Stopped Looking

There are those moments when something happens, and suddenly you see an issue with new understanding and clarity. I had one of those last week – and I thought I’d share it with you. To me, it perfectly illustrates how our system is “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice” as the Productivity Commission’s Draft Report into Disability Care and Support so succinctly states.

I was inquiring about a particular type of wheelchair, one that comes up to full standing position. This would have some social and therapeutical benefits (don’t worry, I won’t bother you with all the details), so I asked my OT to imagine for a moment that money was not an issue – could she tell me if my daughter would therapeutically benefit from a chair like that.

Her response was practical giving me some pros and cons of such a chair for someone like BooBoo. She explained that she had no knowledge of a suitable support seating system that works in both sitting and standing position. Fair enough.

But then she wrote there may well be something suitable out there nowadays. She wouldn’t know about it, though, because:

“I suppose I have (…) stopped looking at them as Enable won't fund them”.

This hit me square in the chest and left me breathless.

Enable NSW is the government department that manages our state’s disability equipment scheme. It doesn’t have a great reputation amongst most parents I know because many items are not funded, and many expensive items (especially stuff made for people with complex needs, and new, innovative stuff). Most of its funding decisons seem to be based on what their budgets hold rather than what people need.

You may think that’s fair enough. But just know that this programme is chronically under-funded, and funding is NOT based on an assessment of how many people are out there in the community needing things, but on the political goodwill of our elected representatives.

But think about it for a minute. I know a young boy who needed a proper feeding chair, as he would choke and asphyxiate almost every time he was fed (sitting in a car seat). Food would get stuck in his lungs, and he would end up in hospital on a regular bases. A feeding chair, which would hold him in a better position for swallowing was deemed unnecessary! Sure, a feeding chair is expensive. Sure, you can do without. But sure, you will have to pay for the surgery and hospital admissions then. You don’t have to be a maths genius to work out what is cheaper in the long run… But, hospital admissions come from a different budget, so never mind…

Standing is very important for bone growth. We have to monitor BooBoo (and Beaver’s) hips regularly to see that they are not displaced. You see, the spasticity can pull the hips out of their joints, and especially as the child grows, standing is important to let the hip bones grow in the correct position. So there is one major reason for a wheelchair that goes up to standing.

Yes, we have walkers (although not a standing frame – and I’m not exactly dying to add another piece of equipment to our household furniture). But kids need to be taken out of the chair and placed in to the walker, which can be a bit of a job (especially as they get older and heavier). I do this whenever I can, but not nearly enough (lazy me). And at school they are not allowed to put BooBoo in her Hart Walker – it’s bad for the staff’s back, apparently (eh, and mine!?). So BooBoo spends a lot of time in her wheelchair. Surely it makes sense to keep her there and bring her up with one push of a button? Or am I not thinking straight here?

In any case, I have told my OT I want one of those chairs on the list we look at. It may not be for her, but that needs to be a therapeutic decision, not a financial one… If a chair like that benefits her, and will beg, borrow and steal to get the money...

Anyway, back to that line of enlightenment.

My OT (and she is fabulous let’s get that straight here) has stopped looking. Because even if it would benefit her clients, she knows the government wont fund it. And therefore the kids won’t get it (except maybe the rich ones who can buy their own, or the lucky ones who can find a charity that will buy it for them).

This makes me wonder.

What else is there out there for our children that we don’t even know about?

What else is there they could benefit from that even our children’s therapists don’t know about because the government won’t fund it?

Isn’t it a very sad sign when professional curiosity and development) gets killed off by a lack of funding?

We need an urgent reform of our disability services.

We need proper needs-based funding.

We need some long-term thinking.

And most importantly of all, we need the decision making power given back to the people with disability and their families/carers in the case of children.

We may not be able to expect long term thinking from government departments. But we can do that, we can plan and save and work out short-term costs versus long-term benefits. Because we are parents planning our children’s future, not bureaucratic departments balancing budgets.

We know these “costs” are actually investments.

We need an NDIS!