I read a lot of autism blogs, mostly written by parents. The vast majority are from America and I am always struck by three things. The first probably goes without saying but I will say it anyway: we're all going through similar things. It blows my mind that I can have a crap day and get on the computer and most of the time there is a mum or dad on the other side of the world who has just blogged about the very things that have either plagued my day, or which are consuming my thoughts. I truly believe that without the internet- and particularly without Facebook, I would not cope as well as I do.
The second thing that strikes me reading other people's blogs is how much they have to fight their insurance companies to pay for vital services and medications. In Australia we complain about our health system but we are so incredibly blessed to have government provided health care. Yes, there are long waiting lists for non-urgent surgery (like my son's tonsillectomy), but when any of us are sick we can see a doctor for free. The Bubbly One has a health care card so most of his prescription medications only cost $5.60 (but we were paying $68 for melatonin!) and he gets free dental care at a disability specific dental hospital.
In terms of funding for services, in Australia children with autism are funded $12 000 from diagnosis until they turn seven (two allocations of $6 000p/a), so for the next year and a half we are pretty much set, though I watch the statements like a hawk to make sure that we don't run out. The Bubbly One is having weekly OT and fortnightly speech at present and his therapists charge his funding body for services. All I have to do is sign the forms and check the statements which are emailed to me monthly. We are very fortunate with my son's therapists. Both are very experienced, brilliant with The Bubbly One and work for themselves as part of consortiums. Their fees are very reasonable compared to larger centres, they never charge us if he is sick and misses a session, and they always give him more time than they charge for. His OT also gives me a massive discount for any equipment that we purchase from her company (usually close to cost price) and often gives him freebies. This is a rare situation and his therapists have become friends as much as supporters of our son and family.
Once The Bubbly One turns seven we get a handful of sessions (5?) part-funded by Medicare each year and our private health insurance covers 65% of sessions until we've reached $400 each for speech and OT (but for this level of cover we pay $150 per fortnight or get taxed higher for not having it). We can also get a 18-20 free sessions in total until he turns 15 (or 13, I can't recall). We could put The Bubbly One on the waiting list for government provided therapy services for when he is seven or older, but to be honest I'm not really impressed with what I've seen from them when I worked in the disability world, plus they don't offer OT with sensory integration which is what my son needs and will do for quite some time. I also get paid a very small allowance from the government that is not means tested, and it will be enough to pay for one therapy each fortnight plus a little extra, which will almost cover fuel to get there. So, even when his funding ceases we will manage, otherwise I'll be returning to the workforce!
We are also lucky to have gotten a respite package this year, something many families miss out on and desperately need. I haven't seen the dollar figures as it hasn't started yet but it will be enough to give us a break and to give The Bubbly One somewhere fun to go without us tagging along! I am stunned at the amount of parents who don't apply for respite who would be eligible, though I am in the enviable position of having worked with the people who will be providing my son's service so it's probably easier for me to trust that he'll be in good hands.
Our government is in the process of enacting a national disability insurance scheme which will provide total coverage for people with disabilities that they are either born with or acquire at any stage of their life. I am both excited and cynical about this. It will happen eventually but it's being used as a political football at the moment and it will still be years before it is fully operational. This will be partially funded by a levy on most people's taxable income and a lot of people in the community aren't happy about it, though they do support the idea of a national disability insurance scheme. No one really knows yet how any of this will work and cynical me is waiting for the proliferation of new services to emerge out there to "help" families manage their services (for a fee of course!).
So that's where we're at in a nutshell with a five year old at the severe end of the spectrum. There are also some payments from the government that we've applied for that not everyone knows about. We are able to claim some money towards the cost of incontinence items until he is toilet trained, we have been successful in getting some funding for play equipment for our home through our early intervention service (we claimed a year ago and it's being installed next week), and I was successful in claiming a one off crisis payment last year after I left work to assist us financially. We have a great welfare system here- many say it's too generous and perhaps it is, but anything we receive goes towards our son's care and I defy anyone to say that he doesn't deserve all of the support we can get for him.
Finally, IEP's. I am amazed and saddened at how adversarial this process is for so many and clearly in the USA it is entrenched in some pretty rigid legislation in order to ensure that it is used correctly and that each child's rights are upheld. I read blogs where people talk about taking their lawyer into their child's IEP meeting and I think about my son's first one at school this year, where his teacher and I (just us!) sat down over coffee and went through the process together. We laughed a lot. It was relaxed and informal and we got everything into that plan that we wanted. His OT and speech goals and plans were already being implemented and were included. Everyone was on the same page and I had (and have) final say on his goals and how they will be worked towards (until such time as he's able to actively participate in the process). It's a legally binding document, yet if it needs changing I have a chat with his teacher, or she speaks with me and we change it, without a massive production.
Perhaps this is so simple because The Bubbly One goes to a special school for kids with severe disabilities. Inclusion is not a goal for us and in all likelihood won't be in the foreseeable future. He's not fighting for limited resources in a mainstream school, but enjoys an individually tailored education in a place that is set up to help him to learn in the ways that he does best- and he's thriving there. I went into his meeting prepared to push for certain things, only to find that they were already in place because that's just what they do- because it's right and the best way to support him in discovering and meeting his potential. Perhaps this will change in the future and I'll have to unleash my inner Mama Bear (she has come out in the past), but for now school is the easy part for us.
I'm sure that there are parents in Australia with IEP horror stories (we would have had at his first preschool had I not withdrawn him), but I've sat on both sides of the IEP/IP table- both as a parent and as a service provider and I can count on one hand the number of times that a meeting has gotten heated, and to be brutally honest, I think it was more of a personality clash of the people involved and nothing to do with the person whose interest everyone was supposed to be looking out for. Maybe I haven't experienced a "real" IEP, and maybe I'm not a real "warrior" mum because I haven't needed to kick and scream for my child's rights a whole lot as yet, but I'm happy, the school are happy and most importantly my boy is happy.
P.S. If you're an Aussie and want more info on any of the funding sources I've touched on above feel free to inbox me on Facebook. Some of these I only found out about because I know people in the industry who've heard through the grapevine that something's available. Also, what I've described above is just what we access for our five year old in our circumstances and I've kept it very brief so as not to put people to sleep! Older kids and adults are entitled to some other stuff also which I may be able to help you out with. Feel free to ask! : )
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