Here is an article by Adele Horin, published in the Sydney Morning Herald
For the ageing parents of intellectually disabled children, the future is a scary prospect. Who will look after their children when they die? Even if the children, often middle-aged, are settled in a group home or a flat, parents worry no one will campaign for the services they need, nurture them, or take a personal interest in their welfare. But Jack Collins discovered sometimes all you have to do is ask…
The father of a daughter with brain damage, Mr Collins faced the question of his mortality more than 10 years ago. He and other parents decided their children needed a circle of friends, a committed network to take over some of the emotional work. And this circle would have to be consciously built, they realised, because many people are afraid of the disabled, or drift out of their lives.
This week, Mr Collins, from Vancouver, is in Sydney to tell carers about PLAN, the organisation he began to give parents peace of mind, and their children the networks others take for granted.
John Ryan, the State Opposition spokesman on disability, announced the Coalition, if elected, would provide $250,000 a year to support the establishment of a similar organisation here.
“What makes life worth living is personal relationships,” Mr Collins said. “Many people with disabilities have no one except their parents. They are isolated and lonely.”
Because parents often felt their disabled children were a burden to others, they were reluctant to ask for help, he said, even from their other children.
PLAN provides a paid facilitator who slowly helps the son or daughter build up a network. The facilitators do the asking. They will track people from school days or former neighbourhoods who once knew the family, or approach other relations, or tap new people who share interests with the disabled person.
The facilitators invite people to a meeting to consider a continuing involvement in the person’s life in a big or small way. And what they have discovered is that most people, when asked, say yes.
It is working in Perth, where a similar organisation called PIN began more than two years ago. Its development officer, Eddie Bartnik, said that even when people with disabilities were lucky enough to get a lot of government services, they could be lonely. He stressed that the friendship networks were no replacement for services but a complement.
It sounds a good idea to Estelle Shields, mother of Daniel, 29, who has a severe intellectual disability. But her first need is for a place in a group home for him. Then she is hard-pressed to think where facilitators would start in her case. Her other three sons are “typical 20 year-olds, involved in their own lives”, her extended family lives in the country, the dedicated staff at the sheltered workshop her son attends “need to get a break at 5pm”, and Daniel’s recreation group all have intellectual disabilities.
‘We don’t like asking anyone but government for help,” she said. “But it’s an interesting idea, and I think it would be much better if the asking comes from someone else.”