Ontario braces for a grey wave
TheStar.com – Atkinson 2008: BOOMER TSUNAMI – Ontario braces for a grey wave
Nov 08, 2008. Judy Steed, Special to the Star*
In Toronto’s literary and cultural circles, she is a strong presence – the internationally respected Phyllis Grosskurth, Ph.D., Order of Canada, English professor and author of acclaimed biographies of John Addington Symonds, Havelock Ellis, Melanie Klein and Byron. She also wrote The Secret Ring: Freud’s Inner Circle and the Politics of Psychoanalysis.
Grosskurth, 83, had a stroke seven years ago.
“They say I’ll never walk again,” she says, calmly — as elegant as ever, sharply defined by her wry humour and inimitable approach to life. She’s still got her “eagle eye,” loves to gossip, ferret out stories, ask blunt questions.
Did she learn anything useful from her studies of psychoanalysis, anything helpful for this stage of her life?
“Yes, I did.” She pauses. “Acceptance. It means I’d love to be young, to be swimming, to be cooking and gardening, but I can’t do any of those things any more. There are compensatory things.”
“Voltaire said, ‘Cultivate your garden.’ “
Aging – it’s better than the alternative. And the older we get, it seems, the longer we want to live – and, indeed, are living.
“There’s a demographic tsunami headed our way,” says the University of Toronto’s Dr. Alejandro Jadad, a physician with a special interest in public health. Like almost every other developed country, Canada is greying, big-time, as the population bulge known as baby boomers closes in on senior status, with the first wave turning 65 in 2011. They will live longer than their forebears; not only has Canadian life expectancy doubled in the past century, to 82 for men and 85 for women, but many more of us will live to be 100.
By 2050, a quarter of Canada’s population will be 65 or older.
What on earth will we do with all the elders? Stack them, bunk-bed style, in the province’s 622 nursing homes? Cut them loose on melting ice floes?
Many critics lambaste Ottawa for its failure to develop a national strategy to cope with the massive numbers of aging Canadians or to create a national home-care program for seniors.
Ian McDowell, the epidemiologist who led the federally funded Canadian Study of Health and Aging – the world’s largest study on the prevalence of dementia – says Ottawa’s policy-makers haven’t got a clue.
McDowell’s team looked at 10,263 people, aged 65 and older between 1991 and 2001, and found that by age 85, one-third of us will have dementia – a range of brain diseases including Alzheimer’s. They also identified risk factors and preventive measures.
But McDowell says he was unable to elicit much interest from federal policy-makers.
“They appeared to be completely unable to identify a single policy that could be useful in relation to seniors and aging.” On one of the “major issues of our time,” as he puts it, Canada’s federal government was “deaf.”
About a week after the stroke, Grosskurth asked a hospital intern about her future prospects. “I kept nagging him about my condition. Would I recover? Finally, he said to me, `I think you’ll be in a wheelchair for the rest of your life and never be able to get out of bed on your own again.’ That hit me hard. My children were quite angry at him.”
Grosskurth’s husband of 28 years, Bob McMullan, 84, set about adapting their cozy Cabbagetown home to their new life. “No sensible person would have tried to retrofit an 1870 Victorian semi-detached cottage,” he says cheerfully. They went ahead and did it: a discreet ramp at the front door for her wheelchair; a ground floor washroom built off the kitchen – “I lost my pantry,” Grosskurth says. A chair lift was added to the side of the narrow stairs; grab bars in the upstairs bathroom; a floor-to-ceiling pole beside the bed. “I didn’t want the pole,” Grosskurth says, “but it’s very useful.” When McMullan helps her out of bed, she can brace herself against the pole.
He laughs about their “crazy optimism. We believe in mission impossible.”
Ontario has a serious problem: health care consumes $40.4 billion of the province’s $96-billion budget. Its 157 hospitals receive $18.4 billion. Despite massive spending, the system is overburdened with wait lists, emergency rooms clogged with old people and “bed blockers” – seniors stuck in hospital, at a cost of $200 million a year, because home care is inadequate and nursing homes are full.
