August 15, 2018

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Home care at a crossroad

There are 14,000 visits carried out every day in Winnipeg by health-care aides, support workers and nurses. But with a move to a public-private model, some wonder if the original intent of the province’s trailblazing program has fallen by the wayside

In September 1996, Evelyn Shapiro spoke to the Manitoba Society of Seniors in Winnipeg and warned them not to be seduced by attempts to subvert Canadian values, no matter how elegant and compelling the packaging.

Though herself a forceful proponent of medicare and the Canada Health Act, Shapiro was not Canadian born. She was a Lithuanian who arrived in Manitoba via Montreal in 1972. Within two years she had already begun to indelibly transform seniors’ health care, both here and across the country.

“Over the last decade we have been witnessing a concerted attack on these values, but couched in terms which sometimes hide their true meaning and sometimes their true intent,” Shapiro told the crowd.

By her measure, one such attack had happened that year.

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In September 1996, Evelyn Shapiro spoke to the Manitoba Society of Seniors in Winnipeg and warned them not to be seduced by attempts to subvert Canadian values, no matter how elegant and compelling the packaging.

Though herself a forceful proponent of medicare and the Canada Health Act, Shapiro was not Canadian born. She was a Lithuanian who arrived in Manitoba via Montreal in 1972. Within two years she had already begun to indelibly transform seniors’ health care, both here and across the country.

"Over the last decade we have been witnessing a concerted attack on these values, but couched in terms which sometimes hide their true meaning and sometimes their true intent," Shapiro told the crowd.

Evelyn Shapiro implemented Canada’s first universal home-care program. (Ken Gigliotti / Free Press files)

Evelyn Shapiro implemented Canada’s first universal home-care program. (Ken Gigliotti / Free Press files)

By her measure, one such attack had happened that year.

Some 3,000 home-care workers had spent an anxious winter as the expiration date of their provincial contract grew closer — March 31, 1996 — and the government mulled its options; a leaked Treasury Board memo hinting at broad plans for privatization.

But five weeks of strikes forced then-premier Gary Filmon’s government to capitulate where it said it would not. And so, in May the workers won their concessions: jobs safe, salaries secure and privatization limited — for now — to a one-year Winnipeg trial that could not exceed 20 per cent of the city’s service at the time.

For the most part, the summer was quiet; a détente from relentless headlines and the adrenaline of the picket line. Though the private trial was expected to begin in June, it didn’t.

And it hadn’t by September, when Shapiro spoke to that Winnipeg crowd. She spoke not just as a senior researcher who had personally overseen the creation of the Manitoba Home Care Program, but also a senior herself. She was 70.

"We are the ones who are old enough to have witnessed and have had the opportunity to learn the lessons of the dirty thirties and our wartime experiences," she said. "We are, therefore, in the best position to explain why we must reject individualistic values."

So much, Shapiro argued, had been gained in the aftermath of the Great Depression and the Second World War. Canada had old-age security pensions, medicare, Pharmacare, guaranteed income supplement, personal care home insurance and the Canadian Assistance Plan.

"Although we made some mistakes along the way, we had fashioned a society of which we were proud of and in which, among other achievements, we could expect some security and avoid pauperization as a result of illness," she said.

And Canadians must be louder in protecting what they had fought for, she argued.

The last item on Shapiro’s list of gains was home care, she said, "from which seniors benefit disproportionately but which also benefits all Canadians."

It’s unlikely many would argue Shapiro on that point, even now, 43 years after Manitoba Home Care arrived. But the government’s recently launched mixed-model approach has raised privatization concerns again among the program’s proponents.

The approach, Priority Home, melds public with private and focuses on intensive, short-term supports to get people out of hospital quicker. But what happens after? In a bid to cut costs, has the program Shapiro and her counterparts envisioned been retooled to such an extent that its original intent has fallen by the wayside?

In 1996, Manitoba home-care workers and supporters fought against privatization. (Jeff de Booy / Free Press files)

In 1996, Manitoba home-care workers and supporters fought against privatization. (Jeff de Booy / Free Press files)

 


Home care is an old idea that’s fallen in and out of favour while never entirely disappearing. Shapiro wrote about this.

Home was where, for the better part of the first half of the 20th century, people battled the sudden onset of disease and illness, convalesced on their road to recovery, or learned to live with incurable ailments. The family doctor was the pinnacle of care, but it was family, friends and the neighbours down the road who did the daily work of keeping up your health and your spirits, your home clean and your laundry folded.

To go to a hospital was foreboding, a sign you were so sick you might die. And then, in the 1940s, there was widespread production of hospital beds and an emergence of medical specialists.

