NOWHERE TO GO Oct. 27, 2001, The Toronto Star
Star reporter Kevin Donovan and photographer Lana Slezic have been following the funding plight of developmentally challenged people in Ontario for more than a year.

For 12 days after his mother died, Kevin O'Connor stayed by her bed in their Windsor home waiting for her to awake. They were lonely days. Food ran short. Mail piled up. Eventually, the letter carrier knocked on the door. "Is your mother okay?" she asked Kevin, when he shyly opened the door. "She's sleeping," he replied. Kevin and his mother were taken away — Kevin to an emergency placement that could handle a 41-year-old with limited mental abilities; his 75-year-old mother, Mary, to a funeral home, never knowing what would become of her only son.

What happened to this family is just one part of a growing crisis affecting people with developmental disabilities, formerly known as the mentally retarded. All across Ontario, in homes where children never grow up, the parents are growing old and dying. Having replaced cold government institutions as primary caregivers decades ago, thousands of pioneering parents now ask: Who will look after our children when we are gone? The crisis extends far beyond the issue of aging caregivers.

No matter the age of parent or child, there is a lack of funding, a lack of places to live, a lack of support, a lack of options for Ontario's most vulnerable citizens. A Toronto Star investigation reveals that the Ontario government has no comprehensive plan to solve a problem it helped create 40 years ago, when it began replacing institutions with parents.

Today, as many as 17,228 people fill waiting lists for support funding, group home placements or daytime activity programs. Their parents are often told the waiting list is 25 years long — or forever. "When can we find a place for your son or daughter to live?" says one community agency leader. "When are you going to die?''

In the last year, the provincial government has signalled it is aware of the pressures. Recently, the social services ministry promised a 6 per cent boost of the $940 million it spends on this sector annually, with similar increases in each of the next four years. This is the first significant funding promise since budgets were cut in 1993, and Community and Social Services Minister John Baird has made this a personal cause in the way former minister Janet Ecker tackled problems with the child protection system. But faced with the incredible needs of this community, it is a drop in the bucket.

"I knew no matter what the funding was it would not be enough," Baird said in a recent interview. His ministry is looking to develop a wide range of new supports, and to enhance existing supports. "I do see it getting better. Do we have an action plan for here to Utopia? No. But every morning I get up and try and figure out how I can move the ball forward," Baird said.

The Star found a system filled with inequities. A few people receive ample assistance — the majority very little. What is missing, critics charge, is a government policy that entitles everybody with a developmental disability to an acceptable level of support. "Among the families, there are the haves and the have nots," says Agnes Samler, executive director of the Toronto Association for Community Living. "I would like to see this type of funding made a right.'' The provincial government has no plan to do this. It manages the crisis — but makes no move to fix it.

Starting in the 1950s, thousands of families bought into a social policy change that ended mass, and often cruel, institutionalization of the mentally retarded, as they were called in the language of the day. In a movement that became government policy by the early 1970s, families were encouraged to integrate their children into the community.

Parents gave up careers, took drastic pay cuts and traded in their freedom. For some it meant providing the same level of care required for an infant or toddler — for the rest of their lives. With medical advances, many developmentally handicapped people now live to be seniors. The shift meant the province no longer had to spend the equivalent of about $120,000 a year per person for institutionalized care, saving the government billions of dollars. In return, parents learned the province had little to offer. Typically, a $3,000-$4,000 annual stipend is provided to hire a $10-per-hour babysitter so the parents can have an occasional night out or weekend away.

"Parents are hanging on by their fingernails. The government is frightened of the high number of individuals out there who need financial help." - Agnes Samler, of the Toronto Association for Community Living.

The first generation of parents who made this choice are now 50, 60, 70 or 80 years old. Their children are young or middle-aged adults. They have intellectual, and often physical, disabilities that prevent them from caring for themselves. They are disabled due to myriad birth anomalies such as Down syndrome or autism, lack of oxygen at birth, or illness at a young age, such as meningitis, which can cause severe brain damage.

Some can walk but not talk. Some can make no movement other than the sparkle of their eyes. Some need to be fed through a tube attached to their stomach. Some can read several languages but not tell time. Some can dress themselves. Some will destroy every pair of clothes you give them. Some can memorize every flag on Earth. Some collect shopping carts for food stores with the passion of an artist. Some have the wit of a comedian, the pout of a 3-year-old. Some will cry in fear of change. Some will hurt you in a rage. Some can brush their teeth, shower and comb their hair. Some wear diapers though they are 40 years old. Some love music, baseball, and a bacon and egg breakfast. Some will remember your name all their lives. Some will never know you entered their room.

The pioneering families who raised these children at home did so at a time many others were still making a different choice, helped by the medical community and a government that had built institutions capable of holding more than 15,000 mentally retarded people.

Robert Dolmages, born in 1954, was one of those children who ended up in an institution. The Hamilton doctor noticed some characteristics suggestive of Down syndrome. We'll take the baby away," a Hamilton doctor told the Dolmages, who sat confused in their hospital room. Robert's father was instructed to cut the hospital's black-lettered baby bracelet from the infant's wrist and Robert was placed in a Hamilton home with other babies born with developmental handicaps. Three years later, he was transferred to the Ontario Hospital in Orillia, a red-brick fortress that was home to 2,500 other Roberts, young and old. The inmates or "patients" had many labels: defectives, pathetic people, subnormal, feeble-minded, emotionally disturbed, retardates, troubled, idiots and morons.

