January & February 2007 - Search for support

Armed this “very likely” CHARGE Syndrome diagnosis we started looked for more organised support and found a few things that we wished that we had organised earlier. Did you know that if you look after someone who is disabled or aged that you can get a “Carers Allowance” and possibly a “Carers Payment” from Centrelink (Australian Government welfare). This is turn opens up all sorts of possibilities for discounts on services because you now classify as a concession card holder. The financial benefits that we have found include:

• Carers Allowance
• Carers Payment
• Family Tax benefit changes
• Council Rates reduction
• Land tax exemption
• Aurora bill (Electricity) reduction

And that is just the financial side. There are also services such as:

• Early Learning Centre for disabled children
• Disabled Parking
• A Toy Library for special needs children
• Calvary health care children’s therapy services. This place offers integrated therapies for disabled children (eg speech pathologist, physiotherapy, and occupational therapy)
• All of this and I have still not mentioned the public health service provided by the Royal Hobart Hospital. Even though administrative mistakes are occasionally made, we are very grateful for the free expert services and high level of care that we get through the hospital.

Now we are looking for ways to spend this money to help our boy.

• We are in the fortunate position that it is not necessary for both of us parents to work to make a living and we are in the even more fortunate position that we can both work part time. So now Annie works two days a week and I work three to allow us to spend more time with all three of our kids. Losing a full time salary is of course a big financial hit but we were always planning on doing this for when our kids were little and so it is not a big deal for us.
• So far the only thing that we have spent money on (apart form medical expenses) for Raphael is toys; specifically toys that make noise. Have I mentioned that I hate toys that make noise? Well this is a sacrifice that I am going to have to make. We have a reasonably quiet house otherwise and with his hearing loss we thought it would be good to get some noisy toys so he could get some auditory stimulation apart from us just talking and singing.
• We are thinking about hiring some older kids who sign Auslan to play with him for an hour a day or so although we are not really sure how to go about doing this yet. Not to mention that it feels a bit odd to pay someone to be my son's friend.