Former health minister George Smitherman took decisive action last year by introducing the Aging at Home initiative, which has expanded from $700 million over three years to $1.1 billion over four years to help seniors remain independent in the community as long as possible.
Nicknamed “Furious George” for his often-aggressive style, Smitherman needed every ounce of tenacity to turn around the Titanic. Redirecting the focus of the health care system – along with money and power – away from hospitals and institutions to the community sector has been no easy task.
“I think of the hospital as the goalie of the hockey team,” says Hy Eliasoph, a prominent health-care administrator. “In the past, we invested in the goalie, gave him the best possible equipment – just as we poured resources into hospitals and starved the community. Now we need a strong offence, a strong focus on primary care, prevention and health promotion, with home care as the defence.”
The shift in Ontario policy makes perfect sense as baby boomers enter their later years, says Shirlee Sharkey, president and CEO of Saint Elizabeth Health Care, a not-for-profit that provides a wide array of home care services to Ontarians.
“Older seniors are typically more accepting,” she says. “Younger seniors – the boomers – are more assertive. For them – for us – it’s a given that we’re staying at home as we age; nobody’s going to ship us off to nursing homes when we’re not ready to go.”
Ontario has 75,973 beds in nursing homes, and it costs $43,000 per person per year for a place in long-term care.
By contrast, the annual price tag of home care is about $3,000.
“There’s a sense of optimism in Ontario today,” says Margaret MacAdam, a Toronto gerontologist. “Our health-care system is being transformed to care for people at home, in the community, as they age, and we don’t know what will work exactly.
“No country has a perfect system, not even Sweden and Denmark. They’re the gold standard. They’re worried about sustainability, as we are – but we’re reaching for it.”
Health Minister David Caplan took over stewardship of Aging at Home when Smitherman became Minister of Energy and Infrastructure in June. “George did a lot of heavy lifting around system reform,” he says.
As Caplan sees it, his job is to ensure that the system advances swiftly, keeping its focus on what seniors want and identifying “best practices” to be applied across the province. “I want to support a health-care system that allows people to take risks and try new things. Innovation should be a hallmark.”
To enable communities to make decisions about health care locally, in 2006 the Ontario government divided the province into 14 Local Health Integration Networks (LHINS), aligned with 14 Community Care Access Centres (CCACs), which provide free home care from cradle to grave and control access to long-term care facilities.
If Grosskurth went into a nursing home, “I would want to go as well,” McMullan says. “We’re taking the riskier route; it’s more life enhancing. We’re not going to leave our home until we absolutely have to.”
Says Grosskurth: “Some people give up when they’re told they can’t walk. I have physio once a week. We’re working on me standing.” A personal support worker comes four days a week from the Community Care Access Centre, for two hours a day. Grosskurth is one of the lucky ones: she can afford to pay for an additional helper to come three days a week while McMullan is at work.
Does the Community Care Access Centre provide a sense of security? “No. The PSWs from the CCAC are not trained, they often can’t speak English well and have trouble comprehending what I’m saying,” Grosskurth says. “It’s stressful, trying to explain what I need, having to deal with a different person all the time. The days Lucille (her private caregiver) comes are glory days for me. She knows what to do, she knows what I like, and she’s reliable.”
As for the CCAC’s policy on wait lists for nursing homes, Grosskurth and McMullan think it’s all wrong. “We put our name down for Belmont House and a place came up,” McMullan says. “We said no – we weren’t ready to go – and the woman warned us, `There are an awful lot of people who want to get in to Belmont House.’ The truth is many people go to nursing homes when they really don’t have to.” The CCAC should change its wait list policy so that “you don’t have to jump at a room when you could still be living at home,” he says. ” Isn’t that what the government is trying to encourage?”
