Published On Fri Feb 16 2007
Becky Till is shown with her friend John Hickey. Now 34, she was in a nursing home when her family adopted her in the 1980s and Becky’s parents fear that when they get too old to care for her, she could end up back in a long-term facility.
Trish CrawfordLife Writer
Developmentally disabled adults, some as young as 21, are quietly being moved into nursing homes because the Ontario government has nowhere else for them to live.
While the province is closing down one set of institutions for those with developmental disabilities – the regional centres – it is using long-term care facilities to house more than 1,600 other people with developmental disabilities.
The developmentally disabled languish there – surrounded by the frail elderly receiving end-of-life care – while waiting for scarce residential placements in the community.
Todd Matthews, 44, who has Down syndrome, lived with his mom in Newfoundland until she died three years ago. Today, Todd lives at the Avalon Retirement Centre in Orangeville with people twice his age while he waits for a placement in a group home. He will probably have to wait at least five years.
Cindy Matthews, his sister-in-law, brought him to Ontario and sought the assistance of Community Living Dufferin County to have him in her home.
She received $2,500 a year to pay for support workers and Todd was placed in a day work program. But it wasn’t enough to give him the 24-hour supervision he needs and Cindy burned out. Although gentle and well-behaved, he might walk outside without a coat, burn himself on the stove or be frightened by an emergency.
“I would like him to be with his peers in a group home,” laments Cindy, 50, who works in the same nursing home and sees Todd every day.
Todd’s home now is a four-bed ward. “I think he deserves better,” says Cindy.
Karen Jobbins, 52, successfully lived in the Bracebridge community for 49 years, but her world fell apart when her elderly mother’s health failed three years ago.
When her mother became ill, sister Debbie Vernon moved Jobbins into her home and tried to care for her while requesting around $40,000 a year to support the disabled woman full-time in her own rented accommodation. Part of that plan allowed for a roommate to live rent-free in return for providing overnight care.
This may seem like a lot of money, but Vernon points out the government is spending more than that – roughly $46,000 a year – to put her sister in the nursing home. When Vernon was turned down for funding and no appropriate group home could be found, Jobbins had to move into the Pines Long Term Care Facility.
Vernon is heart-broken that her sister has lost contact with all the people she used to see in the community as she went about her activities, and that she no longer gets to go swimming regularly. She is also sad she had to break a promise to her now-deceased father that Jobbins would never be institutionalized.
In an email she writes, “Unlike the very elderly people she lives among, Karen is waiting to live.”
Professor Patricia Spindel, a senior advisor for Community Living Ontario for almost a decade,has been studying the movement of the developmentally disabled into nursing homes for more than a decade. A professor of family and community social services at the University of Guelph-Humber College, she wrote her PhD thesis on the long-term care sector. After Ontario stopped placing children with developmental disabilities in nursing homes in the 1980s, Spindel says she thought that issue had been put to rest.
However, after a brief lull, a new trend involving adults began and Spindel started tracking the new “institutionalization” of the developmentally disabled into nursing homes.
The huge increase of nursing home beds in recent years produced, in some jurisdictions, an over-supply of beds, she says, so that funnelling the developmentally disabled there has helped keep the nursing homes lucrative and filled. She points out that nursing home beds are relatively cheap – cheaper than spaces in either group homes or regional centres – and many of the homes are for-profit enterprises.
Spindel discovered that people with developmental disabilities are, on average, 31 years younger than the general nursing home average age of 83. Some are as young as 18.
A Ministry of Health and Long-Term Care report in October states that the 1,691 developmentally disabled residents in nursing homes are physically healthier, more independent and use less medication than the elderly residents. As well, they have one-fifth the physical care needs of the elderly residents.
On the other hand, they are two to three times more likely to have behaviours such as agitation, anxiety, demands for attention, hoarding and aggression.
Barb Gauntlett, of London, Ont., a developmental support worker for the Alice Saddy Association, has more than 40 developmentally disabled clients living in nursing homes and says “20 don’t belong there.”
One client, whom she succeeded in getting moved out into a home, was only 21 years old.
One of the causes of the movement into nursing homes was the closing of area regional centres for the developmentally disabled, she says. With insufficient resources in the community, people “are not given choices” and end up in nursing homes by default, Gauntlett notes.
The death of a care-giving parent often sets the stage for a move to a nursing home, she says, as waiting lists for residential placements in the community are lengthy. London has a waiting list of 250 (Toronto’s list has more than 2,000 people).