Hospitals lost their menace and home care was relegated to the fringes. That is until — and it’s not hard to recognize the ongoing conundrum — rising costs forced people to re-evaluate a sustainable future for health-care delivery.

But for its initial champions, women such as Shapiro and Betty Havens — a force of an academic who saw government rather than the university as the best outpost for her work — cost savings weren’t the primary appeal.

"The idea was that if we offer a wide range of essentially social care kinds of services and supports to people that this would be health promoting in the long term," says Laura Funk, an associate professor at the University of Manitoba whose research focuses on the sociology of aging and health.

"Yes, it would keep people out of institutional care, that was one of the goals, but research shows that the social needs are as important."

 

Reducing institutional care while addressing social needs were the pillars of the universal home-care movement, says Prof. Laura Funk. (Ruth Bonneville / Winnipeg Free Press)

Reducing institutional care while addressing social needs were the pillars of the universal home-care movement, says Prof. Laura Funk. (Ruth Bonneville / Winnipeg Free Press)

 

At the time, there was very little in the way of government support for the community care that the poor and elderly so needed. What home-care services did exist in the province in the 1960s were "fragmented," Havens said, "devoted almost exclusively to encouraging early discharge from hospital."

That fragmentation was compounded by a lack of understanding about what it meant to grow old.

Years after Manitoba Home Care’s inception, Havens would tell variations of the same speech at conferences across the country. She would challenge her listeners to think about why they imagine young people to be so diverse, while they see the elderly as old and the same in their oldness.

"As we grow older… we don’t change our personalities, we simply become more and more like ourselves," she would say. "Unfortunately, while we expect young adults to have many styles of living and while we accept a wide range of lifestyles among middle-age adults, we tend to anticipate that older adults only want or need a single lifestyle, namely the one we have planned ‘for’ them."

In 1971, Havens had begun her investigations. She started the Aging in Manitoba Longitudinal Study. That study, ongoing even now, is billed as the first of its kind in the world. But at the start, at a Manitoba level, it was immensely practical: it gave policy-makers the basic information they needed to understand the province’s aging population.

It paved the way for universal home care.

 


Betty Havens’ Aging in Manitoba Longitudinal Study paved the way for universal home care. (Dave Buston / Canadian Press files)

Betty Havens’ Aging in Manitoba Longitudinal Study paved the way for universal home care. (Dave Buston / Canadian Press files)

 

The beginnings of the country’s first universal home-care program wasn’t exactly heralded in the Winnipeg Free Press.

Government to study nursing home alternatives, reads the Sept. 4, 1974 headline.

The story was about a provincial rethink of burgeoning nursing home wait lists and the idea that perhaps it could save $15 to $20 every day by moving a person’s care from a care home to their own home. It was Shapiro’s first appearance as director of Manitoba Health’s newly created Office of Continuing Care.

The only clear indication the article offers that the proposed solution was many years in the works and would have a deep and lasting impact on seniors’ care is a quote from Shapiro in which she says, "Home care is the cornerstone of geriatric care."

Shapiro, Havens, Enid Thompson, Caroline Ewanchyna, Jeanette Block, Margaret Barbour, Maria Haroon and so many others would work tirelessly to make it so.

A task force convened by the federal and provincial health ministers in 1968 to look at rising costs had spared only one recommendation for home care. It should exist when medically warranted, it decreed, and when there is a shortage of beds, and when the service it offers would be cheaper than offering that same service in hospital.

The History of Home Care in Canada

1970 — Some publicly funded home-care services arrive in Ontario.

1972 Quebec offers some home care with its Local Community Service Centres, although full coverage isn’t in place until 1988.1974 — Manitoba makes its mark with the country’s first province-wide continuing-care program, including home care for people of all ages.

1975 — Limited home care is introduced in Newfoundland and Labrador.1978 — British Columbia creates a long-term care program while Alberta offers up seniors-only home care. Saskatchewan implements a comprehensive home-care program and the Northwest Territories starts its programming initially in Yellowknife.

1979 — New Brunswick introduces an “Extra-Mural” program designed to offer up hospital alternatives.

1982 — Home care funding is officially taken over by the Ontario government.1983 — British Columbia’s long-term care program expands to including nursing and community rehabilitation in the home. It also undergoes a name change, similar to Manitoba, and becomes a continuing care program.1986 — Prince Edward Island’s home-care support program launches.

1988 — Nova Scotia launches home-care services aimed primarily at seniors with limited funds and persons with long-term disabilities, while the Yukon caves to public demand and introduces its own home-care program.