The first major initiative for the LHINs is Aging at Home. It will be delivered through the CCACs and community agencies – such as St. Christopher House or Mid-Toronto Community Services – that provide home-delivered and communal meals, recreational and social activities, and transportation.
The CCAC system is incredible in its reach – every day, the province’s 14 CCACs are in contact with 200,000 clients, linked to 158 hospitals, 622 long-term-care facilities and thousands of community support agencies.
With a staff of 7,000 across Ontario and a budget of $1.7 billion for 2008/09, CCACs procure and manage the delivery of services from both non-profit and private agencies, including nursing, physiotherapy, nutrition counselling, occupational therapy, personal support, housekeeping, transportation, palliative care, and in-home diagnostic and lab procedures and dialysis.
In the new year, a new telephone number will be launched (310-CCAC) as a one-stop shop for home-care services.
Before you can get free services, a CCAC case manager must visit you to assess your needs, approve you and develop a personal care plan – which could include personal support, grab bars in your bathroom, or nursing services, if needed. “As long as you’ve got a health card, we’ll provide free services that are paid for by OHIP,” says Margaret Mottershead, former deputy minister of health and now CEO of the province’s Assocation of CCACs.
The CCAC can also refer you to community agencies for day programs or Meals on Wheels — which will cost you about $5 per meal.
“We don’t want to come in and take over your life,” she notes. “We’re partnering with you – that’s the tone. If you can’t make calls to arrange appointments, we’ll help you.”
Camille Orridge, head of the Toronto Central CCAC, says the focus is on the individual. “It’s not a cookie-cutter approach. You get what you need, based on your condition, and we work with you to maximize all possible resources.”
If the promise of Aging at Home is fulfilled, it will transform home care in Ontario. But as it rolls out across the province, problems are apparent.
• The CCAC system is already stretched to the limit. Each year there are 17 million personal-support and homemaking visits.
A maximum of 90 hours of home care a month is available to most people, or about 24 hours a week, on a long-term basis. For three months or less you can get 80 hours of home care a month.
For some, that isn’t enough. As we become more frail, we need simple home supports – cleaning, cooking and shopping, which are proven, cost-effective ways to keep seniors independent. But once we’ve used up our allotment, what then? Institutionalization, at a cost of $43,000 per year?
The lack of resources means serious mistakes are made. The Star’s Moira Welsh reported last October that Olivia Chow’s 83-year-old mother was “overlooked” by the CCAC for two weeks “while a surgical wound in her stomach grew raw and infected.”
The CCAC doesn’t provide enough care to keep Grosskurth at home, and if the couple couldn’t afford private support, she would have to be in a nursing home, which would mean giving up her little garden. The day will come when McMullan can no longer lift her, but he lives in a state of healthy denial, he says. “Pat and I are Siamese twins. Her paralyzed left side is the only thing that’s wrong. She’s got all her marbles. We have fun, we go out, we travel.”
• Paul Williams, a professor of health-policy management and evaluation at the University of Toronto says that while he’s “optimistic” about the evolution of LHINs and CCACs, he thinks the Aging at Home strategy is too fragmented. “We need a system that enables community agencies to access the full array of services seniors need.”
People in rural areas have few options in terms of aging at home, he says. And CCAC case managers have limited budgets or, in some cases, don’t have access to services people need.
• There is no formal system for sharing the innovations and “best practices” Caplan says he wants to promote. “LHINs are loaded with planners and administrators,” according to a health-policy expert, “but they don’t have enough `content’ people with knowledge and experience of care delivery.”
“There’s a sense that some LHIN managers are afraid to take risks,” says another health-policy expert. “Some are being cautious and just putting money into long-term care.”
• Experts note that Alberta stopped the regionalization of its health care system because of fragmentation and wildly varying services across the province.
• The lack of supportive, affordable housing for seniors is a huge problem across Canada. Out of 66,828 households on Toronto’s Housing Connections wait list, 17,126 are seniors. One-third of Toronto’s seniors are single, living below the poverty line.
