I used to dream about owning a house someday. Nothing extravagant, just a roof over my head that belongs only to me—a millennial’s dream of a room of my own.
In 2012, that dream was on the horizon. I had finished my education and was living at home with my mother. She owns a modest bungalow in a well-to-do Toronto neighbourhood with a 30-year mortgage and a crumbling foundation, but it belongs entirely to her. My first contract in publishing had just ended, and I was excited about my future prospects. But job offers from future employers never arrived.
In an unfortunate twist of fate, I instead received a phone call from my mother. After years of curious symptoms, her boss had finally sat her down and insisted she see a doctor. She received an MRI, and upon review of the findings, a neurologist immediately sent her to the hospital. My mother was diagnosed with a meningioma, a benign but invasive brain tumour that grows on the membranes around the brain and spinal cord. I stopped applying for jobs and spent the next year at home acting as my mother’s Power of Attorney and caregiver, helping her recover from the craniotomy that removed the fist-sized tumour from her frontal lobe.
My mother was lucky: She worked for the same union for over 30 years and had an incredible employee benefits plan and union representatives who protected her employee rights. She also banked many years of unused sick days and vacation days, giving her almost a full year of paid time off at 100 percent of her salary. As a young adult overwhelmed by my new legal and financial responsibilities, I didn’t recognize what a blessing that this was.
She eventually recovered and was able to return to work with some accommodations. Soon after, I was offered a permanent position with my previous employer, and the office was not too far from home. They offered me a modest but comfortable salary and full benefits; it seemed as though our luck finally turned around. I paid my mother a small amount of rent and put a large portion of my salary into a savings account, dreaming that it might one day be enough for a down payment on a house of my own.
In 2014, I began experiencing health issues of my own. I had back pain, which I dismissed as sciatica. So did the ER doctors at Toronto’s Sunnybrook Hospital, who refused to do further testing. But by early 2015, the pain was so bad that I couldn’t sit or stand at my desk. I laid on the floor with my laptop in front of me, periodically resting my head on the filthy office carpeting. Concerned colleagues would ask me if I needed help, but there was nothing they could do. Eventually, I put up a sign on my cubicle that said “I have not fallen and I am not dead.” I was so accustomed to pushing through my pain that I didn’t consider sick leave until instructed to by my physiotherapist. When she validated my pain and told me that it was bad enough, I collapsed in her arms and cried.
MRIs later revealed a large disc rupture in my lumbar spine, which was compromising the spinal canal and beginning to cause progressive paralysis in my lower body. I saw a pain specialist, who tried several rounds of cortisone injections but warned me it was only a short-term solution. I had my first spinal surgery in August 2015. I recovered well, and I naively believed that it would be the end of my health troubles.
In 2016, I accepted a new job in trade publishing and moved into my first apartment with my partner. But only a year later, my disc ruptured again while I was on a business trip in Europe. I gulped down muscle relaxants with generous glasses of Prosecco until I got home.
Six months later, I received a second surgery. I lost most of 2017 to pain and brain-melting medications. Over this last year of disability, the nest egg in my savings account dwindled away, replaced by a hefty credit-card bill and shamefully crowdfunded rent donations. I don’t dream about buying my own house anymore.
Canadians often feel smug about our universal health care. We shake our heads at the American system and rehearse the legend of the great Tommy Douglas, “Father of Medicare.” But in this smugness, we forget how terribly recent it all is. Douglas introduced Medicare to Saskatchewan in 1962, preceding the federal government’s first Medical Care Act in 1966. It would take another six years for universal health care to reach all provinces. It wasn’t until 1984 that the federal government established national principles to ensure each province and territory met the requirements of free and universal access to publicly insured health care.
We give our government a break regarding its flaws, because we feel secure in our belief that we are taken care of if something bad happens. But there’s a sinkhole at the intersection of health care and social welfare: Even if you have full-time, stable work, employee health benefits, and a healthy savings account, a long-term illness or injury can take all of that away. And if you are not so privileged, you may fall through the cracks.
The first time my health failed, I was fortunate to access private benefits for short-term and longterm disability through my employer. These benefits came with a salary loss of about 30 to 40 percent, but it was still the best possible outcome for someone in my situation. My mother and I swapped roles again, and she became my primary caregiver. I had the privilege of living at home with a strong support system. But, absorbed by my pain, I hadn’t realized things could have been much harder.
