Catherine Viney, in her recent article ( here ) says: “The NDIS was originally designed to address the inequity that exists in our community between people who have a disability and those who don’t, and we need to keep it that way. If the full scheme role out is approached differently, we risk creating more inequity in our society and Tasmanians living with a disability may not be given the choice and control they deserve.”
Catherine’s article comes at a time when there is some disquiet in the autism community at the direction being taken by the NDIS. One of the autism peak bodies (Autism Asperger’s Advocacy Australia – A4) recently published an article on its website which questioned whether the NDIS understood the needs of those with autism. (Click here for A4 article) My organisation, Action for Tasmanian Autistic Children, (ATAC) reprinted this article in a recent newsletter as our experience was similar to that of A4.
In the trial period of the NDIS, Tasmania is testing the scheme with an adult population. Therefore it is important that we find we listen to what is happening in the States where younger populations of disabled children are being trialled. If we get this wrong, and the NDIS becomes just a means of financially boosting the present service providers, and appropriate changes are not implemented where they are needed, then the scheme will be a costly failure.
If we look at the history of the NDIS, we find it originated as a policy of the Whitlam government in the 1970s. When Whitlam was dismissed in 1975, the policy had still not been implemented. It is important to remember that this policy was designed for people with physical disabilities, as those with mental health problems and mental health disabilities were still being cared for in institutions.
The intervening years saw the closure of these institutions by State governments throughout Australia. In Tasmania the new Bacon government came to power just in time to finalise this process. I was present at the negotiations leading to the closure of the Royal Derwent Hospital and Willow Court, and I asked the State Government’s leading psychiatrist at the time what was planned for those with
mental and intellectual disabilities in the future. I was told that those still in the hospital would be moved into group homes in the community. He stated that with the new drugs that they had, people with mental health problems would be able to live in the community, with services being provided by local doctors and community workers. He stated that the autism in the community was rare, and gave an estimate of a rate 1 in 10,000, which meant that there were less than 50 people in Tasmania with autism at that time. With proper respite care provided for their families, they would be able to stay in the community in their homes.
Tasmania followed the other States and simply adapted services designed for those with physical disabilities to cater for those with mental health problems, as well as for those with autism and other intellectual disabilities.
The assumptions that were made at the time of de-institutionalisation have proved to be incorrect. In a period of 20 years the nature of disabilities within the community has completely changed. The Australian Bureau of Statistics reports that mental health, acquired brain injury and autism now account for 87% of all disabilities. Physical disabilities take up the remaining 13%!
The crisis in disability care in Australia is a crisis in treatment and care of those with brain disorders and injuries. This is illustrated very clearly in the case of autism, where the numbers of people diagnosed have been doubling every five years. (Click here to read Autism/ASD prevalence in Australia … up to 2012 – APAC’13 presentation).
In 2010 the Federal Government asked the Productivity Commission to enquire into the feasibility of a National Disability Scheme in 16 June 2014 ATAC Action for Tasmanian Autistic Children Australia. The trials that we are at present conducting will complete by 2017 when the full scheme is due to be implemented. This is a period covering seven years, and judging on the expected continuance of this trend, the numbers of autistic children will have more than doubled in this time, and all the costings used by the Productivity Commission will be completely out of date.
There is a further problem which will impact on many of that 87% of the disabled. This is the phenomenon that scientists name as ‘anticipation’. They define this as the process whereby the families who have genetic disorders find that in succeeding generations further mutations of genes occur and the disorder becomes more acute. In the case of autism we see new families coming into the disorder at the higher end of the spectrum, and the children of those families already part of the spectrum picking up more genetic mutations and becoming more deeply affected, including a higher incidence of co-morbidity as well as the deepening of the autism disorder. This is reflected in recent research which shows that people with autism have more hospital visits and use health services significantly more than other members of the community. The NDIS has not taken this into account in its costings.
Other countries are facing the same crisis as Australia. An examination of what is occurring in Europe and the US is enlightening. The European Economic Community has poured millions of Euros into a research consortium, The European Brain Initiative, which is a collaboration that brings together the major research establishments and the pharmaceutical industry to find the causes of brain disorders and work towards rectifying them.
In the US the Obama administration has vastly increased its funding to the National Institute of Mental Health and charged it with the same purpose. These two major initiatives are now collaborating and have vastly increased our knowledge of brain disorders. The US has gone further. 37 of its 50 States having passed laws requiring health insurers in their states to cover evidence–based early intensive interventions for autism based on Applied Behavioural Analysis.
The main theme at the International Meeting for Autism this year was the need for early diagnosis for children with autism so that early intervention can commence in the first two years of life. The Holy Grail of course is to have a DNA test at birth to identify those genes which give a child the predisposition for autism. New research funded by Autism Speaks, has just been announced, and they have in addition reached agreement with Google to upload all genetic information onto the Internet as an open access resource for autism researchers. This should bring us to the point where we CAN diagnose at birth within the next few years rather than in the long term.
To its credit the Productivity Commission proposed a scheme to cover the needs for those with autism. Its proposal was that those with autism would be in the highest level of care and would be allocated enough finance to cover evidence-based ABA programmes. It was thought that this would bring about a growth in this area, expanding it to the point where it would cover all of Australia.
What the A4 article tells us is that those implementing the NDIS do not understand autism and are just imposing the old State Schemes, in which they have been trained, on the Federal Scheme. They are placing those with autism in the lower levels of the scheme, therefore preventing those in need of ABA from accessing the help they need. If this continues, those with autism will continue to require increasing levels of care which will escalate the costs of the NDIS to the point where it will collapse under the financial burden, as happened to the State based disability programmes.
In her article Catherine Viney quotes a disability rate of 25% in Tasmania, indicating that there are 125,000 people with disabilities in this state. Of these 109,000 have some form of brain disorder. It is clear that putting those with brain disorders into respite care has failed and is no longer financially sustainable. If A4 is correct in their observations, then tax payers are being deluded and in spite of all the support and effort that has gone into the NDIS, it must fail simply because it has failed to grasp the central point – that disabilities in the 21st century are not the same as those in the 1970s
16 June 2014
