Drawing the line the tough part of disability services

Ryan had muscular dystrophy, a degenerative disease, which can affect people at different stages of life, but is particularly severe in young boys. Boris knew nothing about it and felt completely alone.

"Hearing the news of my son's condition was a cold, hard hit of reality, and at that time there was no one to turn to for advice or help. That was what drove me to start Muscular Dystrophy Australia, so that no one else would have to go through that terrible experience."

His son's condition has driven Boris to raise money for practical solutions: research, equipment and respite, and this week he is setting out on yet another of a series of fundraising treks, this time over the Atlas Mountains.For people who have healthy children there is little comprehension of what the parents of severely disabled children endure. With three children of my own who suffer a complex medical syndrome, over the years I have seen parents of children with severe and profound disabilities, in and out of hospital, coping day in and day out, mostly much better than one would imagine.

Communal support is very important. However, the advent of a National Disability Insurance Scheme is meant to make this everyday struggle easier in practical terms. But will it?

How much will the NDIS be able to help people like Ryan, and how far should we expect it to spread its largesse? Ultimately, what are the practical economic restraints on disability services in a society with an ever expanding notion of disability? Where do we draw the line?

Who will and who won't be eligible for assistance under the NDIS? The general public (as distinct from the subculture of disability), basking in the glow of naive Australian altruism, has not yet confronted these questions.

The government is, on the one hand, being very careful about the definition of eligibility for the NDIS, and on the other is purposely somewhat vague. Julia Gillard has spoken obliquely about people who have accidents, although most in this category are already covered by insurance.

Health Minister Tanya Plibersek has spoken about children born with disabilities, so the expectation is that children with severe disabilities will have more of their costs and needs covered. At the moment it is harder to get help if you were born with a disabling condition than if you were in an accident.

Although there is political bipartisanship on the concept of a NDIS, there has been very little input from the opposition. There has been no sense that it is playing any active part in the design of the scheme. According to disability spokesman Mitch Fifield, this is not for want of trying. Tony Abbott unsuccessfully proposed a joint parliamentary committee so both sides could be involved in the design and implementation of the scheme. As for who will be eligible, Fifield says many people already on state-serviced disability support will simply be transferred to the scheme, while others will have their needs reassessed using new criteria. And here is the underlying controversy of which the general public is mostly unaware.

The comments from disability organisations reflect caution about expecting too much of the NDIS, understandable given the expansion in the definition of disability over the past 20 years. It is a big problem. One in five of us technically has a disability - that is four million Australians. But these disabilities range from psychiatric and mild behavioural problems, especially among children, to severe, life-shortening and catastrophic disorders.

As Ken Baker, head of National Disability Services, politely puts it, that is "a very diverse, huge spectrum, and they can't all be in the same category". Quite. There are some new approaches to eligibility assessment that have not yet been made public. According to Baker one aspect is that eligibility will not be determined by the medical profession alone, although doctors will need to provide evidence.

The NDIS will be looking at a person's abilities in a range of domains and looking at a broad spectrum of support assistance for living. Then a package will be developed based on that person's needs and goals. Baker is clear on one thing: "It won't let in as many people with low-end and mild disability." However, he admits there will be a lot of pressure, including legal pressure, to do just that.

It is difficult to see in today's atmosphere of entitlement how Baker's relatively modest goal can be achieved. The budget for the NDIS will be greater than the present state-administered disability services' budgets, but that will be more limited than many people assume. For example, the Productivity Commission found that the budget for children's services should be double what it is at present, but that is to service the needs of only 410,000 severely disabled children.

Children with non-global disorders, developmental delay or mild autism probably will not be able to access this scheme and there has been much discussion on community forums about whether this should be so. At present, parents seek diagnosis just to get help with basic behavioural problems that can lead to educational deficiencies.

The diagnosis is then translated to disability in order to get the child on track for specific help and programs.

We can't continue to dress up medical or social problems as disability in order to cost-shift. If many children are removed from the disability budgets, then education and medical budgets need to be reassessed. Perhaps separate community programs for developmentally delayed children, like education programs, should be maintained, rather than rolled into the NDIS.

Whatever happens, expect the problem of who will be in or out of the NDIS to remain an ongoing saga as the scheme is built and gets weightier with the passage of time. Meanwhile, parents such as Boris will continue to do it for themselves - 33 years and thousands of kilometres later.