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Legislative Council - Fifty-Second Parliament, First Session (52-1)
2010-06-30 Daily Xml
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AUTISM SPECTRUM DISORDER

Adjourned debate on motion of Hon. A.M. Bressington:

That this council calls on the Minister for Disability as a matter of urgency to—

1. Increase funding to Autism SA and any other similarly funded non-government organisation to enable them to provide services and support for people diagnosed with Pervasive Developmental Disorder—Not Otherwise Specified commensurate to those available to people with autism and Asperger's Syndrome; and

2. Implement measures to—

(a) address any disparity in services and support provided by Disability SA between people diagnosed with Pervasive Developmental Disorder—Not Otherwise Specified and autism and Asperger's Syndrome;

(b) ensure a single definition of Autism Spectrum Disorder that encapsulates Pervasive Developmental Disorder—Not Otherwise Specified is used universally throughout government departments and agencies;

(c) improve access to and expedite diagnostic services for Autism Spectrum Disorder; and

(d) increase awareness of this condition so as to aid early identification, community acceptance and decrease the associated stigma.

(Continued from 23 June 2010.)

The Hon. S.G. WADE (16:21): I commend the Hon. Ann Bressington for bringing this motion to the council to draw to the attention of the Legislative Council some issues in relation to our community's response to autism spectrum disorders (ASD). It is true to say that autism spectrum disorders are one of the burgeoning areas of the disability community. It has been quite extraordinary over recent decades to see the increase in ASD diagnoses. For example, in 2009 there were 720 new people diagnosed with an ASD by Autism SA, and that is an increase of 13 per cent on the 2008 numbers. My recollection is that there is a 50 per cent increase in ASD diagnoses in the last five years. This is providing a particular challenge to our school system. One in 160 school children between the ages of six and 12 have an ASD, and currently there are 3,370 school children with an ASD registered for Autism SA's school program.

For many of them, school is a challenging experience. A 2009 study showed that 96.6 per cent of 16 to 18 year olds with ASD have experienced verbal abuse and 86 per cent have experienced physical abuse across their lifespan. They are extremely high statistics for abuse, and indicate that, whilst ASD children and their parents aspire to mainstream education, that often involves having to deal with significant abuse threats.

Services across a range of areas providing for people with an ASD are proving to be inadequate. In that regard, earlier this year, as the Liberal disability spokesperson, I visited Mount Gambier, Port Lincoln and Port Pirie to meet with parents of children with ASD. Rather than detail the issues raised in all three places, I thought I might use the comments that I made in relation to my visit to Port Pirie to highlight some of the problems that families with children with ASD experience, even within the current service set.

On that occasion I spoke about the challenges parents have in accessing both diagnosis and early intervention. To get a diagnosis for ASD, you have to have two separate professionals confirm that the child meets the criteria for ASD. For some country South Australians—for example, if you live in Port Lincoln or Mount Gambier—that means waiting for the child development unit from the Adelaide Women's and Children's Hospital to come to your city. That may happen once a year. That will often involve parents at their own expense making the trip to Adelaide to get a second diagnosis.

Port Pirie, even though it is closer to Adelaide than Mount Gambier and Port Lincoln, has the double disadvantage in that it does not get outreach service visits from the Adelaide Women's and Children's Hospital, so parents from Port Pirie may be required to make the trip to Adelaide twice.

We might think that a trip from Port Pirie to Adelaide is an inconvenience but not a challenge. That is often not the case for families with children with ASD. ASD often involves a sensitivity to stimuli and a road trip can involve significant amounts of stimuli. For example, even a car flashing past and even the colour of the car flashing past—a red car as opposed to other colours—can be a trigger for particular children.

One of the mothers in Port Pirie highlighted that, in a recent trip to Adelaide, she had constant troubles with roadworks. People who have travel that route would know that there is a lot of roadwork happening. A jackhammer on a roadwork site can be a very strong sensory stimulus for a child with ASD. The point I am making is that not only are parents faced with the inconvenience and cost of travelling to Adelaide, but the trip itself can be a traumatic experience for the children and the family.

