Ontario Ministry of Health reverses course on guardianship requirement for disabled woman

Posted on September 14, 2022 in Inclusion Delivery System

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TheStar.com – News/Investigations
Sept. 14, 2022.   By Brendan Kennedy, Social Justice Investigative Reporter

The policy change comes after the Star reported on the ultimatum given to a Kingston woman: lose her funding or her independence.

Ontario will stop requiring disabled people who are unable to manage their own finances to have a court-appointed guardian to receive home-care funding as adults.

The policy change comes just weeks after the Star reported on the case of Maggie Hickey, a 19-year-old Kingston woman whose parents were told they would lose funding for Maggie’s personal support workers unless they imposed formal guardianship on their daughter.

“I’m so happy,” said Erin Sheldon, Maggie’s mother, who with her husband, Rob Hickey, had filed a human rights claim against the province.

Maggie’s parents resisted guardianship — a lengthy and expensive process that would have permanently suppressed their daughter’s control over her property and finances — because they believed it restricted her rights and would ultimately strip her of her personhood.

“It would really slowly poison everything we’re trying to do for Maggie,” Sheldon said in a previous interview.

For Maggie’s parents, guardianship is antithetical to how they have raised their daughter. They have long fostered a community for their daughter rooted in supported decision-making, which encourages people with disabilities to make decisions for themselves with the help of friends and family.

They recently incorporated a non-profit “microboard,” a small group of people who work with someone with a disability to help them make decisions and, in some cases, manage their finances. It was a way to create a support system that would gradually increase Maggie’s independence.

They had hoped the Ministry of Health would also see the benefit of such a support system, which they argued offered greater accountability for government funding while also protecting Maggie’s rights. The ministry, however, had said its policies did not allow for a microboard.

Prior to Maggie’s family taking up the cause, disability advocates had for several years tried to convince the Ministry of Health to amend its funding policies to allow for a less-restrictive alternative to guardianship, to no avail.

After the Star story, suddenly there was a will, Sheldon said.

“When a small group of people directly affected raised this issue for years nothing happened. It was only when you guys showed that actually a lot of people care — that this isn’t just a special issue for a small group, this is a legitimate issue for all of us to be concerned about — that we saw change.”

The Ministry of Health had told Maggie’s parents that if they did not impose guardianship on their daughter, she could no longer receive funding through the Family-Managed Home Care program, which provided about $2,200 per month for personal support workers.

Beginning this month, parents or other substitute decision makers who already manage government funding on behalf of someone else — specifically funding from the Ministry of Children, Community and Social Services via the Passport, Ontario Works and/or the Ontario Disability Support programs — can continue to manage funding from the Family-Managed Home Care program without having to obtain guardianship over the person for whom they’re caring.

A Ministry of Health spokesperson confirmed the policy change in an email to the Star, saying the adjustment is “responsive to client preferences” and “improves alignment” with other government programs.

It’s a narrow policy change, but it means families now have an option other than guardianship, said Brendon Pooran, a lawyer hired by the Hickeys who specializes in disability rights.

“By recognizing a broader range of decision-makers, the ministry has implemented a less restrictive course of action that is consistent with our legislative framework,” Pooran wrote in an email.

Pooran had argued that the ministry’s policy was not only contrary to Ontario’s own law governing guardianship — which requires the government to consider less-restrictive alternatives — but also the United Nations Convention on the Rights of Persons with Disabilities, to which Canada is a party.

“Because guardianship restricts a person’s decision-making rights, typically for the rest of their life, the law requires that guardianship only be approved as a mechanism of last resort,” Pooran said.

Pooran said Ontario still requires guardianship for other programs, namely the Registered Disability Savings Plan, a government-matching savings plan for people with disabilities.

“Unlike other provinces and territories, Ontario has refused to implement a legal framework which recognizes that some people may require support when it comes to making everyday decisions,” Pooran said. “Instead, people are often labelled as incapable and forced to relinquish their legal rights.”

Maggie Hickey has a condition called Angelman syndrome, which causes significant physical and intellectual disabilities. She doesn’t speak, but she does communicate with body language and non-verbal vocalizations.

To those who know her well, Maggie communicates clearly. They know her preferences, and they can generally read her mood and can tell how she feels.

“Once you know Mags, her cues are pretty clear,” one of her longtime personal support workers said in a previous interview.

Since the article about her daughter was published, Sheldon said she has heard from dozens of families in similar situations, some of whom elected to become formal guardians of their children because they thought it was the only option.

“So many people have just been told this is just what you do when your child turns 18.”

Sheldon said she is planning to organize an information session this fall or winter with Community Living Ontario to help parents of children with disabilities understand alternatives to guardianship.

She said she is happy not only for her own family, but all the families going forward who won’t have to fight the same battle.

“So many other families laid the groundwork for everything for Maggie. I feel like we got to take something on and pay it forward.”

Brendan Kennedy is a Toronto-based social justice reporter on the Star’s investigations team. 

https://www.thestar.com/news/investigations/2022/09/14/ontario-ministry-of-health-reverses-course-on-guardianship-requirement-for-disabled-woman.html?source=newsletter&utm_source=ts_nl&utm_medium=email&utm_email=0C810E7AE4E7C3CEB3816076F6F9881B&utm_campaign=bn_144754

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