If you are a regular reader of my blog, you will know that Poss turned 7 a few weeks ago. I am sure that we are like most parents, in that each birthday is slightly bitter sweet.
We love that Poss is growing older, becoming more of a little person every day and enjoying her company more than ever. But of course, there are times when we miss her baby days ever so slightly, her cute little baby face and let’s be honest, it was nice when she napped 😉
There is an extra layer of emotion that comes with a 7th birthday for a child on the Autism Spectrum. She is no longer eligible for  the FaHCSIA Helping Children with Autism Package. This is a form of funding that is available for eligible children that allows them up to $6000 a year (to a maximum of around $12,000) to pay for early intervention funding, which cuts off at 7 years old.
This might sound like a lot, but when you are paying anywhere from $130 per session for OT, to $160 per session for psychology and $1000 a term for social skills groups – the $6000 gets eaten up pretty quickly. And that’s not even starting on other therapies such as ABA (Applied Behaviour Analysis), which can run up to $50,000 per year.
We will now wade through the various limited funding options and try to make them stretch for as long as possible. There are various plans available under Medicare and we have private health insurance, which will go some way to helping out – however, there will be a gap. And it will be a significant gap.
That’s the way it is. And we know it’s an investment in her future – so we aren’t complaining, it is what it is.
We are grateful for the opportunity to have had 18 months of FaHCSIA. We can tangibly measure how much of an impact this intensive therapy has had on so many aspects of her life (and therefore ours). It has built a strong foundation, which we can now build on over time.
It’s not a perfect system. I can only wish that we would continue to receive the levels of funding support we have had to date. I also know I am not alone in this, there are plenty of parents out there frustrated by the arbitrary age cut off, who’s kids have missed out entirely due to not being diagnosed until after the age of 7. But it’s something, it’s a start and that has to be better than nothing.
I read an article today in The Age, relating to changes to the diagnostic criteria for Aspergers Syndrome, Autism and PDD -NOS (Pervasive Developmental Disorder – Not Otherwise Specified). You can read the full article here.
In summary the concern seems to be; that by changing the diagnostic criteria, from 3 or 4 separate diagnosis, to 1 umbrella term, encompassing various levels of severity, children who would receive a diagnosis (and therefore funding support for therapy) under the current criteria, may miss out completely under the new model.
I can only stress how devastating this would be for parents, who know their kid need support and a positive label* to ensure their kids get the help they need, yet may be unable to access it. This final line in the article says it all for me:
“Teachers and all parents should picture this: in 2018, a teacher could be dealing with a child with untreated ”social disorder” rolling around the floor and refusing to sit at his desk, not teaching the other 19 neurologically normal children in the room”
This doesn’t even take into account the kids who already have a diagnosis, that may change under this new diagnosis criteria. I posed the question to Autism Victoria (AMAZE) on their Facebook account today. This is an except of their response (you can read the full response here):
“Autism Victoria/Amaze is arranging to bring together a number of highly regarded professionals to discuss the introduction of DSM-5 more fully to assist in developing a position on this development. Once the meeting has occurred we will share with our members the result and invite further comment and discussion.”
For us… well, it will be interesting to see how it all unfolds. Although in speaking with Poss’ psychologist this afternoon, she assured me that Poss will be essentially unaffected as she will still meet the diagnostic criteria and will most likely remain on the Spectrum.
I wasn’t sure whether to cry; knowing she would always have the label, or to celebrate knowing this label will ensure she continues to receive whatever funding and support she is entitled to.
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*I will blog later on my views to do with a negative label vs a positive label
You can read more about the proposed changes to the diagnostic criteria here.
It is a tricky time for us. We’ve faced the loss of funding now Heidi has turned 7yo and trying to find money for both girls to at least attend one therapy a term. Then to find out that the diagnosis is at risk. Heidi will not be an issue, but Annie is borderline and she is the one having the harder time of fitting in – oddly, I think because Heidi is more obviously different the children make more accommodations for her.
Marita recently posted..Autism Hero Highlights
I know this well Marita and we have had to scale back therapies as well, to try to ensure she is getting the support she needs, without sending us bankrupt in the process! I know what you mean about the other kids making accommodations. Because Poss looks so ‘normal’ I think their expectations are higher, than if she looked ‘different’ and when she doesn’t live up to what they are expecting, they are almost shocked. Adults are guilty of this too. It’s a hard one – we want them to be as high functioning as possible, but then people expect more of them… Hang in there – you are doing a FABULOUS job!
And add in all the work undone by the disappearance of certain Disorder’s such as Aspergers? Boy 1 is fantastic at 14, and he is an out and proud Aspie. He revels in his own identity and a BIG part of that is being on the spectrum.
BUT, the child at 14 is very different to the child at 4. Without the diagnosis and the path we chose BECAUSE of that diagnosis, he could well have been the child unable to read , or socialise, the angry child whose frustration turns to violence, the depressed, lonely teenager who takes his own life.
I do not know who gave these so-called professionals the right to play God, but by hell they better be aware of the repercussions.
Makes me so very angry.
You are so right – it scares me greatly.
The diagnosis we all fight against at first, we end up fighting for, because it helps us understand our children, helps them to contextualise their worlds and ensures they receive the support and understanding they need to become the most awesomest versions of themselves.
If you take that away, what happens?