I make those comments by way of introduction to highlight the fact that, whilst the Hon. A. Bressington's motion concerns the problems for people with a PDD-NOS diagnosis, let us not kid ourselves to think that services to people with ASD who are being recognised by this government are in any way adequate. I acknowledge that the Hon. Ann Bressington and the Hon. Kelly Vincent both specifically made that point.

It was in the context of that inadequacy of services that in the recent election the Liberal Party gave a commitment to establishing an ASD-specific school. This is not groundbreaking, if I can be frank. We were, in a way, playing catch-up. Most other states and territories have ASD-specific schools. In fact, the commonwealth is establishing ASD-specific preschools right around Australia, including here in Adelaide at Prospect.

However, that was not going to be the approach of this government and it ridiculed the idea up hill and down dale. In that context, I was pleased to see a press release from Autism SA released during the election campaign which said:

Autism SA welcomes the recent announcement of the state Liberal Party's policy on quality education for children with an autism spectrum disorder.

In that release it went on to make a general comment about the prevalence of ASD, as follows:

As the number of diagnoses in South Australia increase, the demands placed upon our education system will also increase. We often see high rates of exclusions, suspensions and part-time schooling for children with Autism Spectrum Disorders and this needs to be addressed through the provision of appropriate educational programs and services.

An ASD parents group also issued a press release in March entitled 'Autism school parents dismissed', which reads in part:

The Labor Party's new $14.1 million package for new behaviour centres of children with behavioural problems is a reactive policy which offers bandaid solutions, argue parents of children with Autism Spectrum Disorders.

The founders of ASDschool.com, a lobby group which has been advocating for autism-specific education change, believe that the new behaviour centres will offer no new solutions for children with behaviour management problems, and may target children with Autism Spectrum Disorder, many of whom are regularly suspended or experience school breakdown as a result of their disability.

Narelle Clarkson, co-founder of ASDschool.com, says, 'There is a sharp contrast between Labor and Liberal over this issue. The Liberals have taken the time to listen and look at what is working elsewhere while Labor continues to bury its head in the sand. The government has lost touch with the people on the ground and seems to prefer to punish disabled kids for behaviour they cannot help rather than work with parents and professionals to ensure these kids have access to educational options.'

I reiterate the point that, while services are inadequate for people currently diagnosed as eligible for services, it is much worse for those who are denied access to even these inadequate services by their diagnosis.

We need to remember that ASD is an emerging set of diagnoses. It is only in the last 15 years that Asperger's has emerged as a distinct diagnosis within the ASD spectrum, so we should not be so arrogant as to close our mind to the fact that science and related disciplines would see emerging diagnoses. That is the case of PDD-NOS.

It is recognised as part of the ASD spectrum and it is included in the Diagnostic and Statistical Manual of Mental Disorders, Edition IV. Autism SA has made statements that PDD-NOS is one of five conditions known by the generic term 'pervasive developmental disorders'; autism and Asperger's are merely the best known, but PDD-NOS is recognised by the disability community as the autism spectrum disorders.

The reality, too, is that the commonwealth recognises PDD-NOS as part of the autism spectrum, and South Australians are able to access commonwealth-related services in South Australia. So, a person with PDD-NOS will be able to access services such as the Autism Adviser Program and the early intervention funding package provided as part of the Helping Children with Autism package provided by the commonwealth.

In this context, I would like to highlight the contrast between the commonwealth approach and the state approach to this issue, with reference to correspondence to which I have had access in the last year. On 16 August 2009, Jennifer Rankine, writing to a constituent, who I know is known to the Hon. Ann Bressington, said:

However, the Hon. Bill Shorten, the federal Parliamentary Secretary for Disability, requested a representative from the Department of Families, Housing, Community Services and Indigenous Affairs...state office meet with John Martin, Chief Executive of Autism SA. I understand that they discussed the potential benefits of services provided by Autism SA for meeting the needs of people with PDD-NOS and, in particular, your daughter's requirements.

