NOT ALL DISABILITIES ARE CREATED EQUAL.
That is because many children with autism - especially children now in early primary school who have had access to federal funding for early intervention programs - can cope just fine in mainstream schools.
But the case this week of Ethen, an eight-year-old Campbelltown boy excluded from special school because of autism and other disorders, raised much hysteria. What it should have raised was the urgency and importance of the national disability insurance scheme (NDIS).
Ethen, it was reported, was excluded from school because he was violent. Behaviour, along with speech difficulties and social communication issues, form the triad of impairments required for an autism diagnosis. A child on the autism spectrum can have mild, moderate or severe deficiencies in one or all of these categories. Not all children with autism have significant behaviours. Not all children with Asperger syndrome can recite Shakespeare at age five. Generalisations that rise from stories like Ethen's or publicising the achievements of a gifted Asperger's child do nothing to help society understand the majority of children who fall in the middle of the spectrum.
HCWA, a Howard Government promise in 2007 that became Labor policy in 2008, failed to help Ethen sufficiently, and it was not designed to help his family cope with his autism. But the NDIS has the potential to change everything for the families like the Burnses. Where HCWA is rationed at $12,000 per child regardless of the severity of disability, NDIS will take an individual approach. So a child who requires greater help should, if the government gets it right, receive a better-funded program to suit his needs.
The Productivity Commission's recommendation to the Gillard government - which along with disability community input is expected to form much of the NDIS legislation to be introduced into federal Parliament his month - has focused on eligibility and reasonable support.
''There are about 583,000 people that will be supported by the NDIS either with or without a funded package,'' the recommendation says. ''Funded support under an NDIS would be for people where a needs assessment indicates that the severity of their disability impacts on their ability to do normal day-to-day activities, and means that they need support.''
Promises have also been made by the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, and the Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas, that this will include early intervention. ''You [the disability community] told us that early intervention needed to be explicitly included in the definition of eligibility. Of course, support for early intervention is one of the key ideas behind an NDIS, but the feedback we received made us realise how important it is that this be stated upfront. So it will be,'' a co-signed NDIS newsletter said on November 2.
Nicole Rogerson, the chair of Autism Awareness and a long-time campaigner for funding for effective early intervention, remains cautious. ''Early intervention is key, but it has to be good quality, evidence-based and meet best practice guidelines,'' she says. ''They know what it is, they don't want to pay for it. I don't believe NDIS will be the answer unless we fight for the specifics within the policy.'' While the rationing system of HCWA failed Ethen, it was enough to help pay for my son's early intervention. This, along with mild symptoms, meant he could enter mainstream school. Yet online discussion following the publishing of Ethen's story favoured all children with autism being excluded from mainstream school. The ignorance involved in forming this view is frightening.
My seven-year-old can be burdensome on his teachers. They might have to take the lid off the jelly bean jar to reward him for completing his work. Sometimes, because of his deficiency in social communication, he might yell at another child who does the wrong thing. But ''normal'' kids yell too.
With a normal-range IQ (no, he cannot recite Shakespeare, but he can read Zac Power) and no significant behaviour problems, my son does not need a heavily taxpayer-funded place in a high staff-ratio special school - and this holds true for most children with high-functioning autism and Asperger syndrome.
No single approach to education works for all children with autism - that is why it is a ''spectrum'' and that is why there is a broad range of supports available in the education system - from the jelly bean jar or teacher's aide support in mainstream class, to high support with high staff ratios in specialist autism schools. This year, I have interviewed dozens of parents, from Perth, to Townsville, to rural Tasmania, for the second edition of the Australian Autism Handbook, which will be released next year. Some of the children in the book have had success in mainstream schools, others in special schools. It does sadden me that some of the effective cases of education I have heard involve home schooling and distance education to avoid bullying. But ''normal'' kids get bullied too.
The Coalition took a $20,000-per-child ''education card'' promise to the 2010 election, aimed at helping 6000 children who need it most.
But funding isn't everything. The Positive Partnerships program has helped mainstream school teachers learn the skills they need to manage children with autism. Many teachers have reported improved skills in managing all children. ''Normal'' kids misbehave sometimes too.
The NDIS Launch Transition Agency is expected to be functioning by next July in trial zones in the Hunter, Geelong, the ACT and South Australia after legislation passes through parliament early next year. The government is keen to get the legislation right and will not rush.
It is too late for Ethen to access effective early intervention. But for the mother peering at her newspaper right now concerned that her two-year-old is not responding to his name, looking her in the eye or saying ''mum'', there is hope that they will be able to access sufficient early intervention to be able to function in mainstream society.
And, from a broader perspective, NDIS allows the hope that one day many children with autism will grow into taxpayers, not a burden on the tax system that ignorant campaigns which attempt to exclude them from mainstream school might result in.
Kathryn Wicks is a Herald journalist and co-author of The Australian Autism Handbook, second edition (April 2013).