2003 — Nunavut sets the standards and policies for its own home-care program.

— Source: Home Care in Canada: From the Margins to the Mainstream

But Manitoba, first in a white paper on health policy and then in a 1974 provincial working group on home care, took what had been, until then, a largely hospital and cost-focused exercise and returned it to the community.

After all, as Shapiro noted, "even the best institutional care removes substantial areas from the independent decision-making which makes each person so unique and special."

The working group acknowledged existing programs meant to prevent or cut down on hospital stays before suggesting a different route. Manitoba should not attempt to "create an enforced relationship to a care facility," it wrote, but rather consider a centrally controlled home-care program based in the community that offers services within "the context of supporting health rather than the context of illness."

The program should take services already offered in a more limited, disjointed way and bring them together, the working group said. In doing so, it would be possible to "make services accessible on a systematic basis to anyone assessed as needing them."

Physiotherapy, catheterization and wound dressing services should be offered, it recommended, as should bathing, grooming and personal hygiene. There should be counselling services, referrals to financial services, and library visits. There should be cleaning, laundry and meal prep, as well as an education component about how people can maintain their own health.

"One of the central features of geriatrics is the need to embrace both the medical, the social and the psychological factors," says Dr. Philip St. John, geriatrician and co-lead for the Manitoba site of the Canadian Longitudinal Study on Aging.

"You really can’t ignore one at the expense of the other," he says. "Most geriatricians put themselves in the middle of this: on one side you’ve got the medical system and on the other side you’ve got the social system."

There, in the middle, was the Manitoba Home Care Program.

While the government didn’t execute every recommendation from the working group, its report did form the backbone for the program. In September 1974, the Office of Continuing Care opened with Shapiro at the helm. She was given an initial budget of $5.8 million and tasked with implementing the country’s very first universal home-care program, one that would be accessible to people not already in hospital and one that would be fully subsidized.

 


Prof. Christine Kelly: Care has become a 'save me from the residential-care home kind of model.' (Phil Hossack / Winnipeg Free Press)

Prof. Christine Kelly: Care has become a 'save me from the residential-care home kind of model.' (Phil Hossack / Winnipeg Free Press)

 

Come forward four decades.

It’s 2017 and home care is a Band-Aid for rising health-care costs and patients in crisis.

That’s how Christine Kelly, an assistant professor in community health sciences at the University of Manitoba, describes it. She’s researched home care at both a provincial and national level for years now, her findings punctuated with compelling stories of program users she’s met along the way who’ve left their mark.

Winnipeg home care is wider in scope — there is a stream for pediatrics, one for palliative, another for stroke — but seemingly narrower in vision. While Shapiro and her comrades imagined this health-boosting, community-centric program bridging the care gap between medical, social and psychological needs, now Kelly says it’s almost a "save me from the residential-care home kind of model."

"It’s such a crisis," she says — and it starts with the patients.

Most elderly don’t reach out for help until they’re in crisis. That’s why some welcome programs like Priority Home in theory. They serve as a vital link helping people who no longer need acute hospital care, but aren’t yet ready to recuperate unassisted, go home faster. It’s a win-win: the patient gets to go home with a reduced risk of re-admittance while the hospital gets to free up a costly bed for another patient in need.

It’s a program perfectly in line with the Winnipeg Regional Health Authority’s substantive consolidation plans: streamline patient care, improve bed flow and cut down on long wait times. The problem for those such as Kelly and Funk is that of the $15.7 million the WRHA said it plans to spend over the next three years on the program, $10.5 million will go to private companies, which, for at least three years, will supply the health-care aides and support workers. Nurses and occupational therapists will come from the public system.

Who uses Winnipeg home care?

In the Winnipeg region, where the bulk of the province’s home care is delivered, the service is offered through several specialty programs geared towards helping a particular set of patients. There is home care for children, there is home care for the terminally ill and there are programs for people who have had strokes or who are living with chronic illnesses. While the majority of patients are elderly and need continual, long-term care, theirs is not the only story.

Self and family managed care:

Since 2012, the program has seen, at most ,702 patients annually, 351 at the least.Its popularity fluctuates among adults and seniors.In 2015-16, 466 people using the program were between the ages of 19 and 64, while 236 were aged 65 and older.Comparatively, in the first seven months of this fiscal year, 190 patients on the program were adults, while nearly 400 were seniors.

Community coordinated (long term) care:

This is the WRHA’s largest program.It sees fairly consistent use with about 17,500 patients annually.There are very few children who use the service, a few dozen each year, at most.Most of the program’s clientele are seniors: more than 14,000 annually.By comparison, it sees roughly 3,400 adult patients each year.

