20 years ago I worked with children with disabilities in child care. I cared for them, played with them and rejoiced in any advances they made no matter how big or small. I spent time with their parents and carers and I shared their concerns about their child’s future and what it held for them.
18 years ago I worked with adults with a severe disability who had recently left a large institution after it closed. I cared for them, went out for coffee and walks with them and tried my hardest to support them to adjust to life in our crazy, complicated world, a world which often made little sense to them at all. During this time I learnt so much about human dignity, about difference, and about the need for all of us to be more accepting of those who live with profound disability.
15 years ago I worked for an advocacy organisation for people with an intellectual disability. It was a great job, one of the best I’ve had, but again, I saw first-hand the immense stress placed on individuals and families as they fought to get the right support so that their loved one could lead a meaningful life. Some won that fight while others didn’t.
Fast forward to yesterday.
Sitting at the COAG table I had the chance as Chief Minister of the ACT to sign up to be at the forefront of the National Disability Insurance Scheme.
This was an opportunity that I felt could not be left to slip by. For the first time in our country’s history we had a Prime Minister who was prepared to step up and say that the current system was unfair and needed reform. She was also prepared to put money on the table to support the move to a new, fairer and simpler system where the important element of universal entitlement was recognised. No more fights by families to be more needy than others.
Whilst leaders from other jurisdictions complained and delayed, I sat there waiting to sign up. I understood that this entailed some amount of risk to our own budget and that there was an element of the “unknown” to it. But to have let this opportunity pass us by would have been a terrible outcome for the ACT and for the thousands of people and their families who need increased access to care and support.
While I was listening to the Premiers object yesterday, my own mind slipped back to my dear friend Charles, who I had the privilege of knowing for 10 years before he died. Charles was a man with cerebral palsy who lived in Ainslie with his beloved mum for most of his life – much of his adult life was spent in a bed set up in the lounge room after he became too large for his mother to move around.
When I first met Charles he was in his late 40′s and his mother and extended family had provided all of Charles care in his earlier years. However, as his mother aged it was clear that Charles needed more support and that his mother could not provide that care on her own. What that meant was that Charles didn’t get out much at all. In fact, his time with me was about the only time he did get out. I spent 8 hours a week with Charles where we would pack in trips to coffee shops, car showrooms, libraries – anywhere he wanted to go – but it was only 8 hours per week. If Charles had had his way he would have been out everyday all day but the funding to support him wasn’t there.
There was always a sadness for both of us as I returned Charles to his home and assisted him to get back into bed, knowing that he probably wouldn’t leave that bed for another 4 days until I returned.
In a very simple way that is why the ACT signed up to the NDIS – because it should have been done years ago, because the need is so great and because it was the right thing to do.
To my dear friend Charles, to Jackson, to Stephen, to Paul and to the other people with a disability who taught me much more than I could have ever taught them – thank you. I truly hope this is the first step towards a much better, fairer and responsive approach to people living with a disability in the ACT.