• Dianne Winkler

Angela Barker

The five-year national Young People in Residential Aged Care (YPIRAC) program, which aimed to reduce the number of young people with disability living in aged care nursing homes (with the first priority being those aged less than 50), concluded in June 2011. The Summer Foundation and the Monash University Department of Occupational Therapy have just released a White Paper that summarises recent research regarding the social inclusion of young people in nursing homes and outlines the policy and practical challenges related to this issue.

The national YPIRAC program has been life changing for hundreds of young people in nursing homes. Anne, who has moved out of a nursing home into a new shared supported accommodation service funded through the YPIRAC program said, “My quality of life has improved greatly from when I was in the nursing home. There I sat alone in my room all day and night and the only thing I looked forward to was visits from my parents and my sister three times a week.” At the start of the program in July 2006, there were 1001 people under 50 in residential aged care, in May 2011 that number stood at 621.

In addition to creating these new services the program has provided enhancement packages to 409 young people who remain in nursing homes because they either chose to remain in a nursing home or no alternative was available. These support packages have been used to increase participation in the community, support family and friendship contact, provide therapy and purchase important aids or pieces of equipment.

Wayne is a 42 year old man with MS. He spent two years in a nursing home before he received government funding for a personal computer that enables him to communicate. Via his computer he said “Before I communicated by nodding or grunting so I feel as though I’ve come out the stone age or through the dark ages.   It is fantastic that I can relay my thoughts and feelings onto my computer and magically a voice appears.”

People who currently receive services through the YPIRAC program will continue to receive these disability supports. However, given that 621 people under 50 still remain in aged care, not everyone’s needs have been met, and there will be no new packages for the 200 people under 50 who are admitted to aged care each year in Australia.

Without this program, Australian who are now healthy and sustain a severe brain injury or deteriorate with another neurological condition could find themselves in a nursing home between now and the end of the year. Young people who are stuck in nursing homes will be denied the opportunity to reach their potential and live meaningful lives.

One young person who knows this all too well is Victoria’s Young Australian of the Year Anj Barker, who spent 2½ years languishing in a nursing home, a period she describes as “pure hell.” Through personal determination and the dedicated support of her parents, Anj is re-building her life and is determined to make a difference to the lives of young people still living in nursing homes. She gives countless talks, presentations and media interviews, and would not be in the position to do this has she stayed in the nursing home.

The proposed National Disability Insurance Scheme offers some hope for young people in nursing homes. The scheme has the potential to provide the resources that this group need to live in the community. However, this program will not be implemented until 2015-2018 and requires the support of the Australian community to become a reality.

Without sustained investment in new accommodation options and a dedicated program, young people in nursing homes will once again be lost in the gaps between health, disability and aged care.