Homecare in critical condition

Quebec tabled legislation to provide additional $100 million per year, but health critics say the program is failing those most in need

“Five months without physiotherapy is unacceptable,” says Beverly Spanier, using an active-passive trainer in her Montreal home under the supervision of caregiver Maureen Brenie.
Photograph by: John Kenney, The Gazette
By Charlie Fidelman, GAZETTE Health Reporter

Former high-school teacher, union activist and painter Beverly Spanier is sick of begging for care.

Spanier, 69, a recent paraplegic, has been waiting for physiotherapy for five months. Her Montreal highrise living room — once a meeting place for like-minded intellectuals, activists and artists — has become a sick bay, dominated by a hospital bed. Within easy reach, a wobbly table with medication bottles, gels and diapers.

Spanier had surgery on her back last year for spinal stenosis, a condition that choked the nerves to the legs and robbed her mobility. Following seven months at the Lindsay Rehabilitation Hospital, Spanier was sent home in February in a wheelchair — and promised help from her local health agency.

Spanier was deemed eligible for about 32 hours of homecare a week, roughly five hours a day.

But Spanier, who lives alone, is no longer independent. She cannot stand or walk unattended. Her bathroom, for example, was not adapted for wheelchair use. She says the bathroom is the least of her mounting concerns. Last week, she slipped from the chair and lay on the floor until an ambulance came.

“I can’t take one step unattended at this point and they’ve given me five hours a day of help,” Spanier said. “It’s ridiculous. I can’t lie in bed all day. It’s not enough. It’s so insufficient, I will end up in an institution.”

Spanier has begged the ombudsman at the health agency (CLSC) to reconsider her case, but has yet to hear back.

Meanwhile, she has hired round-the-clock caregivers. To cover the gap between what she needs and what the public health system is providing, Spanier turned to private agencies specializing in homecare. It costs her an estimated $9,000 to $12,000 a month in nursing, physiotherapy and overnight care.

With an income of roughly $3,200 a month from pensions, Spanier is using up her life savings, and her money is running out.

“I have no objection to subsidizing my care, but I need more help,” she said.

Spanier is not alone. Following a scathing indictment last year of the provincial homecare program as inconsistent with the needs of a frail population, Quebec injected an additional $17 million in Montreal for the 2013-14 fiscal year. The Quebec auditor-general’s report also said the program lacks universal standards and there were wide variations in the type of services available.

Saying seniors want to grow old at home, Quebec shifted gears and adopted a homecare policy last year. It tabled legislation to provide an additional $100 million a year for an insurance fund for homecare and support services, up from $4.3 billion a year it already earmarked for long-term care until 2017-18, but health critics said the increase was too modest to keep up with burgeoning demands.

In keeping with the new policy, medically stable patients are moved out of hospitals and rehab centres. Health agencies must move patients quickly or face a threat of fines.

Provision, however, for home support other than medical care — cooking, housecleaning, bathing, dressing, and feeding and transportation, etc. — remains sketchy.

Many have told The Gazette of serious problems getting care. One woman complained that her elderly mother was sent home in a taxi — and the neighbour had to help her to bed. She subsequently returned to the hospital by ambulance five times within two weeks when homecare failed.

Often adult children fill the care gap. Jeff Knowles quit work to care for his father. It took two years — Knowles was on the brink of declaring bankruptcy — before the CLSC started delivering promised services, about 18 hours a week or two-and-and-half hours a day.

But many seniors, like Spanier, live alone. About 52,700 Montrealers get homecare services. Quebec “intensified” homecare to address the auditor-general’s concerns, said Lydia Ingenito, the Montreal Health and Social Services Agency’s (MHSSA) assistant director of services for elderly people with loss of autonomy.

Ingenito would not discuss individual cases, but said that homecare is a combination of “many little services,” from access to a nurse by telephone at night to providing hospital bed rentals, wound care and physiotherapy.

“It’s not a one-size fits all,” she said. A person who is unable to cook but can use the microwave will be referred to food-delivery resources like Meals-on-Wheels.

“But it’s not the CLSC that will be going to someone’s home and doing the cooking,” she said.

Mainly, homecare means hygiene care, she added.

“But a CLSC cannot be there 24/7 like in a nursing home.”

