Parents demand better care in institutions

In the quiet moments after Myrtle Eveleigh visits her 20-year-old autistic grandson, she sometimes sits in her car and weeps.

Last September, he was locked alone in a constantly lit room at the Braemore adult residential centre in Sydney, N.S., for 15 days with occasional breaks.

A provincial investigation said videos constantly monitored him. On several occasions, he urinated in a corner when he was unable to get a staff member's attention.

"I'd like to learn why this happens," Eveleigh said of her grandson's confinement, which is the subject of an independent review ordered by the Department of Community Services.

"I've been there and I go out in my car and cry that I have to leave my grandson there. I cry not just for Jonathan, I cry for the other clients. It reminds me of a cattle stall. It's not the workers' fault, but people don't know about it until you have a loved one in there."

Advocates for community living argue the incident shows that facilities where dozens of people with intellectual disabilities are housed with widely differing conditions in semi-private wards should be phased out of existence across the country.

National advocates also say Canada is far from achieving the goals of the 2007 United Nations Convention on the Rights of Persons with Disabilities, which calls on governments to ensure that they enjoy full inclusion and participation in the community.

However, some parents in provinces with deinstitutional care warn that until there is better housing available, trained care teams to assist, and independent monitors of the various living arrangements, transferring people into the community is no panacea.

Some workers in institutions in Nova Scotia say change is overdue.

Registered nurse Chris Cash, who works at Braemore, says the tight quarters and mix of residents is risky and makes it difficult to give effective nursing care.

"I believe closing an institution such as Braemore Home or a large residential centre anywhere in the province would be a good idea," he said in an interview, but he adds that funding should be in place for alternatives, and residents and their families must be consulted first.

He said some units have up to 30 residents living nearby each other.

"We can have a younger person with a developmental disorder, such as autism, that has a high level of aggression that can be on the same unit next to somebody that's physically vulnerable because of a disability or their age ... and who is in a wheelchair."

Best financial option: province

Government administrators and the home administrators have countered that the institutions remain the best option in a time of tight budgets.

"Those facilities are what we have to work with, and we don't have new facilities and do not have the dollars right now for the new facilities," said Denise Peterson-Rafuse, Nova Scotia's minister of community services.

Her message to advocacy groups, she said, is "change does take time."

Debra MacPherson, the chief executive of Braemore, has publicly apologized for Jonathan's confinement. In an email, she said she's not commenting further on the incident during the independent review.

In Nova Scotia, there are seven mid-sized institutions that house just under 500 people, and four regional rehabilitation centres with about 170 residents in total. That's slightly fewer than the number of people who live in unregulated apartments known as small-options homes -- making the province among the most reliant in Canada on institutions.

Elsewhere in the country, the Canadian Association for Community Living, a non-profit advocacy group, estimates there are about 900 people living in larger institutions, which the group defines as locations where residents are segregated from society, have little say over their day-to-day lives, and usually live among more than 100 residents.

The community living group is calling for the closure of the Michener Centre in Red Deer, Alta., with 245 people, and the Manitoba Development Centre in Winnipeg, which has 270 residents.

The average age at Michener is 55 and the population is declining. There are no new admissions except by court order at the Manitoba Development Centre, a government spokesman said.

The Canadian Press has obtained records from the Alberta government under freedom of information legislation that says the Michener Centre had 56 complaints of abuse of residents between January 2007 and January 2010. Of those, 17 cases were "upheld" in investigations.

The centre's director of public relations declined to elaborate, other than saying in an email that the centre "takes all allegations of abuse very seriously and when founded, appropriate corrective action is taken."

Don Gallant, a spokesman for the Canadian Association for Community Living, said he believes thousands of other Canadians with intellectual disabilities are living in housing that isn't their choice, such as nursing homes, acute care wards, overcrowded group homes and rehabilitation centres.

Some parents say they've observed their adult children deteriorate in these environments.

New approach needed: parents

Anita Eveleigh, the mother of the man who was confined in Cape Breton, said a new approach to care is needed where parents are intimately involved and housing is tied to the needs of the person with a disability.

She argues her son eventually should have his own room in a group home with a quiet space, access to manual work, and close assistance by people with training in autism.

"They need more group homes, but group homes that are set up so that if a client is having a bad day and someone with autism who needs their own space can have their own space," she said.

Wilfred and Susan Dove of Sydney, N.S., want parents or advocates heard and intimately involved in decisions that affect those with developmental disabilities.

The couple said they disagreed with Braemore over how much care their 20-year-old autistic son, John, should receive. They ended up spending four hours a day at the institution themselves, cleaning their son's room and taking him outside for walks.

They also refused to sign a contract with Braemore that included a clause describing when and how their son could be transferred to what the contract describes as "a more appropriate facility" without their consent.

"We said we're not going to sign that unless we can be part of the decision making," said Wilfred Dove.

On Dec. 14, 2009, he said he received a phone call from the home that his son was being transferred. He rushed to the home and found his son on a stretcher outside with three police officers near him.

John now lives at home with his parents, who monitor him to make sure he is safe through a closed-circuit television system.

MacPherson, Braemore's chief executive, said in an email she couldn't fully respond to Dove's allegation because of privacy issues.

"In respect to discharge of a client, the family would be advised well in advance and be given an opportunity to participate in the discharge planning including the transportation of the client," she wrote.

In British Columbia, some parents warn that suddenly closing institutions without adequate facilities and independent monitoring in the community can also lead to frightening results for families and the resident.

Dawn Steele of the advocacy group Mothers on the Move argues that the Crown-agency Community Living British Columbia, which oversees deinstitutionalization, hasn't delivered the promised choice for families or the individual solutions that are needed.

"Underfunding has created a whole new set of issues, such as lengthy wait lists to access residential and other supports," she wrote in an email. "We know many families are just saying, 'Forget it if the only choice is a foster home, I can do that myself.' "

She said there is also a need for an independent advocate to investigate complaints and review living arrangements.

Michael Kendrick, a Boston-based consultant on deinstitutionalization, says a community-based model includes the need for independent monitors to ensure safety, as well as adequate care and medical support in the community.

Kendrick, who has worked around the world on community-based care projects, said jurisdictions like Nova Scotia should develop a plan to gradually phase out institutions over a five- to 10-year period.

"If people are given an option, most mentally disabled or their families will choose an alternative in the community," he said.

Myrtle Eveleigh said life has improved for her grandson since news broke of his confinement. He has one staff worker assigned to be with him, he goes to workshops and he is allowed more exercise for his restless body.

But she dreams of a better life for the grown man who usually holds her hand gently as he takes her back to the car after a visit.

"It would be a wonderful world if they called and they said we have a home for Jonathan. That would be a wonderful thing," she said.