Pediatrics:

This program is fairly small, caring for 200 or so patients each year.The vast majority are children, but up to 10 patients each year are older than 18.Some adults stay in the program if they’re still in school and have complex-care needs until they can be appropriately transitioned out.

Dialysis:

This is a very small program that moved out of the home-care budget in August 2013.The WRHA says it wasn’t sustainable on its own, so it was transfered to the renal program.In 2012-13, it treated 111 patients, 51 of them children, the other 60 adults.In 2013-14, that dropped further with the program caring for only 10 children and 18 adults.

Palliative:

This is a fairly substantial program with more than 1,100 people cared for in 2012-13.It cared for a fairly even split of adults and seniors that year, as well as 25 children.It was transitioned out of the home-care budget in March 2013 to become part of a more comprehensive, system-wide palliative-care program.

Respiratory:

For the last five years, this program has consistently treated about 150 people each year.At most, it provides service for one child annually.Largely, the program’s users are seniors, although in recent years the gap between seniors and adults has closed.

Stroke:

Between 154 and 285 people receive care each year from this program.There have been very rare instances of children receiving treatment: one in 2014-15 and one in 2015-16.For the most part, these patients are fairly evenly split between adults and seniors.Last fiscal year, 118 seniors and 110 adults received care, compared with 86 seniors and 68 adults during the 2012-13 fiscal year.

Community intravenous program:

The number of people using this program has grown consistently in the last five years.In 2012-13, there were 624 patients receiving care as compared with 1,095 in 2016-17.The majority of patients on this program are adults, between 443 and 784.It has treated between two and seven children annually over the last five years, although this fiscal year that number has nearly doubled, so far, at 13.

Nurse co-ordinated (short term) care:

This is the WRHA’s second-largest program after community co-ordinated (long term) care.Between 3,899 and 4,739 people have been looked after on this program every year for the last five years.No children receive this service, which is fairly evenly split between adults and seniors.The number of adults has fluctuated in recent years, from 1,886 in 2012-13 to 1,943 in 2016-17.The number of seniors has slowly increased, from 2,013 in 2012-12 to 2,796 in 2016-17; the only exception was 2015-16, when the number of senior patients dropped to 2,346.

The Manitoba Ostomy Program:

For the last five years, this program has cared for roughly 400 people.Children using this home-care service are rare: two in 2013-14, one in 2014-15, three in 2015-16 and two so far this fiscal year.The number of adults and seniors using this service has also remained fairly consistent.There tend to be upwards of 100 adult patients each year.The number of senior patients varies between 200 and 300 each year.

The Cost of Home Care

During the 2016- 17 fiscal year, the Winnipeg Regional Health Authority spent more than $220 million on home-care services. Across most of its specialty programming, home care’s greatest expense was the staff required to operate it. The three exceptions to that are the home nutrition program, the home ostomy program, and the respiratory program, all of which spent more on supplies than staff.

By the numbers:

  • Community co-ordinated (long term) care: $133,633,378
  • Nursing co-ordinated (short term) program: $31,723,716
  • Self and family managed care: $25,910,951
  • Community intravenous therapy: $7,926,613
  • Palliative care: $5,220,424Health co-ordination program: $3,652,330
  • Home ostomy program: $3,491,570
  • Home nutrition program: $2,758,700
  • Therapy-only programming: $2,156,942
  • Community stroke care service: $2,129,836
  • Respiratory: $1,087,712
  • Pediatrics: $466,852

 — Source: Winnipeg Regional Health Authority


The evidence does not favour a private approach.

In making her case, Kelly points to a 2015 study from the Bruyère Research Institute in Ontario, which found hospitalization and mortality rates of patients looked after in for-profit facilities to be significantly higher than those in public facilities.

The story was similarly negative when the Manitoba government finally awarded a private home-care contract in March 1997, nearly a year after it abandoned plans for full privatization.

It gave $5.6 million to Olsten Health Services to provide home-care service on a trial basis, but the contract did not become more permanent. 

University of Winnipeg professor Jim Silver’s investigation into Olsten for the Canadian Centre for Policy Alternatives offers up a clue as to why.

He reported that the United States government was investigating the company and that it was also the subject of investigations in the state of Washington for failures relating to carrying out doctors’ orders for home-care patients.

Silver’s conclusion left little room for argument at the time, his work suggesting that the "concerns raised by opponents of home-care privatization in 1996 were fully justified. The problems which they were predicting are common throughout the American private, for-profit system."