So, the commonwealth minister had clearly approached the state in response to concerns from consumers. The dialogue continued when a letter was received from Monsignor Cappo. Part of that letter states:

You will be pleased to hear that PDD-NOS has been raised as an issue for discussion at the next Council of Australian Governments (COAG) South Australian Autism Group meeting, which was held in Adelaide on 14 September. Representatives examined the important issue that you have raised: that people diagnosed with PDD-NOS in South Australia are not eligible for autism spectrum disorder funding under the current eligibility criteria, unlike some other states.

The Department for Families, Housing, Community Services and Indigenous Affairs advised that they are seeking clarification about how the various states treat PDD-NOS in terms of eligibility for disability funding. It was noted that South Australia is the only state that does not fund in some form PDD-NOS for disability services. The commonwealth will discuss consistency of eligibility further.

So, having announced a specific program, which included pervasive developmental disorders such as PDD-NOS, in 2008, clearly, we have the commonwealth and, for that matter, Monsignor Cappo within the government raising concerns about this exclusion.

I note that Monsignor Cappo says that South Australia is the only state that does not fund in some form PDD-NOS for disability services. Minister Rankine has on different occasions claimed that our eligibility criteria are not unique and that they are shared by either three or five other states. One such claim was made in correspondence, and the other claim was made on Stateline. Either everyone is merrily changing their eligibility criteria or the minister cannot get her facts right. I prefer to take the one source who is not changing his story, and that is Monsignor Cappo, who says that South Australia is the only state that does not fund in some form PDD-NOS for disability services. That is reprehensible.

I would make this challenge to parliamentary secretary Shorten, who is in Adelaide today to speak to the disability community: it is his responsibility, as the commonwealth parliamentary secretary, to make sure that people who are recognised as having a disability receive their fair share of state and commonwealth funding. The fact that he has not insisted that the South Australian government liberalise its eligibility criteria is a reflection on him, as is, in my view, the fact that he has failed to enforce the commonwealth/state disability agreement as it relates to advocacy services. South Australia is the only state that is breaching its obligations under the commonwealth/state agreement to fund advocacy services.

That brings me to the last piece of correspondence in the series I want to highlight, and it is a letter to me—so I can be full and frank about who it is to and what it is about. The minister, in her letter to me dated 13 November 2009 after I had raised the PDD-NOS issue, said:

State-funded disability services are made available to people with an eligible diagnosis on the basis of assessed need. People with a single diagnosis of PDD-NOS do not meet threshold eligibility requirements for accessing the full range of services provided by Disability SA and Autism SA. People with a dual diagnosis of PDD-NOS and intellectual disability with complex needs are eligible for services from Disability SA.

The minister goes on in this letter to say that there are three other states and, as I have said, she also claimed in another place that there are five other states. Monsignor Cappo says there are zero. In that regard, I think it is worth reflecting on the comments the Hon. Ann Bressington made in her speech when moving this motion. She made the point that PDD-NOS clients are told, 'Well, you are eligible for the info line and the library,' which I think are the two services. I presume that is what the minister refers to when she talks about their not having access to a full range of services. However, I think they are weasel words, because information and the library are accessible to anybody who rings: they are accessible to the whole public. So, to say that a PDD-NOS person is entitled to services is like saying that any South Australian can ring the info line and go to the library. In the June statement, 'The provision of disability services—June 2009', we see the following:

Where a person contacts Disability SA with a need that can be addressed by the provision of information or brief assistance, this is provided immediately without the person having to be placed on the waiting list or having to meet any eligibility criteria.

That is a member of the public. So, what the minister is telling us is that, 'Gee whiz, we regard people with PDD-NOS as just as entitled to services as any other member of the public.' I am sure they will be glad to hear it.

