When Tim and Natalie Rose first moved in together, they had no idea that doing so would cause them to lose their income and leave them thousands of dollars in debt.
But that can be the reality for many couples when one or both partners receive assistance from the Ontario Disability Support Program, or ODSP.
The pair met just before Tim moved to England to study human-rights law, but they knew there was a connection, so they gave long distance a try.
“We kind of realized as I was leaving for England that we just wanted to be together all the time,” Tim says.
Their relationship lasted the year’s separation, and when Tim returned to his native Toronto, Natalie was looking for a place to live as well.
“We decided to move in together right away, actually, because of disability,” Natalie explained. Tim has cerebral palsy and requires at least a semi-accessible apartment to accommodate his wheelchair. Because of the lack of such apartments in Toronto, he had thought he would have to move into an assisted-living arrangement at first, which would have made it difficult for Natalie to visit him. And Natalie would not have been able to afford an accessible space on her own. “We just thought, you know what, it would just be easier and make more sense to move in together,” she says. Eventually, they found a space that worked.
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Tim was supporting himself through ODSP. Unlike Ontario Works, which is designed for short-term assistance, it provides recipients with support for long periods of time — sometimes their whole adult lives. The rates are higher, and there are less stringent clawbacks for things like employment income, gifts, and assets. This is a recognition of the fact that living with a permanent disability is expensive and that it can be difficult, if not impossible, to find long-term, stable employment, especially of the kind that will offer the health benefits and prescription drug coverage many people with disabilities need.
As Tim was required to inform the program of any changes in his household, he gave ODSP his new address and said he was moving in with a girlfriend. So that he wouldn’t lose his income or health benefits, they kept their finances completely separate and reported their income every month, believing that they were in compliance with the rules. At first, nothing happened.
Over time, it became clear that they wanted their relationship to be more permanent, and when they filed their taxes the following year, it was as common-law partners. They admit to having done so in error, not realizing that keeping separate finances was not enough, and they believed themselves to have acted in line with ODSP’s policy directives until that point.
But they had run afoul of the program’s marriage regulations. Tim’s new caseworker told them that Tim should no longer be on ODSP and that his income and assets needed to be recalculated based on Natalie’s. Social assistance considers people living as a family in the same household as part of a “benefit unit,” not as single individuals. This means that income and expenses are calculated as a whole. If a recipient is part of a couple, the couple can currently receive a maximum of $952 per month for basic needs and $769 for shelter costs, excluding benefits for work-related, disability, or child-care expenses. (Different rules and limits apply when both spouses are disabled.)
Then, as now, any member of a unit who worked would be able to earn $200 a month without clawbacks. Every additional dollar after that is clawed back at a rate of 50 per cent.
At the time, Natalie was making around $1,000 a month from sporadic work doing occupational-therapy education. The couple says they couldn’t have survived on her income alone, and it was low enough that they still would have qualified for benefits, albeit at a reduced rate. More important, they would still have been eligible for medical and dental coverage through the program.
However, Natalie also had a $10,000 bond left over from savings her parents had put away for her education. Under asset limits at the time, recipients were prohibited from having more than $5,000 in assets per single person, or $7,500 per couple. This alone disqualified her and Tim from receiving ODSP income support or benefits at all. (The asset limits were raised in 2017 to $40,000 for a single person and $50,000 for a couple, not including exempt assets such as life-insurance policies.)
ODSP representatives also told them that, according to their regulations, they had been considered spouses not from the time they filed as common-law, but from three months after they moved in together. This meant that the couple was liable for all of Tim’s support payments during that period, as well as ODSP’s portion of a new wheelchair and dental work. (ODSP covers only 25 per cent of the cost of any new wheelchair; the other 75 per cent is covered under the province’s Assistive Devices Program.) The total bill came to around $27,000.
According to a representative of the program, when a person, couple, or family is in receipt of ODSP and starts making too much money to receive income support, they can still be covered under transitional or extended health-benefit programs. These programs exist so that no one will lose health coverage as a consequence of starting work, and cover the same things ODSP health insurance does, like prescription drugs, equipment, and dental care.
But because Natalie’s assets were too high under the old rules, she and Tim were not eligible for the program at all and were told they had to pay back the entirety of the medical costs.
“We were terrified,” Tim says. “We were sick to our stomach. I felt incredibly guilty.” The only way for the couple to get back on ODSP was for Natalie to get rid of her savings. She says she asked what she should do with it, and the caseworker told her she should “buy things like TVs or even put a down payment on a house.” When they questioned whether $10,000 would be enough for a down payment on a property in Toronto, they were reassured that it was possible. “[The caseworker] said to us, ‘Don’t worry about it. I just slapped a $93,000 debt on somebody yesterday,’” Natalie recalled. “She acted like it wasn’t a big deal at all.”
While the couple wrestled with what to do, they experienced doubts about their relationship, even considered breaking up. Both say they felt responsible for the impact of the situation on the other.
“For me, it made me feel like a total worthless drain on society, a drain on my wife, and a drain on my marriage,” says Tim.
“I felt like my presence in his life was actually affecting him negatively,” adds Natalie, who says she felt guilty because Tim had lost not only his income, but also his access to medical equipment and dental care.
The program’s rules for who is considered a spouse and after how long are a subject of contention among disabled people, and the legality of these rules has been challenged in the past.
Jennifer and Dan Aucoin are among those who have challenged it: in 2016, they were part of a group that brought a case before the Ontario Human Rights Tribunal. When Dan and Jennifer married in 2013, Dan was initially cut off from income support entirely because Jennifer was still receiving child support from a previous marriage. Jennifer’s income was considered a replacement for the income that Dan received in his own name. The couple, along with others, challenged this on the basis that it was not consistent with the Family Law Act.