For 17 years now, ParaMed, one of the two private companies involved in delivering Priority Home, has played a supporting role in Winnipeg home care.

"We are proud of our service-delivery model and our customer service standards," the company’s Winnipeg district director, Juliana Berube, wrote in an emailed statement sent in response to a request for an interview.

"The standards are not different," she wrote, noting "clear requirements" in ParaMed’s service agreement with the WRHA.

ParaMed also serves as one of two companies who have had a backup contract with the region for the better part of a decade, meaning they provide health-care aides, support workers and nursing staff when the WRHA can’t fill a sick employee’s shift. Less than four per cent of home-care staffing costs paid out by the region last fiscal year went to these companies: $3,924,636.

But Funk says that raises questions about the operation of the program.

"It’s hard to know what’s going on," she says. "You have to ask, ‘Why can’t you fill those shifts?’ What is it about the way the work is structured?"

Vikas Sethi, WRHA’s home-care director, says it’s partly an inevitability in a large workforce, people want to move into different roles within the health system.

At her most cynical, Funk worries the program’s emphasis on social support has been swallowed up by cost constraints and Priority Home only furthers that.

"I think Evelyn and Betty would have been disappointed to see the way in which home care tends to be viewed by the health system now as just a means to offset institutional costs," she says.

"Home care itself, if you look at it, is cheaper but you don’t fully realize those savings unless you have an integrated system of care."

 


Home-care workers helped to look after Alison Norberg’s dying mother. During that time, Norberg witnessed a shift in the type of care. (Ruth Bonneville / Winnipeg Free Press)

Home-care workers helped to look after Alison Norberg’s dying mother. During that time, Norberg witnessed a shift in the type of care. (Ruth Bonneville / Winnipeg Free Press)

 

To paraphrase Lynne Fineman, one of the early directors of the Manitoba Home Care Program, there is nobody banging on the door of a nursing home saying, "Let me in, let me in." Most people would prefer not be trapped in sterile halls.

And as Alison Norberg discovered, being at home made it possible to find something good in her mother’s dying days. It was a shifting target, to be sure. Dementia is not kind or even linear. But every day there was at least one moment, such as the afternoons in which Katherine Norberg — called Kay by most — would sit in a chair in the living room and watch the birds dart close to eat seeds from the feeder hanging outside her window.

Kay had spent many a moment at that window. She had owned the white, clapboard house with its burgundy trimmings in the city’s West End since 1963. She raised six children there, curling up to sleep there after a long nursing shift, and personally picked the dark shade of red that made the living room feel small but cosy and warm.

Kay wanted to die there and Norberg, her oldest child, was determined to make it happen.

"There were good things every single day," she says, "because she was here."

There’s a chip in the red paint now, and the room is mostly empty, having been cleared out to make way for a hospital bed and commode removed not long after Kay’s death on Sept. 16, 2016 at the age of 82.

It’s no small sacrifice to be a family caregiver. A little more than a year after her mother’s death and Norberg is, just now, readying the house to sell and slowly returning to her career in art and design.

Norberg has smooth, white hair, a gregarious smile and a view of home care echoed by many of the people interviewed for this story: when it works it is brilliant, but when it doesn’t it is an added burden at the most inconvenient time.

"It was a little more leisurely," she says of the beginning.

A solution or further privatization?

Vikas Sethi, WRHA home-care director, says self and family managed care offers another option. (Ruth Bonneville / Winnipeg Free Press)

Vikas Sethi, WRHA home-care director, says self and family managed care offers another option. (Ruth Bonneville / Winnipeg Free Press)

What started with a 29-person, two-year pilot project born to address the specific needs of the disabled in the late 1980s has morphed into an accepted alternative for those looking for more flexibility. The WRHA expects demand for self and family managed care to grow in the coming years.

But when a niche program gets mainstreamed does it dilute the benefits while raising more questions about who exactly the money is being used to hire to deliver the care?

“There’s this push to expand the self and family managed care option as a way to alleviate pressures on traditional home care,” says Christine Kelly, an assistant professor in community health sciences at the University of Manitoba whose work focuses largely on home care at a national level.

“Sometimes you can see it as this amazing option, some people see it as a form of privatization,” she says, “and other people see it as an (alternative) because regular home care is so frustrating.”

The WRHA’s director of home care Vikas Sethi puts it more succinctly: “it’s an option.”

In regular home-care programming, the health authority’s responsibility includes organizing staff and scheduling visits at certain times; for self and family managed care, the region becomes more of an assessor.