Referring back to the minister's letter of 13 November, I also find it highly offensive that the government is reintroducing diagnostic-based rationing of services. The reason is that in 2006 the ill-conceived Disability SA reforms were constructed by this government, and one of the major selling points by this government was that we would get away from a diagnostic-specific focus in service provision. In that regard, let me read from 'The provision of disability services in South Australia—June 2009', published by Disability SA. In its recounting of the history, it states:

In 2006 this government established Disability SA from the amalgamation of the former...(IDSC), Julia Farr Services and Independent Living Centre as part of a major reform process. Disability SA is now the single government provider of disability services.

It goes on and asks itself:

What has Disability SA done to respond to the nation-wide increased requirements for disability services?

It answers that by saying, in part, that a single entry point for services has been established. Shortly thereafter, it says this:

Eligibility is now determined more on the basis of a person's functioning, with less emphasis on the need to meet specific diagnostic criteria, and consequently fewer people are falling through service gaps. Across-disability focus rather than a diagnostic-specific focus, now one where service providers can work with a family with different needs rather than multiple co-ordinators as a result of different diagnoses.

So, the government was promising, and continues to promise, that it was moving away from a diagnostic basis for eligibility and towards that based on need.

In that regard. I draw members' attention to the fact that people with PDD-NOS may have just as acute needs, in terms of support needs and other needs, as a person with any of the other pervasive developmental disorder categories or, for that matter, any other disability. I strongly support a needs-based focus for disability services and not a diagnostic-focused eligibility, and that is what the Hon. Ann Bressington is trying to push. We want to focus on need and not on whether the government recognises this label for eligibility.

In that regard, in the context of the similarity of the needs no matter what the label, I quote the head of Autism SA, who in Stateline on, I think, 16 April, said the following:

In essence all those five categories falling under pervasive developmental disorders are characterised by the same conditions, the same needs, the same issues. The needs of individuals who have pervasive developmental disorders are really no different to the needs of people who have autism, who have Asperger's syndrome.

The opposition agrees with that and is horrified that the government continues to ignore its own reform agenda and backtrack on its commitments to the South Australian community—that it would focus on the need of the person and not on the diagnosis.

As a footnote, I express my disappointment that the next edition of that publication I just quoted, 'The provision of disability services in South Australia—June 2009', interestingly drops that paragraph. To a significant extent it is identical from the June 2009 version to the December 2009 version. The fact that the government has chosen to stop talking about needs-based eligibility rather than diagnostic-based eligibility I think raises concerns it is backing away from a reform that I believe was well founded.

The Hon. Ann Bressington mentioned (and I have received representations to the same effect) that what we are seeing under this belligerent approach by this government is that people with PDD-NOS or their carers are actually seeking rediagnosis as people with autism or another pervasive developmental disorder. That is extremely unfortunate. It is a distortion of the therapeutic diagnostic role of clinicians. There are other reports that clinicians are tempted not to label appropriately and to make a diagnosis that fits within the eligibility criteria of the government.

For the sake of people with PDD-NOS and their carers, it is time for the government to focus on the needs of people with disability and not on the label that they might carry from time to time. On behalf of the opposition and on behalf of the shadow minister for disability, Ms Vickie Chapman, I indicate that the opposition will support the Hon. Ann Bressington's motion.

The Hon. T.A. JENNINGS (16:43): I rise on behalf of the Greens to support this motion moved by the Hon. Ann Bressington. The Greens commend the Hon. Ann Bressington for bringing this matter to the attention of the council. We are happy to put on record our support also for the increase of any focus on the issues of disability in this state. I note that in this motion we are looking to broaden the definition of autism spectrum disorder to encapsulate 'pervasive development disorder—not otherwise specified', which from here on in I shall call PDD-NOS, not least because it is quite difficult to say but also because obviously it is clearly difficult to get any money for.

I point to the problems with a concept of social inclusion, where a society seeks to make those who do not quite fit—the square pegs—fit into the round hole of society. I think that it is society that should be including those people who are currently excluded. Currently, those with PDD-NOS are excluded, whether it is in our funding or recognition of their diagnosis.

