Like many Canadians who watched news footage of nursing homes during the COVID-19 lockdown—the blurred faces looking out at families on the other side of the window; the masked and exhausted staff; the terrifying ongoing tally of the infected and dying—I made a pact with myself that there would be no old-age home in my future. How I’d make that so, however, was as blank as a sheet of paper. Or it was until the cold Tuesday afternoon I joined the raucous soup social at the Stanley Knowles co-op in midtown Toronto.
On the outside, the co-op is a nondescript brown-brick low-rise. But inside is a social movement that could change the future for the 2.5 million Canadians moving into their peak care years like a thundering avalanche (the silent generation we are not). Many of those older Canadians are moving out of their single-family homes and into multi-residential buildings, looking for the same kinds of things: a turnkey operation, so they can spend less time on maintenance; no stairs; less economic pressure; easy access to amenities; and, especially, a built-in community of people who value their autonomy and independence. People who are prepared to “do everything they can” to avoid being housed in an institutional setting, according to a National Institute on Aging and Canadian Medical Association survey of Canadians sixty-five and over.
“All of us here have many people who died in nursing homes during COVID.” Christina Doyle, my tablemate at the Tuesday soup social and a resident of Stanley Knowles for thirty-nine years, waves her hand around the packed room. There’s a lot of joyous and possibly competitive picture sharing on iPhones, along with shouts of “Who needs a ride tomorrow?”, plus I can’t stop watching two guys poking around at the ceiling panels over by a large flat screen TV. “The government’s big idea is to take us out of our environments instead of keeping us in our homes,” says Doyle, eighty-three. Ontario premier Doug Ford’s controversial More Beds, Better Care Act of 2022 can move aged, extended-stay hospital patients to nursing homes as far as 150 kilometres away. “It isn’t the way any of us want to go.”
And now it doesn’t have to be, thanks to something called NORC, which stands for naturally occurring retirement communities. Toronto’s University Health Network (UHN) runs a NORC program designed to help people age in the place of their choosing by bringing services to where older Canadians have already congregated in large numbers. In Toronto, that mostly means the boom in high-rises that is quickly changing the skyscape of the city. Stanley Knowles is one of the first of Toronto’s now twenty-three operational NORCs.
“The question was: How do you make a model of an aging community?” I’m talking on the phone with Jen Recknagel, the director of innovation and design at UHN’s NORC Innovation Centre. “And the answer was: Start with where they are.”
That NORC is not trying to create something new is the most radical thing about it. Instead, it’s energizing or “catalyzing”—a popular NORC word—an existing movement of a whole bunch of people with similar needs living under the same roof. People who value being “members of a community where their voices and opinions matter,” says Recknagel.
To qualify for UHN’s NORC program, those pre-existing communities need to have 30 percent or more adults aged sixty-five and over; 76 percent of Stanley Knowles residents, for example, are sixty-five and older. Once NORC is established in a building or community, UHN delivers a variety of health and social supports, coordinating a network of care partners to bring in things like talks from paramedic teams, vaccine clinics, exercise programs, and social events—whatever the community itself decides it wants most.
NORCs have been successfully operating in New York City since the mid ’80s and are even publicly funded there. But in Canada, they’re little known outside of Toronto—and hardly known there either. Rental apartment buildings, condos, and co-ops like Stanley Knowles are what are known as vertical NORCs, while a horizontal NORC might be any congregation of single-family homes within a specific geographical area. (UHN does not currently have any horizontal NORCs in its program.) So far, there’s no open application process to join UHN’s NORC program, but there is a do-it-yourself (DIY) guide for people interested in starting up an aging-in-place network in their own community.
“What used to happen when we needed help was we’d call around to our local MPPs and social service groups, trying to figure out what was available in our catchment,” Doyle says. “They were all so busy and overworked.” Having helped navigate my parents through the gauntlet of assisted home care, I’m familiar with the acres of time it can take. Doyle heard about NORC in 2020, during lockdown, and immediately investigated how her co-op could join. Today, nurse practitioners, monthly check-ins with paramedics, equipment sharing, foot doctors, and social events like the one I’ve joined today are all supported and sometimes funded by NORC. And, vitally, after Doyle fractured her pelvis last summer, the NORC nurse practitioner quickly arranged for her to go to the hospital for X-rays and then to to rehab after surgery. When Doyle came home, the NORC occupational therapist came to see how she was doing, checked her apartment for tripping hazards, and helped Doyle choose a walker. Without any these supports, Doyle might have easily been moved to a long-term care facility, the place she dreaded most. In the future, Doyle would love to see one or two personal support workers working full time in the building, but for now, “NORC is here for what we decide we want and need.”
“More bike racks out front, add that to the list,” says a fit man carrying a helmet as he joins our lunch. Howie Abrams turns out not to be a co-op resident but a general internist at Mount Sinai Hospital and UHN and one of the initial movers behind NORC in Toronto. “I saw too many seniors abandoned to understaffed hospitals, with nowhere else to go but government-run nursing homes, to believe that there couldn’t be a better way.”
