Waiting list 'abyss' in N.S. for care and housing of people with disabilities: doctor

HALIFAX -- A Nova Scotia family doctor says people with intellectual disabilities can develop illnesses ranging from diabetes to stroke when forced to live in unsuitable housing without expert help.

Dr. Karen McNeil told a legislature committee today many families feel like they're experiencing "an abyss" because their loved ones languish on a 1,698-person waiting list, either to begin receiving care or in hope of being transferred to a more suitable living arrangement.

McNeil is a founding member of the Dalhousie family medicine adult developmental disability clinic in Halifax, where since 2010 she has supported primary care doctors who care for adults with intellectual disabilities.

She told the committee that larger, so-called "congregate care" facilities that house about 525 of the 4,979 adults receiving care are unsuitable and that it's well established they should be living in smaller, community homes.

McNeil says that's particularly true during a pandemic when sharing bedrooms and bathrooms "is a recipe for disaster."

The doctor says she sees people who are frustrated by living amid too much noise or who lack specialized care, leading to undiagnosed needs.

"When people with intellectual and development disabilities are forced to live in unhealthy situations, they try to communicate, and this is difficult when you have few words or no words," McNeil told the Department of Community Services legislature committee.  

"Sometimes they communicate very loudly, sometimes they get physical, sometimes they beat on themselves, sometimes out of desperation they beat on others."  

"I feel that they are telling us their environment is not suitable and in some cases it is oppressive," she added.  

The physician says family doctors often prescribe psychotropic medication because the province hasn't created multidisciplinary teams of doctors who can probe the root causes of frustration.

"There's no reason we can't create these teams," she said. "And by not having this we are using more drugs. What do those drugs do? They create side effects such as diabetes and put them at risk of heart attack and stroke."

McNeil is part of the advocacy organization, Community Homes Action Group, which is urging the province to move more swiftly toward transferring people out of their congregate facilities -- referred to as adult residential centres or regional rehabilitation centres -- to small options homes where up to four people live with caregivers.

Joyce d'Entremont, the chief executive of Mountains and Meadows Care Group, noted that a plan to shift 27 residents from Harbourside adult residential facility in Yarmouth to community homes -- the first in the provincewide plan to phase out the institutions -- has shown the process must take place at the pace that families and residents are comfortable with.

The Harbourside move, d'Entremont said, is happening over 12 to 18 months.

The hearing heard that Nova Scotia is the last jurisdiction in Canada to undertake the closure of institutions, after a moratorium on the construction of small options facilities occurred through the 1990s, as other provinces forged ahead with smaller residences.

Maria Medioli, executive director of the disability support program, told the committee the advantage of being last is that the province has learned about the downside of shifting people into the community without adequate support.

"We have to set people up for success," she said. "Some of these people have lived in an institution their whole lives. They've been told when to eat, when to sleep and who they have to live with. So to move to a community can be scary.

The government has said in earlier news releases that it has budgeted $7.4 million in 2020-21 to create 50 new community placements, with plans to expand this transition "over the next several years."

Tracey Taweel, the deputy minister of Community Services, noted during today's hearing that the department's budget for the disabilities support program has grown $70 million in five years, to $389 million annually, with $75.5 million going toward the large congregate facilities.

She noted in her presentation that the province "remains fully committed to phasing out" the large facilities. 

This report by The Canadian Press was first published Feb. 2, 2021.