The Ontario Family Law Act says that a couple should be deemed spouses if they have continuously cohabited in a marriage-like relationship “for a period of not less than three years.”
According to the Canada Revenue Agency, for tax purposes, the term “spouse” applies “only to a person to whom you are legally married,” while a common-law partner can be anyone with whom you have been living in a conjugal relationship for at least 12 continuous months.
Neither of these definitions is used by ODSP. In order to be considered a spouse under that program, you have to have been living together in a marriage-like relationship for only three months. The Aucoins argued that this constituted discrimination because, in their view, they did not have access to the rights of spouses in Ontario.
“Not only is this a human-rights violation because it discriminates against people with disabilities, but it puts couples with one on ODSP and one not in a very difficult position,” says Jennifer.
Dan calls the system degrading. “You’re not allowed your independence,” he says.
The tribunal did not agree. It found that the Aucoins and their fellow plaintiffs were not being discriminated against on the basis of disability, because the province can choose to set whatever conditions it likes on the receipt of income support. And because ODSP is a “program of last resort,” recipients have an obligation to seek other sources of income, including from their spouses.
The Aucoins say they plan to challenge the decision.
Kyle Vose, chair of the ODSP Action Coalition, a group that lobbies for changes to the program, says its marriage policies can lead to assault and abuse because they make one partner dependent on the other. “If you’re living with someone and they have to pay for all your medication, they have to look after you because you have no income — they can now take advantage of you ... That leaves the person with a disability at a disadvantage, instead of having their own income and their own money.”
“If someone was making $100,000 a year, or $200,000,” he says, “then maybe they don’t need it. But we’re talking about people who are making minimum wage. The system is set up to fail, and it’s set up to keep people living in poverty. And that’s not right.”
Vose is optimistic that if there is enough public outcry, the provincial government may update the policy. “A lot of our demands have been met in the last year or so,” he explains, pointing to recent changes related to child-support and asset limits. Consultations coordinated by the ODSP Action Coalition with people who use ODSP have shown that people believe spousal regulations should be the next area targeted for reform.
“We call it the double-disability clause. We argue that they should be rating the person on the person, not on the relationship they’re in, because if they do, what ends up happening is people don’t qualify,” Vose says.
Not every recipient thinks the system is unfair. Michael Feir is blind and has been married twice, both times to blind people who receive ODSP, as he does. He says he believes the ODSP regulations constitute a fair way to account for the shared expenses of living as a couple. “You’re living in the same place, you’re paying the same rent, so a lot of the costs get shared,” he says.
Feir says that there are challenges but that the issue is not as clear-cut as it seems. The real barrier for couples, he argues, is the lack of subsidized housing for people with disabilities. “If you have subsidized housing, the system can work reasonably well, because that’s where most of your money gets chewed up if you don’t,” he says.
The amount for shelter costs given to ODSP recipients assumes they are paying subsidized rent. Since many people don’t have that, their rent ends up taking up much of the money they get every month for basic needs.
Feir and his second wife live in a subsidized apartment now, something he and his first wife never had access to. “Part of what destroyed our marriage was the sheer not knowing, waiting, going through all our savings, having to rely on our parents to support us financially,” he says.
Tim and Natalie’s story has a happy ending. Eventually, they were able to reduce their debt by negotiating a solution with the province. When Natalie went back to school to get her doctorate, the couple was able to get back on ODSP. In a strange twist, Natalie was classified as the recipient and Tim as her spouse, because, even though Tim was the one with the permanent disability, it was her student status that granted them both eligibility.
“Your tax dollars went to supporting me, and I didn’t even want it,” says Natalie. “I was an ODSP recipient for two years.”
They were able to meet with a financial adviser who told them how they can have assets allowed by ODSP. Programs such as the Registered Disability Savings Plan, or RDSP, allow people with disabilities to save without affecting their asset limits.
After a while, Tim was able to find full-time work: the couple currently does not receive ODSP or any other income support. But many other families like theirs do not know what the future will hold.
The former Liberal government commissioned a report outlining proposed recommendations for the reform of various social-assistance programs, including Ontario Works and ODSP. Among the working group’s findings was the recommendation that there should be an “assured income standard” for people with disabilities in the province — “a floor below which no one should fall.” This would mean that people and families living with disabilities would be entitled to a certain standard of living, regardless of employment or marital status, which would make it easier to transition on and off the program with a change in life circumstances. The report also recommends that ODSP’s definition of a spouse should be changed to bring it in line with the Family Law Act, meaning that a couple would be considered spouses after three years of living together — not three months.
Under the 2018 Liberal budget, the ODSP's definition of a spouse would have been brought in line with the Family Law Act, based on cohabitation for three years, not three months. However, the new Progressive Conservative government recently announced that the planned changes to the ODSP outlined in the Liberal budget have been “paused.” Community and Social Services Minister Lisa MacLeod has promised that the government will introduce its own reforms to Ontario Works and ODSP by early November.
In the meantime, Natalie Rose says she worries about couples who do not have the resources she and Tim had. “We had so much privilege in our situation ... and it still took, like, a year for us to solve the problem, and you just think how many people don’t have those resources and will just accept whatever ODSP tells them,” she says.
She and Tim are adamant that the policies need to be changed. “We should not have been punished for falling in love,” she says. “It’s hard enough for disabled people to find love to begin with. To punish them further for it is just absolutely despicable. Whether the policies were put in place to do that or not, that’s the end result.”
Sarah Trick is an Ottawa-based journalist who has written for The Walrus and Global News.