Not paying for it

We moved to Australia when Miss Z was no larger than a lentil in my tummy. She was born here in Brisbane and has only left Australia once – when she did an international tour to visit her overseas relatives at 3 months old (and before we were aware of any “problems”).

It wasn’t until later that the issues surrounding Miss Z’s visa status became more of an issue. We weren’t Australian citizens and we weren’t permanent residents, so therefore we couldn’t access any government disability funding.

At first, this wasn’t such a big deal. We’d managed to get Miss Z some state-funded therapy and we declared that we were happy to self-fund anything else she needed. This was easy when she was a baby and didn’t require very much. It became a greater challenge when she outgrew her baby stroller and we had to buy a supportive special needs stroller – which cost $7,000. A challenge, but not impossible – especially with the help of a friend who organised a Christmas fundraiser for us.

Miss Z’s therapists were less convinced that self-funding was going to be a good option over the longer term. Miss Z will need A LOT of equipment as she gets bigger, and none of it comes cheap.

Deciding that our dreams of international travel with a young children was no longer possible due to Miss Z’s medical needs, QB and I decided that we wanted to stay in Australia to raise the girls and started the process of applying for permanent residency. Residency for three of us wasn’t an issue, but for Miss Z it was another story.

I don’t want to go into the details of the whole application process, which was generally long, tedious and stressful. I won’t share my opinions of Australia’s immigration policies in general or towards people with disabilities in particular, because I didn’t create this blog to debate politics. I will just say that we went through 18 months of very high levels of stress and uncertainty – not to mention having to demonstrate the value of our daughter’s life – but in the end, we were successful. Our family are now permanent residents of Australia. Hurrah!

And with permanent residency, comes access to funding – for equipment and therapy – for Miss Z.

It has been a serious learning curve as I’ve never applied for benefits of any kind before. Six months in, I think I’m finally getting a grip on it…

However, yesterday I took possession of our first piece of equipment purchased through one of the government funding bodies: a gravity chair. Despite conjuring up visions of something from the space station, a gravity chair is a specially designed foam armchair. We haven’t had proper seating for Miss Z, which means she spends most of her time at home on the floor or a beanbag – or occasionally her stroller (although she really doesn’t like sitting in it for long). Her gravity chair will let her sit up and interact with the rest of us as well as watch cartoons and play on her iPad while upright.

We trialled a few different chairs and the gravity chair was by far her favourite. It is also lightweight, which means we can move it around the house so she can sit in different rooms.

Still, it felt strange yesterday when the delivery man turned over the giant box and departed without also handing me an invoice. I’m just not used to having our equipment funded. In fact, it makes me feel slightly guilty. I almost feel like I need to defend our use of funding for Miss Z’s equipment. I suppose it is one of those contradictions that come with having a disabled child – as much as you want to be able to provide your child with all the necessities in life, the cost of wheelchairs, hoists, specialised seating, home modifications, bath chairs, adjustable beds, ramps, accessible vehicles, communication devices and everything else Miss Z needs makes it pretty much impossible to afford everything yourself – no matter what your family’s income.

And I’m learning how this equipment really makes a big difference to Miss Z’s life. Our raised bathtub (currently on loan to us), has enabled us to continue to safely bathe Miss Z – hands down her favourite activity of the day. Her electric bed is a huge help with everything from managing her nighttime reflux to saving my back when I lift her in and out of bed. It also means that I can lower the bed and sit beside her to read bedtime stories.  None of the equipment is superfilous – it all contributes to Miss Z’s quality of life.

Using Miss Z’s funding to make sure she has this equipment is one of my new jobs, so I guess it is something I need to get comfortable with… even if I may never be as comfortable as Miss Z in her gravity chair in front of Doc McStuffins!

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