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2nd April 2008

ACT Government's fine words on disability support have to be backed up

This article by Sally Richards was published in The Canberra Times on 18th March 2005.

"In the ACT one in every six people identify as having a disability. One in seven provide unpaid care to family members, friends or neighbours." - (From Future Directions: A Framework for the ACT 2004-2008) W We are all only temporarily abled. Most of us will, through stroke, accident, ageing or illness become disabled ourselves or intimately connected with someone who is. The stories of James McIntyre (CT, March 9, p 2) and David Lazarus (CT, March 3, p4) are reminders of that.

Someone asked me recently what people with a disability, their families and carers expect from the ACT Government. It's an interesting question. It's pretty clear to me what people who are already connected to disability expect, but what do the non- disabled Canberra community expect the Government to do for people with disabilities and their families?

I think that most Canberrans, whether connected to someone with a disability or not, expect that Government will take care of the most vulnerable and disadvantaged people in our society. By this, I mean those who live on the fringes of society and have lives of social, economic and emotional poverty and who, without intervention, may not have all of their basic needs met. Some people with a disability are living like this, and many of them did not receive funding in the 2004 round of Individual Support Packages. An ISP is the only vehicle for receiving recurrent funding for people with a disability in the ACT and so, if you miss out, you are left in situations like McIntyre and Lazarus.

Although many people with a disability have a reasonable quality of life at the moment, a time will come when this is no longer true; when the people who care for and support them move away or die. In my experience, if non-disabled Canberrans are asked about their expectations of Government in this situation, they say that they assume that Government will take care of them.

But this is not so. Non-disabled Canberrans don't realise the constant struggle people with a disability and their families have to access almost any service. They don't realise that people with a disability, once they are adults, are likely to have isolated lives with little hope of having somewhere to live, some meaningful employment or funding for support. When non-disabled Canberrans are informed of the real situation they are invariably uncomprehending, shocked and bewildered.

As a mother of a son with a profound intellectual disability, what I expect from Government is that he has the same rights as any other human; I expect him to have the funding support that will allow him to eat when he is hungry, drink when he is thirsty, wash when he is dirty. I expect him to have decent health care, some work, leisure and respect. I expect him to be included in the community. I expect Government to provide a range of accommodation options. I do not expect my son to live at home until I am in my 60s, 70s or 80s; until I am too elderly and ill to care for him or I die. I expect that I should not reach crisis point or refuse to have my son live at home before I receive support.

For people with a disability, money can make the difference between a meagre life and a good life. Money equals support, and the dollars are simply not there. Let me rephrase: the dollars are there but the ACT Government has other priorities. The situation in the ACT is dire. There are not enough dollars, therapy services, after- school or holiday programs, accommodation options or job and recreation opportunities. There is not enough support, respite or inclusion.

I believe that if government has policies such as "Building our Community, The Canberra Social Plan and Future Directions: A Framework for the ACT 2004-2008" that espouse inclusion, self-determination, strengthening families and responding to needs, then Government has a responsibility to take action to make what happens in the real world reflect those policies. Unless, of course, they are empty words, in which case people will lose the little faith they have in the Government's commitment to improving the lives of people with a disability. I expect Government to honour the words in these documents and I expect them to honour their pre-election commitments.

We live in an affluent society, the "lucky country", and we can afford to be financially more generous. I believe that funding is important to support people with a disability and their families. Until the dominant perception of people with a disability changes then funding is the only way for them to have a life of quality; a rich and interesting life.

I imagine that my expectations are not different from most other families of people with a disability. I cannot speak for Canberrans who are not part of or connected to the disability community but I would like to know.

Sally Richards is the mother of an 18-year-old son with a disability.

"We need a communality by means of which people at risk of social rejection and devaluation are included and embedded in communal, supportive, primary and secondary social groups and networks."

--Wolfensberger

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