1 June 2011

ACT budget disappointing for autism

| bobb
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The ACT Government’s 2011-12 Budget is disappointing for people with autism spectrum disorders (ASD), their families, carers and support organisation. The ACT Budget does not meet the needs of people with disabilities generally and ignores the ASD community.

Mr Buckley, Chair of Autism Asperger ACT’s Political Action Group, says “the community is pleased that the ACT Budget provides 10 after-school places for 4 years for teenagers … and that the Greens and the ACT Government responded to political, community and media pressure. The ACT Government stepped in where the Commonwealth’s fragmented and inequitable after-school program for teenagers with severe disability fails vulnerable people in Canberra.”

But after school care for teenagers with severe disability is just one issue. The Productivity Commission said in its recent 800+ page Disability Care and Support Draft Report

The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports.

“The Productivity Commission’s report says more efficient service deliver and twice as much money in the disability sector might support half the people with severe or profound disability”, Mr Buckley says.

“In her Budget Speech, the Treasurer says Canberra ‘cares for its people’ but its Government does not recognise the needs of people with a disability nor consult the community on how to care better for ‘those in our community who need additional assistance’”.

“Disability services and support in the ACT are below the national average. People with a disability need more care than this budget provides. The ACT Government has yet to recognise the level of need, especially for people with ASD”, Mr Buckley says. “The ASD community in the ACT is united in a single organisation but the ACT Government rarely discusses ASD services with Autism Asperger ACT. It’s not just about money.”

The ACT Government does not recognise the severity of ASD. Last year, the Government told the Select Committee on Budget estimates

… the primary diagnosis may actually be an intellectual disability diagnosis rather than an autism diagnosis.

The Diagnostic and Statistical Manual of Mental Disorders 4th Edition (called the DSM-IV) has autism on Axis I and Mental Retardation (the formal and politically incorrect name for Intellectual Disability) on Axis II: the manual is clear that autism is “the primary diagnosis”. “Officials who are responsible for disability services should know this” Mr Buckley said.

The Australian Institute of Health and Welfare reported

Autism and intellectual impairment were associated with high proportions of severe or profound core activity limitation—87% and 75% of children with these respective conditions also had a severe or profound core activity limitation.

According to Mr Buckley “generic disability support and advocacy groups do not recognise that people with ASD need services for their severe disability and some of those services need to address ASD specifically”.

Governments do not ensure services for people with ASD keep up with the growing numbers of people diagnosed with ASD and their support needs. In the past, autism was a rare diagnosis. But autism diagnoses have grown 15% per years (doubling every 5 years) for the last 20 to 30 years. Now, 1% of children are diagnosed with ASD.

Members of Autism Asperger ACT are concerned and disappointed that the ACT Government officials, and disability advocates funded by Government, complain whenever increasing services for people with ASD is suggested. The officials and funded advocates do not complain about improving services for other types of disability.

Both the Commonwealth and ACT governments fund support and advocacy organisations for other disabilities, but not for autism/ASD. Other states fund the basic operation of their autism associations to advise about the needs of people with ASD, but not the ACT.

People with ASD find that the ACT Government Budgets use phrases like “including autism” but few (if any) people with autism/ASD end up getting the service. If the Government really wants to help people with ASD, it needs to say how many people with ASD will be included and monitor services to ensure the service meets the target.

“Some schools create behavioural challenges in students with ASD. And some parents exhaust their annual leave through the resultant school exclusions (schools send students with ASD home as the students who may have behavioural “issues” have no right to education under Australian law). In the ACT, students with ASD cannot access skilled allied health professionals and get the individual behavioural therapy programs that they need for their education.

Autism Asperger ACT hopes students with ASD will benefit from $632,000 in the Budget for

A pilot … Program [where] Therapy Assistants would work in schools to carry out therapy programs developed by allied health professionals for individual children.

“Any such pilot program, in order to help students with ASD, will need service providers with expertise in ASD-specific behavioural services” Mr Buckley said. “DHCS would not be a candidate for helping students with ASD with their clinical needs since it said recently that it does ‘… not actually use the ABA [applied behaviour analysis] intervention method’”.

“Autism Asperger ACT wants to work with the ACT Government. We ask the ACT Government to recognise that people with ASD have real and distinct needs and that the ASD community has practical and evidence-based suggestions” Mr Buckley said. “We want to work with the ACT Government to improve outcomes for people with ASD.”

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The ACT Government is neglecting our children’s educational needs as well as the welfare of their families in general. I suggest this is wilful neglect as the powers that be know too well that government services do not cover a fraction of what the children in this community require. The education department knows many of these children will be entering mainstream pre-schools but fail to fund enough aid to allow them to attend regular hours. Even when they do, they do not take seriously the particular needs of an ASD child and as such the support aids often do not even know what autism is, I know this from experience. The teachers, too, often have no training or support in learning the particulars of helping to teach and include a child with ASD, and some quite frankly are resentful of a child’s presence because of this. If the government wants to talk about the importance of mainstreaming and inclusion, it needs to appropriately train its teachers and teachers aides and support them in supporting our kids. I think of these things every time I drive past a new and costly monstrosity classed as public art and wonder how many kids this money could have helped instead.

Thank you for raising this important issue Bobb. I am the father of a 4 year old boy with autism in the ACT. The services in Canberra are extremely poor. Unlike the other major cities there is no FaHCSIA funded child care centre established to take children with autism. In fact the situation is so bad we are now considering moving interstate where we hope to get more assistance. This means leaving paid work to go onto Centrelink payments. What people don’t understand is that this issue has a much wider impact and cost to the whole community.

Although one would expect that children with autism should be getting extra help, the opposite is actually happening. In my son’s case, he has been denied the same hours in a public pre-school as the other children. This is because he has a disability and there are no teacher assistants available. Although he does go to an autism unit, which is very good, he should be getting the minimum 20 hours per week.

The current system seems to be overly bureaucratic and I believe all the money is going to consultants and bureaucrats. What we need is a system where children with ASD and other disabilities are guaranteed financial assistance in the form of a voucher that can be used to purchase services. The model also needs to recognise that all children are different. For this reason a voucher type system would allow for more choice as parents could choose the service which best fits their needs.

I find it quite shocking when you think of the hundreds of millions of dollars are being spent on new road works etc but when it comes to the education of children with disabilities, parents are being forced to home school their own children. What is happening to disabled children is similar to the racist policies of the past, which led to aboriginals being excluded from our society. It all comes down to self interest and a lack of understanding and empathy of the issues being faced by the most disadvantaged members of our community.

What about our Early Intervention for those families with child/ren in the ACT education system?
Given that the Federal Department of Health & Ageing recommends a minimum of 20 hours per week Early Intervention Therapy for ASD Children (http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-child-autbro-toc~mental-child-autbro-best),for the ACT Department of Education to insist on a 9 hour week maximum, regardless of the childs individual circumstances or of the amount of hours in available classrooms which are already staffed and funded is to sacrifice the welfare of the children on the altar of bureaucratic process.
For we parents of children who have special needs, especially in the fields of ASD where we are utterly without certainty as to whether our child will EVER be able to lead a normal independent life, to see places going empty in early intervention classrooms while we sit at home watching our children age beyond the years where early intervention where *EARLY INTERVENTION* is of greatest benefit is heartbreaking.
By simply providing the guidelined educational needs to those childrens who needs it now, we set the framework for giving our children the best chance to not need to lean on the system, being independent, functional citizens of our community.

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