Several years and a few articles later we have not yet confronted these questions. Consequently, the inadvertent publication of part of a plan to restrict NDIS access for autism cases has triggered yet another furore about eligibility.

This is indicative of the agency’s inability to face squarely the problem of defining disability; instead, disability has been turned into an ideological problem.

Autism accounts for 31 per cent of NDIS participants, the largest disability group in the scheme according to the NDIS quarterly report issued in June 2016. Is this because of greater ­autism awareness and diagnosis of milder cases? Possibly, but there also has been a steady growth in the number of families getting the carer allowance for children who are diagnosed with autism spectrum disorder, and the vast majority are on low levels of the spectrum.

The National Disability Insur­ance Agency and the government were unprepared for the vehem­ence of the reaction to suggestions that some levels of autism would be reviewed. Consequently, in parliament last Wednesday Social Services Minister Dan Tehan was pressured into answering a question about the revelations of rescheduling autism, admitting that he was writing to all autism groups saying there wouldn’t be any changes to entitlement without research or consultation.

Clearly, the minister is looking at the problem, saying those who are entitled because of autism will get it — but as far as definitions of levels of disability, he also is saying that there will be no changes without independent research.

Independent research will be a good move, and not only for the NDIS. Across the world the diagnosis of autism spectrum disorder, as with attention deficit hyperactivity disorder, is being questioned and reviewed. As Tehan said, “Research is about getting acceptable diagnostic tools which will be accepted as the basis for a diagnosis or definition which will allow judgments to be made about entitlements.”

Defining levels of disability these days has a lot to do with disability becoming a social problem with an ideological definition, rather than a clear-cut medical problem with a medical definition.

Definitions have changed markedly. Once, child disability was defined solely by the levels of impairment, and the level of help was limited. Then in the 1980s there was a shift to define disability in children more holistically, including the number of ex­tra hours parents spent on the child. This was a shift from looking at the child’s level of impairment in isolation to including the levels of stress to the parents. This was mostly a good thing because parents often had been left out of the disability equation, and with some conditions it could be difficult to quantify the level of disability without including parental stress.

I know this from experience with three of my now adult children who have a lifelong complex endocrine disorder, causing num­erous physical problems. Through the old child disability scheme, the family’s situation was assessed and we were able to access the concessional pharmaceutical benefits for most of the children’s drugs, some help with long-distance transport, optical equipment and a wheelchair. There was a small allowance that we used to pay part of their school fees. We sought and got some practical help for specific problems.

However, now disability is less clearly defined and parental stress rather than the objective levels of a child’s physical or mental impairment seems to be the main defining element. ASD usually is diagnosed after parents have doctor-shopped to obtain help with their children’s behavioural problems, rather than a clear-cut physical or mental impairment. Consequently, diagnosis of ASD is flourishing. The diagnosis is then translated to disability to get the child on track for specific help and programs.

Some advocacy groups have claimed at least one in 63 Australian schoolchildren has a formal autism diagnosis and is registered to receive the carer allowance (child). Huge numbers such as this force us to ask if we can even afford to define ASD as a disability.

This push for loose definition of disability has been driven largely by parental support groups of children on lower levels of the autism spectrum. Not many people who have children with severe aut­ism or severe physical and intellectual handicaps have the time or energy to devote to advocacy.

In 25 years going in and out of neurological wards with my own children, I have met and befriended some of the truly heroic parents of severely disabled children and, frankly, I cannot understand how any claim can be made on the NDIS of parents with children who have relatively mild autism, no matter their levels of stress.

The money needs to go where it should go.

As far back as 2012 the Productivity Commission found that the budget for children’s services should be doubled to service the needs of 410,000 severely disabled children, so the removal from the NDIS of low-level ASD in children seems obvious because the scheme was never intended to cover such children.

Children with non-global disorders, developmental delay or mild autism should not be able to access this scheme.

We can’t continue to dress up medical or social problems as disability to shift costs. 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, such as education programs, should be maintained rather than rolled into the NDIS.

However, it is also obvious that parent and advocacy groups have grown in power and ideological clout in line with soaring levels of diagnosis.

So even with Tehan’s sensible objectives, I suspect the problem of who will be in or out of the NDIS will remain an ongoing ideological saga of blurred definitions of disability.

from https://www.theaustralian.com.au/news/inquirer/on-spectrum-of-needs-ndi…