PHOTO: Toronto Star
When she’s excited, she squeals and giggles, punctuating her delight by clapping her hands. When she’s anxious, she paces or taps the back of her hand under her chin.
Her family and caregivers can tell when she’s hungry, or when she has a migraine coming on. They notice a disapproving side-eye, and can distinguish between when she’s feeling distressed or merely annoyed. They know when she feels safe and comfortable.
“Once you know Mags, her cues are pretty clear,” said Sarah Bonham, one of Maggie’s longtime personal support workers.
“She’s very opinionated. It’s just about knowing how she communicates.”
Maggie, who will turn 19 this weekend, has Angelman syndrome, a genetic disorder that causes significant physical and intellectual disabilities. She’s non-verbal, developmentally delayed and requires nearly constant care. She’s also a bubbly teenager with an active life.
While her parents have worked hard to keep Maggie’s voice central to all decisions about her life, an inflexible provincial policy means they will lose important funding unless they permanently suppress her decision-making authority over her property and finances.
Erin Sheldon and Rob Hickey, Maggie’s parents, have spent years fostering a community for their daughter rooted in supported decision-making, which encourages people with disabilities to make their own decisions with the help of friends and family.
They recently formalized parts of this philosophy by incorporating a non-profit Microboard, a group of five people who commit to maintain a relationship with Maggie, “respond to the initiatives she expresses” and advocate on her behalf. The Microboard, which includes Maggie’s parents, her longtime educational assistant, the executive director of the local Community Living chapter and another mother of a child with Angelman syndrome, also employs Maggie’s caregivers and manages her finances.
Microboards are celebrated by disability rights experts as a progressive way for people with disabilities to assert greater control over their lives.
But Ontario’s Ministry of Health has told Maggie’s parents they will not recognize Maggie’s Microboard and she will lose some of the funding she currently receives unless she has a guardian of property.
The ministry has taken this position despite years of lobbying against the policy by advocates and calls for reform from legal analysts.
Guardianship, through which a court would appoint someone to permanently manage Maggie’s property and finances, is a non-starter for Maggie’s parents, who consider it antithetical to how they have raised their daughter. They have long resisted anything they feel would disenfranchise or infantilize Maggie, and they believe guardianship ultimately strips her of her personhood.
“It would really slowly poison everything we’re trying to do for Maggie,” Sheldon said.
The decision to forgo guardianship will cost them about $2,200 per month in funding they could use to pay a personal support worker. While Maggie’s parents say they can afford to absorb the loss, they worry other families will feel pressured to unnecessarily impose guardianship on their children.
“Families all across Ontario are facing this,” said Betty Daley, president of Family Alliance Ontario, an advocacy group for families supporting people with developmental disabilities.
“Families have been given the message: you either apply for guardianship or you lose the funding,” she said.
The province would not comment on the specifics of Maggie’s case. Adults who are incapable of making their own decisions are required to have either a power of attorney or a court-appointed guardian of property if they are to receive self-directed funding for personal support workers, a Ministry of Health spokesperson said.
Maggie is not capable of appointing a power of attorney herself, so having a guardian of property is the only option in her case.
The government spokesperson said a guardian of property is “expected” to consult with the person under guardianship and their family when making decisions to “ensure a client-centred approach to care.”
The legal framework the ministry abides by “does not provide for a microboard,” the spokesperson said.
Maggie’s family is intending to file a claim with the Human Rights Tribunal of Ontario, arguing the ministry’s decision amounts to discrimination on the basis of disability.
For Maggie’s father, his daughter’s case raises questions far beyond a single funding decision.
“It’s ‘Do you have the right to exist without being under the legal authority of another person?’”
The specific type of funding Maggie and others are in danger of losing is provided through a provincial program called Family-Managed Home Care, which is delivered by Home and Community Care Support Services organizations, formerly known as Local Health Integration Networks.
The program allows families to receive funding for home-care services directly so they can hire and schedule caregivers themselves, rather than have them assigned by an agency. For Maggie, it ensures familiarity and consistency in her care, which her family considers essential to her well-being.
The conflict arose when Maggie turned 18. That’s when the program requires adults who are incapable of managing their own finances to either appoint a power of attorney or have a guardian of property appointed for them to continue to receive funding. The ministry has told Maggie’s parents they have until Maggie’s 19th birthday, Aug. 13, to establish guardianship or lose their funding.
Brendon Pooran, a Toronto-based lawyer specializing in disability law who has been hired by Maggie’s family, said requiring guardianship in this way is contrary to human rights law, both domestic and international.
Ontario’s law governing guardianship — the Substitute Decisions Act — states that the court should not appoint a guardian if the need for decision-making can be met by a “less restrictive” alternative. Pooran argues there are many such alternatives in Maggie’s case, including her Microboard.
He also pointed to Article 12 of the United Nations Convention on the Rights of Persons With Disabilities, ratified by Canada in 2010, which states, in part, that people with disabilities are equal before the law and that they have an equal right to control their own financial affairs.
Pooran said the province needs to update its policies to bring them in line with their human rights obligations.
“I would suggest that it’s incumbent upon the province here to establish some sort of legal framework that recognizes supported decision-making,” he said.
Community Living Ontario, a non-profit advocacy organization for people with intellectual disabilities and their families, has been in discussions with the Ministry of Health on this issue for more than two years, CEO Chris Beesley said in an interview.