CLSC staff (nurses, social workers, orderlies) deliver services directly and Quebec also makes use of a publicly funded, self-managed care program called Programme d’allocation directe-chèque emploi, which is common in other provinces. It allocates funds so individuals can buy home and community care services (usually bathing, dressing, toilet help) from personal care workers from private agencies. It’s the client, not the CLSC, who determines when and how the care is delivered, Ingenito said.

The MHSSA is attempting to harmonize homecare services from one CLSC to another, Ingenito said, as well as put an end to “the ceiling of services” to better respond to clients’ needs.

But they don’t have the resources, Spanier said. How is a nurse’s visit every morning and two baths a week adequate?

“The services that the CLSC is able to provide versus what I need do not match,” said Spanier. “I need more than an hour just to get me in and out of the shower because (the bathroom is) not adapted.”

It boils down to money and resources, said Peter Eusanio, president of Comfort Keepers, West Island branch, a private company that provides senior homecare. “It’s no secret seniors are living longer and the government is backed to the wall on how to assist them.”

Unfortunately, variations of Spanier’s situation are common, said Eusanio, who started his business a decade ago when his elderly mother needed more help than the system provided.

The CLSCs outsource “hours” to companies like Eusanio, who explained that there is a bidding process for caseloads.

“Five hours a day would be on the generous side,” Eusanio said of Spanier’s situation. “One-and-half to three hours is what we’re dealing with mostly, unless it’s a serious case. We have to follow the CLSC care plan.”

“They need baths or showers or for the house to be cleaned and the fridge (contents) to be rotated, and you can’t do it in an hour-and-a-half,” he said.

Montreal’s Comfort Keepers has 400 to 500 caregivers and in excess of 125 nurses. Often, their private clients are adult children who request help for their elderly parents in the public health system.

Each CLSC has its own rules, some offer “Cadillac” care and some are so strapped it’s “criminal,” said registered nurse Marie-Claude Mainville, director of Nova Montreal, a non-profit organization working with the frail elderly.

Some families believe they should help pay for care of their aging parents, Mainville said, while others who could afford to pay for services demand everything free.

“With cuts in budgets to CLSC and hospitals, we are seeing more and more people left on their own,” she said. With government policy leaning to homecare, patients are rapidly assessed and evaluated, so that’s an improvement. “But patients are falling though the cracks. I saw it in my own family. No one will come and give you a pain shot every two hours. You could get someone from an agency, but that costs a lot of money.”

Someone with a handicap needs help beyond one or two nights, it’s for the rest of their life, she said.

“Homecare is not set up for that,” Mainville said. “And with the aging of the population, the government will provide less and less.”

Before his party was voted out of office, former Quebec health minister Réjean Hébert proposed an innovative insurance plan to deal with aging and homecare. It would have brought out-of-pocket homecare and long-term care costs down to about 60 per cent from 80 per cent. The current health minister nixed the insurance plan as too costly and expects to deliver a revised homecare policy in the fall.

Meanwhile, Spanier is speaking about her situation because vulnerable seniors are not getting sufficient homecare to cover their needs, she said.

“Five months without physiotherapy is unacceptable.

“We send people home — elderly people — and the number of hours they receive is insignificant, in terms of what they need. The financial repercussions are enormous,” she said. “I’m disappointed in the way society treats its seniors.”

Spanier said she couldn’t do it without the generous help of her friends. One does her grocery shopping and banking, others are collecting donations. She has Meals-on-Wheels deliver twice a week.

This week, the CLSC called to say Spanier can expect a physiotherapist by Thursday.

Homecare a national concern

Demand for services is outpacing the funding right across the country, said Canadian Homecare Association executive director Nadine Henningsen. “It’s not localized to Montreal or Quebec.”
About 1.4 million people were getting homecare in 2011, an increase of 55 per cent from 2008. Yet only four per cent of public funding goes to homecare, said Henningsen, referring to 2010 statistics from the Canadian Institute for Health Information — of the $3,957 per capita spent on public health care, $159 is spent on homecare.
With financial pressure on hospitals to shorten patient stays, all provinces are looking to homecare as a viable option, she said. “But the problem is that the money isn’t shifting to assure the breadth of services are available,” she said. That includes for non-medical home support such as bathroom help, dressing, and coordinating community support and respite for caregivers to prevent burnout.
In fact, Quebec has some of the best programs, Henningsen said.
“They recognize that you’ve got to provide everything, but (homecare is) rationed because they don’t have the dollars to do it.

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