Residents adjust to living in group homes

Posted on December 27, 2008 in Child & Family Debates, Equality Debates, Governance Debates, Health Debates, Inclusion Debates – living – Residents adjust to living in group homes: Used to large institutions, intellectually disabled and their families adapt to group homes
December 27, 2008. Trish Crawford, Living Reporter

It’s the end of an era.

Advocates for the intellectually disabled are cheering as Ontario moves to close its last remaining institutions, following the example of Newfoundland, British Columbia and New Brunswick.

“It’s an extraordinary victory for people with intellectual disabilities in Canada and internationally,” says Michael Back, executive vice-president of Canadian Association for Community Living.

“Society needs to come to grips with the history, the injustices and the abuse of institutions,” says Bach. He compares the situation to the abuses experienced by native Canadians in residential schools.

In 1970, Canada had a whopping 33,000 people in facilities for the intellectually disabled (formerly called mentally retarded) with the majority being in settings of 100 people or more, he says. Today, the total in the country is about 2,500, with more places preparing to close. It’s estimated that roughly two per cent of the total population have an intellectual impairment ranging from mild to profound.

“We’ve made a definite difference in 35 years,” says Bach, adding the next challenge is to truly integrate those with intellectual disabilities in the day-to-day activities of the broader community.

“Most people have not found common humanity with people with intellectual disabilities.”

Trish Crawford

Wendy Sayer is methodically counting her money, picking up each coin from her bedspread and putting it in her little change purse.

She does this a couple of times a day and enjoys the sound of cash jingling in her purse when she heads off on an outing.

Partial to coffee and doughnuts, Sayer has hit many Tim Hortons and Second Cup coffee shops near her new home in Shanty Bay, about a 15-minute drive from either Barrie or Orillia.

In many ways, her daily routines haven’t changed much since she moved to O’Brien House, a group home for 10 intellectually disabled adults late in August. Back in Orillia’s Huronia Regional Centre, where she lived for most of her 63 years, she also bought coffee in the tuck shop, helped with the laundry and went on many outings in search of sweet treats.

What’s changed now is that Sayer has her own bedroom, which is filled with her own furniture, and she is part of a much smaller group of people than in the past. From living among thousands of similar souls, Sayer now shares space, grounds, staff and activities with only nine others.

Whereas the government of Ontario once had full responsibility for her health and care, now a non-profit community agency called Simcoe Community Services is responsible for her well-being. The era of on-site doctors, dentists, hearing and sight specialists is over and she must visit area physicians for her regular blood tests and other care.

Ontario has been speedily moving toward closing the last three institutions for the intellectually disabled by its target date of March 31, 2009. At one time, more than 6,000 people lived in the three mammoth facilities in Orillia (Huronia), Smith’s Falls (Rideau Regional Centre) and Blenheim (Southwestern Regional Centre). Today, only 36 people remain in two institutions. .

Whereas institutionalization was once the only option for families with intellectually disabled children, now it is no option at all.

For the past four decades, a growing number of families have chosen to raise their disabled children at home. With few new residents, the population at the centres got older and deinstitutionalization has primarily involved the placement of aging residents (average age 51) with the attendant physical and social difficulties of advancing age. Of the 905 residents who moved into the community by November 2008, 28 have died and 56 have moved into long-term care facilities.

This is a worldwide movement and Ontario is just one of hundreds of jurisdictions which have rejected large institutions in favour of small community settings.

It has not been without controversy, however. Sayer’s family, for example, was part of a parent group that took the government to court to stop the closings. In the end, the court ruled that the province could close the institutions but stipulated it must provide placements satisfactory to the residents’ families, or return to court.

Lyz Sayer, 60, Wendy’s younger sister, says her greatest concern was that her sister would not get the medical care, staff attention and social interaction she needed and had received at Huronia.

“I wanted some place larger. She was brought up with a lot of people around her; she is very social. I didn’t want her locked in a house in the suburbs. The more residents you have, the more staff you have.”

Sayer says Huronia set the gold standard for care and was better than most group homes.

The requirement for family approval meant that Sayer’s insistence on a large, rural setting and gradual transition were met and she is delighted with the home.

“We got to put our foot down as to where Wendy went,” she says.

This didn’t come cheap. Ontario will spend $1.5 billion in 2008/2009 for developmental services.

Roughly $100,000 per resident was provided in capital funding so agencies could create more space for those leaving institutions, resulting in a building bonanza for some agencies.

“They built a house for us. It’s really amazing,” says Douglas Graham, 86, who describes his son Richard, 59, as “profoundly retarded and deaf.”

His son had lived in Rideau Regional Centre for 46 years and Graham had also gone to court to stop the closing of that facility.

Later, accepting the inevitable, he set out to find a rural area for his son to live in and was pleased by the operations of the small Community Living North Grenville, which proposed building a new house in Kemptville to house Richard and three roommates who would move together.

The four men got taken on frequent trips to the building site, says Graham, adding that Richard was among the first to leave Rideau in its last push to be emptied of residents. “It is a lovely home with every convenience. He is doing very well.”

These types of conversions are common, say experts in the field, if transition planning is done well and parents get to have their voices heard.

“It is heartwarming to see these parents come on board,” says Madeleine Meilleur, minister of community and social services, who has visited many group homes in the past few years. “They were afraid because of the unknown.”

