Today I had a little dance in the kitchen. After a madly busy day, I finally got round to opening the mail while setting the dinner table for a quick fish and chips. I never though I would be so exited about a letter from DADHC (the NSW government Department of Ageing, Disability and Health Care).
This year, they are granting families with a disabled child a one off Family Assistance grant of $2,000 to buy something that would significantly improve the life of their family, and ideally something that enhances the social life of the disabled child, and the interaction between them and their non-disabled siblings and friends. So two weeks ago, I submitted an application for solar heating to be installed in the pool of our new house. I didn't hold my breath, but with two kids (and thus eligible for $4,000) I figured I might as well have a stab at it.
There is no doubt that a child with special needs comes with a higher price-tag. So far, we have bought our equipment (such as a manual wheelchair, a toilet rail, handrails along the stairs inside and outside the house etc.) ourself, often with help from our children's very generous grandparents. We have bought a bigger car, spend school fees on an independent school we felt could meet our son's needs better, and money on special remedial lessons. We have now bought a more accessible house which we are renovating to be wheelchair accessible. A lot of work needs to be done to it – a lower floor needs to be raised, doors are being widened and or built flush with the floor, the pool area is to be re-surfaced to be softer and accessible, the list goes on and on, and that is on top of the normal reno's the place needs – the only reason we could afford the house was its poor state. It goes without saying that we could not even have contemplated this move with out some substantial help from our parents – to whom I will be forever in debt, both financial and emotional.
I receive Carer Allowance (which is about $94.00 a fortnight) for each of the children. While this is nice, this in no way matches with the financial loss of not being able to go to work. Still, it's gratefully received, as is the odd annual bonus like we've just had. We've also had a bathroom modified to be more accessible through the Home Modifications System, and contributed towards this renovation. And we have received services from The Spastic Centre for free (although not all) and have supplemented the minimal services we receive from them with private therapies. All in all, we try to manage the extra costs, constantly aware that there are people out there trying to get by on a much smaller income and dealing with much higher needs.
It's very hard to have to "ask" friends and family, and society for "help". This is one question every parent of a child with a disability struggles with – we've been discussing this very topic in the last two three weeks on the CPeicalparents. Most people would say that parents of a child with a disability have a right to help and services. Yet we all end up feeling that, as one parent put it.
"She's MY daughter, I brought her into this world and meeting her needs is MY responsibility. "
Yet, the reality is that most of us can simply not afford the total cost of our children's extra needs. We feel we shouldn’t ask, because there are always people worse off than us, especially in a global context. We might be asking PADP for a feeding chair our child desperately needs, but if a child was born in a Third World country, they'd be lucky to have food. Then again, other times we feel unsure and shy about asking for help from the government or a charity. Maybe we feel ashamed. As one mum put it, "we do become some of societies most vulnerable and it sucks."
Sometimes I wonder if we feel we shouldn't ask because we feel in some way responsible for our children's disability. One mum said:
"Was I supposed to have set myself up for this first? Did I miss the government disclaimer saying: one in 200 of you will have a disabled child whose needs you will not be able to meet, and please note, you will receive negligible assistance, have children at your own risk."
But, to cut a long reflection short, with all those extra costs of the new house and its renovations, I thought I'd set my pride aside and apply for a contribution towards the solar heating of the pool. My OT supported the application, it's not as crazy as it seems. Kids with CP cannot swim in cold water as it makes their spasticity worse. At the same time, swimming is excellent therapy, and one recreational activity they can do with their siblings and peers on a reasonable even level. And lucky lucky me, this evening the letter came to tell me that my application had been approved, and a one-off payment of $4,000 is on its way to me to install the system. Yippee! I will be calling the solar heating guys first thing on Monday morning!