LETTERS

MICHELLE Griffin highlights our outdated, dysfunctional "system" for people with disabilities and their carers ("Call for coroner to monitor deaths", The Age, 14/9). In 2009, my 50-year-old husband with multiple sclerosis found himself in limbo. He was too old for the "my future, my choice program" and technically too young for a nursing home. Having cared for him full time for many years, sacrificing salary, superannuation and a normal family existence, I battled "the system" relentlessly to place him in suitable care for people with disability.

No family journey with disability should disrupt children, friendships, home life and employment to the extent we suffered. Carers do fall ill, give up, even commit suicide out of sheer desperation. People with disability and their carers are our relatives, friends, neighbours and colleagues. Allowing them to live as second-class citizens is unacceptable. A National Disability Insurance Scheme is their best hope to level the socio-economic playing field with all other Australians. Give all Australians a fair go.

Catherine Zuluaga, Balwyn

Deaths a sad disgrace

YOUNG people with acquired brain injury require input from a range of professionals and ongoing rehabilitation and management in speech, physio and occupational therapy. As a final-year speech pathology student, I am saddened by the lack of resources for this group and their families. The fact that these young people are living and dying in aged-care facilities is disgraceful. Specialised services and facilities are desperately needed to ensure that people with acquired brain injuries and degenerative diseases have access to trained staff to rehabilitate and manage their needs. Let's hope a National Disability Insurance Scheme will ensure these people are not forgotten.

Gemma Holleran, Ferntree Gully

For old and young alike

THE death of Kerrie O'Brien in a nursing home reminds us that life in institutional care is always a poor substitute for life in a community where one is engaged and connected. But sometimes there is no alternative. Professor Bill Thomas, founder of the Eden Alternative (a model for residential aged-care), reminds us that institutional care is often characterised by boredom, depression and loneliness. I commend the Young People in Nursing Homes Alliance for capturing the imagination of the community, politicians and policymakers, resulting in real changes.

Older people in nursing homes, by comparison, are often portrayed as being in "God's waiting room". We need to capture the community's imagination so that we can provide a better life for older residents who are left behind when the younger people have gone. I would dare to suggest that older residents share many of the concerns of the younger residents and their families, but if you're in "God's waiting room", who really cares?

Ralph Hampson, Newport

Speed up the reform

THE revelation that more than 20 disabled young people die in nursing homes each year further highlights the urgent need for a National Disability Insurance Scheme. The plight of young people in aged-care facilities has been highlighted by a number of organisations and through many reports over the years. Recently, it has been identified as a priority area for action by the Productivity Commission which recommended the advent of a scheme as part of an overhaul of the way disability services are funded and delivered.

Encouragingly, last month the federal government agreed to advance the NDIS. But there is a long way to go to make the scheme a reality. Political leaders must work hard to deliver the reform as quickly as possible to ensure people with disabilities including young people in nursing homes can access care and support options that meet their individual needs. The scheme will help people with disabilities better participate in social and economic life and give all Australians peace of mind that they will be supported in the event of disability. It will be the mark of Australia as a truly compassionate and prosperous nation.

James O'Brien, NDIS, Parkville