturer in the department of occupational therapy at Monash University.

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6 comments

  • A good indicator of a community's true substance is how it looks after its most needy - and it is hard to find a more worthy group of young people who, through fate or accident, are required to live in need of care yet made to permanently live in a nursing home environment - young people need stimulus and excitement, not comfort and quiet! A good article - these young people need us all to help be their 'voice' for reform.

    Commenter
    P Conroy
    Date and time
    April 20, 2012, 11:33AM
    • Before we talk too much about systems and "changing accomodation models" it's worth noting there are a number of foundations that provide the kind of service young disabled people need. Groups such as "Windgap" do fantastic work in this area but places and funding are ridiculously limited.

      So the model is there, the funds are not.

      Commenter
      JW
      Date and time
      April 20, 2012, 1:19PM
      • Imagine a world where the young and old live together. Is that not already occuring everyday? Why can that not happen in an aged care facility? Again it appears a misunderstanding of aged care facilities being depressing places. A well-run facility looks at the needs and well-being of all the residents and hums along nicely, particularly where a good diversional therapist or activity officer is in place. Some old are young at heart and enjoy the company of some younger residents. Some young residents may enjoy the company of 'adopted' grandparents. With appropriate programs in place, well run aged care facilities may provide great supported accommodation for some of the younger residents. Nothing wrong with some rag time music mixed with ACDC from time to time. Nothing wrong with residents young and old going out on a bus trip together. It really boils down to the service provider being able to create a great environment for both to live with enjoyment.
        I am a supporter of NDIS and agree with the article, but please don't write aged care facilities off as an alternative, even as an interim solution.

        Commenter
        mipagrpe
        Date and time
        April 20, 2012, 1:25PM
        • You're failing to take into account the fact that there are far more old people than young people who need this level of care. While it might be OK if there are 20 or so young people and 80 or so old people in one residence, the reality is that it is far more likely to be 1 young person with 99 old people.

          Commenter
          Judy
          Date and time
          April 20, 2012, 2:56PM
      • I had a lengthy illness stretching over several years.My wife needed a break and we decided that I would go for a couple of weeks into respite care. It was at a retirement place but not a nursing home.
        Everyone at dinner was older than me but that didn't bother me.

        I knew my wife needed a break and I wasn't going to be at the respite place for ever.

        IMO there ought to be homes for young people with serious disabilities were families can't cope any more.

        They are then just nursing homes for young people. the name is of no relevance, It is the care given that is important.

        There has to be payment by the person going there and the State pays part of it as it is with nursing home at present.

        Then the young one are among their own kind and in nursing homes for older people the same applies.

        Unfortunately these days everyone expects tailor made support which is only possible if society is prepared for such costs.

        Not an easy thing in a society where the only value is money.

        One can't always have what one wants and that includes disabled people.

        Commenter
        caledonia
        Location
        sydney
        Date and time
        April 20, 2012, 2:57PM
        • It is truly sad that there is no place to go for younger (under 55) when it is too hard for the family to cope. I know a couple of families who are getting near to having to make a decision on where to place their child as it is getting close to physically impossible to continue to care for them in their houses - even with dedicated helpers each week. If the person is cognitively aware, the generation gap is a problem.

          What is also sweep under the carpet is problems aged homes have on their own generational gaps - 70 year olds have about as much in common with a 90 year old as a 15 year old has with a 35 year old. Then there is the issue of WW2 veterans going into aged homes with older Japanese persons - the propaganda of WW2 makes this less than pleasant. Hence having a 25 year old in an aged home merely adds to the complex mix of residents needs.

          Commenter
          ex ps-Brisbane
          Location
          Brisbane
          Date and time
          April 20, 2012, 3:41PM
          Comments are now closed
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