Monday, April 12, 2010

Mad as Hell: It's Time For Change

Putting on my serious cap for a bit. Most of my readers realise I have a beautiful son with Asperger Syndrome. Boy 1, now twelve years of age. A little back I documented the bare bones of our journey so far. Have a read.

The Road Less Travelled: The Tale of a Boy and his Journey into Autismness I , 2 , 3 .

Now, as you read of those years of therapy and intervention consider how much, or in our case how little, we have accessed through the public system. I would estimate it at around 10%, and I am being generous there. We are lucky. My amazing mother, Wise Woman, has funded most of the help needed for my son. I would guess, to this point, it has cost her around the $100,000 mark. Well beyond most people's financial reach. We are not doing anything fancy, we are not travelling countries, trying extreme or expensive therapies. We are merely doing the basics trying to help our child.

Costs breakdown to something like this:
  • Speech therapy: $100 per hour. In younger years weekly, older monthly.
  • Occupational therapy: $100 per hour. In younger years weekly, older monthly. Once programme in place can be managed at home or in school with some monitoring by OT quarterly
  • Psychologist: $200 per hour. Frequency depends on anxiety and behavioural issues at the time. Can be weekly for months when things bad. THIS does not include psych sessions for sibling. Refund of half from Medicare if under enhanced mental health care plan.
  • Paediatrician: $220 per session. Varies, more often when younger.
  • Teacher Aide: up to Grade 4 five days a week. Three to four hours a week funded by education department. TWENTY-ONE hours funded by family. Approx $22,000 a year. Varies on aide experience, hours funded, etc.
This is the bare bones, there are so many other bits and pieces, incidentals, medical expences. And so little help. The public waiting lists are abysmal. The funding even more so. And as parents of a special child you are too damn exhausted to fight the system for funding. I fight ALL the time just for his basic rights, I have no energy or reserves left to fight for more help.
Thus, it was with interest I read my friend Fe's post, which lead me to another blog, and then onto a new site.

This is a site dedicated to instigating change. It is desperately needed. Even if you don't have a child, family member or friend affected please sign. It can make the difference between having quality of life, or not. We should be ashamed that the so-called lucky country is not for so many.

My words are not as eloquent as usual, they are stilted and cold, I cannot seem to convey the emotion in this. I am tired. We return to school tomorrow and my beautiful son is having anxiety attacks, and his stress levels are off the scale. All my emotional reserves are being poured into trying to help him. And so a part of what I am asking here is for you to be strong for me. Read, sign the pledge. One voice is so small, but many can move mountains.


    Toni said...

    Hi Fellow-Blogger -- there is an ideas section on the Liberal Party website, and one idea is for funding to be increased for parents of kids with autism, and there are a lot of voices for AS as well.
    I dont know how much good it's going to do, but raising public awareness is important if anything is ever to change.
    Good luck with school.

    Alex said...

    Change is definitely needed with the whole system. Parents of kids with special needs should receive all the help there is, free of charge.

    Ratz said...

    I am with you in this... Every little voice counts.

    Jen said...

    I have taken the pledge and will blog about it tomorrow. I hope that school going back is ok tomorrow, I will be thinking of you both. We had many hiccups today (K started back today) and an incredibly emotional boy tonight. Im buckled into the rollercoaster once more *sigh*.

    DarNonymous said...

    Well done. Will post this up for you at my place soon.

    Epskee said...

    Absolutely! It's ridiculous the money we spend on crap when truly deserving things go unfunded, or not funded enough. For example, my partner's MS drug is $34,000 per year. That doesnt include all the physio, natural therapies, regular testing and associated bits-n-pieces. Good health is the #1 thing we need. Its about time something was done. Its not just MS or Aspergers, its needed across the board.

    Marita said...

    New to your blog, found you from the Aussie Mummy Bloggers site.

    We are just dipping our toes into looking at ABA for my oldest (6, almost 7yo) who has aspergers and severe anxiety. It was terrifying to look at the costs.

    We are lucky to get OT through our local council health service so it is free. But speech, psych, paed are all costing big $'s.

    My youngest (5yo) with high functioning autism is currently still in the early intervention program but I shudder to think what it will be like next year when both my girls are in mainstream school. Suddenly all the costs that have been absorbed for youngest by the early intervention will be up to me as well. :(