A group that advocates for Nova Scotians who are developmentally delayed is giving the Community Services department a failing grade for its inaction on implementing its ten-year plan for change.
The Community Homes Action Group (CHAG) is made up of researchers, parents, advocates, and health care workers.
The province is two years into a ten-year plan called A Roadmap for Transforming Services for Nova Scotians with Disabilities. CHAG conducted a province-wide survey and says the results show there has not been any significant move by the department to address the government-approved recommendations.
"We were made a promise through the transformation roadmap document and there has been no visible progress on the promises that were made," said Dr. Paula Hutchinson, a member of CHAG and the parent of a 21-year-old son with autism spectrum disorder.
The government said it is making progress, but wants to get it right.
'Son died while waiting'
Hutchinson said when the road map came out, even the most jaded and cynical felt things were moving forward. But she said government has since wandered off the road.
The survey measured five areas and included comments from those who responded. Of the 168 people surveyed, 86 per cent said there was poor progress in decreasing wait lists for small-option homes.
"Son died while waiting for appropriate care," one person commented. Another said, "My own son has been on the wait list for 20 years."
Barb Horner's 31-year-old daughter Mallory has cerebral palsy and continues to live at home. Her family has sacrificed a lot to ensure her daughter lives a good life, but Horner would like to see her daughter living in the community with support.
"We made progress in this province when we closed the children's training centres in the early 90s, but in the last 15 years or so we've come to a standstill and we're in fact going backwards and nationally and internally. We are now way behind the standards," Horner said.
Hutchinson wants the government to keep its promise to move people out of institutions and into the community.
Institutions "incarcerate" people, she said.
"It takes away all their choice, all their voice, all their control. We know this because when we transition people out of institutions, they blossom, they change, they actually have better health. It's an amazing, transformative experience to be a witness to."
Families feeling desperate
The group received 168 responses to its survey. Hutchinson said it is reasonable to generalize those results, partly because of the overwhelmingly consistent responses.
She said the group has tried to work with government in a positive way, but has made little headway over the past decade.
"Families are starting to feel really desperate,"she said. "It's time we start reaching out like this and start talking about what the needs are of our community."
Hutchinson calls this a human rights issue, citing Canada's acceptance of the UN Convention on the Rights of Persons with Disabilities.
"These are people's rights that are being violated," she said. "No progress reports, nothing, so if they're actually acting on this we'd like to know. We'd like some transparency."
'We are moving forward'
Community Services Minister Joanne Bernard said she's read the report card and nothing in it surprises her. She said she understand people may not be happy with the pace of progress, but she wants to do it correctly, not quickly
"I will not do this in a rushed way," Bernard said. "I will do it in a measured way that's safe and responsible so it meets the needs of everyone involved here."
Bernard said other jurisdictions have done it more quickly and there have been tragic consequences.
She said the government is still committed to the ten-year plan, noting that since April 136 people have moved off the wait list and into community option homes. But, she said, it's not just about housing, it's about having all the required supports in place.
"We are moving forward and I understand the pace may be slow for some, but we are moving," she said.
Bernard also acknowledged the department needs to do a better job of communicating exactly how the plan is progressing.