When Ben Thompson was 22 years old he acquired a brain injury – the result of an unprovoked attack. Before his injury, Ben was social, an active sportsman and about to start a new job. After surgery and an initial stay in hospital, Ben’s mother was asked to find a nursing home for her son because there was nowhere else for him. Ben spent more than three years in the nursing home, where he had very few visits from friends and spent most of his time in his small room.
Research by the Summer Foundation and Monash University published this week provides further evidence that young people shouldn’t be forced to live in nursing homes. This study found that preventing new admissions is a more efficient use of funding resources and leads to better outcomes, rather than waiting for people to be admitted to nursing homes and then moving them out.
The five-year national Younger People in Residential Aged Care program, which ended in June 2011, significantly improved the quality of life of many young people in nursing homes, as well as preventing new admissions. During this program, the service system was responsive to this group’s needs, with 244 people aged under 50 avoiding nursing home placement. Another 250 young people moved out of nursing homes into largely domestic-scale group homes. However, since this program ended, the system has largely reverted to the way things were in the past. Over 200 people under 50 are once again at risk of admission to aged care nursing homes each year in Australia.
The issue of young people in nursing homes is one clear reason Australia needs the National Disability Insurance Scheme (NDIS). The NDIS promises once-in-a-lifetime disability reform to an inequitable, underfunded, fragmented and inefficient disability service system. It is one crucial part of the solution to the issue of young people being placed in nursing homes. 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 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.
One reason people like Ben end up in nursing homes is because of the pressure on acute hospitals to free up beds once patients are medically stable. For people with severe brain injuries in this setting, slow-stream rehabilitation and transitional services will give them the time they need to demonstrate their potential before they are forced into nursing homes. More age-appropriate housing options also need to be built for the young people in this group. Without these additional components of a responsive and integrated service system, young people will still end up in nursing homes after they are discharged from rehabilitation.
Young people who are admitted to nursing homes tend to lose basic daily living skills. Given the staffing ratios and end-of-life care traditionally offered in nursing homes, staff there are often required to do tasks for the person in the most time efficient manner. They don’t have the time to support people to do what they can for themselves or develop independence in daily living. The Summer Foundation study found that young people in nursing homes have the potential to increase their independence in a range of personal and domestic tasks, given a more home-like environment, additional supports and greater time to complete these tasks. Families reported that a significant difference between the nursing home and group home environment was that staff in the group home had time to get to know each individual. Staff in group homes had more time to ask questions and wait for a person with a communication impairment to respond, and offer basic choices not available in institutional living, such as preferred timing of meals or going to bed.
Ben demonstrates the potential of people with severe acquired brain injury and the value of investing in them. While in the nursing home Ben didn’t talk, he was reliant on an electronic communication device for basic communication, and was fed through a tube. Since moving out of the nursing home Ben has made significant gains, including now talking and eating. His whole outlook and demeanour has changed dramatically.
Proper targeted support would enable people with disability to lead the ordinary lives that the rest of us take for granted, with real participation, real social relationships and a valued place in mainstream society. It would stop people like Ben from being placed in nursing homes, maximise their potential, decrease their lifetime care costs and bring them back into the mainstream so that they can make their own unique contribution to society.
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About the Authors
Di Winkler is the CEO of the Summer Foundation and Director of Building Better Lives. She has worked as an Occupational Therapist with people with severe brain injury for more than twenty years. Di completed her PhD at Monash University which involved five published studies focusing on the social inclusion of young people in nursing homes.
In January 2006 Di founded the Summer Foundation (http://www.summerfoundation.org.au), a not for profit organisation dedicated to the issue of younger people living in nursing homes. In 2009, Di founded Building Better Lives (http://www.buildingbetterlives.org.au) which is a collaborative campaign led by the Summer Foundation.
Libby Callaway is an Occupational Therapist with extensive experience working with people with neurotrauma, across inpatient and community rehabilitation settings in Victoria and internationally in the United States of America. Libby is the Director of a community-based occupational therapy practice, Neuroskills Pty Ltd, a Researcher in the Occupational Therapy Department at Monash University, and the Research Manager at Summer Foundation Ltd. She is currently completing a PhD on the time use, health outcomes, community integration and satisfaction with life of people with spinal cord injury.