One of her clients, who is 60 years old, has told her, “I would rather live in a house,” and Gauntlett says that shouldn’t be an unreasonable goal.
“Who wants to be in a nursing home? It’s the new institution, the new dumping ground.”
As Janis Jaffe-White, volunteer co-ordinator with the Toronto Family Network, a parent support group for families coping with developmental disabilities, puts it: “People are just being moved from one institution to another.”
She adds, “If the Ministry of Community and Social Services provided adequate community support, then families would not have to resort to nursing homes. I have lots of families at risk and this is not an appropriate action.”
People interviewed for this story wanted to be clear that they were not criticizing nursing home staff for their care nor questioning the need for such places for the frail elderly. But they have serious questions about the appropriateness of putting younger people with developmental disabilities into these homes.
An inappropriate placement may be responsible for the death of 59-year-old Keith Croteau on Jan. 25 following an alleged beating by another developmentally disabled resident of a Sudbury nursing home.
His sister Sandra says Keith lived successfully in the community with supports until his mother’s death in 2001. He suffered a major depression and wouldn’t eat or take care of himself and ended up needing round-the-clock care. Upon the advice of Keith’s community worker, the family decided to place Keith in the Extendicare York nursing home, she says.
When a roommate – a much older man – died, Keith was upset, Sandra remembers. “He said, `I’m going to die in here.'”
However, he adjusted over time and Sandra felt “he was being taken care of and he was doing good.”
Fellow Extendicare resident, Bryan Belliveau, 55, who also has a developmental disability, has been charged with second-degree murder in Keith’s death. Sandra has asked for an inquest and questions how Belliveau was selected as her brother’s roommate.
The developmentally disabled who need extra care shouldn’t be lumped into nursing homes with the elderly, Sandra says. “There’s no place for them to go. There are only three institutions left and they are closing them. A 59-year-old wants to be out, doing stuff.”
Sudbury-area MPP Shelley Martel agrees that younger people with developmental disabilities aren’t a good fit in long-term care facilities.
“My concern is that long-term care is inappropriate for them by age and inappropriate to have their needs met.”
Last July, the social services ministry signed a protocol with the health ministry spelling out the procedure for moving the developmentally disabled into nursing homes if there are insufficient community-based resources.
“It’s sick. It’s perverted, ” says Linda Till, 52, who rescued her adopted daughter Becky, now 34, from a nursing home when she was 11 years old. The uproar over the plight of children in nursing homes resulted in a ministerial decision in the mid-1980s to stop sending children to them.
Now, Till foresees a similar battle to keep the older developmentally disabled out of nursing homes.
“It’s regressive in the extreme,” says Till. “But it is consistent with the response to the developmentally disabled by government and the general public. It permeates every element of society. We have an aversion that is unexplained. We shuttle them off to be hidden.”
Till lives in Sharon, north of Newmarket, and fears that when she dies, Becky may be forced back into the kind of nursing home she was freed from as a child.
Keith Powell, executive director of Community Living Ontario, wants Social Services Minister Madeleine Meilleur to invest in more community placements so young people with disabilities don’t have to go into nursing homes.
“What alarmed us (about the protocol) was the clear direction to think about moving people out of community and into long-term care,” says Powell. “This is entirely inconsistent with what we were being told (by government).”
After more than 50 years of working with the developmentally disabled, Powell says his agency “knows that in an institution there is a huge risk and a huge price to pay.”
Meanwhile, Cindy Matthews does her best to make sure Todd has as normal a life as possible. Todd has been allowed to continue in his day program out in the community where he earns spending money by doing piece work. It helps to pay for his cable and telephone in the nursing home.
There have been glitches, such as when a bout of flu closed the nursing home for six weeks and Todd wasn’t allowed to leave. But he is used to being around the elderly, having lived his whole life with his mother and grandmother.
Todd is actually a good caregiver, says Cindy, adding he used to put his mother’s blankets in the dryer to warm them up when she was ill. He also helps set the dinner table and can do other useful tasks for the other residents.
Cindy’s number is on Todd’s speed dial and she talks to him every evening as well as throughout the day while she is at work scheduling staff.
Both she and her husband Harry, Todd’s brother, are 50 and working full-time. They want to do their best for Todd and are hoping that, one day, he will be able to live in a house with people his own age.
At 44, Cindy says, “Todd deserves to live in the community and to have his own room.”
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