The YPINH issue is symptomatic of a broader crisis in the delivery of long term care and support for younger and older Australians.

It declares the need for an effective and well resourced system of long term care and support that delivers dignity and meaning to the individuals who use it.

The Alliance believes development of a sustainable and equitable system of long term care and support depends on clear policy initiatives in the following areas.

1. Accommodation and Support Choices

None of us expect to live in the same house or maintain the same life style over our lifetimes. As our circumstances or needs alter, we respond accordingly.

Young people with high/complex support needs have the same expectations. They need access to a range of flexible accommodation and support arrangements that can respond to their changing needs and life circumstances.

Solving the YPINH issue requires more than a ‘one size fits all’ approach and involves much more than simply building a house for people to live in.

YPINH and their families must be involved in developing the accommodation and support services they use so that these services match their needs and expectations as closely as possible. Once established, YPINH and their families also need to have involvement in the maintenance of these services.

2. National Long Term Care and Support strategy

Like most of the developed world, Australia faces increasing demands for long term care and support across the board. This situation has arisen for two reasons.

The first is our access to sophisticated medical technologies that now save lives that once would have been lost, but leave the individual with significant acquired disabilities as a result.

The second is our access to a world class health system that enables us all to live longer and with a better quality of life as we do.

The net result has been an exponential growth in demand for long-term care and support, a situation that will continue to increase until we achieve the capacity to restore damaged bodies and minds to health and independence.

State disability systems that have developed in response to the less intense, more predictable needs of those with congenital disabilities, have never quite kept up with the growing demand for long term care and support that our health system has delivered. Young people who survive catastrophic injuries and unpredictable health events like asthma attacks or strokes, but are left with acquired disabilities, find that existing, state based systems are ill equipped to handle these different, more intense needs.

To date, the chronic under funding of disability services by all jurisdictions has meant responses to the growth in demand for long-term care and support have been reactive, lacked vision and been costly in terms of lives and available resources.

2.1 Existing System Outdated and Ineffective

Australia's existing long term care and support system defines responsibility for long term care according to age, something that is outdated, ineffective and increasingly irrelevant in light of Australian population’s increasing longevity.

Yet it continues to inform a fractured system of long term care and support that has neither the flexibility nor the capacity to deliver long term support across the board, regardless of age; and reduces support for individuals merely because they turn 65.

The inability to receive adequate long term care and support inevitably leads to deterioration in health and well being. It also means a growing (and costly) dependence on the various arms of the health system to make up the shortfall.

If, for example, the lack of a pressure mattress leads to pressure sores, the end cost will be many times greater than the original cost of the pressure mattress because of the consequent need for hospitalisation for extended periods and the use of allied health resources in recovery.

Australians expect an efficient and effective system of long term care and support to be in place when they need it. They expect to access the supports and services they need, regardless of age.

The divided system we have cannot satisfy these expectations or the long term support needs of those needing its help.

2.2 Resourcing and sustainability

Previous Federal/State disability agreements have concentrated almost exclusively on models of service delivery and innovative approaches to service provision. While this work has delivered new understandings in these areas, it hasn't adequately addressed issues around funding and sustainability.

If Australians are to receive the supports they need when they need them, an expanded and more efficient system of long term care and support built on a sustainable funding base, will be required.

a national scheme of no fault insurance for catastrophic injuries;

• a social insurance levy for long term care and support similar in scope and intent to the Medicare levy;
• and compulsory taxation levies or duties.

2.3 No fault insurance for catastrophic injury

While only Victoria, South Australia and Tasmania currently have no-fault insurance schemes in place for catastrophic injuries sustained in motor vehicle accidents, other states have shown an interest in moving their existing fault-based systems to no-fault schemes.

As one example, New South Wales recently expanded its fault-based motor vehicle accident scheme to a no-fault basis for catastrophic injuries through its Motor Accident Authority. Western Australia has shown a similar interest in expanding its fault-based motor accident scheme.

Because it has adequate funding to deliver the rehabilitation, equipment and other support services that individuals with catastrophic injuries need, Victoria's Transport Accident Commission supports all but two of its clients in community-based, supported accommodation. The two clients that have chosen to live in aged care settings have done so because these are the only accommodation options that allow them to remain near their families and within their communities in remote areas. The Victorian government is presently investigating the expansion of that state’s no-fault transport accident scheme to a no-fault scheme for catastrophic injury more generally.

While such schemes cannot provide all the resourcing required for long term care and support, their successful resourcing of particular segments of need, such as catastrophic injury, mean that their contributions ease the burden of sustainability overall.

2.4 Social insurance levy for long term care and support

Despite contributing to a range of insurance products including Medicare, private health insurance, workers compensation insurances and various transport accident schemes through car registration levies, Australians are still not comprehensively covered for long term care and support needs that arise because of unprovoked assaults, sporting or household accidents, or accidents of health and age (strokes, aneurysms, heart attacks).

Yet because disability increases with age, it is likely that we all, at some point in life, will need support of some type and for varying periods of time.

From discussions with a range of stakeholders, the Alliance believes there is strong community support for a social insurance levy for long term care, similar to the Medicare levy that provides access to health care for all Australians, as and when needed.

Policy work around the development of an effective and sustainable national long term care and support strategy must be included in the 4th Commonwealth State Territory Disability Agreement (CSTDA), due to be renegotiated in 2007.

3. Workforce and Training

The growth in demand that all areas of disability service and support have experienced has not been matched by the concomitant growth of a skilled and committed workforce. Part of the problem lies in poor rates of pay and the lack of a career structure that might otherwise encourage dedicated and skilled workers to remain over the long-term.