This was a lesson I learned the second time I became ill, when my employee benefits did not include short-term disability. I turned to government assistance and discovered just how difficult and demoralizing it is. The Canadian government offers sickness benefits through employment insurance (EI) for those without a private insurance plan. But in order to qualify, you must be eligible for EI. Consequently, EI sickness benefits may exclude those whose health has precluded them from working and those whose work is unstable or insecure.
The benefits are a privilege that many vulnerable citizens cannot access. For those eligible for EI, sickness benefits pay out at a maximum of 55 percent of their regular salary—an unliveable amount for most people—and are only available for a maximum of 15 weeks. If you lose your job, EI employment benefits will pay out for up to 45 weeks, but if you get sick, you’d better hope to recover within a third of that time.
The Unemployment Insurance Act was introduced in 1971. Despite numerous revisions to other forms of benefits, the 15 weeks of coverage for sickness benefits has not changed since its legislation. Employment and Social Development Canada (ESDC) did not respond directly to questions about this discrepancy among different kinds of benefits, but stated that “an evaluation of the EI sickness benefit is underway and is expected to be completed in 2019.” They also emphasized that the EI sickness benefit is a short-term relief for claimants who intend to go back to work.
Herein lies the problem: What happens if you don’t recover in 15 weeks? I asked ESDC for suggestions regarding next steps in such a case, noting that the burden of this research seems to fall on the claimant—there’s no information on the EI website about sickness benefits running out and little human interaction throughout the process. ESDC responded that EI “complements a range of other supports that are available for longer-term illness and disability in Canada, including benefits offered through employer-sponsored group insurance plans, private coverage plans held by individuals, and long-term disability benefits available under the Canada Pension Plan Disability (CPPD) and provincial and territorial programs.”
Apart from CPPD, income-support programs for longterm disability are largely a provincial domain. Individuals whose illness is expected to be long-term are to use these programs, highlighting yet another problem: What if you’re not sick enough? “Long-term” is often defined as a minimum of one year, in even the most generous provinces. The Ontario Disability Support Program (ODSP) requires that your illness be expected to last at least one year; B.C.’s Disability Assistance plan requires that you expect it to last at least two; and Alberta’s Assured Income for the Severely Handicapped program requires that your impairment is expected to be permanent. If you’re sick for longer than 15 weeks but less than one year, like me, you are caught in limbo. I have never been disabled for a consecutive year, but cumulatively I have been disabled for almost two of the past four years. My 15 weeks of EI sickness benefits ran out quickly, but I wouldn’t have met ODSP’s requirements for long-term disability because my doctors couldn’t anticipate the duration of my condition.
My EI sickness benefits ran out one month before my surgery was scheduled in 2017. Fortunately, my employee benefits included long-term disability. It took almost three months to get the paperwork together and for the government to review my application, which was later denied on the basis that my illness was a pre-existing condition. I was told that I did not have the right to appeal this decision, but I did anyway—and I won. During those three months of arbitration, I had zero income and mounting medical bills. I maxed out my drug plan and physio benefits, emptied my savings account, and begged for rent donations from my loved ones. In a culture that values people for their productivity, I felt like a failure.
According to Ontario’s Ministry of Community and Social Services (MCSS), the governing body of ODSP, individuals who do not qualify for ODSP or who are in the process of applying for it, may be eligible for other social assistance programs, such as Ontario Works. The program covers basic needs—food, clothing, shelter—and may also include drug and medical transportation costs. Likewise, the Government of British Columbia says individuals who are not eligible for their Disability Assistance plan may still be eligible for B.C. Income Assistance. While it’s heartening to know that our government’s social welfare programs provide assistance for those in financial need, there is still a communication failure between our health care and social welfare systems. Ultimately, the burden of research into alternative programs is placed on the individual already dealing with debilitating illness.
Toronto’s Alexandra, 26, currently receives ODSP support. At age 18, she was diagnosed with major depressive disorder and social anxiety. She currently receives about $1,150 per month from the provincial program— about 55 to 67 percent of her earnings from when she was able to work. Out of financial desperation, she is trying to earn some additional income from dog-walking, but fears the consequences of reporting this income to ODSP. “All of this extra stress makes my depression worse, which is a vicious cycle because then I can’t work as much as I need to,” she says.
Like Alexandra, many who qualify for disability income assistance find that the funding falls short. The average monthly CPPD benefit is $933.82, based on a monthly fixed amount of $471.43, plus additional funding based on previous CPP fund contributions. ODSP’s monthly allowance is comprised of a “basic needs” amount—$649 for a single adult— and a shelter allowance—a maximum of $479 per month to a single person. In total, we can assume that a single adult with no dependents will receive an average maximum of $1,128 per month from the program. The average cost of a one-bedroom rental apartment in Toronto has hit $2,020 per month, making such an income barely enough to cover housing costs, let alone food, transportation, medications, and therapies. And while it might be tempting to think that people should move to less expensive areas, most urban centres offer far more medical and disability services than smaller communities or rural areas.
