Rollercoaster Parenting

Here is a story I have to tell.

One of the CPecialparents, let’s call her Viv, attended the Regional Ministerial Community Forum in Queensland last Monday, and here is her story.

There was an unexpectedly large number of people with questions for Lindy Nelson-Carr (the Minister for Disability Services among other things) on the subject of disability, so they pulled the Minister out of the second part of the forum and set up short one-on-one meetings with us parents/interested parties, and her Senior Policy Advisor was also there (thankfully - overall he seemed much more aware of the issues, and more sympathetic, than the minister).

Viv told the Minister about her young daughter with CP, let’s call her Pippa, and came to the subject of cars.

She asked specifically why there is no funding available for vehicles and modifications to make them wheelchair accessible. When presented with the facts and figures, the Minister seemed surprised at the cost. But she was quite clear. She said there will never be funding for cars as such that it just won't happen, end of story.

Ok. Fair enough. But what about helping families with the cost of the conversion, and at least making a car and or the conversion tax deductible? Says Viv:

“When pushed on this, the Minister said she supposed it was a better option for the government to encourage the use of taxi services, and told me (and I quote!) "In your case for example this might mean you could put your daughter in a cab, then drive in your own car to meet her at the other end, or whatever. I was flabbergasted. I told her I didn't think that was a very real option and got a glib smile in return.”

Excuse me?

Who in their right mind would suggest you pop your 5 year old in a taxi to send her to the shops, where the rest of the family meets them? There is no way I’d do that to my kids – we are a family, and we travel as a family. And apart from this fundamental issue, what about the madness of an extra car (and its emissions contribution to environmental pollution) on the road? Does she have any idea how long people wait on average for a wheelchair accessible taxi? And what about he safety issues of sending a young potentially vulnerable child in a cab on their own?

Is she supposed to do this every time the family goes out? To the shops? The library? The Dentist? Visiting grandma? Big sister’s Saturday morning soccer match?

As another CPecialparent so eloquently put it:

“Why not guesstimate the cost of Pippa’s taxi to/from school, therapy/med appointments, swimming, shopping, "accessing the community" etc, multiply it over 15 years and see if this economically-challenged minister thinks it would be cheaper to do this than make an accessible van 100% tax deductible. Honestly, who votes these people in? She'll probably head up treasury in the next cabinet reshuffle!”

Honestly.

This sort of thinking is the hardest part of having a child with a disability.

Thankfully, the Minister's Senior Policy Advisor was quite interested in the idea of full tax deductions on equipment etc, said he would investigate it further himself.

Yesterday, at another Ministerial Community Forum (this time in NSW), our Prime Minister faced another mother of a child with a disability, challenging the current lack of services. As she put it “we take care of him now. But who will look after my son when I’m dead?”

Mr Rudd acknowledged that he has been confronted with these sorts of questions from carers again and again, and he conceded that some work needs to be done.

Well, he gave us an Apology. He gave us his signature on the Kyoto Protocol. He gave us a female Deputy Prime Minister and just recently announced that our next Governor General will be a woman.

Let’s keep pushing him for some reform in disability services.

Including tax deductibility of vehicle conversions…