K'jipuktuk (Halifax) -- Jocelyn's son, Joseph, is a person with developmental disabilities. Joseph is 21 years old; he lives at home and requires a lot of love and attention.

He is a happy young man, but in some situations he lacks the social skills that come effortlessly to others. And then he finds it difficult to fit in.

Jocelyn manages with the support she is receiving now. But as both Joseph and Jocelyn are getting older she would like to see her son settled in some type of supervised living arrangement.

Joseph has been on a waiting list for a place in a group home for two years, and he isn't the only one. If anything, the number of people on the waiting list for placement in supervised living is growing.

“The hardest part is not knowing,” says Jocelyn, who is in her mid-fifties. “Not knowing when a solution will be offered, and also, not knowing what will become of Joseph when I am no longer there. Each parent thinks about those things.”

There are about 5,000 people in similar situations to Joseph's in Nova Scotia. As many as 650 of them are on a waiting list, looking for placement in some kind of residential arrangement. Some live at home, others live in large institutions and urgently need to move to a place that better meets their needs.

Critics argue that this waiting list is the result of a long history of neglect by provincial governments, and sadly the current NDP government appears to be no exception.

These same critics say that what little government is doing is wrongheaded. Rather than providing small community-based solutions, the provincial government continues to invest in larger institutions, removed from the community and without the kind of personalized care that is so much easier to provide in smaller homes.

Isolation, segregation, inability to control your own life, no longer being part of your family and your community: those are some of the qualities that too often define life in an institution.

Nova Scotia's continuing investment in institutions also runs counter to what most other provinces are doing. In 2009 Ontario closed its last three large institutions. Newfoundland has had a formal policy to move away from large institutions since 1982.

Wendy Lill, playwright and former Member of Parliament, is co-chair of the Community Homes Action Group, a group of concerned citizens, parents, and health care professionals who want to raise awareness about these issues and propose solutions.

“There has been a freeze on the creation of small option homes, homes for three or fewer folks, since 1996,” explains Lill. “Competing for the few remaining small scale vacancies is an ageing population who require more care and need to move out of the larger institutions. People in family situations continue to be pushed to the back of the queue unless a crisis situation develops.”

Many of the people on the waiting list are in near-crisis situations.

Dr. Mary Tomlinson is a member of the Community Homes Action Group, and a psychiatrist with Capital Health. She sees many persons with developmental disabilities who are in a place that's not right for them.

Appearing in front of MLAs in 2011 she explained: “I would say about a third of those people's behaviour is either caused by or made worse by the situation they're living in.

“If you can't speak and you're oppressed by noise, or by a lot of people, or by somebody taking your stuff, or by the fact that people aren't listening to you, you want a drink of water and they're too busy or you don't know how to ask for it - what do you do? You might hit your head, you might hit the person who comes to bathe you or that kind of thing. They call me and they expect me to give them medication, so I'm trying to treat behaviour that is being caused by horrible situations.”

Tomlinson also witnesses much misery for people on the waiting list who are still in family situations.

“Then I turn to the families who have somebody at home who might be 40 and they’re getting nearly 80,” Tomlinson says. “I know one family where Dad would hold the young man’s hands while Mother washed him because if you didn’t hold his hands he’d be hitting either himself or Dad, and this had been going on for years and years. He only got housed when his mother got sick. Where did he get sent to? A large institution, and then his hitting himself really crescendoed.”

So what should be done? Lill is very clear. Less talk and study, more clarity and more action.

Lill explains that one her sons, who has Downs syndrome, was born 27 years ago, the very same year the Charter of Rights and Freedoms was entrenched in our constitution. “We took that very seriously,” she says, “we were happy that people with disabilities now have rights. We were heartened by the language, equality rights for people with disabilities.

“But not much changed. The current government needs to demonstrate leadership, marshal resources. That has not happened. We have seen no significant new money, no long-term plan. We have the information, we don't need another study, we know what to do.”

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Community Homes Action Group is holding a rally at the Nova Scotia Legislature on Wednesday, Dec. 5 at noon to draw attention to the failure of successive governments to provide appropriate community based residential options for persons with developmental disabilities. A concurrent rally is planned for Sydney, Cape Breton.