Tasmanian autism advocates call for significant changes to the NDIS



In its latest monthly newsletter, the secretary of Action for Tasmanian Autistic Children, Roger Law states that the NDIS is repeating the mistakes that caused the collapse of the various State Disability Schemes. He is now calling for the division of the NDIS into two bodies, NDIS and NBDIS (National Brain Disorders Insurance Scheme). He recommends that the present scheme remains responsible for the funding of physical disabilities, at which it is highly successful, and that a new body be formed to oversee disabilities caused by brain disorders.

“Unless there is change, the taxpayers will be paying out billions of dollars for a scheme that is making the same mistakes that caused its predecessors to collapse.” Mr Law stated. “Inevitably the NDIS will follow suit.”

“When de-institutionalisation came into effect in Australia, states adopted a policy of treating those with brain disorders as part of the pre-existing Disability Schemes which were designed to cater for the needs of those with physical disabilities. Thirty years later,” he went on to say, “from being a small addition to those with physical disabilities, those with brain disorders now constitute well over 80% of people with disabilities in Australia, yet we continue with a model that is designed to meet the needs of those with physical disabilities. The growth in brain disorders is epitomised by the growth in autism spectrum disorders, occurring at the rate of 1 in 15,000 at the point of de-institutionalisation to the current rate of one to two per hundred today, and still growing.” 

In his editorial, Roger makes the point that the brain is an organ of the body. When something goes wrong with any of the other organs of the body, this is regarded as being a medical condition and treatment is administered accordingly. However he goes on to say that when the brain malfunctions, this is treated as a mental disability, and little attempt is made to fix the causative medical conditions that underlie such malfunctions. He argues that the advancement of scientific research has brought, and continues to bring about, significant advances in our understanding of brain disorders. This is increasing at a considerable pace. Australia, by clinging to the past failed models of care, risks being left behind with not only a totally inappropriate model, but one that is also economically unsustainable.

In advocating for the establishment of a separate body to deal with the needs of those with brain disorders, Roger states that this will allow Australia to build the appropriate services to take advantage of the scientific breakthroughs that have already occurred, and to be positioned to take advantage also of those that are poised on the horizon.

“For example,” he states, “the new initiative in the USA announced by President Obama in his Address to the Nation earlier this year, of a Precision Medicine approach to brain disorders opens up the possibility of individual treatments designed to tackle each person’s specific needs.”

Mr Law said that since the editorial was written two weeks ago, there have been a number of new breakthroughs that back up the basic tenets of the editorial. For example, a research report from U.C. Davis for the first time has estimated the cost of autism to the US economy today as well as projecting those costs for the year 2025. They forecast the annual direct medical, direct non-medical, and productivity costs combined will be $268 billion dollars this year, which is 2.009% of US GDP. By the year 2025 those costs will have risen to $500 billion, and potentially 1 trillion dollars by 2025. The lower of these two estimates will occur if there is no increase in prevalence, the higher number if the autism numbers keep increasing at their present rate.

Mr Law went on to say that the US population (320 million) is about 13 and a third times that of Australia. If we assume an Australian dollar buys the same in Australia as a US dollar buys in the US, the annual cost of autism in 2015 in Australia will be $20 billion! IT IS FISCALLY IRRESPONSIBLE FOR OUR GOVERNMENT TO CONTINUE WITH THE PRESENT POLICIES TOWARDS AUTISM, WHICH ARE MODELLED ON POLICIES THAT HAVE FAILED FOR THE LAST 30 YEARS.

“The recent announcement that the National Institute of Health in the US has joined with the Simons Foundation ,” Roger says, “in a $28 million collaboration to find the different types of autism and their genetic causes and then to match them with the appropriate therapies - behavioural, drug or gene therapy - highlights the need to retrain our medical workforce to be able to take advantage of these breakthroughs as they occur.”

He instanced that a small country like New Zealand already has two universities that provide courses to produce Board Certified Behaviour Analysts but Australia has no university offering such courses.

Mr Law pointed out that Professor Alan Fells in his address to the National Press Club outlined the need for change, and the changes he outlined in his recent report are supported by ATAC.

“These could be considered part of a move towards Precision Medicine in Australia.” Mr Law stated. It only by clearly dividing the roles of Insurance Support into two bodies designed to specifically meet the different needs of their clients that will allow the radical change in support needed for those with Brain Disorders. To continue along our present path builds disaster for those with brain disorder disabilities, and would be completely fiscally irresponsible.”

Roger Law, Secretary ATAC
August 24 2015 

“Insanity is repeating the same thing over and over again and expecting a different result.” Albert Einstein 


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