Roy Romanow, head of the Royal Commission on the Future of Health Care in Canada, says the Canada Health Act should be expanded to include a national home-care program, allied with an affordable-housing strategy. “They go hand-in-glove, and they’re what the aging population needs.”
• Not everyone can stay at home, and more seniors will need long-term care as baby boomers join the ranks of the old-old. Already, elders encounter long wait lists for their top nursing-home choices and have to accept placements they don’t want.
• Another weakness is the failure to strengthen crucial community agencies. “Our entire sector gets only 3 to 4 per cent of the health ministry budget, and our community agencies are hanging on by our fingertips,” says Kaarina Luoma, executive director of Mid-Toronto Community Services, which attends to people in the low-income Regent Park and Moss Park neighbourhoods. Among many other things, Mid-Toronto provides hot meals, outings and other activities that include Alzheimer’s sufferers.
Luoma laments the fact that, with hospitals and physicians getting the lion’s share of funding, community agencies “have been expected to do so much with so little, without fanfare, for so long.”
“There seems to be a disconnect between the pronouncements and the reality,” says a Mid-Toronto board member, a lawyer who asked not to be named. “If the ministry is serious about wanting to keep people at home, out of hospitals and institutions, it’s agencies like ours that are the linchpin in the strategy. The LHINs aren’t communicating well with agencies like ours.”
Spiffy offices have been set up for LHIN planners, with shiny new technology and furniture – while the threadbare community agencies stretch their dollars.
How much more money are the community service agencies going to receive? Despite repeated questioning up and down the chain, no one has an answer.
In these troubled times, there’s a danger that our sense of urgency over the aging population will be dampened by economic realities. Several weeks ago, Ontario Finance Minister Dwight Duncan announced that the global economic slowdown – recession? depression? – meant the decline of government revenues and the ballooning of a $500-million deficit that, no surprise, will result in reduced funding for many programs, including delays in hiring 9,000 nurses and setting up of family-health teams.
However government sources insist that Aging at Home remains a priority. In fact, if the promise of the initiative is fulfilled, Ontario could be one of the best places in the world to grow old.
That’s a big if. It’s up to citizens, now, to make sure it stays on course.
“The big thing I haven’t said is that I’m not writing anymore,” Grosskurth says. “People tell me, `You must be writing,’ but it’s so embarrassing. I can’t. I don’t have the energy. All the starch seems to have been knocked out of me.”
Still, she seems happy. “I love this little house,” she says, smiling at her husband. “I have a loving family and lots of friends. The companionship of Bob… I couldn’t do it without him.
“I tell old people: you have to pay attention to what you like, what gives you pleasure. I love clothes. I love food. I still cut out recipes even though I can’t cook any more. I love to read. If you love reading, you’ve got it for life. I’m grateful to my friends and my children. I know there are grand gardens around the city but I couldn’t be happier with my little garden.”
“No matter what,” and here Grosskurth leans forward for emphasis, eyes sparkling: “Cultivate your garden.”
BY THE NUMBERS
According to Statistics Canada, the number of people 65 and older is expected to reach 6.7 million by 2021.
Twenty years later, that figure will climb to 9.2 million, with 1.6 million age 85 and older. Meanwhile, the proportion of children and young people is expected to continue declining for another half-century.
The Ontario Ministry of Finance forecast in 2006 there were about 1.6 million people age 65 and older in Ontario, accounting for 13 per cent of the 12.7-million population. That seniors group will more than double to 3.5 million – representing more than 21 per cent of the province’s population – by 2031.
* THE SERIES
Toronto journalist Judy Steed has been writing about social issues for 30 years. Last fall, she embarked on a one-year project to document the most pressing policy implications of our aging society as part of the 2008 Atkinson Fellowship in Public Policy.
She has visited dozens of nursing homes and interviewed hundreds of health-care workers, policy-makers and seniors to present this weeklong portrait.