"It is as if people decided that nobody who loved Robert should ever touch him," said Marilyn Dolmages, Robert's older sister. Robert, in the only photograph taken of him, looks only like a little boy, 3 years old, tousle-haired. In 1960, Robert died of pneumonia at age 6. Marilyn was 4 when Robert was born, 10 when he died. "Robert was the baby brother who never came home. I think of him often, about little things. About how Down children typically have dry skin. Nobody who loved him was there to put cream on his face and hands. I ended up working in that institution years later and heard of the stories of children caged inside of cribs that had bars across the top, row on row of children caged. I think of him and hope he did not have bars across the top of his crib.''

Marilyn saw her little brother when his body was laid out for the funeral. He was buried in a family plot. Many others were not. In Orillia, across from a Tim Hortons, on the way up to cottage country, is a mass grave where more than 2,000 bodies lie buried. In most cases, there are no names, no headstones. Years later, when Marilyn's son was born with developmental challenges, she and her husband brought Matthew home. He's still there, involved in his community, living a good life.

But around the time Robert was living and dying in Orillia, a movement was beginning in North America. Stories like Robert's were filtering out of institutions and parents began thinking twice when doctors recommended institionalization. Today, only 1,120 people classified as having a developmental delay live in big institutions in Ontario. All but three have been closed. The plan that saw parents replacing institutions as primary caregivers was widely hailed as forward thinking. It relied on one key factor: Parents who lived forever.

Male, 52. Diagnosis: Down syndrome. Father died at 87, mother, 82, sole caregiver. Requires residential placement and day supports. Annual cost: $60,000.

Female, 22. Diagnosis: Multiple developmental handicaps. Mother, 76, died. Father, 72, looking after daughter. Needs residential placement. Annual cost: $80,000.

Female, 22. Diagnosis: Rett syndrome. Parents 60 and 65. Needs day support now that she has "graduated" from school ($30,000 a year). Will eventually need group home placement ($60,000 a year).

Male, 48. Diagnosis: Down syndrome. Parents 71 and 73, ailing. Requires residential placement immediately. Annual cost: $65,000.

Male, 47. Diagnosis: Autism. Parents deceased. Brother and his wife, late 50s, caring for him. Requires residential placement. Annual cost: $60,000.

Row after row, page after page. The lists are the accumulation of futility.

Over the past two years, the social services ministry has encouraged community agencies to prepare these lists annually. The belief inside government was that the situation was not desperate, say community agency leaders. The lists are now in. "These consolidated waiting lists we have prepared are scaring the heck out of the ministry," says Don Seymour, executive director of the Lambton Association for Community Living in southwestern Ontario.

The lists estimate the cost of caring for each person, based on their needs (some behaviours are more difficult to manage) and family desires. Some families would like their grown child to continue living at home, but require assistance. Others are looking for a group home placement, or an apartment with part-time support.

In Seymour's case, his agency asked for $2.7 million to provide assistance for 100 desperate families. The government had just announced an annual increase of $50 million in funding and a daunting number of community agencies—more than 350— scrambled for a piece.

Seymour's agency received just $106,000, which provided two group home spots. Across the province, the story is the same. "Parents are hanging on by their fingernails," says Agnes Samler, of the Toronto Association for Community Living. "The government is frightened of the high number of individuals out there who need financial help.''

"It puts me in mind of the old cliché, that the test of a good society is how it treats its most vulnerable citizens," says Murray Hamilton, executive director of the London Community Living Association. "Based on that, we are not doing very well.''

Still, the province does spend a lot of money on developmental services— about $940 million per year. Most of it — $622 million — pays for the residential care of 13,000 people who live in group homes, supported apartments, homeshares (like a foster home for adults) and the remaining institutions. The other $318 million is available to support the estimated 65,000 people living at home. That's an average of just $4,361 annually per person, which buys very little in terms of supports.

So how do the parents get by on so little? Parents work cheap. Out of love, a sense of duty, they provide the sort of round-the-clock care that would require three social workers on eight-hour shifts.

Government-funded community agencies typically replace the work of these aging parents with a group home. That costs $55,000-$65,000 per person per year, plus the cost of building or buying the home. To do this for the thousands of people on waiting lists would cost more than $1 billion more a year — far beyond what the province has said it will spend.

But The Star found that a big part of the problem is how the money is spent. In Arlene Kennedy's case, documented on the opposite page, the province was spending $175,000 per year to keep her in an institution. Last fall, after 10 years, she was finally given a neighbourhood group home spot at one-third the cost. Arlene's case is not unusual. The Star found that the province spends little time examining how the money is spent, and what is best for the individual.

If Kevin O'Connor, the 41-year-old man whose mother died, had lived in most other parts of the province, he would have ended up in a group home after his mother's death at a cost of $55,000-$65,000 a year. But in Windsor, local policy requires the association to take a hard look at individual need. An independent social worker advocated on Kevin's behalf. For $34,000 a year — half the cost of a group home — Kevin is now living in a two-bedroom townhouse with another individual. He is learning to use the telephone, take a bus and prepare simple meals. A social worker is there between 2 p.m. and 10 p.m. every day. "I like it here," Kevin said in a recent interview. "I don't think I want to move one inch from here.'' His hope is to eventually have a job, "leading people to their tables at a restaurant.''

Malcolm Jeffreys, executive director of Windsor Community Living Support Services, said the province should learn from examples like Kevin O'Connor. "What the ministry is doing is knee-jerk management. There is a real lack of vision as to what is best for the individual.''