It evaluates the level of care a person needs, Sethi says, and decides whether they’re able to mange the finances and the managerial responsibility of coordinating care. If a person is a good candidate, the WRHA will provide the money and then conduct an audit to make sure it’s being used as intended. There are rules around who can be hired —  a 2009 provincial policy outlines the circumstances under which family members can be paid.

It’s an underutilized option, says Health Minister Kelvin Goertzen, that perhaps not enough people know about.

“From the people that I’ve talked to that have been able to do that, they find it the best of both worlds in terms of being able to provide care but also being able to do it with someone who is closed to the loved one,” he says.

Goertzen doesn’t consider people hiring agencies to be different from using union members. The point, he says, is “to ensure that you have the appropriate people in place and act on any concerns as they’re raised.”

While self and family managed care is already widespread in places such as Australia and the United Kingdom, Kelly says, it’s still a growing trend in Canada with the exception of Newfoundland and Labrador.

Kelly is currently in the process of spearheading a study looking at that growth. Her preferred term for self and family managed care is directly funded home care. She said that’s partly to emphasize “the cash-transfer element.”

In Winnipeg, where the bulk of Manitoba’s home care programming is offered, self and family managed care makes up a relatively small piece of the pie. The WRHA spent more than $2.1 million on the program in 2016-17. That’s in line with some of its smaller specialty home programs but well below the $133.6 million it spent on its busiest, long-term community care program.

Still, Kelly says, directly funded home care raises questions: “How does it change the experiences of care? How does it change the working conditions? How does it change the policy landscape?”

Many provinces only approve direct hires for self and family managed care, meaning you hire your family, a friend or the neighbour down the street. That’s not the case in Manitoba, where people can choose to take the money they’re given and spend it on an agency.

That’s worth a closer look, Kelly says, because there has been some evidence from the U.K. that the real health benefits associated with directly funded care come from choosing your own caregiver. She wonders, how much of that benefit is lost when you hire an agency instead?

“In my mind it’s a further form of privatization,” says Laura Funk, an associate professor at the University of Manitoba who specializes in the sociological study of aging, health and care provisions. “It’s publicly funded but you’re going to hire someone privately that will better meet your needs.”

If people are being driven toward it because of frustrations with the public system maybe it’s time for a new approach, she says.

“One of the biggest complaints that I hear overall about home care is that lack of ability to flexibly adapt to what people actually need,” Funk says. “As a result, some people, some family caregivers, actually say, ‘well, forget it, I’m just going to drop home care.’”

While privatization has always been a bit of an issue, says Lynne Fineman, one of the early directors of the Manitoba Home Care Program, she doesn’t see self and family managed care as paving the way.

Fineman was part of the provincial team in the 1980s that responded to disability advocates’ mounting frustrations with the program’s approach to their care. A directly funded option emerged following a two-day symposium featuring board members and clients from various advocacy organizations.

“It was really the first time the government was going to give money to people to hire their own help,” says Fineman, who is now the lead consultant for The Fineman Group, which specializes in care planning for seniors. “Home care was still going to control the assessment of need but the individual would be able to control who the provider was going to be and the manner in which the provider provided the service.”

That was key, she says, because people with disabilities using the program — many of whom at the time were quadriplegic — needed help with intimate bodily functions, but weren’t actually sick and didn’t want to be treated as if they were.

Even though the program has since broadened its clientele, Fineman thinks it’s a good option for people who need extensive service in order to remain in their own home.

“If you take those people and their demands out of the system,” she says, “theoretically they take some of the drain off of program resources.”

But who are we hiring? Kelly wonders.

“We know so little about the people who end up working under self and family managed care,” she says. 

“We just do not collect information, it’s really a hands off, ‘here’s the money, you hire who you want.’”

That’s not to say there aren’t benefits to that approach, Kelly says, like being able to hire someone who speaks the same language as you. But it does raise questions about educational and other qualifications, as well as accountability in cases of caregiver or client abuse.

In January, Kelly will help launch a study looking at self and family managed home care across Manitoba.

“There’s a heavy emphasis on the workers,” she says, “because it’s just emerging that nobody knows anything about demographics, education, that kind of stuff.”

jane.gerster@freepress.mb.ca

Almost every day in 2011, a home-support worker would arrive at Kay’s house for lunch. She would prepare the food, make sure Kay ate and then clean up, chatting all the while. Occasionally she would linger past 45 minutes, Norberg says, but "that was before the tasks got very narrowly calculated in terms of the amount of time."

A 2015 report from the Manitoba auditor general’s office reported that the WRHA budgets 20 minutes for a "meal heat and serve," including travel time. That’s a little more than the 10 to 15 minutes budgeted for medical assistance, but less than the 25 minutes allotted for a bath.

