Guest blog: Building and disseminating the evidence base on younger people in residential aged care

The Summer Foundation have sponsored new ‘Topics in Focus’ to feature in the Disability Research Collection centering on younger people in residential aged care. Guest author, Dr Di Winkler, takes us through the issue and policy response, and explains what the Summer Foundation hope to achieve in partnering with APO to disseminate the evidence base.

Falling through the cracks

Over 4,100 people with disability under the age of 65 currently live in Australian nursing homes, because they have fallen through the cracks between the hospital, disability and housing services. These people, referred to as ‘Younger People in Residential Aged Care’, have the right, under the United Nations Convention on the Rights of Persons with Disabilities, to ‘choose their residence and where and with whom they live on an equal basis with others.’

Younger residents have very different needs from elderly residents and aged care facilities do not have the resources or expertise to support them. There is growing evidence regarding the negative impact on health and wellbeing of placing young people into aged care. A recent review of international literature found that aged care facilities are unable to meet the basic human needs of younger people. The lives of Younger People in Residential Aged Care are characterised by boredom, loneliness, and grief. They are denied many of the everyday choices that many people take for granted – where to live, who to live with, what to eat, and when.

Younger People in Residential Aged Care is a wicked problem that can only be solved by working across sectors and at the interface between hospitals, housing, primary health, aged care and disability.

After years of advocacy by organisations including the Summer Foundation, in 2020 the Federal Government released the Younger people in residential aged care: Strategy 2020-25, which committed to a series of targets:

  • No people under the age of 65 entering aged care by 2022
  • No people the age of 45 living in aged care by 2022
  • No people the age of 65 living in aged care by 2025

While these targets are welcome, meeting them is not guaranteed and sustained effort is needed to permanently shut the gate to young people with disability entering aged care.

Supporting the Disability Research Collection

The Summer Foundation is proud to be supporting APO’s important work curating the Disability Research Collection on behalf of the National Disability Research Partnership. Our growing research program alongside La Trobe University is helping build the evidence base needed to help solve the problem of Younger People in Residential Aged Care once and for all. Our team of researchers have experience across clinical and academic settings and are working on projects across areas as diverse as hospital discharge, best-practice research methods, Specialist Disability Accommodation, accessible housing design, and disability support provision

However, while we pride ourselves on scholarly and rigorous methods, we believe there’s not much point doing research for its own sake or conducting research only to share it with other researchers. It is this gap in the evidence and policy-making cycle that APO helps address, through research dissemination.

With so much existing research sitting behind paywalls, there is every chance that important evidence is not reaching the people it needs to impact policy and practice. This is why – whenever we can – Summer Foundation ensures our publications are open access, so that policymakers, clinicians, and people with disability can be informed and our findings disseminated to a wider audience.

The Disability Research Collection is an important, open access repository of evidence-based research and policy papers that address some of the thorniest issues affecting people with disability in Australia today. The Summer Foundation has commissioned APO to offer two new topics in focus, within this collection:

  1. Younger people in residential aged care
  2. Housing for people with disability – that looks at the related issue of current and past housing options for people with disability in Australia and beyond, as well as issues with supply and funding. It also includes content on the quality of support being provided within this housing.

These topics align closely with the Summer Foundation’s goals and research objectives. Through them we hope to showcase existing research, identify gaps and opportunities for further work, and help to put evidence in the hands of those that need it.

Dr Di Winkler is the CEO, Founder and Executive Board member of the Summer Foundation and leads the Research Unit. Di is an occupational therapist and has worked with people with severe brain injury for more than 20 years. In 2006, Di established the Summer Foundation after becoming frustrated by the lack of appropriate housing and support for young people with disability who were being admitted to nursing home for the aged.