At 19, Terona Green was easily one of the youngest residents when she moved into a Toronto nursing home more than two years ago. Marooned among seniors, the teenager with cerebral palsy mimicked the grunts and groans of the elderly and then stopped talking to her family altogether.
Bill Oliphant was 49 when he was placed in an Oshawa nursing home last year. Depressed, the developmentally disabled man suffers from crushing loneliness and sleeps most of the day, while the clock radio in his room constantly flashes 9:08 a.m.
Nancy Marshall, a 38-year-old with cerebral palsy, went into a Halifax nursing home in September after social services told her that living alone was no longer an option.
"I was quite traumatized when they told me that I had to give up my apartment," Ms. Marshall said in a telephone interview from Halifax. "I miss being able to get up and around and cook for myself and pay my own bills."
For Canada's physically and developmentally disabled, who have fought for the past two decades against institutionalization, it must seem as if they are stuck in neutral. With too few community supports, scant affordable housing or aged parents who can no longer care for them, they may find they have no option but a nursing home.
At least 8,560 people under the age of 65 are living in nursing homes across Canada, according to figures compiled by The Globe and Mail. For New Brunswick and Alberta, respectively, that age group represents as much as 10 and 11 per cent of their nursing-home population. (Newfoundland and the Northwest Territories did not have figures; Nunavut and Quebec did not respond to requests for them.)
"People don't know that this is going on," said Cameron Crawford, president of the Roeher Institute, a public policy group that studies disability issues. "It's totally inappropriate to have young people in nursing homes. . . . Provincial governments know they have a problem on their hands."
Younger, disabled adults usually arrive in nursing homes after they have exhausted all other routes, fallen on hard times, lost family support or suffered an illness that makes it impossible to obtain enough services to live independently.
"There's a lack of accessible disability supports. There's not enough of them, and when there are government-provided programs, they are very hard to access," Teren Clarke, national director of programs and services for Muscular Dystrophy Canada, said in a telephone interview from Edmonton.
Whatever their route to a nursing home, there is one thing about which the disabled and policymakers can agree: No young person should reside in a seniors institution. The average age is high (83, for example, in Ontario); dementia is commonplace, and stimulation is low. Many of these young people become stranded, cut off from family and friends.
According to a new Canadian Healthcare Association report, there are "younger persons with disabilities living in [nursing home]facilities, often inappropriately located in units with confused elderly residents."
The 160-page report on long-term care states that these younger persons "cannot communicate with elderly residents and do not share common interests with them. These younger residents may experience debilitating social isolation and dependency, although the physical care that they receive in long-term care facilities may be excellent."
The issue isn't about to go away. Disabled people are living longer because of good medical care; car-accident victims are surviving with brain injuries, and premature babies are being saved at earlier gestations, sometimes at the cost of a disability. The needs of disabled people can become more complex as they age.
Though the problem is just hitting the radar in Canada, it has been well documented in other parts of the world. In Australia, fewer than 5 per cent of nursing-home residents, about 6,300, are under age 65.
"They've thrown them on the scrap heap," Bronwyn Morkham, project officer for the Young People in Nursing Homes National Project, an advocacy group, said in a telephone interview from Melbourne. "Most of these young people want to be productive, but they are denied the chance to even do that."
In the United States, the problem is so widespread that disability groups run a campaign called Free Our People. Litigation, civil disobedience and advocacy are being used to help thousands of young, disabled people return to their communities from nursing homes.
Judging by the numbers, the advocacy group has a lot of work ahead: Thirteen per cent of U.S. nursing-home residents -- about 182,000 people -- are under age 65. Of those, 15,000 are under 30, according to Bob Kaska, national organizer for ADAPT, a national disability-rights group.
"It's almost as if young people with disabilities are being put in prison," Mr. Kaska said in a telephone interview from Austin, Tex. "People are being incarcerated for the crime of having a disability."
Asked if there are some young disabled people for whom a nursing home would be appropriate, Mr. Kaska said: "There is not one person -- I don't care what their medical condition -- who cannot live in the community."
MP Steven Fletcher, the federal Conservative health critic, was faced with living in an institution after a car accident. In 1996, when he was just 23 and working as a mining engineer in northern Manitoba, his vehicle hit a moose.
"I am completely paralyzed from the neck down," Mr. Fletcher said in an interview. ". . . I was faced with a nursing home, which is basically a ghetto for people with severe disabilities. I had to fight like crazy to stay out of the institution."
He now lives alone in his own Winnipeg home and has health-care aides 24 hours a day, paid for in part by automobile insurance.
The phenomenon of young, disabled people living in nursing homes is a "dark secret," Mr. Fletcher said. ". . . All too often we file people away with disabilities so we're not reminded of our moral obligation." He stressed that he was speaking from personal experience, not as his party's health critic.
Society, he argues, has a moral duty to "provide the tools to allow people to live meaningful lives."
Meaning is difficult to come by in a nursing home, where life is far more circumscribed: Meals are at set times; a bath is provided once or twice a week, and activities, such as the beanbag toss, are clearly geared for the aged. Visits from family and friends can begin to feel more like a matter of duty than pleasure.
For some, there are no visits at all.
Bill Oliphant moved into a 172-bed Oshawa nursing home in May, 2003, when he was 49. He had begun to fall as his myotonic dystrophy, an inherited disorder in which the muscles contract but slowly lose their power to relax, grew worse. He is also developmentally disabled.