One of the most frustrating things must be to be tempted to get an incorrect diagnosis which, of course, serves no great purpose for anyone. We need to realise that our knowledge in this area has moved on and that PDD-NOS is diagnosed when the criteria are not met for more specific disorders. It is recognised around the world, and, indeed, I believe, in most other states and certainly the commonwealth of this country, that PDD-NOS is an autism spectrum disorder. I commend Ann Bressington again for raising this matter and indicate that the Greens will be supporting this motion.

The Hon. I.K. HUNTER (16:45): I say at the outset that members on this side of the house recognise the Hon. Ann Bressington's desire, as expressed in her motion, to improve the lives of people affected by pervasive development disorders. We welcome her concerns and her efforts in raising the issue. I am going to lay before the council some facts, which are much needed in this debate—facts that have been garbled by the Hon. Mr Wade in his presentation—which I think we all need to have access to.

We all know that the incidence of autism spectrum disorder is on the rise across Australia. Here in South Australia, both Disability SA and Autism SA have reported steady increases in young people being diagnosed with an autism spectrum disorder and requiring support services of the government. In 2001 and 2002, there were about 1,500 children that we know of with an autism spectrum disorder registered with Autism SA. Now, there are around 4,600 children, which represents an increase of about 200 per cent in the demand for their services over the past eight years.

Disability SA reports a similar increase and this represents as many as 10,000 South Australian parents who are faced with very difficult circumstances every single day. The government acknowledges that this rise has placed pressures on the demand for a range of services and has also increased the profile of the incidence of pervasive development disorders and autism spectrum disorders, both locally and nationally.

It must be said from the outset that the state government does provide services to children with PDD-NOS. It must also be said that we do not stand alone in our policy position. I can advise the chamber that I have been told that Western Australia, Tasmania, Queensland and the Northern Territory have similar eligibility criteria to South Australia for people with PDD-NOS, which is that people with PDD-NOS must also have an intellectual disability or a developmental delay to access services from Disability SA.

The government takes the view that, with the large demand for services, clients should be assessed for their overall need, not just a single definition or diagnosis. I am advised that the government assesses their needs in relation to their disability, whatever the label of that disability is, and that it will supply services in relation to that need, scaled to the level of that need.

The Hon. Mr Wade seeks to muddy his presentation with, I think, essentially support for the government's decision, but having a whack at the government on the way through. Mr Wade supports a needs-based focus for the provision of services—that is what he said—not one based on a single diagnostic label. We agree with you, Mr Wade. He is saying that he agrees with the government's focus on overall need. That is the government's position and it appears to be the opposition's position—we are united in that.

I can also advise that a range of services are available to South Australian children with PDD-NOS, aged up to 15 years, through the federal government's Helping Children with Autism package. This is available to children with PDD-NOS in the same way that children with autism or Asperger's syndrome can access this package. The Helping Children with Autism package implemented a number of initiatives, including autism specific learning packages and care centres, playgroup programs, training for teachers and school staff, and workshops and information sessions for parents and carers.

A range of new Medicare items have also been made available. These Medicare items provide additional opportunities for assessment and up to 20 additional services, in total, per child, up to the age of 15 years. I am told that autism advisers are also funded to assist families to access the services funded by this package, including up to $12,000 in commonwealth funding, or up to $14,000 for those in regional areas, to purchase early intervention services, until the age of seven.

The state government has almost doubled funding for disability since coming to office—from $124 million to $224 million, I am advised. Just last year, we injected more than $31 million in additional funding for disability services over four years for increased respite, in-home support and therapy services for priority families. During the election commitment, an additional $17.5 million for equipment was pledged, and an additional $1 million per year will be provided for autism assessment and early intervention services, including increased access to local diagnostic services, which aim to assist with early identification and support.

