By Jennifer Thompson
SYDNEY — The Statewide Disability Crisis Coalition erected a tent city in Hyde Park, in the city centre, between November 24 and 26. The action, part of an ongoing campaign for government support for people with intellectual disabilities and their families, culminated in a march on state Parliament House on the Saturday.
The protest attracted families from as far away as Lightning Ridge, Trangie, Narromine and Walgett in the state's west, plus bus loads of parents from Dubbo, Orange, the central coast, Newcastle, Coffs Harbour, Port Macquarie and Albury, and every suburb in Sydney.
There is a crisis for the families of people with intellectual/developmental disabilities, which has been quantified in a survey and report released by the NSW Council for Intellectual Disability.
Council president John Jacobsen explained to Green Left Weekly that the council has been getting an increasing number of phone calls from parents who are unable to get alternative accommodation for their son or daughter with an intellectual disability. The calls were from all over NSW and included parents in their 70s, 80s and 90s who had cared for their sons or daughters all their lives, as well as younger families in crisis.
"A woman rang from Kempsey a few days ago. She has an 11-year-old daughter. They've got a crisis in the family, and need a place for their daughter to go for up to a year while they sort their crisis out. She can't find anywhere in the state, and so she will probably have to send her daughter to a nursing home for elderly people in the Blue Mountains. The woman is frantic.
"A woman from Newcastle wrote to us. She's a double amputee, 90 years of age; her son is 48, he has Down's syndrome and roams the streets all day, and she's frantic for his whereabouts."
The council did a survey across the state to get some hard facts to back up the anecdotal evidence. The figures were provided by Department of Community Services case managers, who handle the families' problems. The survey showed there are 1051 families on the urgent waiting list now, and 585 of those are in crisis. There are a further 1649 families who will need an alternative for their son or daughter over the next five years.
The campaign began early in the year when a police member of the Dee Why police citizens advisory committee contacted the council, concerned about a couple of young people with an intellectual disability on the streets. A council member who is nearly 80 years old and despairing for his daughter, because there are no services, no daytime programs and no accommodation, decided to call the local Liberal member for Wakehurst, Brad Hazzard, to explain the situation.
He asked Jacobsen to come and debate with Hazzard. More than 200 people came to the meeting, including a number of politicians. "It was a very angry meeting, with the parents telling the politicians exactly what was happening in their lives."
At the meeting were people from the Illawarra, the Hills district and Botany Bay. They also wanted meetings. There have now been 10 meetings called by parents across NSW, including one out in Orange, where 300 parents from across the central west and the far west came together with six politicians.
"The stories you heard from parents genuinely moved you. Even I was moved to tears on that particular day, and I've heard so many stories", said Jacobsen.
The tent city continued despite a government announcement earlier in the week of a $173 million package. Although it sounds like a large amount of money, developmental disability services have lost over $400 million in the past six years. The supported accommodation component of the $173 million is for only 250 people over a four-year period, while the council's survey of the need adds up to 2700 over five years.
"When the government announced the package, I rang family groups all over NSW and said, 'Here's what they've offered, what do you want to do?'", said Jacobsen. "They all said we want to go ahead with this protest."
Previously, much anger had been focused on $50 million meant for developmental disability services that was sitting in Treasury. The council told the government that release of the $50 million would give 300 places in the community immediately, and with additional funding over the next few years they could manage that crisis, particularly if all levels of government played their part. In the $173 million, the $50 million has been released, but for other purposes.
The coalition is now looking to bring the campaign into the state electoral arena with a suggestion of running someone in the upper house. Figuring on the 800,000 people with a disability in NSW, and the 200,000 quota for an upper house seat, Jacobsen feels that they could hold some balance of power and have a voice to raise the issues. Targeting of marginal electorates, to campaign for those candidates who would promise to do something, has also been suggested.
Jacobsen feels that the problem is partly one of male-dominated parliaments disregarding the rights of women as much as the rights of people with intellectual disabilities. "It's an abuse of women. They're saying let the women do the caring, and when they die, let the brothers and sisters do it."
He also points to the economic disadvantage. A recent UK study has shown that 32% of families with a member with a severe developmental disability have no wage income. On average, the income of such families is 22% lower than the rest of the community.
"I don't think it's unreasonable to say to governments, we do the best job we can, but we really need support, and there comes a time when government has to take over ... Australia is a long way behind."