Carers demand long-term answers
hole for people aged 20 to 40, who have to rely on funding under the CSTDA.’’
Under that agreement, she said the federal Government had been providing about 20 per cent of the funding. However, in some states including NSW, that share had recently slipped — to about 16 per cent in the case of NSW— because the states have begun putting more money in.
The agreement expired on June 30 and a new one is still under negotiation.
‘‘ The Commonwealth has no new funds on the table — they are not even going to keep up with inflation,’’ Clark said. ‘‘ What we need is a huge injection of funds — we don’t care if the Commonwealth or the states provide the services, but it has to be attended to.
‘‘ We need permanent accommodation for people so severely disabled that they can’t look after themselves. You just can’t imagine the burden every day of looking after your (disabled) child in the family home. You are talking about grandparents looking after a 30-year-old son who weighs 80kg . . . they are still full-time carers for an 80kg-equivalent of a six-year-old child.’’
MaryLou Carter is secretary of a newly registered political party called the Carers’ Alliance, and its number one Senate candidate in NSW. She was at last week’s demonstration: ‘‘ We are seeking a Senate seat, because without a political voice, carers will continue to be put on the back burner, boiling over and no-one doing any mopping up. There are always so many other decisions and politicians ignore us because they can, and do.’’
Carter has a severely intellectually disabled 16-year-old son, who has had his disability since birth.
‘‘ When he was three, four and five, I didn’t have any idea of what was waiting for me, and what would be my fate,’’ she says. ‘‘ I started my own business, but for the last 16 years I have not been able to be part of that business. This is the story of so many people.’’
Clark says there are about 17,000 long-term accommodation places in Australia. If Australia had as many places per head of population as Norway and Sweden — where there are no waiting lists for such accommodation — then Australia would have something like 60,000 places, she says. ‘‘ We have to get up to 20,000 around the country, but that will still only be one-third of what we truly need.’’
Protesters at last week’s demonstration did not actually sit down en mass inside John Howard’s office, but instead trooped in one by one to pass their concerns and complaint to one of the Prime Minister’s staff. Clark said they had a ‘‘ very polite reception’’.
Lobbying: Carers protesting a lack of accommodation for severely disabled people seek a better deal in John Howard’s Gladesville office