The Department for Families and Communities and the Department of Health are developing these additional autism services, which will be provided through the Department of Health and Autism SA. I am advised that the state government will continue to monitor issues as they arise, regarding South Australians living with PDD-NOS and is actively working with the commonwealth Department of Families, Housing, Community Services and Indigenous Affairs on this issue.

I can also advise that officers reporting to the Community and Disability Services Ministers' Advisory Council is currently looking at this issue. For this reason, I move an amendment to the Hon. Ms Bressington's motion. I move:

Paragraph 2(b): Leave out the words 'that encapsulates "Pervasive Developmental Disorder—Not Otherwise Specified".'

The motion then reads:

2(b) ensure a single definition of Autism Spectrum Disorder is used universally throughout government departments and agencies.

The reason is so that the hands of the government are not bound when they are dealing with other states, territories and the federal government in coming to a national, uniform code of conduct in dealing with these issues. South Australia will play an important part in this work, but the government is determined that services will be provided on a priority basis to those who need them most, as the Hon. Mr Wade indicated they should be.

The Hon. A. BRESSINGTON (16:52): First of all, I would like to thank all members for their contribution on this motion. At the end of the day, I guess it comes down to your interpretation of whether we have a needs-based or diagnosis-based provision of services. I certainly do not see any evidence in this issue of disabilities that we are anywhere near requiring a needs-based assessment of people with a disability of any kind, let alone PDD-NOS.

I would also like to thank Mrs Andrew for coming forward and making her private situation known. This was not at all easy for her to do; she is a very private person. I believe she is a fierce lobbyist behind the scenes for PDD-NOS sufferers but, publicly, she is a very private person. It has taken a great deal of courage for her to allow us to discuss her personal issues in this chamber, in quite a specific way, I might add. I would like to read a paragraph of a letter from the Hon. Jennifer Rankine in relation to Mrs Sheralee Andrew and her situation. The letter states:

I understand that Autism SA has advised the Andrew family that they can access a number of general Autism SA services. These include the telephone information line, specialist workshops, resource centre and relevant consumer-led support groups. Autism SA has further advised the Andrew family that they can offer a full range of relevant Autism SA services on a fee-paying basis.

The fact of the matter is that the circumstances of most people who are dealing with children with a disability—especially autism and Asperger's, which are very difficult behaviours to deal with—are such that these families scratch for every dime. I find it condescending and patronising of the minister to say that services are available on a fee-for-service basis when there is no hope that these people would be able to pay the fee to actually access those particular services. I remind the government of what I have said in many other speeches: if we cannot look after our sick and vulnerable and meet their needs, then I question what purpose we serve.

The Hon. R.I. Lucas: Hear, hear!

The Hon. A. BRESSINGTON: Thank you. It is true. I think we can deal with all the big issues, and I think we do that quite well in this place. However, when we get down to the nitty-gritty of individuals and their suffering and distress, their trying to cope with daily life and trying to keep their family together, for those people who live on meagre resources, a sentence like, 'They can access services on a fee-paying basis' is offensive, to say the least.

The Hon. Ian Hunter said that the Hon. Stephen Wade was garbling some of the figures. I would like to make the point that the Hon. Stephen Wade was talking about school-age children when talking about the number of people with children suffering with autism spectrum disorder. I believe that the Hon. Ian Hunter's figures included that of preschool-age children as well. So, that would give a bit of an explanation as to the disparity in the figures.

I am not quite sure about the amendment that the Hon. Ian Hunter has put forward because, as usual, there has been no consultation and no discussion about how, what, where, when and why we have the need for this, other than a two-sentence explanation at the end of his speech. So, on that basis alone, I would be inclined not to support this amendment.

This motion was put forward to encapsulate pervasive developmental disorder—not otherwise specified, and to point out the issues that sufferers of this disorder—and their families—have to deal with. Given that I have had no consultation about this amendment—and I do not believe anybody else has—if it is not important enough to consult on, then it is certainly not important enough to include.

Amendment negatived; motion carried.

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