Abrams says there’s a ton of great research going on but very little practical help for our aging population. He is the director of UHN’s think tank, Open Lab, of which NORC is an offshoot. “You need to approach a problem like this with humility, because you don’t know the answer; you often don’t even know the question,” he says. “Success is when a resident comes to me at an event like this with a new idea.”
I ask if all twenty-three active UHN NORCs are like this one, and Abrams gives me a quick tutorial: There’s no right model to “catalyze” a NORC. Some have full- or part-time NORC staff on site (Stanley Knowles has a staff member three days a week); others are run by the residents themselves, using NORC simply as a resource. The program is funded by a “very generous and anonymous private donor,” Abrams says. Abrams and Recknagel are ambitious for their model to be repeated across Canada, with NORCs integrated into and supported by Canadian health care systems. “It’s twenty-first-century integrated care using community-led solutions for aging in place with dignity and choice.” Abrams could be reading this from a brochure, but he isn’t. He’s just passionate about NORC. “Who can argue with that?” he says.
When I wonder aloud if there are any NORCs in my neighbourhood, Abrams shows me the data map of the nearly 500 potential NORCs in the city, and I’m surprised and pleased to see at least four of them are a few short blocks from where I live. I like the idea of staying close by if I move to a place that is less demanding than my house but is not the dreaded nursing home. I’m not sure I’m a community person, though. I like being on my own.
“True, some people just aren’t community oriented,” Abrams says. But he also points out that social isolation is a huge risk factor for health issues. And “even bacteria form communities.” Abrams looks at me. “You are a community of bugs. There are more bugs in you than you.”
Plus, there’s the neighbour capital: retired CEOs, lawyers, plumbers, electricians, doctors, and engineers could be living right next door. “Can’t open a can? Can’t change a light bulb?” (My regular bottle of cranberry juice requires my son to come by and open it, and I haven’t been able to change a pot light since 2008.) “There’s going to be someone nearby who can.”
By now, one of the two guys over at the TV has brought out a ladder and is climbing up to look behind a ceiling panel while the other uses a flashlight built into the end of his cane to light the way.
“What are you guys up to?” I love a man with a tool kit.
“We want to mount this TV on the wall,” says Bryan Day, the one with the flashlight. Please don’t ask me what ceiling panels have to do with wall-mounting a TV; it’s out of my ken. See above, re: pot lights.
I sit down with Bryan, who shows me the various attributes of his terrific cane, which also has a built-in alarm. “The problem with a lot of older people is they start to get frightened and isolated” instead of helping each other, Bryan says. “Things need to get done, and they don’t get done if you don’t go up the ladder.”
For nearly two decades, groundbreaking W5 investigations have shone a light on the failings of Canada’s long-term care system. From staff-to-resident abuse, resident-to-resident abuse, sexual assault, homicide, substandard care and staffing; we have shared the stories of victims, their families, and held institutions and governments accountable. We have championed the need for change.
Camille Parent told us how a hidden camera he installed caught confused nursing home residents walking into his mother’s room and rifling through her belongings; and the shocking images captured a personal support worker (PSW) aggressively trying to force the 84-year-old out of bed, while on another occasion, a PSW took a feces smeared cloth and shook it near the frail senior’s face.
Gaylord McAlpine and his sister Pat shared how their mom had been sexually assaulted by a resident in the nursing home, and how she was not alone in suffering this abuse.
Frank Piccolo’s family described to W5 how the immobile senior, suffering from Parkinson’s disease and dementia, was repeatedly hit over the head with a wooden activity board. Staff found him slumped over in his wheelchair, covered in blood. His attacker, another resident, was found nearby washing Frank’s blood from her hands.
And Lori Dekervor believes a lack of adequate care in a Toronto nursing home led to the hospitalization of her dad Arthur Ross Jones and the discovery of a massive gaping wound on his lower back that had turned septic. Dekervor says it was laced with feces.
Over the years, many families have approached W5 with claims of neglected care; maggots in wounds, repeated falls that weren’t stopped, and attacks by employees on residents. Staff have also shared the abuse they suffered at the hands of seniors in the throes of dementia.
And when the story of the pandemic is told, the huge tragedy will be how society let down the elderly. How provincial governments turned a blind eye for decades to problems plaguing long-term care. How, despite inquests, inquiries and coroners’ reports, recommendations for change have been largely ignored.
On April 26, 2021, Ontario introduced legislation to strengthen health workforce accountability and to implement a regulatory model for the province’s PSWs. Ontario is also promising further action, following a damning report by an independent commission over the failings of the government to protect LTC residents and staff during the pandemic.
Watch our 14 investigations going back to 2004 above, and read the story behind the stories and comb through exclusive data and legal documents on our dedicated W5: Neglected Care page.
An alternative approach to covering late-life care needs
This is the third in a series of columns on financial challenges from encountering residential care needs late in life. The first column described the main care options — in-home care, retirement homes and long-term-care homes — and what they cost. The second column discussed the potential to fund care needs with backup assets such as a paid-for home.
While long-term-care insurance offers an alternative approach, it usually doesn’t work as well as the more common practice of using general income, savings and assets to fund care costs. However, individual circumstances vary and long-term-care insurance can make sense in specific situations.
