HEALTH

No room for the disabled

Ann Kerr March 28 1983
HEALTH

No room for the disabled

Ann Kerr March 28 1983

No room for the disabled

HEALTH

Ann Kerr

Even as the Stephen Dawson case came to an emotional conclusion, the major figure in Canada’s other recent legal furore over the rights of the handicapped struggled to get his new life in order. In November severely handicapped 20-year-old Justin Clark won a highly publicized battle with his parents for the right to move into a group home from the large Rideau Regional Centre near Ottawa where he had lived for most of his life. Clark became a hopeful symbol for advocates of “deinstitutionalization”—the movement to take the handicapped out of impersonal hospitals and reintegrate them into the community. But five months after the court decision Clark remains in the 1,075-bed Rideau institution. Friends who ran the group home he wanted to live in and who supported his legal case now plead that they cannot care for Justin because his handicaps are too formidable. Unhappily, Clark has now become a symbol for growing doubts about the wisdom of the push for widespread deinstitutionalization.

Governments have been in the vanguard of the movement since the early 1960s. Among the large provincial institutions that have opted to open their doors and return the handicapped to the community are the Huronia Regional

Centre for the Mentally Retarded in Ontario and Woodlands School for the Mentally Retarded in British Columbia. Now even social service professionals and mental health advocacy groups concede that the rush to shut down large, overcrowded facilities and operate smaller group homes has left many mentally and physically disabled people with inadequate care. Ontario recently held inquests into the deaths of two mentally retarded men living in privately run community residences—one

died of pneumonia and the other was killed in a fight. As a result, the province has taken over one of the facilities.

Groups such as the Canadian Mental Health Association (CMHA) and the Canadian Association for the Mentally Retarded (CAMR) claim that the provinces have neither adequately prepared deinstitutionalized residents for community living nor provided enough housing and support programs like vocational training. In Halifax, Robert Britton of the city’s department of social planning says: “We are aware of about 20 to 30 people on the streets in Halifax alone who, in our opinion, need long-term custodial care that simply is not available in the present system. The pendulum needs to be somewhere in the middle, but at the moment it’s swung to the point where we’re dumping everyone on the streets.”

Many health care experts now suspect that provincial governments are abusing the spirit of reform as a means of cutting health care and social service costs. “With the general financial restraint of the provincial governments, an obvious erosion is taking place,” says Gordon Morwood, CMHA national director. For provincial budget cutters, the savings are attractive. A recent study by the Alberta Association for the Mentally Retarded revealed that the yearly cost to the province in a provincial institution ranged from $30,000 to $46,000' per person, compared to $15,000 to $33,000 in a group home.

Last week at a Toronto meeting, 40 Ontario parents of mentally retarded patients in provincial institutions charged the government with diverting social service funds to general revenues. The parents called for a moratorium on Ontario’s plans to close six small institutions for the mentally retarded and substantially reduce the size of another during the next five years. The residents will either be placed in group homes or the remaining large provincial institutions. “This is a giant step backward,” says Bhupatrai Bhuta, whose 13-year-old son Vinay has lived for six years at the Durham Regional Centre, due to be closed in 1987. “Someone as hyperactive as our son is probably not suitable for a group home,” he said. Unless the province is willing to negotiate with the parents, they may take legal action to stop the closures, says Bhuta. Ontario New Democratic Party social services critic Richard Johnston charges that the smaller institutions, with an average of 150 beds each, are being closed because “the residents are less severely retarded and will be cheaper to care for in the community.”

When sparse group home beds are not available, the results can be devastat-

ing. The Parkdale area in Toronto, in particular, has become notorious as a quarter for ex-psychiatric patients from the nearby Queen Street Mental Health Centre. The former patients live in run-down boarding houses with little professional monitoring and few support services. A critical report on mental health care, commissioned by the Ontario ministry of health and released in January, found that the number of psychiatric patients in Ontario institutions fell from 20,405 in 1960 to 6,079 in 1976, without a comparable increase in community-based services. Says CAMR Executive Vice-President Hugh Lafave: “To have good community care, you have to spend as much as, and probably more than, you would in an institution.”

In a drastic about-face, parents and social services professionals now view the large updated provincial institutions in a more favorable light, unlike attitudes 30 years ago. “Dormitories with dozens of beds were the rule, now they’re the exception,” says James Fraser, administrator of Hillsborough Hospital and Riverside Home of Special Care near Charlottetown—the only provincial psychiatric hospital in Prince Edward Island. Hillsborough, which has 202 patients, houses a maximum of four patients to a room and offers recreational and training programs for life on the street.

However, the value of properly run and funded group homes is universally accepted. For cerebral palsy victim Wayne Middlebrook, moving to a Toronto group home from Bellwoods Park House, a 60-bed Toronto institution where he lived for 18 months, has been a major step. Says Middlebrook: “It’s harder living here, but in the long run it’s going to make it easier to live on my own.” In Vancouver, Norman Maniago, 19, was assessed as profoundly retarded and lived for 13 years in Woodlands School, where he was regularly tied to his bed. Two years ago the B.C. Community Living Society arranged for him to move out on his own with two other retarded men and live-in helpers. Now he can walk unassisted and he attends programs in the community.

Community opposition to group homes, however, may prove to be the most persistent obstacle facing disabled people. Undermining the deinstitutionalization debate are “not on my street” objections to group homes and community care. If Justin Clark takes the giant step out of the institution and into the neighborhood, the question remains : would he be welcome? Recent negative reaction to group homes seems to indicate that the answer may be no.

Stephen Kimber

Jon Kalina

Dave Greber

Diane Luckow