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Young people in nursing homes denied basic human rights

Research published this week confirms what disability advocates have long known: that young people shouldn’t be forced to live in nursing homes. Our joint Summer Foundation and Monash University study…

Young people in nursing homes aren’t free to eat, socialise and go out when they like. morberg

Research published this week confirms what disability advocates have long known: that young people shouldn’t be forced to live in nursing homes. Our joint Summer Foundation and Monash University study found that moving out of nursing homes enriched the lives of people with disability: they went outside more often, had more opportunities to make everyday choices, had more social contact and spent less time in bed.

But these results must be considered in the context of these young people’s lives. Many were living extremely impoverished existences, and the improvement in the quality of life came from a very low baseline. Aged care nursing homes are resourced and designed to cater for people at the end-stage of their life – not young people who need support to reach their full potential and the opportunity to maximise their independence.

The five-year national Younger People in Residential Aged Care (YPIRAC) initiative that ended in June 2011 made a tremendous difference to the lives of participants, with some 244 people aged under 50 avoiding nursing home placement. Another 250 young people moved out of nursing homes into largely domestic-scale group homes.

But with the end of the initiative, the system has, for the most part, reverted to the way things were in the past. More than 200 people aged under 50 continue to be at risk of nursing home placement each year in Australia.

The most striking change identified in our study for those who’d moved out of nursing homes was the increased opportunity to make everyday choices. This included choosing what to eat and when to go to bed. One participant, Caroline, said: “At first I probably missed being told what to do or when to do it because it was so structured…I think I got a little bit lost at first, but I think that would be normal for anybody. But now I don’t…it’s good. I don’t have to have tea at 5 o’clock anymore. I can have it at 6.30pm if I want.”

More than 200 young people are at risk of nursing home placement each year. Summer Foundation

The lack of access to adequate equipment in nursing homes also means some young people are denied their basic human rights. Without funding for appropriate wheelchairs with supported seating, freedom of movement is severely restricted, and secondary health conditions are exacerbated. Appropriate seating ensures these young people can swallow safely, sit out of bed without experiencing pain and get outside and into the community.

It’s also not uncommon for nursing homes to have locked doors, further denying access to the outside world. Another participant, Nicole, aged 33, explained: “When I was told I had the opportunity to move out of a nursing home I couldn’t wait…I wanted to get out. I couldn’t, I was locked in…The doors were locked.”

Freedom of expression is also limited in the nursing home environment. Prior to the YPIRAC program, there was little or no access to speech pathology services and equipment that would permit the communication of basic needs. Wal, a young man who spent two years without being able to communicate, said after receiving a communication device through the program, “It’s like going to bed a mute and waking up being able to communicate again. My life has begun again…”

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) 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”.

The Australian Government ratified this convention in July 2008. But some four years later, the disability service systems in Australia is still not sufficiently resourced to fulfil the obligations agreed to in the United Nations CRDP, especially for people who require access to 24-hour support.

The issue of young people in nursing homes is one clear reason Australia needs a National Disability Insurance Scheme (NDIS), which is expected to provide the funding for disability supports young people require to live in the community. But the NDIS cannot, on its own, stop the inappropriate placement of young people in nursing homes. We need services that prevent new admissions to aged care, create pathways back to community living and offer age-appropriate supported accommodation options for this group of marginalised people.

As Disability Discrimination Commissioner Graeme Innes recently said, “nursing homes have an important function in our society, but they are no place for young people with disability.” While we wait for the implementation of the NDIS, we need to design and develop accommodation and service options that are consistent with basic human rights principles and develop services that bring young people in nursing homes back into the mainstream of society.

Watch Nicole Jones' digital story

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12 Comments sorted by

  1. Jane Mills

    logged in via Twitter

    Congratulations on an excellent study, this issue is a hidden Australian human rights tragedy.

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  2. Sally Parnis

    Visual Artist, "retired" paediatric anaesthetist

    This is an issue of great importance and I applaud the efforts to establish NDIS. The article does, however, beg the question - why is it OK for old people to have their physical freedom limited and their living choices taken away? People at the end of life have basic human rights as well.
    The real issue is the cookie cutter approach used (required?) by institutions in order to function at a low cost. Increased support for more people with physical and intellectual disabilities (including dementia) to continue living at home and in the community, and adequate staff to enable individual attention within institutions would be required. This, unfortunately, is very expensive.

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    1. Di Winkler

      Occupational Therapy Department at Monash University

      In reply to Sally Parnis

      I have visited many young people in aged care. Some are awful and some do the very best they can for both older people and young people given the resources available. I think the quality of life of residents in aged care comes down to attitude - treating others as you would like to be treated, with dignity and respect. In any situation where people work with a group of vulnerable people there is a risk that the service will revolve around the needs of the staff rather than the residents. Larger services such as aged care facilities are more at risk of being institutions than smaller scale services such as group homes. However all of these houses and facilities can revert to being institutions unless there are champions (usually managers) who are determined to treat residents with dignity and respect and offer everyday choices.

