My husband and I are the parents of 6 young adults, 5 of whom are disabled. Four of them are autistic with 3 falling in the severe to moderate range. They also all have up to 3 co-morbid disorders which are associated with autism. My husband and I did not realize we had a genetic mismatch as originally my youngest daughter was the first to be diagnosed. My three boys were diagnosed in their adolscent years which made life extremely challenging. We have one autistic son placed in mainstream employment but that was a very fine balancing act in ensuring his employers understood what autism was and creating an "autistic friendly" work place for him in the factory. Every day he arrives home tired and exhausted from coping with neurotypical interactions and the demands that accompany this. He would not be the only autistic person that faces this problem
I have done a lot of research regarding the current changes and concerns regarding the impact of autism, not only on the individual but mainly on parents, families and carers. They are as follows:
My concerns have retraced around the following items:
Will it be a two tiered model of delivery?
If it is then how will affect families who are not in the position to co-contribute?
If NDIS pays for particular services then will the government state because this model meets specific needs/aids/requirements of clients the current level of the Disability Support Pension will then be lowered as specific services are being paid for through the model?
What happens to waiting lists regarding services etc for families that cannot co-contribute?
With NDIS who qualifies for what and how do they qualify?
2. Disability Support Pension
It is well published that Gillard and Swan want to reduce the number of recipients receiving this payment and autism it seems is one of their key target areas (correct me if I am wrong) so with the new Centrelink criteria for qualifying for the DSP why is autism not listed under the neurology area? Autism is a neuro developmental disorder of the brain. We have MRIs illustrating there is such a thing as an "autistic" brain. In fact I listened recently to a discussion where they have found the folds of the brain lobes in autistic people are different from neurotypical people. So why is it glossed over in that particular criteria?
Will the current level of the Disability Support Pension remain the same or will all pensions be paid on an equal basis?
Autism is, as Volmar stated basically a social deficit disorder meaning our children have major problems in communication, social skills and behaviors. My son can talk but he takes things literally eg when told to milk his parents for money for his latest obsession answered in a very serious voice that his parents were not cows and he meant that truthfully. So does the other new Centrelink criteria ensure these kinds of deficits are taken into account and catered for during the assessment period?
3. Carer Allowance and Carer Payment
Why are both payments limited to just two children for each payment per carer? My husband and I share the care load equally so why are we not paid each for all four children in both the Carer Allowance and Carer Payment? We save the government millions in maintaining - and wanting to maintain them forever - under this roof. This means the government does not have to pat out for new buildings, upkeep and maintenance of those buildings, utilities, transport, furnishing and so on. The list is endless. In addition while this may be a silly scenario what if my husband ducks out to get groceries and my youngest son has a meltdown in his absence? Now my husband is his paid carer so do I tell him to put it on "hold" until Dad gets back because he is the one paid to care for you and not me. In programs, classrooms etc all students are catered for and looked after by ALL relevant staff in that area. If you are in a program or class and there is a meltdown all staff possible assist because not only is their duty of care, it is also what they are paid and expected to do. I wonder what would happen in these environments if staff were only paid per client, student/s they were assigned to work with. I don't think they would be too happy and rightfully so. When I did yard duty I looked after ALL the children in that yard not just merely a selected few. So at home I deal with the meltdown by myself while he is absent.
Then we come to staff who work in that area. Again we save the government money regarding training staff, staff wages, holiday pay, sick leave, casual work payments, roistered days off, work cover etc. Another endless list.
Staying on the subject of staff. They get to clock off and go home at the end of their work day and they have days off, bot to mention the advantage of sick leave and holidays. My husband and I, although we have support are at the end of the day "IT."Being "IT" means no sick leave, no holiday pay, no work cover and you are on the job 24/7 365 days a year.
With changes in Centrelink criteria for qualifying for the Disability Pension what happens if your child no longer qualifies. Again you have a disabled autistic child but according to Centrelink they are no longer disabled. The result - whoooooooooooooosh -- more money back into the governments coffers because the families no longer meet the criteria for Carer Allowance and Payment. That is a pretty good incentive to target autism.
With the new DSM in the making Volkmar himself admitted there may be children who now will not qualify for a Pervasive Developmental Disorder diagnosis due to a more stringent tightening of the criteria. I personally find this a very frightening statement. It reminds me of searching for the golden ticket to visit the Willy Wonka factory. Parents need a diagnosis and will push extremely hard for this to occur. Why? Because a diagnosis means access to services you would otherwise never receive
Your concerns may be totally different than mine which is fine by me but at the end of the day we are all facing these questions, concerns and worries.