Home care for Ontario seniors affected by move to non-profit agencies

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Ontario's home-care system is changing how it delivers care to some clients, a move that will see an array of non-profit agencies take responsibility for services to tens of thousands of seniors who rely on regular support to remain in their homes.

The change to how some personal support is delivered in Canada's largest province is the latest response from a cash-strapped public system that is being asked to deliver the kind of medical care in the community that was once reserved for the hospital ward. As the needs of home-care clients become more complex, those who rely on help with bathing or with medications and meals – the very people who once made up the bulk of those receiving home care – are being squeezed out by provincial agencies struggling to balance their budgets.

The solution, quietly introduced by the Ontario government in regulatory changes last summer, is a provincewide hand-off of care to local non-profit agencies that is already affecting roughly 800 people who live in the area around Hamilton, Niagara and Brantford. Three other areas have been picked to lead the change in the coming months – regions that include Ottawa, Sudbury and a section of the province that includes Scarborough in east-end Toronto as well as Oshawa.

Supporters of the switch say it will free up staff at the province's 14 Community Care Access Centres (CCACs) – the local government agencies that co-ordinate home care in Ontario – to focus their attention on higher needs clients, while making the most of non-profit community organizations such as the March of Dimes. The shift makes better use of medical expertise and limited financial resources, they say, similar to pharmacists giving flu shots rather than doctors.

"This is just putting the client where the client should be," said Deborah Simon, the chief executive officer of the Ontario Community Support Association, which represents hundreds of non-profit agencies. "Our organization has lobbied for years that we can do this."

Critics say the new policy introduces another layer of complexity to a provincial system that has long been criticized as overly bureaucratic and difficult to navigate. In practical terms, it means many seniors will face a choice between changing the person who comes into their homes each week, often to help with intimate tasks such as bathing, or paying out of pocket to keep their care provider.

In a three-month investigation, The Globe and Mail talked to dozens of previous and current patients as well as front-line staff, community groups, unions, for-profit and non-profit home-care providers and industry organizations, and found that Ontario's home-care system is plagued by inconsistent standards of care, byzantine processes and a troubling lack of transparency.

The Globe also found that, in an effort to save money, some CCACs have been handing off lower-needs clients to the non-profit sector in an ad hoc fashion for years, long before last summer's regulatory change.

Trudie Davies was told in the fall of 2012 that her weekly services would be cut from two CCAC-funded baths to one at her apartment in Oakville, Ont. The arthritis-wracked widow, now 83, was offered a second weekly bath from a local non-profit organization called Links2Care.

Reluctant to invite a new worker into her home, Ms. Davies, with the help of her son, Glen Davies, appealed the cut to a quasi-judicial panel called the Health Services Appeal and Review Board. The family agreed to drop the appeal in the spring of 2013 when the Mississauga Halton CCAC allowed Ms. Davies to keep her two CCAC-funded weekly appointments because, by that time, Links2Care had a waiting list and could not provide help to Ms. Davies.

In the course of the abandoned appeal, Mr. Davies obtained an Oct. 1, 2012, internal memo from the CCAC's then-vice-president of client services that described how "financial pressures" were forcing the agency to direct lower-needs clients to non-profit agencies. Despite that policy being in place for two years, the memo's author noted that nearly 700 mild-needs clients who remained on the organization's roster still had to be "navigated" out of the CCAC system and into the non-profit sector.

This spring, the CCAC cut Ms. Davies's weekly baths from two to one. Mr. Davies, certain another appeal would be futile, agreed to pay out of pocket for the second weekly visit of his mother's long-time caregiver.

"What's so disturbing about all this is I don't know what vulnerable people do who don't have someone to advocate for them. The bureaucracy is impenetrable," Mr. Davies said.

The local CCAC said that "for many patients, receiving care from a local community-based agency works well." Reducing Ms. Davies's services to one bath a week is "consistent with our CCAC's service guidelines," a spokeswoman said by e-mail, adding that Ms. Davies was given six weeks to adjust to the change and allowed to keep the caregiver with whom she had formed a close bond.

Sherry Kerr heads up Participation House, a small non-profit agency in Brantford, Ont., that was asked last fall to take part in the recent changes enabled by last year's regulations. Her agency has hired and trained staff and is expecting to more than double its caseload with the arrival of as many as 120 new clients. The transition has not been as straightforward as first expected, and the agency has responded by building in extra time to each transfer so that elderly clients have a chance to adjust and say goodbye to care providers who have been in their homes for five or six years.

"At first, as a team we thought we would do it quickly, but we didn't understand the number of people who have had the same caregiver for so long," Ms. Kerr said. So far, two clients have refused to make the change, she said.

Under the existing system, a dollar marked for home care by Ontario's Ministry of Health and Long-Term Care must pass through one of 14 Local Health Integration Networks, or LHINs, which then send it to the corresponding CCAC for the region. That dollar is then passed on to the contracted care provider, which actually delivers the service.

Until the change, local CCACs alone were responsible for assessing clients and case management, as well as contracting out care to third-party service providers. Now, the province's 14 LHINs can directly send money to community support service organizations, such as Participation House, to provide personal support in the home, freeing up the CCAC to focus on higher needs clients.

Ontario's home-care system is already criticized as highly fragmented, and switching over the care for stable clients with low or moderate care needs has the potential to add even more groups to the mix. Who manages waiting lists, what to do with clients as their needs increase, and how best to keep track of those in the system are all issues that will need to be tackled.

The provincial government, for its part, envisions a seamless system – whether care is managed by a local CCAC, as it has been in the past, or a community non-profit that will now receive provincial dollars to deliver home care.

"There is no 'wrong door' to go through for clients to receive information or to access one or more home and community services," states a provincial policy document explaining the 2014 regulation change.

Stacy Daub, CEO of Toronto Central CCAC, argues adding more entry points to the system increases complexity. "This idea of 'no wrong door' has made the system more difficult," she said in an interview. "Why do we need a million doors?"

One early attempt to shift clients to community-care agencies that was later abandoned shows just what can go wrong.

Last fall, the Champlain CCAC, which oversees home care in the Ottawa area, attempted to move individuals identified as stable and having mild to moderate needs over to seven local non-profit agencies as a way to address a funding shortfall. After that effort was stopped, a follow-up survey found that just 17 per cent of those identified to make the switch did so. Another 62 per cent turned to friends and family for help and 21 per cent purchased care.

Chantale LeClerc, chief executive officer of the Champlain LHIN, stresses that all clients were given the option of moving, even if they did not. "I think it was successful to some degree in the sense that many people did decide to move to the community sector," she said.

At Mills Community Support in Lanark County, west of Ottawa, Clem Pelot, the director of community supports and services, says he has no idea what happened to seven of the nine clients they were expecting to get. "We were gearing up to hire staff, do new scheduling, but they never came," he said.

Only two made the switch from the CCAC's care, and his organization had to give back to the LHIN the funds it had received to care for the other seven.

In the Hamilton area, the local LHIN has earmarked $4-million this year for seven non-profit agencies to provide personal support services. Those groups range from large national organizations such as March of Dimes to local non-profits such as Brantford's Participation House.

Officials stress that there is no turning back. From now on, this is the way home care will be delivered, they say, so that CCAC case managers can focus on servicing higher needs patients who would otherwise occupy expensive hospital and long-term care beds.

"We don't see it as another layer," said Rosalind Tarrant, director of access to care for the Hamilton, Niagara, Haldimand, Brant LHIN. "We are working together as one sector."