      In future we would love to do some research around developing and maintaining a staff culture that treats people with disabilities with dignity and respect.

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  3. anja hilkemeijer

    lecturer in law at University of Tasmania

    This study highlights an appalling problem. A related issue is that of parents who are unable to look after a profoundly disabled child at home. Rather than nursing homes, in these cases it is the child protection system that kicks in. Exhausted parents are put through the wringer of the 'abuse and neglect' model and inevitably lose their guardianship rights. Again human rights questions are raised: is this in the best interest of the (disabled) child? One option is for governments to build small group homes to allow for some out of home support to struggling families. The issue has received attention in the May 2012 Victorian Equal Opportunity and Human Rights Commission's Report "Desperate Measures:the relinquishment of children with disability into state care in Victoria".

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  4. Linda Hughes

    Student

    Getting young people out of nursing homes is a worthy initiative but we are not there yet when most people are moved to group homes. This is not giving people 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”.
    I know one young man with quadriplegia who chose to stay in the nursing home rather than move to a group home where he was to share with three people with intellectual disabilities

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    1. Di Winkler

      Occupational Therapy Department at Monash University

      In reply to Linda Hughes

      Linda - groups homes have been the predominate model of housing and support for people with disabilities who require access to 24 hour support for more than 20 years. Compatibility of residents and being able to choose who you live with are significant limitations of group homes - high time people with disabilities had a range of options. Some of our earlier research found that 27% of young people in nursing homes are parents of school age children. We need models that accommodate children and partners rather than assuming that people with disability are single.

      The Summer Foundation leads a campaign called Building Better Lives www.buildingbetterlives.org.au which raises awareness of the issue of young people in nursing homes and funds to develop the integrated model of supported housing. We are not the only group working on more innovative housing and support for people with a disability. Really hoping to see some innovation in this space in the next 5 years.

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  5. Pam Rolley

    logged in via LinkedIn

    Sally highlighted a fundamental flaw in contemporary residential care. Western society (Australia) has embraced the cookie cutter factory approach to resolve and manage demand and in the process systemised aging and disability. The 'best practice' models of care have developed . Systemised models have gaps- and if something doesn't fit the model or is outside the model, then ..there's the gap. Rights, freedoms, innovation, adaptability, change, needs are normality are not part of the model - they…

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    1. Sally Parnis

      Visual Artist, "retired" paediatric anaesthetist

      In reply to Pam Rolley

      It is so good to read this - I hope that the changes you anticipate are embraced quickly here in Australia!

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    2. Di Winkler

      Occupational Therapy Department at Monash University

      In reply to Pam Rolley

      Some of the thinking in the Netherlands is really exciting. Building apartments for all abilities so that if people acquire a disability or age the built environment is adaptable and services are provided in home. They are not for everyone but there are some exciting possibilities now that there are more high density residential developments in Australia.

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  6. Horst Kayak

    Pacifist

    “Young people in nursing homes denied basic human rights” is an attention getting headline. However does the community within which the disabled live have any obligation to redress these denials? Who is denying these young people basic human rights?
    You and me by ignoring that the situation exists?
    Or have we passed the obligation not to deny basic human rights specifically to the elected government and its agencies?
    If we have passed the baton on to our elected representatives, and if we still care enough to address the issue, we need to ask our politicians to introduce legislation to strengthen relevant regulations under whichever Act is appropriate. A quick skim of Hansard indicated no raising of the issue recently.

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    1. Libby Callaway

      Monash University

      In reply to Horst Kayak

      Horst you are correct that we must continue to represent this issue at a community level, as well as push our elected state and federal governments to address this issue, and strengthen relevant regulations, to continue to work to improve the rights of this marginalized group of people. We have found that getting, and keeping, this issue on the political agenda is an ongoing challenge, but one the Summer Foundation and Occupational Therapy Department at Monash University, as well as other state…

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  7. Casey Clark

    Disability Support Worker/ Social Worker

    More group homes need to be created, the waiting lists to get into one are huge and aged care facilities are inappropriate for young people. That being said elderly people have a right their freedoms and choices as well and nursing homes need to be seriously looked for there denial of human rights. I also just want to raise the issue of staffing, there is a massive turn over of staff in the disability sector mainly due to the incredibly poor pay and the shift work, too enable better services for clients there needs to be qualified and consistant staff. Ive seem many great and qualified support workers leave simply because they cannot afford it, this means that the clients loose great staff that are often replaced by unqualified people or agency staff.

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