The result has been a transient population of disability support workers who take on the role when "nothing better" is in the offing and leave as soon as a job with better pay and prospects comes along.

The economic and societal undervaluing of disability (and aged care) support workers must stop and a decent career structure introduced that recognises the vital nature of this work through improved rates of pay and promotion opportunities.

These moves must be accompanied by improvements in training that deliver skilled workers committed to the dignity and independence of those they support.

4. National Rehabilitation Strategy

Rehabilitation is both an integral part of recovery from catastrophic injury and a vital part of maintaining health and well being for many individuals with disabilities. This is especially true for young people with high and complex support needs.

At present, Australia lacks a comprehensive rehabilitation strategy as part of the suite of services it offers individuals with disabilities. Where rehabilitation programs do exist, their resourcing is so limited that the minimal amount of rehabilitation they offer does little more than ‘scratch the surface’ of the long term needs individuals have.

Victoria's Slow To Recover (STR) slow stream rehabilitation program for young Victorians with Acquired Brain Injuries (ABI) is a case in point.

Developed initially as a measure to prevent young people with ABI entering residential aged care settings, the STR Program has been successful in delivering improved levels of recovery and competence to those fortunate enough to access the 2 year program.

Because this is the only program of its type in Australia, applicants from other states are increasingly applying for entry.

Yet demand for access to the program far exceeds places available and a wait of some years is now in place for access. This is particularly disturbing in light of accepted thinking that the prospects for recovery from brain injury diminish the longer rehabilitative treatment is delayed.

Not only are too many Victorians queuing to access STR; many who have successfully completed the program but still need a modicum of rehabilitation to sustain the improvements in function they have gained gradually lose access even to ‘maintenance’ supports because of the chronic under funding of the scheme.

Too many young Australians are being denied the opportunities they should have had to recover or regain physical, emotional and cognitive independence after catastrophic injury or debilitating health event.

The cost to government in terms of increased per capita support costs for individuals denied these opportunities for recovery, is massive. The cost of these lost opportunities to the individuals who need them, is incalculable.

The Alliance believes a national rehabilitation strategy is imperative if long term support costs are to be reduced and individuals given the opportunities needed for recovery and maintenance of their health and well being over the long term.

5. National Equipment Strategy

Having the right equipment is vital to maintenance of health and well being for people with disabilities. Yet access to much needed equipment is unacceptably limited because equipment subsidies are chronically under funded.

The stories of people having to make do with ill-fitting wheelchairs that cause enduring pain or unable to access the right pressure mattress because the subsidy provided by an Aids and Equipment program is too small, are legendary. And because a disability pension offers little hope of saving the shortfall, these prolonged delays ultimately contribute to deterioration in their health while individuals wait to rise to the top of the queue.

An Alliance member with very high support needs requires splints on both legs to prevent shortening of her tendons and thereby maintain her capacity to do standing transfers.  She has had to forego personal support in an effort to use the funds saved to purchase the splints.  Yet maintaining this level of independence is vital if she is to continue living in her own home with support… a cheaper alternative for government than moving her to a more costly supported accommodation setting.

Another Alliance member with an ABI only received an electric wheelchair when his local community saw his plight and raised the funds needed to purchase the wheelchair and some limited rehabilitation. Without his wheelchair, the young man would have remained permanently in his bed and been at serious risk of skin breakdown (pressure sores) and consequent (and costly) hospitalization.

In both these cases, delays in accessing much needed equipment would have led to diminution of health and independence and a consequent increase in the health and support costs borne by government. These cases illustrate the false economy that ensues when Australians with disabilities cannot access the equipment they need.

The National Alliance believes an adequately funded national equipment program would not only deliver the much needed equipment Australians with disabilities require to maintain health and independence; it would also save money by reducing health and support costs that devolve from a lessening of health and well being.

6. Expansion of the COAG YPINH Program

On February 10 this year, the National Alliance succeeded in achieving one of its key aims: a joint initiative by Commonwealth, State and Territory Governments around the country to address the YPINH issue.

The program then announced by the Council of Australian Governments (COAG) will clearly not be enough to solve the problem for everyone. But it is a vital first step towards delivery of the services and supports that all young Australians with complex support needs will require to have a choice about where they live and how they are supported.

Initially targetting YPINH under 50 years of age, the program has three key objectives:

• to assist younger people with disabilities living in residential aged care to successfully move to community based supported accommodation;
• to improve support services for those who continue to stay in residential aged care; and
• to assist younger people at risk of entering nursing homes where possible.

The funding and resources this new program has are obviously not enough to offer alternative accommodation and support arrangements to all 6,500 young Australians currently living in aged care nursing homes. Nor does it have the capacity to fully prevent young people with high and complex support needs entering residential aged care facilities in the future.

The Alliance supports the extension and growth of the COAG YPINH Program to:

• enable all YPINH in nursing homes to have a choice about where they live and how they are supported
• prevent young Australians with high and complex support needs entering residential aged care settings in the future.

Where new shared services are needed, the Alliance believes the following broad principles should apply.

Young Australians with complex support needs should have

• choice about where they live and how they are supported
• access to quality information about policies and processes
• service planning that is comprehensive and individualised
• support options in which the resources follow the individual
• services provided by the most skilled and competent workforce available
• be involved in purchasing decisions regarding services: that is, services must be purchased with us not for us
• the knowledge and input of families and social networks valued and utilised in planning new services