As affordable and supportive housing disappears, those sick and with disabilities are left on a slippery slope toward homelessness. To supplement disability benefits, many will have to work to earn more income—a logical fallacy when you consider the lengths they have already gone to prove they cannot work. Setting aside the physical and intellectual challenges of working while dealing with illness or disability, ODSP creates another challenge: You can only earn $200 to spend as you need. After $200, ODSP will reduce your income support by 50 cents for every dollar you earn. So if, for example, you earn a monthly income of $300, your ODSP support will be reduced by $50, and so on. ODSP’s definition of “income” isn’t limited to earnings from work but as any money that you receive. This means ODSP support can be affected by the receipt of other government benefits, child or spousal support. ODSP does offer a $100 per month work-related benefit to help offset the costs of transportation and clothing for work, but any income is still subject to the 50-cent rule. The benefit purports to incentivize recipients to find work and remain employed, but in practice the income rules create more of an obstacle.
Income support is not the only financial burden people with disabilities experience. Disability and poverty often go hand-in-hand, making health care a lower priority than basic needs like shelter. This is especially true in a system that does not cover the costs of prescription medications. In fact, Canada has the only universal public health care system that does not include universal prescription drug coverage outside of hospital settings.
Erella Ganon is a Toronto artist with disabilities who currently receives ODSP income support.“I wear two sets of handcuffs,” reads one of her illustrations. “Living with a disability is one. Trying to exist and…hav[ing] a fulfilling life while negotiating the rules for living on a disability pension is another.” One of these rules relates to her medications. While ODSP offers prescription-drug coverage, it only includes medications that appear on the Ontario Drug Benefit Formulary. Ganon requires Solu-Cortef, a brand-name injectable cortisone drug used to treat Addison’s disease, a life-threatening illness, but ODSP won’t pay for it. In March 2017, Ganon says she was taken to an emergency room in Toronto, and the hospital did not have the live-saving medication in stock. Instead, her daughter taxied home to retrieve Ganon’s own stock of the Solu-Cortef, for which she paid out of pocket. Two specialists and her general practitioner have all submitted paperwork to ODSP requesting coverage for Solu-Cortef—and each time she was denied.
Vanessa, 41, reports similar challenges with the costs of her medications. She received health care coverage from her last employer until it was abruptly cut off in 2010. Vanessa is on a minimum of five antipsychotics, antidepressants, anti-anxiety, and sleeping pills at a time, and she couldn’t qualify for most individual plans because mental illness is considered a preexisting condition. “I finally found a [private] plan that gave me some coverage, and have been paying $200 for health care out of pocket, out of my monthly $1,000 from CPPD,” she says. This leaves Vanessa with $800 per month for living expenses.
Options for prescription-drug coverage vary from province to province. Quebec has a public program that provides insurance for individuals who are ineligible for private drug insurance and for those enrolled in Emploi-Québec’s Social Solidarity Program (the Quebec equivalent of ODSP). But there are obstacles to enrolling in this program: The forms must be filled out by a family doctor, of which Quebec has a major shortage. It is possible to have the paperwork submitted by a GP in a walk-in clinic, but many will not agree to do so—or if they do, they may charge fees of up to $80 per page.
In early 2018, I recovered from my second surgery and I gradually returned to full-time work. I can now walk without assistive devices, I have weaned off opioids, and I appear able-bodied. I know that I am lucky to have a job to return to, but I’m acutely aware of the lost time. In some ways I feel like a time traveller stuck in the past; my version of 2017 ended in April, and I’m struggling to find my place in this new year.
Fiscal conservatives may argue that we should be grateful for the health care systems we have in place, that we should pick ourselves up by our bootstraps and stop relying on social welfare at taxpayers’ expense. But if our system is one that only patches people up at the expense of their financial ruin, how dare we act smug while we deny basic standards of living and care to those who are most vulnerable? When our health care and welfare systems fail to work together, it is those with disabilities who are most seriously disadvantaged. And in this inescapable cycle of disability and poverty, we are robbed of the contributions of citizens who are just as worthy, valuable, and loved as the able-bodied.
CORRECTION (04/24/2018): A previous version of this story misstated Erella Ganon’s medical condition, as well as the circumstances around her March 2017 hospital visit. The piece has now been updated. This regrets the errors.