As soon as Milla was diagnosed with Autism, we were handed the paper work to apply for “Helping Children with Autism” (HCWA) funding. This provides $12,000 to children diagnosed with an Autism Spectrum Disorder, to use on selected therapies and resources, until the age of seven. $12,000. That’s a lot right? It’s also one hell of a responsibility to hand to parents, still shell shocked from an ASD diagnosis. Although you are technically assigned an ‘Autism Advisor’, who talks you through the funding, and what it can be used for, at the end of the day, you are left sitting with access to $12,000 to spend on therapies for your newly diagnosed child, and more often than not, absolutely no idea where to even start.
I firmly believe that each family should be assigned a caseworker, someone who you can meet with on a regular basis, who can get to know your child, and their needs, and talk you through the best options of therapy that will suit your particular child’s specific requirements. Until this happens, families are essentially left to fly blind, trying to figure out a system they have been thrown in to whilst still wrapping their heads around the fact their child has been diagnosed with an Autism Spectrum Disorder.
Milla was diagnosed with ASD just after her second birthday. A little over two years later we have spent all of our funding, and learnt a lot of lessons. I hope that by sharing what we have learnt along the way, other families can make a bit more sense of a system that can be easily overwhelming at a time when people are at their most vulnerable.
CHOOSING TYPES OF THERAPY AND A THERAPIST.
Take some time and do a bit of research. Don’t be afraid to ‘shop around’ for therapists that suit your child and their needs. I think I went in to a bit of a panic, and just threw Milla in to everything; speech therapy, occupational therapy, social skills classes, whatever was offered. I just went through the nearest early intervention centre to us, and with the therapists they offered. I didn’t have enough of an understanding at that point, of what Milla’s specific needs were.
We spent 12 months seeing an OT fortnightly, who, although lovely, wasn’t addressing Milla’s immediate issues. The thing I really regret is not trusting my own instincts, once I realised that she wasn’t working out for Milla. I was afraid to hurt her feelings, and felt awkward about ‘breaking up with her’. I know that probably sounds insane; but those first 12 months after diagnosis are an extremely vulnerable time. You feel like you have literally been thrown in to the deep end, and your therapists are the ones holding your head above water. Something you come to realise though, once the shock of receiving a diagnosis wears off, YOU know your child best, and you have to advocate for them and their needs. I wasted literally thousands of dollars on a therapy that wasn’t working for Milla.
We also wasted a lot of money on ‘social skills’ classes. Milla was only two when we started, the youngest child in the group, and really was far too young to get anything out of them. Again though, in that initial panic at the start, I just jumped on whatever was suggested. I think my one major piece of advice when it comes to choosing a therapist/therapy is there is no rush. Once you receive a diagnosis of ASD, you feel like suddenly life is out of your control, and the only way to can control it again, is by taking action. You’re given what seems like a huge amount of money, and told to go off and ‘fix’ your child. The thing is, you need to give yourself time to actually absorb what is happening. To get your head around the fact that life for your child, and your family, is going to be a little bit different to how you had imagined it.
- Take the time to read up on ASD, and different types of therapies.
- Make a list of particular issues your child is having right at this moment and prioritise what is most pressing; what is affecting their quality of life the most? This will keep changing as time goes on, new issues will arise, priorities will change. Try not to think too far in the future.
- Try and find information on what services are available in your area. Find out if there are support groups locally, or hop on Facebook and search for local online groups. Ask questions- what therapists do people recommend? Remembering of course, what works for one child may not work for yours.
- Don’t be afraid to ‘trial’ different therapists. Walk in to your first session with the list you made of the most pressing issues your child has currently, so you can start working on objectives and goals right from the start. Trust your instincts. If you don’t feel it is working for your child, then keep looking. Don’t do what I did, and keep forking out $150 a session for something you know is not addressing your child’s needs.
The funding money can also be used to buy resources that may help your ASD child, as recommended by your therapists. Again, I stress, WAIT. Wait until you are settled in with the right therapist. Wait until you have developed clear objectives about what you want to achieve, and how a particular resource can help you reach that objective. It is so easy to get swept up in the moment.
Case in point- barely had the ink tried on the official ‘diagnosis’ paperwork, and we were encouraged to buy an iPad for Milla, who was two at the time. Don’t get me wrong, there is a whole stack of research supporting the benefits of iPads for children on the spectrum. Do I think every child with ASD *needs* an iPad? No. Milla loves her iPad, and now that she is a bit older it is a great distraction for her when she is feeling over stimulated. However, if we had of waited a little longer, and really got a clear picture of Milla’s needs, an iPod would have been far more beneficial. As time went on, it became clear that Milla had some fairly serious sensory processing issues; and an iPod and a set of really good headphones would have been a massive help to her when out and about, particularly when it came to walking (my only mode of transport!) along busy, noisy main roads.
In my opinion, and others may disagree, resources should only be purchased when there is a direct link between a particular item, and an objective within therapy. I know we spent far too much money on resources that, although Milla loved playing with them, didn’t directly assist her with a given behaviour/issue. Also be aware that different therapists/early intervention centres have different policies around purchasing resources with your funding money. Most will charge an admin fee, which can be anywhere from $5 to $200. Unfortunately I was charged the $200 fee, not having a clue that this was not necessarily a ‘standard’ amount. Again, do your research!
Some places also only let you buy select products from certain suppliers, whereas other services allow you to go out and source your own resources (within your own price range) and they will reimburse you once you present the receipt. This is definitely a better way to go, in my opinion. We were offered the option of buying a trampoline for Milla, however we had to buy a certain brand, which was one of the most expensive on the market. We ended up just buying her a cheaper trampoline for Christmas, out of our own pocket. Obviously nowhere near as fancy, but still does the exact same job. (Therapy wise for Milla, it was about sensory seeking, and burning off some of that energy that causes her to be constantly moving, wriggling, fidgeting)
THE BIGGER PICTURE.
Right at the start I mentioned just focusing on the ‘now’, and not thinking too far in to the future, one step at a time kind of thing. I think this is crucial for that first year post diagnosis. There is so much information to absorb, so many issues to get your head around. That first year is for families to find their feet again. Generally, (and unfortunately) it takes about 12 months for a place to come up within the government funded Early Childhood Intervention Service (ECIS).
Once you are linked in with a service through ECIS, I would take the opportunity to reassess what you can do with your funding, and what you should start thinking about looking forward. There are many ‘School Readiness’ programs run by different services, that vary in price, but can cost up to, and over $1000. Again it’s about doing your research, but it’s something definitely worth thinking about, and ensuring you have funding left over to pay for one of these programs.
A lot of therapists are happy to take a break, once you are set up with activities and exercises to carry out at home, and just stay in touch via email, and touching base in person every few months or so. We have found we dip in and out of therapy with Milla, depending on her needs. So we might have an intensive few months of OT every fortnight, then once we’ve developed some strategies to use at home, we have a break for a bit, and focus on another area (speech, psych etc) Or if we are having a smooth patch, just focus on the therapy we receive via ECIS, and day to day skills through childcare, Pre-School and play dates. It is seriously amazing how fast the funding, which seems like such a huge amount, can be chewed up in such a short time.
Have you been through the HCWA system? Do you have other any other tips or advice to offer? Or are you a ‘newbie’ to this whole crazy thing? Any questions I (or others) might be able to answer for you?