Ted Shuh, executive director of North Grenville, says his agency, which supports 115 people with intellectual disabilities, took 18 former residents of Rideau. It handled the increase by building one house and buying a duplex. These buildings are permanent resources that will last after the residents die, he points out.

“Facility dollars come and stay in the community.”

Over in the Essex county, near Windsor, similar building occurred, something that was affordable for more rural agencies but difficult to do in places such as the GTA where land prices are higher.

Nancy Wallace-Gero, executive director of Community Living Essex County, says over the years her agency was able to take 40 former residents of the southwestern Ontario facility which now sits empty. They were able to build four homes and construct additions such as self-contained en suites for existing homes.

In Essex, the provincial government provides operating expenses of about $75,000 per resident (within the institutions the costs were about $100,000 per resident). It was challenging to meet all of the needs in the community, admits Wallace-Gero, citing the cases of severe behavioural problems.

Time and time again, she says, behaviour issues diminished once the person left institutionalized care. Also, she adds, residents needed less medication and interventions once in their new homes.

“It’s all about the quality of life and the wonderful opportunity to live in the community,” says Wallace-Gero, who grew up in a family of 12 children, two of whom had intellectual disabilities. As a young girl, she remembers her family visiting a regional centre where their two disabled foster children were scheduled to move.

“They came back and said, `We can’t allow them to go there. What are we going to do? We have to protect them,'” she recalls.

As a result, the family adopted the two children and inspired Wallace-Gero to help others with disabilities live in the community. However, she acknowledges it has been a leap of faith for families who believed that institutional life provided more services.

“We had families who were very concerned, who were so against it, and now those same families are very happy.”

Greg Cavers, 47, remembers the day his uncle Bob Cavers, 67, moved into his group home in Cotten, Ont., 2 1/2 years ago.

“You should have heard his language when he moved. I knew he was angry. He wasn’t the sweet Bob I knew,” says Cavers.

Put in charge of his uncle’s affairs, Cavers was shocked to read his grandmother’s direction that Bob, who has cerebral palsy, should “never go to a group home.”

Although the regional centre “was spotless and vibrant” when Bob first moved there 25 years ago, its proposed closing had led to fewer resources being put into the place in recent years, says Cavers. Bob went downhill.

“Back in the day, he had been vibrant and talking. But, in the past 10 years, he had been in decline, mostly a silent state.”

Moving into a house with three other former residents of the centre has changed all that, Cavers says.

“It’s miraculous. I can’t say enough about the situation. He’s close to home, he has the same doctor, dentist and optometrist as me. We just got back from his Christmas party. Bob has a better social life than I do.”

When Kevin Boyle’s father died, his mother had to find a job and subsequently put his brother, David, now 49, in the Southwestern Regional Centre.

“Thank God, the institution was there,” says Boyle, 47.

Although he is grateful for the excellent care his brother, who has cerebral palsy and uses a wheelchair, received at the centre, Boyle says the new situation is an improvement. He now lives with three others in a home in Tecumseh.

“I wish it had been available years ago.”

The range of activities has greatly increased in the smaller setting, he says, adding, “David got on a plane last year and went to Florida to visit his mom. The staff went, too.

“It was a wonderful thing.”

But not all families are happy . . . . .

Huronia Regional Centre once housed more than 2,500 people with intellectual disabilities. Today, it is virtually an empty shell on the sprawling lakeside property in Orillia, home to only six residents.

But those last six are not leaving without a fight.

Sofia Papagiannis, whose autistic son Peter, 40, has lived there since he was 7 years old, is unhappy with the few options being offered her son. She says she has only been shown one group home in Toronto, which was crowded and unsuitable for her son.

She refused to visit a second group home in the far west end of Etobicoke, explaining it would be difficult to visit her son that far away.

“We are getting older not younger,” the Greek immigrant says. A family friend picks Peter up each weekend and drives him to Toronto for visits.

Sitting at their dining room table in North York, surrounded by binders and folders filled with documents about Peter’s life, Sofia, 63, and John Papagiannis, 73, wonder what happened to the promise that families would be involved in their children’s transition to the community and that they would get final approval on placements.

Stories of homes being built for former residents and multiple housing situations being offered seem like fairy tales to the Papagiannis family.

“They are saying take it or leave it,” says John, a bartender.

Sofia has researched other community resources and asks to be given more options, she says. “We see lots of places around Toronto with lots of activities,” she adds.

The provincial government, which controls the transfer process, replied that she should see a lawyer. Under a judicial ruling, the provincial government must return to court for approval in situations where the families refuse to sign off on any transition plan.

Families of the other five residents, three men and two women, declined to be interviewed because of pending litigation.

Peter’s parents have spent their entire lives fighting on his behalf. They say an intellectually disabled child is a child forever.

Everything was fine until Peter appeared to suffer a seizure when he was 9 months old. In the end, no one knows what happened but Peter, who had been eating food, could only drink milk or juice for many months. He didn’t take his first step until he was 2 years old and he still doesn’t talk.

Peter likes to go for car rides, says John. “He knows I’m his daddy. He knows when it is Saturday – he is happy and singing. He puts his hands in my pocket for the keys to the car. He tries to open the car.”

They wonder if the steam has gone out of the government’s drive to find the best possible placements as the numbers dwindle to the final few.

Madeleine Meilleur, minister of community and social services, declined to comment on the situation.

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