Before moving to the Wynfield, he lived in a small group home, which he enjoyed. He worked cleaning a church, went out with friends and got around on his electric scooter. There was always someone to grab a coffee with, and conversation came easy. The dream of finding a woman to marry didn't seem that far off.
Though he receives good care and there are many activities at the nursing home, it is not the life Mr. Oliphant wants. He said visits from family are rare and friends complain of repeated car trouble as their reason for not stopping by. That leaves him lonely, staring at the walls of his private room.
"I don't like it here at all; there's nothing to do around here," the 50-year-old said in an interview. "A lot of people have died since I've been here."
According to Don Gallant, senior policy adviser for the Canadian Association for Community Living, an advocacy group that represents the developmentally disabled, "When you ask a disabled person what is worse, living in a seniors home or in an institution, it's like asking: 'What is worse, getting shot or getting stabbed?' "
Some institutions do try to make the most of the experience for young adults. One such place is Castleview Wychwood Towers in Toronto, which set up a 19-bed younger-adult unit six years ago. Many residents who live in it have neurodegenerative diseases or multiple sclerosis or have suffered a stroke.
"I think many of the people with us may have reached the maximum services they can get in the community," assistant administrator Nancy Lew said. ". . . There are certain points that people reach where there may not be enough resources."
That is a problem across the country.
Nancy Marshall, who has cerebral palsy, has lived on her own since she was 20, but a depression, for which she was hospitalized, affected her mobility and left her unable to use her walker.
Because she could not obtain enough attendant care, which she says would have allowed her to stay in her Halifax apartment, the 38-year-old had to move into a nursing home in September. At Arbourstone Enhanced Care, she shares a room with a quiet older woman.
Arbourstone's administrator, Christine LaBreche, said that about 50 young adults live in the 190-bed nursing home, adding that "some could be looked after in the community but home supports are not there. . . . Their families are getting elderly and can't care for them on a 24-hour basis."
Such was the case for Stan and Betty Mills. They placed their son, Steven, 44, who has cerebral palsy and developmental disabilities, in a nursing home almost two years ago because that was the only option in the small, south-central Ontario town of Port Perry where they live.
When Steven was a toddler, he had a heart valve operation that involved a shunt. After the surgery, his heart stopped, and during the resuscitation the shunt travelled to his brain, putting him in a coma for three months, his father said. That, Mr. Mills said, is how Steven became disabled.
"He was staying at a hospital for a number of years but then had to leave because they said he was too healthy, though he cannot speak or walk," he said. "They threw him in the nursing home, and that's it. . . . It's very depressing for him. He's such a lovable kid."
When governments are asked what they are going to do to fix this problem, answers are not easily obtained. Responsibility rests on various levels of government in the departments of housing, health and social services.
Peter Graham, director of communications for Joe Fontana, the federal Minister of Labour and Housing, said the government has announced $1-billion for new affordable housing for the vulnerable, which includes those with disabilities, under agreements signed in 2001.
Under those agreements, the provinces and territories match the funds by 40 per cent and the local community can contribute as much as 10 per cent. Only British Columbia and Quebec have spent or allocated the first phase of their money, according to Mr. Graham.
Stephanie Nadalin, spokeswoman for Ontario's Community and Social Services Ministry, said 1,200 developmentally disabled people are living in nursing homes in the province. She directed further questions to the Health Ministry.
Ontario Health Ministry spokesman Dan Strasbourg said requirements are in place to ensure the needs of younger residents are assessed and met, adding that "long-term-care homes [nursing homes]are also required to develop activities and programs that are appropriate for all ages, including younger residents."
David Dear, a spokesman for Alberta's Health and Wellness Department, said the "unfortunate reality" is that for some who require heavy care, the only option is a nursing home. However, he stressed that the government recognizes the importance of home care, what he called "one of the fastest-rising costs in health care."
Sharon Sholzberg-Gray, president and chief executive officer of the Canadian Healthcare Association, said a key issue is what taxpayers are willing to pay to ensure a high quality of life for all Canadians.
"By and large, the overwhelming consensus is that these people should be living as independently as possible," she said. "But on the other hand, it's not like the public can spend $100,000 having round-the-clock attendant care."
Traci Walters, national director of the Canadian Association of Independent Living Centres, which provides a resource service to 200,000 disabled people a year, said a "fortune" is being spent institutionalizing disabled people when they could be working and paying taxes if they had proper supports.
Those supports include accessible housing, funding for technology and equipment such as wheelchairs, attendants to help with bathing and dressing, transportation to jobs, and homemaking services. In other words, all those things allow the disabled to live independent lives.
"It's pathetic to see young people in there [nursing homes]" Ms. Walters said in a telephone interview from Ottawa. "They're rotting physically and mentally."
As for Donna Green, she wishes she had had another option for her daughter Terona, who moved into Toronto's Leisureworld Caregiving Centre-St. George more than two years ago.
Nineteen-year-old Terona had severe cerebral palsy, suffered from depression and hated being disabled, according to her mother.
"She would talk about killing herself; we looked for other places [such as small group homes with people Terona's age]and she would jeopardize it," said Ms. Green, 42, adding that her daughter's behaviour could be destructive.
Christine Nuernberger, director of public relations for Leisureworld Caregiving Centre's corporate office, said that privacy issues prevented her from commenting about Ms. Green, but said the St. George site has a "disproportionate number of young adults" and workers try to meet their unique needs and do their best for them.
Terona, already depressed before she went into the home, grew even more sullen as time passed.
Eventually, "she lost her will to live and she wanted to die," her mother said. On April 26, at 21, she died of pneumonia in hospital.