The expectation is that those schedules be adjusted as necessary based on each person’s individual needs, but while the auditor general found workers ran over nearly half the time, in most cases the reason wasn’t clear. The WRHA’s own surveys indicate rushing workers were a concern raised by roughly 15 per cent of clients.

While the move to task-based care is not a trend unique to home care or even to Winnipeg health care, geriatrician St. John says it represents perhaps the most substantive shift in Manitoba home-care operation since the program’s start in 1974.

"It’s, ‘I’m here to put on your socks and that’s my task now,’ ‘I’m here to put on your compression stockings,’ ‘I’m here to do your blood pressure,’" he says. "It might be a different worker each time."

The use of Taylorism — a principle of scientific management employed in assembly lines to maximize efficiency and production — in home care, St. John says, "cries out for research."

It just doesn’t work for people suffering with dementia, says Wendy Schettler, CEO of the Alzheimer’s Society of Manitoba.

"It’s, ‘We’re in and we’re out, we’re in and we’re out,’" Schettler says. "We know that doesn’t work with people with dementia. You can’t just run in and out; you have to develop relationships, you need consistency or they’re not going to let you in the door."

Sometimes, Norberg acknowledges, the inconsistency can’t be helped.

Kay was fine until one day she forgot that Norberg was working and wandered out alone to wait for her at a busy intersection. After that, respite care was added on top of the lunch visit. Then Kay needed someone to lay her clothes out for her. 

Soon after, she needed help getting dressed, an endeavour that proved tricky and time-consuming for Norberg to manage alone.

In November 2014, Kay fell at home and broke her leg. For a while after her hospital release, after the hospital bed and commode were moved into the living room, Norberg says it felt like "a revolving door of staff at a time when we needed stability to get back to routines."

Most worked within the public system, but a few came from private agencies. She never knew whether she’d get a worker who seemed inclined towards the bare minimum or one who would talk with her mother, try to coax Kay to stand up and use her walker during the days when that was still an option.

"I had one case co-ordinator who really valued my role as being central to all of this working," Norberg says. 

But then there was another, who seemed to be chastising her; "Why can’t you just be grateful that someone comes?"

Health Minister Kelvin Goertzen says a government task force is reviewing home care’s task-based model, and is expected to report back in the new year.

He says it’s investigating "whether the tasks are appropriate and whether the right people are assigned to the task and whether or not the hours that are allocated to those tasks make sense."

"I’ve also heard those frustrations from those who are working within the system and those who are receiving care in the system," he says.

The U of M’s Kelly says it’s important to recognize that the solution to home care’s stumbling blocks isn’t always adding hours.

"A lot of times — and this is where that privatization issue comes in — it’s actually about needing a better philosophical orientation," she says.

Some workers have poor attitudes about the tasks, while others struggling with employment can really be shunted into the role because it’s seen as an easy gig.

"People aren’t going to say that," Kelly says, "but that’s the problem."

 


 

For home-care nurse Valerie Alderson, her car also serves as her office and supply room. (Ruth Bonneville / Winnipeg Free Press

VALERIE ALDERSON

For home-care nurse Valerie Alderson, her car also serves as her office and supply room. (Ruth Bonneville / Winnipeg Free Press

Valerie Alderson didn’t want to be a nurse insomuch as she wanted independence and self-sufficiency, benefits and a pension plan. She’d grown up the daughter of farmers in Austin and watched her parents toil, knowing it wasn’t the life she wanted.

In 1983, health care mapped out her road.

Yet, for a career Alderson had embraced in large part for its stability, her first decade was anything but.

First, she had no jobs. Then she had three. And then two, before finally landing full-time long-term care employment. But when they tried to change her day shifts to an evening rotation, Alderson quit.

"You’re young," she says with a shrug. "You’re not going to do evenings, so I left."

After a month of unemployment in early 1998, she began pestering home care for work. They hired her and she’s been there since. Her car is her office; maps — once paper, now Google — her guide.

"I call it a medical ward without walls," she says.

At a hospital or personal care home, everything is at hand: medical supplies are in the closet, your colleagues are physically present and a consulting specialist is often just down the corridor.

"I didn’t have to get undressed 30 times a day," Alderson says wryly.

She cares for 19 people right now, doing at least a dozen visits daily. Boots on, boots off, boots on. It’s a cumbersome yet necessary routine done 14,000 times daily in Winnipeg by nurses, health-care aides and home-support workers. Alderson stops in the office when necessary to load up on any dwindling supplies. If she has a niggling feeling about a client’s condition, she’ll touch base with their other care providers, but mostly she’s on her own.

