Thursday, 25 June 2009

Gina, at last your questions answered!

G'day Gina and all,

I hadn't forgotten you. As it's while ago this is what you said/asked in response to my post

Gina Wilson-Burns said...

I have been thinking about this one a lot, and coming back and re-reading it often. The more I think about it the more it makes sense.

As a mum of a 5yo boy with profound, multiple disabilities I am becoming more and more peeved at the Carer term. I have yet to send in my resignation as a carer to Mr Rudd as, at present, the $50 a fortnight does come in handy - goes some way to offsetting the $68K p.a. shortfall we have as a result of our child having a significant disability.

But, and this is where I would like to hear your opinion... What if our son (and every other person who 'qualifies their carer' for carer payments or carer allowances was actually provided with a "disability allowance" or "disability payment" until they turned 18 and then were privy to the disability support pension if they qualified or needed. As his parents we would be responsible for using this money appropriately - would it need to be more formal - I don't want to write off my parental rights and responsibilities - or be denied them just because my child has a disability - so this is the area I get most confused.

Get rid of the Carer Allowance and carer payment entirely. That way there is no "carers" just people who care or people paid to care. There are plenty of people happy to take the "carer" payments but would find taking a "disability payment" slightly confronting (this is good i think).

At this stage I do feel i need to provide a voice for my son but I really really really abhor the term carer - I am just a mum.

What I think is quite simple Gina and is probably where you are basically at. We are all people. Children are looked after, provided for and decisions made for by their parents until they reach the age of 18. Adults look after themselves, provide for themselves and make decisions for themselves. Regardless of race, gender or ability this is how it is for all people.

But as we know you get turned into a carer cos your child has a disability and I turn into a person with a carer cos I have a disability. (I don't have a carer but the assumption is there).

A "Carer" is a person who assists, looks after or cares for someone they are related to or "care" about for no money or a small pension. A "Support Worker" is a person who is paid a wage to assist a child or adult living with disability. We should have parents, spouses, relatives and friends around us as is normal in life and Support Workers to assist us.

Parents who have a child with a disability should get a Disability Allowance (as you said) to assist with anything that levels the playing field for their child and themselves. It should be assessed and automatic and never dependent on funding mingyness. Any parent of a child living with disability must have the same (no more, no less) responsibility for that child as for a child not living with disability. They must be allowed to be a parent and not labeled as anything else

When the child reaches the age of 18 that Disability Allowance is passed into their hands for them to manage and make their owns decisions as adults. This new adult may also then be eligible for a Living Support Allowance which provides for ordinary living needs, food, shelter, clothing etc should they be unable to earn a living for themselves.

IF that adult person with a disability cannot manage their own affairs, financial, personal or otherwise then guardianship must always be applied for and legally granted if needed. NO ONE should be allowed to have informal control or decision making powers over any other adult because they are related by blood or love (just because that adult needs different assistance than usual people). NO ONE!!!

Also the Allowance for the costs of disability must be over and above Living Support and never means tested. Ordinary living support is to be provided and paid for by the parents of their children with a disability as is the case with all children.

We should never be forced into dependency on others as adults. I mean dependency on an unpaid 'carer'.

Everyone in this world is interdependent on other people but people living with disability are forced to be DEPENDENT on others for their whole lives. Parents are forced to care for their adult children living with disability. This must not continue.

It's simple as we know. People living with disability must be afforded the same means and rights as all people.

Hope that clears up what I mean at least Gina. I have been reading quite a few blogs written by parents of children living with disability lately and I must say I am heartened by the fight in you all. The fight in you for the RIGHTS of your children to live an ordinary life. Go mums and dads - more power to you. Use it right for all our sakes.



  1. So glad to see you back and thank you for sharing your thoughts and helping me understand how this whole issued is percieved by people other than me. I am totally heartened I am not on my own in this and absolutely grateful to the ole world wide web out there giving me such great insights - particularly via blogs. It is a pleasure having you in our corner and hope we can do ok in your corner too.
    Gina (and Mac)

  2. How lovely to see your reply straight away Gina. I am so glad we are here for each other. It sure makes life easier hey!

    I reckon you're doing a good job. You question things and that makes you way ahead of the ordinary pack.

    G'day Mac. You and your mum might like to check out this website so that you can manage your own lives now and you in the future when you leave home mate!!