Ontario’s home-care providers want more say in reform discussions

Ontario is about to begin a three-year effort to reform its troubled home-care system, but even before the first meetings begin, there is disagreement about who should have a hand in making changes.

Discussions are starting this month against the backdrop of the first of two reports on home care from Ontario’s Auditor-General that will be released on Wednesday. A scathing report to the government from a blue-ribbon panel this spring called on the province to make home-care services easier to navigate and more accountable. An investigation by The Globe and Mail found a system plagued by inconsistent standards of care, byzantine processes and a lack of transparency for patients and family caregivers.

Now, some of those involved in delivering care, including one member of the government’s own expert panel, say people on the front lines have not been given a big enough role. A group that represents more than 600 non-profit agencies whose support helps the sick and the elderly remain in their homes has begun a letter-writing campaign to the Ministry of Health and Long-Term Care, demanding more say in the discussions.

“We need to have all the right voices around the table,” said Samir Sinha, a member of the expert panel and director of geriatrics at two of Toronto’s largest hospital networks. “Some people feel the process hasn’t been set up for success.”

Getting it right is crucial for the Liberal government as it looks to shift an ever-increasing share of health care out of expensive beds in hospitals and long-term care and into the home. The government has pledged to put “patients first,” but to do that it must untangle a complex system of services administered by 14 agencies across the province and delivered by hundreds of providers, from large corporations to small non-profits.

Those critical of the discussions point to the fact that the two leadership roles have been given to the head of a Toronto hospital and the CEO of the Toronto Central Community Care Access Centre – one of 14 provincial agencies now responsible for administering home care.

Deborah Simon, CEO of the Ontario Community Support Association, which speaks for non-profit agencies that deliver community and home care, says her members need a stronger voice in the reforms.

“It is absolutely a non-starter for us,” she said of the ministry’s plans. “You can’t look at transformation of the sector without front-line representation – they know best.”

Ministry documents obtained by The Globe and Mail lay out a complex plan for discussions that centre on two groups. One is an advisory body led by a senior provincial official and Tim Rutledge, CEO of North York General Hospital. The other is a group responsible for implementation, made up of the ministry, Dr. Rutledge and the leadership of community-care access centres and the province’s local health networks.

Each group will meet every other month for three years, as will some smaller committees focused on individual issues such as caregiver support and developing uniform standards of care.

The expert panel recommended that the ministry appoint an individual from outside government to champion the reforms. A spokesman said the ministry “has not yet named a co-lead as recommended” in the report.

Dr. Sinha said the issue is not the individuals involved, but the fact that no providers are included in the implementation discussions. The makeup of the group sends a message, he said, and people may decide not to be involved because they feel – rightly or wrongly – their concerns will not be heard. The province’s 14 community-care access centres, which decide who gets home care and how much, have been a lightning rod for critics, and some people want them to be scrapped.

The Ministry of Health and Long-Term Care said groups such as community support agencies and primary-care doctors will have a role in recommendations and specific initiatives through the advisory committee. “By establishing this governance structure, the ministry is able to consult broadly with patients, and caregivers, as well as service providers and sector partners, and ensure that all voices are heard,” a spokesman said in an e-mail.

Follow Elizabeth Church on Twitter: @lizchurchto