Long-term-care insurance is a widely used product in the U.S. (where conditions are different). But there are now only two providers offering it on a stand-alone basis in Canada, says Lorne Marr, director of business development at HUB Financial, a managing general agency for insurance brokers. (Marr says several other insurers offer it as conversions on other types of insurance like critical illness insurance or disability insurance.)
I find the approach offered by Sun Life Retirement Health Assist to be the more promising of the two options, since it provides regular cash payouts that you can use however you want for as long as you need care.
The other provider, MyDignity Home Care Assistance Plan, reimburses specific care expenditures and is capped by total spending and individual spending category. Since the biggest concern is trying to cover the possibility of runaway care costs, I don’t see much point in a policy that caps payouts in this manner.
In both cases, you purchase long-term-care insurance and start paying premiums when you’re relatively healthy, to help cover care costs should you become sufficiently dependent on care later in life.
Benefit payouts are triggered if you meet a particular threshold of care dependency involving: severe cognitive impairment or two of six activities of daily living: bathing, dressing, feeding, toileting, continence and transferring (e.g. into or out of bed).
Understand long-term-care insurance shortcomings
Unfortunately, long-term-care insurance doesn’t match the classic ideal of the insurable event in its optimal form. Insurance is generally most cost-effective when you’re insuring against a small probability of catastrophic loss. That way the insurance company is able to charge modest premiums and still protect you against a loss that is too large to absorb easily on your own.
However, needing long-term care isn’t exactly a low-probability event. Some estimates place your odds of requiring some amount of nursing-home-level care at almost 50 per cent. That necessarily means that long-term-care insurance premiums are relatively expensive compared to the potential payouts they generate after also accounting for sales, administration and insurer financing costs.
If you end up requiring a lot of care and move to a government-subsidized long-term-care home, that doesn’t necessarily qualify as financially catastrophic because the government ensures no one is turned away due to affordability. While government long-term-care homes (also known as nursing homes) have their shortcomings, to an extent at least, the government has your back. (In the U.S., government support for long-term-care homes is far more limited. That contributes to long-term-care insurance being far more common in the U.S.)
If you need only a small to moderate amount of care and are still fairly active, you may want to get in-home care or move to a retirement home. The province provides very limited support for in-home care and essentially no support for retirement homes, so you largely need to pay for these types of residential care out of your own pocket. And those costs can be hefty.
Unfortunately, your long-term-care insurance policy won’t help you if you need some care but aren’t dependent enough to meet the criteria for long-term-care insurance benefit payouts, which sets a relatively high bar. If you need a caregiver to help with bathing, but you’re of sound mind and don’t need help with any of the other six defined activities of daily living, then you won’t get benefits. “There are a lot of people in retirement homes that wouldn’t qualify for a claim,” says Marr.
Furthermore, long-term-care insurance pays out only if you’re dependent on care, but what happens if you live into your nineties, stay relatively healthy, but run short of money for other reasons? In that situation, you might regret all the long-term-care insurance premiums you paid — and must continue to pay to ensure your policy doesn’t lapse.
Long-term-care insurance is a narrowly targeted product that addresses one financial risk, but the cost of the premiums detracts from your ability to save for and counter other possible threats.
Generally, it’s a good idea to stay flexible with your financial resources. In my last column, I discussed the strategy of making use of flexible backup assets such as a paid-for home, although it could also include other assets or extra savings.
You can potentially tap into backup assets to cover a variety of unplanned extra financial needs late in life. If everything works out well and you live a long life, stay healthy, and your finances prosper, then you can leave backup assets as a bequest to your heirs or charity.
Long-term-care insurance can make sense in special situations
While long-term-care insurance warrants skepticism, you should assess it according to your individual preferences and situation. A special circumstance where I think long-term-care insurance might make some sense is if you put a high priority on having funds available late in life for an expensive private facility providing nursing home-level care.
This may apply if you’re adamantly opposed to relying on public long-term care homes for care and are willing to put other financial needs that may arise at far lower priority. It also helps if you don’t have a paid-for home or other backup assets to tap but still generate enough steady income (e.g. from an employer pension) to comfortably afford long-term-care insurance premiums for an indefinite period.
Example of long-term-care insurance premiums and benefits
To provide a taste of how long-term-care insurance works, here’s an example: a Sun Life long-term-care insurance policy purchased at age 60 with a potential benefit of $8,000 a month. Monthly premiums are $444 for males, and $689 for females, according to a quote obtained last week by Marr. To maintain coverage, you keep paying premiums until a claim for benefits is approved.
While I don’t have space to describe all pertinent details of this complex product, two deserve highlighting. Firstly, Sun Life reserves the right to increase premiums after the first five years, so you can’t count on your costs staying the same.
Secondly, benefits aren’t adjusted for inflation prior to the point where they start to be paid. This diminishes their “real” value in today’s dollars, particularly if payouts start far in the future. If benefit payouts for this example policy were to start in your late eighties, the real value of the $8,000 monthly benefit would be cut roughly in half (assuming annual inflation of 2.5 per cent). However, as Marr points out, the real cost of the premiums in today’s dollars also gradually declines due to inflation.
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