"It’s never boring," she says.

It is, however, incredibly intimate, which some people struggle with. People want to stay at home, Alderson says, but they can’t quite reconcile that with the fact it means someone will be continually in their kitchen, their bedroom and their bathroom.

"It’s not just nursing," she says, "it’s being a human being and caring for individuals."

A philosophical guide to caring for the elderly

On May 8, 1981, Betty Havens gave a speech on the social history and aging at Memorial University in St. John’s, N.L. It is illustrative of the social ideals Manitoba home care was rooted in. It also serves as a reminder for those who work with aging people that recognizing individuality is crucial for helping promote meaningful lifestyles.

“Each of us probably begins our life with our physiological age set genetically (that is, your prematurely old eyes probably came from your father or mother or grandparents). Simultaneously, our birth certificate witnesses our chronological age. However, practically from the moment of birth, we begin to accumulate the lifetime of experiences and personality characteristics that will make us individually unique at every stage of development. As most of you know, and despite (bestselling pediatrician and author Benjamin) Dr. Spock, all two years olds are not the same, some aren’t even terrible (usually our own). Some infants talk earlier than others, some run before they walk, etc. We’ve finally grown to accept these variations in child development and have dignified them with a behavioural science term, namely individual differences. The studies of twins have served to underline these differences.

Some children prefer to play by themselves and other are miserable unless they have lots of playmates. As we get older, some of us prefer to study alone and others study better with friends; some refer to work alone or in small groups while others work better in large groups. Similarly, some of us prefer solitary sports and activities while others of us enjoy team sports and mass activities.

In other words, the 70-80 year old whom we identify as a lone wolf, was more than likely a lone wolf at 40 and at 20 and probably preferred to play alone as a child, too. The mother or father who dotes on a child was probably the child who played with one favourite doll or pet all the time. Similarly the ‘dirty old man’ or ‘lecherous old lady’ probably behaved the same way at 20 and 40 and 60; but society either ignored their behaviour or considered it ‘normal’ until they were ‘old.’

As we grow older, then, we don’t change our personalities, we simply become more and more like ourselves. If we were charming 20 year olds, we’ll be even more charming or delightful 60-80 year olds; if we were miserable 20 year olds; we’ll be even more miserable or obnoxious 60-80 year olds. You see, just as the tiger doesn’t change his stripes (they just get more dominant as the hair around the spots greys), so human personality characteristics become more dominant as we age and can ‘afford’ socially to be ourselves.

…The reason for drawing these rather elaborate examples is to underline the individuality of our agingprocesses and the uniqueness of our lifestyles as we age. Unfortunately, while we expect young adults to have many styles of living and while we accept a wide range of lifestyles among middle-age adults, we tend to anticipate that older adults only want or need a single lifestyle, namely the one we have planned ‘for’ them.

Given the variability which goes into aging, that we have fallen into the trap of providing a single plan seems unbelievable.

— Source: University of Manitoba archives


While Alderson’s job has evolved with changing policies and programs, she says one of the most striking changes in the last 19 years concerns the families of seniors.

"Some families are very supportive and they’re very on top of things and then others you never hear from them or see them," she says. "You’re the only person that the senior is in contact with."

Lately, she says, the number of uninvolved families seems to be growing.

It might be because families aren’t able or they just aren’t there. A 2015 auditor general report notes there are more aging parents with fewer children to care for them, and a 2016 Reg Toews’ report on the future of Manitoba home-care services says that even in cases where there is an adult child, that person is often torn between multiple responsibilities that include jobs, children and spouses and ex-spouses.

"There is generally greater public expectation of what/how home-care services should be provided," the Toews report said. The auditor general recommended Manitoba Health calculate likely increases in demand so it can better plan.

In Winnipeg, at least, the WRHA says that is happening.

There’s currently about a 10 per cent vacancy rate in staffing that Sethi knows needs to be addressed as demand continues to go up.

"Recruitment retention remains one of our big focuses in the program," he says. "(We want to) engage our staff on what’s working well, what’s not working well."

But Alderson is not so easily convinced progress is coming.

"We have an aging population and we need more services, we need more people to work in home care," she says. "What’s it going to be like when I may need home-care services? I’m afraid that it may not be there."

 

The research for this story was supported in part by a fellowship with the Canadian Association on Gerontology.

jane.gerster@freepress.mb.ca @Jane_Gerster

History

Updated on Saturday, December 9, 2017 at 8:38 AM CST: Typos fixed.

4:23 PM: Subhead fixed.

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