Phillip Barresi (Deakin, Liberal Party) Share this | Hansard source

Today I grieve for the young people in our nursing homes and aged-care facilities across Australia. I also grieve for their families and carers, who willingly put their own lives on hold to devote countless hours of care to their loved ones. At present there are more than 6,300 young people living in aged-care homes across Australia. If this trend continues, there could be more than 10,000 young Australians in this position by the end of 2007.

These young people—and I use the phrase ‘young people’ in a liberal sense as it basically refers to anyone under the aged pension age who is in an aged-care facility—have a range of acquired disabilities due to accidents or unpredictable health events or due to a degenerative neurological disease such as MS or Parkinson’s disease. Other people arrive in these homes due to acquired brain injuries. They may, for example, have had a car accident. Others may have been injured in other accidents which have caused permanent spinal injuries or when they have stopped breathing for a time, meaning that they have been left with hypoxic brain injuries which affect physical and cognitive abilities.

At a state level, fault based insurance standards mean that young people injured in car accidents are able to sue for compensation. But, if there is no-one to blame, they have no legal recourse, which means that many young people end up in aged-care facilities because there is nowhere else for them to go. It is common at this stage that many of these people, without the private resources to fund private care, rely heavily on their parents and other family members who, out of love, will often take over the role of full-time carer themselves, thereby placing considerable strains upon family life.

This is one of the great travesties of our current arrangements. Families and parents are between a rock and a hard place. These people are not martyrs looking for a handout or an easy ride; they are decent people acting in their own best capacity in the worst of circumstances to provide the best quality of care for their children. I take this opportunity to pay homage to their considerable and thoughtful efforts.

Young people and their families expected that the care system would be there to take care of them and support them when they needed it most. But in many cases this support has been sadly lacking or, worse still, nonexistent. This has happened for a number of reasons, most notably because existing disability systems were established to deal with the predictability of age related disabilities but are ill-prepared to deal with the complexity and more intensive needs of young people and their families.

In the recently tabled Senate report, Funding and operation of the Commonwealth State/Territory Disability Agreement, chaired by my esteemed colleague Senator Gary Humphries, one of the submissions which struck at the heart of this issue was that of Melissa, a 31-year-old living in an aged-care residential facility in Victoria. Melissa lives amongst older people, has no friends and, sadly, has lost her zest for life. This feeling of abandonment and isolation comes from not being able to interact with people her own age and in the activities of the centre, which are designed for older residents. Melissa is like so many other young people in this situation because Australia has a system that is based on age, not on need.

Developed around the needs of individuals with congenital disabilities, the existing state based disability systems do not have the structures in place as yet to deal with people with acquired disabilities. In my home state of Victoria, for example, specific accommodation for people with neurological disabilities, including acquired brain injuries, represents only 1.5 per cent of the total state based accommodation system. With the exception of Western Australia, these Victorian figures are also sadly typical in other states. This figure indicates that young disabled Australians, with complex support needs, fall through the system’s cracks to end up in aged-care facilities that were never designed to support them or their individual circumstances.

The recent COAG agreement made between the Commonwealth and the states means that, in Victoria, $60 million will be committed over five years to provide solely youth based facilities for those under 50. The agreement between the Victorian and federal government will create a new 10-bed facility in metropolitan Melbourne for patients with high clinical care needs. This is a good first step in the right direction towards building a world-class youth based high care system. But more needs to be done.

I have for some years now convened the Deakin Aged Care Council. We met recently to discuss local aged-care issues. During this meeting the issue of young people in aged-care homes was raised. Just from the representatives at the meeting I could have filled those 10 new places and still had so many more people left over. The feedback I received from my local, on the ground aged-care professionals was that the current facilities in aged-care homes are not serving young people nor providing the quality of care that is necessary to meet their needs. They advised me that accommodation and support services need to be targeted to the individual needs of each young person. Rather than expecting a young person to accommodate the setting, accommodation should be created to suit their own unique requirements, particularly in areas of rehabilitation and social interaction.

A strong advocate for young people in aged-care homes is Ms Dianne Winkler who, in her role as chairperson of the Summer Foundation, has spent much time advocating for youth focused disability reforms. Through her hard work in connecting those under 65 with aid and services, Dianne has an intimate knowledge of this subject area and has pushed this issue towards more positive outcomes.

Another individual in my electorate, Mr Alan Blackwood, Operations Manager from the MS Society, whose offices are in my electorate, has also worked tirelessly to advocate for young people’s care. In their recent submission to a Senate committee on disability services, the MS Society rightly argued for young people to be moved into a more user-friendly and better equipped environment to improve their lives. In their submission, they have called for the establishment of a dedicated step-up, continuous care support program for people with progressive degenerative conditions that combines AHCS, disability and aged care programs, aids and equipment, and carer programs. This will provide a pathway through the various jurisdictions. I urge the Minister for Health and Ageing, the Minister for Families, Community Services and Indigenous Affairs and the Treasurer to look carefully at the submission from the MS Society.

One good example of the approach that should be adopted has been the Western Australian Young People in Nursing Homes Project, which bought 95 young people residing in aged-care facilities back to the community over a period of four years. This joint venture initiative between the federal government and the state government involved funding commitments by both tiers of government. It incorporated comprehensive assessments, transition and evaluation planning, as well as the development of a number of alternative supported accommodation options. Transitioning young people who are dependent because of their disability to a more well targeted and case specific facility is a necessary step that all governments need to heed when dealing with youth disabilities.

The demand for these services is strong, and I congratulate Minister Brough for taking a strong stance on this issue and putting it on the national agenda. I agree with his sentiments, when in February he said:

For too long the only long-term residential care available to young people with a disability has been in aged care facilities.

The minister is right and we need to start moving quickly to redress this problem which has gone on for too long. Community based care that targets individual medical and social needs is vital if we are going to offer proper treatment for young people. I would also urge the states to take a long-term, collaborative approach on this issue. I call on all state governments to get on board and start making big improvements in this area so another generation of young people will not be left behind.

Dr Bronwyn Morkham, National Director of the Young People in Nursing Homes National Project, summed up this issue best when, in her position paper entitled Moving young people out of nursing homes, she wrote:

It is to be hoped that both tiers of government will put aside the demarcation disputes that have denied young Australians in aged-care facilities their chance for a life worth living, and work together to deliver the dignity and independence these young people have waited so long to have.

I fully agree with Dr Morkham’s sentiments and urge all Australian governments to do all they can to help address this need.

I would like to reinforce the work of those organisations in my electorate, particularly the Summer Foundation with Ms Dianne Winkler and the MS Society. Their work and their concern in this vital area of young people’s needs is one that should be heeded by all governments from both sides and from all jurisdictions. It is incomprehensible to continue having a situation where young people are placed in aged-care facilities which are highly geared to working with people with problems that are due to age rather than due to congenital conditions or injuries that have been acquired throughout their lives. I urge all governments to take a very close look at this need.

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