When Oscar was little we, as a family, were pushed to breaking point. We couldn’t afford all the therapies he needed to try and minimise the impact of his dodgy chromosome and cerebral palsy. At that time we were not allowed to access free services through The Spastic Centre because cerebral palsy was not his primary diagnosis. Don’t get angry at The Spastic Centre for that cold blunt reality, get angry that such a system was necessary due to a lack of funds.
At the time, I remember thinking that having a child with a disability totally pushes you to the periphery of society – socially, economically and physically. I thought then – as I do now – how grossly unfair that reality was.
We hadn’t done anything ‘wrong’, we’d just had a baby who had the gross misfortune to have an overly ambitious chromosome four. What seemed innocuous to us – this little bit of repeated material on one arm of chrom4 was going to so dramatically impact our son’s life, our lives, his siblings’ lives, his family’s life, the life of those around him that if I had had any true idea of the ramifications I may have run for the hills.
And we have a child who is mobile, who can feed himself, who can toilet himself and has no behavioural issues! But he does have a moderate intellectual disability. Sometimes that just rolls off the tongue like telling someone I have a brain that doesn’t work well sometimes. Then there are days I want to stamp my feet, hit walls, scream until my throat bleeds for just how bloody cruel it is.
If the reality of having a child with a disability is not jarring enough, not enough of a daily worry/drama/fight/negotiation/assessment/discussion/review then say hello to a system that for its entire life has just accepted the completely unacceptable – that these people have parents and or family who will look after them forever and be able to pay for whatever their additional needs require.
That the phrase ‘cradle to grave caring’ even exists should cause outrage.
We have always said that we want Oscar to have the same experiences, the same opportunities as his peers. That sure, some of those events might be an absolute disaster or he might not enjoy them but guess what, the same result could occur for a completely able-bodied ‘normal’ child. Most people totally get this. Unfortunately “most people” don’t seem to be in charge of the funding pool that determines the money needed to ensure those among us with physical or intellectual disability and their carers have the support structures in place to ensure this happens.
We have only just started accessing free services to help Oscar because we simply were not coping financially having to pay for therapy services as well as his various specialists. We were on a waiting list for about 9 months for speech therapy and longer for physiotherapy. We’re now on a waiting list to trial electronic speech devices for Oscar but that could take a year.
Apparently, when someone has a speech disability, it’s completely acceptable to be on a waiting list for a year to start trialling devices that could help them communicate.
I’ve kind of just fallen into an exhausted resignation to this reality and look, I know I’m idealistic but for as long as I can remember, from childhood, I had a sense of social justice and that no-one should be left behind. And yet here I sit in a society with staggering statistics* showing how just one part of the population are being left behind for no other reason that they had to be the statistic:
- There are 1,145,000 people with a serious disability in Australia – that is the population of Adelaide
- Half a million people are the primary carers of a person with a disability – that is the population of Tasmania
- In 2003 (so the figure would only have grown) 2.5 million people provided informal care to someone because of a disability or old age – that is the population of Adelaide and Perth