Autism Aspergers Advocacy Australia

Editorial: Shame, Minister, Shame.

The article below shows Victoria's Disability Services Minister, Mary Woolridge, will believe anything bureaucrats tell her but believes very little to do with realities of people with autism spectrum disorder.

Apparently, she is oblivious to her own NDIS schedule ... since she looks to the NDIS and ignores that her disability services outside the NDIS trial site are stagnant or in decline. Besides, people outside the NDIS trial sites still have years to wait for access to NDIS funced services and supports. Then there is the issue that the NDIS does not fund respite ... so the Minister's proposed solution for these people is misguided and uninformed. The value of such a Minister is extremely dubious. 

Services and support for people with autism spectrum disorder are especially poor because officials have very poor understandings of autism spectrum disorder. This story shows that senior health officials in Australia have no understanding of the clinical services the people with autism need to treat their chronic behaviours that are left untreated (even refused treatment) for years. They simply do not understand that respite is not treatment. It beggars belief that Victoria's senior health officials regard respite as the best treatment and rehabilitation for chronic behavioural challenges ... as the article below shows.

It is hard to believe that neither the hospital nor the union asked about respite. If they couldn't find a respite place, then the family had no chance. And DHS's "no wrong door" glib tag clearly failed on this occasion. The Minister is cruelly portraying this devastated family as naive nuisances. Shame Minister, shame!

The National Disability Insurance Agency (NDIA) is ignoring expert advice and existing government policy on early intervention for children with autism spectrum disorder (ASD). Instead, the NDIA adopted a generic and often inappropriate approach that does not address the distinct needs of children with ASD.

The Department of Health advised families* in 2006 that children with ASD need “best practice” intensive ASD-specific early intervention. Later, the Department of Social Security (formerly FaHCSIA) effectively asked ASD experts “are you sure … and what about just 'good' practice?”. The experts responded pretty much “Yep, we are sure … and 'good practice' isn't much different from 'best practice'” (links* to the report are here MS Word & PDF and the Guidelines for Good practice 2012 MS Word & PDF ... webpage here).

A story headed Disabled children are left behind in the Bendigo Advertiser (see below) raised issues about how the education system in Victoria addresses the needs of children with ASD.

An official from the Victorian Education Department responded immediately (see below). Unfortunately, the officials's response was just wrong, as is far too often the case (e.g. http://a4.org.au/a4/node/824).

The response to the official's claims was immediate and "direct". Ms Kelly wrote to the Bendigo Advertiser and posted her letter on facebook (link here) where her message to the Bendigo Advertiser received significant support from families in her region.

In reference to Jeanette Nagorcka's not so well thought out letter/response in today's Bendigo Advertiser.

Ms Nagorcka

I have evidence and physical proof that every word you wrote in your letter titled Disabled Children article concerns is inaccurate. But at least you responded, unlike all of the letters and complaints that have been sent to you not only from this region but others including Geelong that you have chosen to dismiss.

Introduction

The latest NDIS Quarterly Report (up to 31/3/2014) [MS Word or PDF] shows that more NDIS participants (24%) have autism spectrum disorder (ASD) than any other distinct disability type. There was a sudden increase from the previous two quarterly reports that showed no NDIS participants with “autism” at all (previously, we assume the NDIS hid participants with ASD in other categories, such as “intellectual disability” or “neurological disorder”).

Australian Governments largely ignore the simple fact that generic disability services, often called specialist disability services, do not meet the disability service and support needs of people with ASD. The ABS reported the dire outcomes for people with ASD experience in Australia: see http://www.abs.gov.au/ausstats/abs@.nsf/mf/4428.0. The consequences of neglecting their specific needs is that people with ASD experience abysmal outcomes in education, labour force participation and service access; people with ASD have appalling outcomes that are far worse than those reported for people with a disability generally.

A review of the ACT Government's latest report on services for people affected by autism spectrum disorder (ASD) gives the ACT Government a "fail".

Executive Summary

The Legislative Assembly asked the ACT Government to report on “support provided for autism diagnosis and services and the potential for further reforms”. The Minister presented the report to the Assembly in May 2013. Following numerous requests, the Minister gave a copy of the report to representative of people affected by autism spectrum disorder (ASD) on 23/4/2014. The Minister took 11 months to hand over a copy of the report to the ASD community in the ACT.

This review of that report finds that the ACT Government's information about ASD and the service and support needs of people affected by ASD is often incorrect. For example, the report under-estimates the number of Australian children diagnosed with ASD by an enormous factor of three (3).

A presentation (see this) at the International Meeting for Autism Research (IMFAR) 2014 shows from health insurance records (from USA) that people with autism spectrum disorder (ASD) have higher rates of some other health issues than do people without ASD.

A recent media release (see http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.h… ) says

The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD). This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

Note that recent (2012) Australian data on the prevalence of ASD shows 1 in 62 children in this country have a diagnosis ... see http://a4.org.au/a4/node/695 and http://a4.org.au/a4/node/622 There is nothing to celebrate in rising autism rates because people who are properly diagnosed with autism have significant disability that "requires support".

Australia's National Disability Insurance Scheme's (NDIS) Operational Guidelines – Access are dysfunctional in relation to autism spectrum disorder. The NDIS fails many people with autism spectrum disorder (ASD), denying them the services and supports they need.

People with ASD are among the most vulnerable and disadvantaged people in Australia. The Government is not giving people with ASD a fair go. The message is simple. Government needs to act to support people with ASD and to improve their outcomes. The NDIS eligibility criteria are designed to exclude some people with autism spectrum disorder from the NDIS, people who are assessed as needing disability services by allied health professionals with specific expertise in ASD. And for those people with ASD who are deemed eligible for the NDIS service and support, NDIS individual planners (gatekeepers), who mostly lack expertise in and understanding of autism, reject some requests for essential disability services and supports.

Following is the evidence and justification for this simple claim that the NDIS, the scheme created to address the enormous disadvantage that Australians with a disability experience, in its initial implementation is failing people with ASD.

More information is now available about the policies of the major parties relating to people affected by autism spectrum disorder ahead of the Tasmanian state election. You can download information from the three major parties from the following links:

• Labor Party
• Liberal Party
• The Greens

  A brief summary is that:

The NZ High Court "found that Green Bay High School in Auckland was not justified in excluding a student with Asperger's syndrome, following a row he had with a teacher." [see article]. This may not be over yet.

I am not a lawyer and I do not know NZ law. I know that under international law, paragraph 3 in Article 23 of the United Nations Convention on the Rights of the Child (CRoC) says every child has a right to "education, training, health care services, rehabilitation services [and] preparation for employment" ... and that "the state" is ultimately responsible for ensuring this happens. Specifically, in relation to children with a disability, the CRoC says ...

... assistance ... shall be provided free of charge ... and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development ...