Sunday 1 July 2018

Dear Ms Shanahan

Recently I read an absurd article in a major Australian newspaper in which the author states that autism should be removed from the NDIS. In essence, the author states that individuals with autism shouldn't be able to access funding, that autism shouldn't be classed as a disability and that disability funding should be given to those that really need it.


But before I get onto my open letter, I'll give you a little background on the NDIS.

The NDIS is the National Disability Insurance Scheme that is slowly rolling out Australia wide. The scheme has been in the trial stage in many parts of Australia over the last number of years and is gradually replacing other funding schemes Australia wide. In the last figures that were released about the participants that are currently in the scheme, it was stated that there are 142,000 individuals in the scheme. Of those 142,000 individuals, 29% of them are listed as being ASD. This is quite a large percentage and the scheme is yet to be rolled out nationally.

It would appear that the sheer number of individuals diagnosed with autism wanting to access the NDIS was grossly underestimated and the administrators are scrambling to "fix" the issue.

There have been several reports leaked to the media over the last month in regards to the NDIS changing the eligibility of Autistic individuals in being able to access the NDIS. If the proposed changes are put in place, it would mean that autistic individuals with a level 1 or level 2 diagnosis may find it much more difficult to access the scheme.

From a personal level, the NDIS has been instrumental for our family over the last three years in enabling L and O to access services such as multi-disciplinary therapy services and support services. Without the NDIS we would not have been able to pay for the level of support that both O and L have been receiving. And without the level of support that they have and still are both receiving, I doubt that they would be making the progress that they currently are.

I stumbled onto the most recent article quite by accident and as I was reading it, I could feel steam coming out of my ears. So here is my response to the author.

Dear Ms Shanahan,

For someone who has three adult children with health and subsequent disability issues, you are not showing any compassion towards others nor are you showing any knowledge about autism.

I am in a quandary as to which if your misguided, incorrect and downright offensive statements to address first.

There is no such thing as "mild autism." End of story. You either have autism or you don't. Mild autism is like saying someone is slightly pregnant. You either are or aren't. Autism presents differently from individual to individual. Yes the diagnosis of ASD is presented as a scale, but Autism itself is a spectrum. Individuals diagnosed with level 1 ASD still have struggles. The struggles may differ from those who have been diagnosed with level 3 ASD, but the struggles are still present.

We too sought and are receiving "practical help" for my children, as you put it, in the form of occupational therapy, speech therapy and child psychology sessions. Both of which are assisting my children to flourish both socially and in the education system. It's called early intervention therapy and the idea is that if a child receives therapy services early on in life, then they should not need as much support as adults. We are giving O and L the skills now that they will need as adults. We're setting them up to succeed as adults.

Both of my children were diagnosed in Western Australia and I can guarantee that we did NOT doctor shop for their diagnosis of ASD. We didn't choose to spend thousands of dollars on specialist appointments and assessments. It was a necessity and none of which we could claim through Medicare or through our private health fund. The assessment process took a good six months, three separate assessments and a lot of heartache. Times two. Why anyone would doctor shop to go through an assessment process amazes me.

And at no point during either of my children's assessment was "the parents level of stress," i.e. mine, taken into account. This does not form part of an ASD assessment. Period.

I have an idea Ms Shanahan, how about you sit in on an ASD assessment (from start to finish, so you may want to clear the next six months in your work schedule) just so that you can personally see what an assessment details. Keep in mind that most specialists are booked out for up to six months so you will be waiting in limbo until an appointment becomes available. You may also need to cancel plans with very short notice if an earlier appointment is made available. You will also need to factor in travel time, not all specialists are located in the same area so an hour appointment session may, in fact, take an entire day due to having to travel to and from the specialist.

You would have children like O and L go through a community education program instead of receiving vital funding and therapy. Pray, do tell, like what?????? And who will pay for such programs???? Who will run such programs???? Specialist sessions are not cheap. Where would community education programs gain the level of funding required to conduct intense therapy similar to early intervention programs for high numbers of children?

Without our amazing OTs and Speech therapists over the last three years, I highly doubt that my children would be making the progress that they are and continue to make. And without an ASD diagnosis, neither of my children would receive the support in school that they need.

You are incredibly fortunate that you received all the services that you did for your children. We receive very little financial assistance from the government. And many families that I have come to befriend through the therapy that my children attend, are in the same boat as my family. The small allowance that we receive, pays for fuel to and from therapy. I'd love assistance to pay for their various medications, very few of which are on the PBS list. We had to fight tooth and nail to receive the small amount of financial assistance that we currently receive.

Please educate yourself on autism before you next write an article on why Autism should be removed from the NDIS.

Yours Sincerely,
This very angry parent.

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