Beesley said ministry representatives were initially receptive to their concerns, but there has been little action on changing the policy. “A lot of hanging on and not a lot of forward momentum.”
It shouldn’t be an “all-or-nothing scenario” where someone is seen as either fully capable or fully incapable, he said, adding that forcing people in Maggie’s situation to choose between guardianship and accessing health-care services is discriminatory.
“People should not have their rights stripped away because our systems haven’t figured out how to catch up with those rights.”
The Law Commission of Ontario published a report in 2017 calling for significant reforms to the province’s laws on legal capacity, decision-making and guardianship.
The authors were particularly critical about the province’s approach to guardianship, calling for “legal tools that are less binary and more responsive to the range of needs of those directly affected” and said the appointment of guardians “should be a last resort due to their extraordinary impact on the autonomy of the individuals affected.”
Specifically, they recommended that the provincial government “strengthen” existing requirements to consider a “least restrictive alternative” to guardianship.
They also highlighted Microboards as an example of supported decision-making that preserves an individual’s legal capacity while also ensuring accountability.
Microboards refer to a small group of friends and family who work with a person with a disability to plan their life and, in some cases, manage their finances.
The term is trademarked by Vela Canada, a B.C.-based organization that created the concept and works with families to develop their own.
“The whole idea of it is to empower the person,” said Linda Perry, Vela’s founder and past executive director.
Members of a Microboard work together to interpret the preferences of the person at its centre, who may not be able to communicate verbally.
There are more than 1,100 Microboards in B.C. today, according to Vela, but when the idea was conceived more than 30 years ago it took years of determined advocacy before governments saw the benefit, Perry said.
“We’ve got a lot of supporters in government now.”
One of the more puzzling aspects of the Ministry of Health’s insistence that Maggie be put under guardianship is that other provincial ministries don’t have the same requirements. Maggie also receives money through the Ontario Disability Support Program, which is delivered through the Ministry of Children, Community and Social Services. Maggie’s father is the trustee of those funds, though Maggie is not required to have a formal guardian in order to receive them.
“The same government, same source of funds in terms of Ontario taxpayers, a completely different administrative set of requirements for Maggie’s retention of rights,” Hickey said, adding that the main obstacle seems to be a lack of administrative flexibility. “It does just seem like the computer says this is the way that we have to do it.”
The Ministry of Health said it could not comment on the “program requirements” of different ministries.
One of the characteristics of Angelman syndrome is an atypically happy demeanour, marked by frequent laughter, smiling and general excitability.
For Maggie, this manifests most clearly when she sees someone she loves.
Earlier this summer she was lounging in a hammock, playing on an iPad in her family’s living room when two of her longtime personal support workers showed up for a visit.
“It’s about to get noisy,” Maggie’s mother warned as the two women walked up to the front door, just out of Maggie’s view.
When Maggie saw them in the doorway she let out a joyful, high-pitched scream. Giddy and clapping, she took them both by the hands and pulled them into the house.
“She makes you feel really good,” said Vanessa Rogers, who has worked as one of Maggie’s PSWs for 10 years. “If you’re feeling down she can lift you up.”
“If she hasn’t seen you for a while she’ll kiss you for like 10 minutes,” said Bonham, who has known Maggie since elementary school and joined her PSW team a few years ago.
One of the reasons Family-Managed Home Care is so important to Maggie’s family is that it ensures she can have the same caregivers, who are like family.
“We are, 100 per cent, a big village,” said Darci Snyder, another PSW who has worked with Maggie for a decade.
Given their familiarity, they are well attuned to Maggie’s feelings and preferences.
And Maggie clearly has preferences. She loves children and marshmallows. She hates mornings. She expresses herself with her body language and facial expressions, with non-verbal vocalizations and by gesturing for what she wants. She also “votes with her feet,” as her mom says, by leaving a place she no longer wants to be.
“If we took Maggie before a judge right now, could she express herself in a way that the judge would understand? No,” her father said. “But if you ask that team out there what Maggie’s decision was, they’d know it exactly.”
Even if Maggie loses her Family-Managed Home Care funding, her parents say they will continue to employ her PSWs and will simply pay more out of pocket or make do with fewer hours of care.
But for many families, losing funding for 14 hours of care per week is not an option.
“There’s a whole bunch of families who don’t have our resources, who don’t have additional funding,” Sheldon said. “So I actually think this fight is more for them than for us.”
That said, they are fighting for Maggie, too, and they are motivated by all the times she asserted her right to exist in the face of a less-than-accommodating world.
Sheldon recalled how Maggie nearly died of acute respiratory distress following a tonsillectomy, just days before she was supposed to start kindergarten.
Doctors said she had a 50 per cent chance of survival. After three weeks in the ICU she was able to return home, but she had lost many of her skills and had to relearn how to walk. She had already lost her ability to walk once before following a seizure.
“You can’t watch your kid learn to walk for the third time and not be like, ‘OK, this kid’s a warrior,’” Sheldon said, through tears. “She never felt sorry for herself. She just kept getting up and just kept going.”
Like any teenager, Maggie has become more opinionated as she has grown up. She is drawing clearer boundaries with her parents, which they welcome.
“I’m constantly asking, ‘Where can I let go?’” Sheldon said. “By the time Maggie is 30, I want her to be making decisions I disagree with, just like when I was 30 I was making decisions my mom disagreed with.”
Guardianship would do the opposite, she said. “It would be literally stripping her back down to infancy.”