An estimated 3500 people under the age of 60 currently live in nursing homes in Australia. These facilities are not suited to cater to the needs of younger people and often prevent them to unfold to their full potential. The Summer Foundation has been committed to resolving the issue of young people living in nursing homes since 2006. We had the chance to speak to CEO Di Winkler about the stories that led her to set up the foundation and what is needed to achieve social inclusion of younger people living with disability.
Di Winkler: I am an Occupational Therapist – I have worked with people with very severe brain injuries for the past twenty years. As a therapist I was often frustrated by the lack of appropriate housing options and seeing young people discharged to nursing homes. I started my PhD to provide an evidence base to change policy and practice related to young people in nursing homes.
I interviewed people like Michelle Newland. Michelle was 19 when she had a severe asthma attack that left her with a hypoxic brain injury. After 8 weeks the hospital told Michelle’s parents that she was not suitable for rehabilitation and they were asked to look for a nursing home for her.
In 2006 I founded the Summer Foundation because I realized that research alone was not going to resolve the issue of young people in nursing homes.
In 2009 the Summer Foundation commenced the Tell Your Story program, which supports young people in nursing homes to tell their story and engage in systemic advocacy (see example). This program gives a voice to people who are rarely heard and assists to keep the issue of young people in nursing homes on the political and public agenda. Seeing our ambassadors speak publically and participated in media opportunities has been exciting and inspirational. The combination of research conducted by the Summer Foundation and the Tell Your Story Program is a powerful synergy that is being used to full effect. For example, on July 9 2012 we released a report called the evaluation of quality of life outcomes of the Younger People in Residential Aged Care Initiative in Victoria, which was funded by the Victorian Government. There was a very strong level of interest from the national print, radio and television media including an article published in the Sydney Morning Herald (25/6) and stories of two young people in nursing homes featuring on Channel Ten’s The Project (25/7). We had 11 radio interviews, ten online news articles, and opinion pieces published by The Conversation, On Line Opinion and ABC’s Ramp Up.
Providing alternative housing and support models for young people with complex care needs is an important step towards the social inclusion of people with disability. Can you provide an insight into current projects that are underway and outline the benefits for consumers?
Di Winkler: The Summer Foundation is working with a range of disability support providers and housing associations to develop innovative models of housing and support that utilise state-of-the-art technology and design, to enable people with disability to live to their full potential. We have not announced our first housing project yet but you will hear about it at the conference.
What are the key benefits of developing relationships and collaborating with other stakeholders?
Di Winkler: The key aim of the Summer Foundation is to change human service policy and practice related to young people in nursing homes. We are not able to do this in isolation; we collaborate with other organisations, government, and people with disabilities and their families to achieve this aim. Together, we have a much greater impact. We are also able to focus on what we are good at rather than try to do everything.
With the implementation of the NDIS, how do you see the future for young people living in nursing homes, and what are your main aims for 2013-14?
Di Winkler: The NDIS will provide the funding for disability supports that this group requires to live in the community. However, the NDIS cannot on its own stop the inappropriate placement of young people in aged care. Two other elements are required. More accessible and affordable housing needs to be built. We also need to change the system to prevent new admissions. People with catastrophic brain injury need slow stream rehabilitation services that give them the time they need to demonstrate their potential before they are forced into aged care. We hope that the New Acquired Brain Injury Rehabilitation Centre being developed by Alfred Health will assist to create the systemic change required in Victoria, and demonstrate outcomes and cost benefits that can be replicated in other states and territories.
You’re chairing the first day of the 2nd Annual Younger People with Very high and Complex Care Needs Conference. What aspects of the conference are you most looking forward to?
Di Winkler: There are a number of presentations I am looking forward to that are highly relevant to the implementation of the NDIS. I am looking forward to hearing about supporting people with cognitive impairments to make decisions which is going to be a critical issue in the NDIS planning process. There are also a number of practical papers on models of housing and using technology to support people with disability to live in the community. Hearing the perspectives of people with a disability and families is always a highlight for me.