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Barely hanging on to life : Roger Foley shares his fight for home care with UN envoy

Barely hanging on to life : Roger Foley shares his fight for home care with UN envoy
Health
A United Nations disabilities advocate says systemic change is desperately needed after she toured Canada to review cases of people with disabilities, including a complaint from a terminally ill man who has been in a London, Ont., hospital while fighting to get self-directed care at home.

Roger Foley suffers from cerebellar ataxia, a fatal neurological disorder that limits his ability to move his arms and legs. He launched a landmark lawsuit against a London, Ont., hospital, several health agencies, the Ontario government and the federal government, alleging that health officials would not provide him with an .

Instead, Foley alleges, he was offered, among other things, a medically assisted death.

I am a patient barely who is barelyhanging on to life and suffering enough with my disabilities, he said.

Foleys case was one of several presented to Catalina Devandas Aguilar, a lawyer from Costa Rica and the UNs first ever Rapporteur on the Rights of Persons with Disabilities.

On Friday, after a week-long visit to Canada, she issued a series of strongly-worded recommendations.

Among her chief concerns were reports of patients allegedly pressured to undergo medically assisted deaths, a lack of community care that forces patients into nursing homes, and how the court system fails people with disabilities.

Persons with disabilities have to initiate very lengthy and onerous legal procedures to get their rights recognized, Devandas Aguilar said.

Some 6.2 million people -- or about one in five Canadians -- are considered persons with disabilities.

In her statement, Devandas Aguilar said she was extremely concerned about the implications of assisted dying legislation on people with disabilities after hearing multiple complaints.

I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care, she wrote.

Foley recently qualified to receive the home care he has long struggled for. Regardless, Foleys brother, Rob Foley, said what his brother had to undergo was unfair.

He shouldn t have had to be in a hospital for three years and fight the way hes had to fight, he told CTV News.

Foleys lawyer, Ken Berger, agrees.

This is just wrong. Its outrageous whats happened to Mr. Foley and something needs to be done, Berger said.

And Foley isnt alone. Sean Tagertsuffers fromadvancing ALS and requires around-the-clock care, but he only gets 20 hours a day. He lives with his mother in Powell River, B.C., near his 11-year-old son, for whom he shares joint custody.

Tagerts mother, Patricia Mennittie, said her sons struggle has taken a toll on the family.

Weve done our best as a family to rise to those needs but were becoming exhausted, Mennittie said.

In order to be provided fulltime care, health officials say Tagert would have to be moved to an institution about four hours away, near Vancouver.

Tagert is so desperate that, rather than be forced away from his home and his son, he will opt for a medically assisted death instead.

Advocates call the suggestion that he move heartless.

This is about ripping him from his home and family and community and sticking him far away in a place where he will die alone, said Rhonda Wiebe, co-chair of the Council of Canadians with Disabilities Ending of Life Ethics Committee.

In her letter, Devandas Aguilar also pointed out deficiencies in public transit, guardianship laws and employment.

Rick Hansen, best known for his 1987 Man in Motion tour that brought him to 34 countries in a wheelchair, agrees that the federal government needs to do more to help people with disabilities.

Canada has to step up its game on this issue. Its fundamental for all Canadians. Its a big deal, he told CTV News Channel on Friday.

Specifically, Hansen said all provinces and territories should agree on harmonized rules and regulations to provide across-the-board standards for people with disabilities.

Its a principle Canadians already agree on, Hansen said.

One of the most important things is that if you poll Canadians, 92 per cent of Canadians are clearly behind this is a fundamental thing that Canadians with disabilities should have human rights embedded in this country and should have free access to every opportunity that everybody else has, he said.

Roger Foley suffers from an incurable neurological disease. He shared his struggle in an Ontario hospital with the UNs first ever Rapporteur on the Rights of Persons with Disabilities.
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