When I received a diagnosis that changed my life, a hefty price tag was the last thing on my mind. It was May, 2020, and I was grateful to have a name for the severe abdominal pain and fatigue I’d spent the last year and a half battling.
Crohn’s Disease, which manifests primarily through inflammation in a person’s digestive tract, has no cure, but can be managed with medication. So when I headed to the pharmacy to pick up the pills that my doctor had prescribed me, I was hopeful at the prospect of some relief.
Then, I saw the price: $107.01. I was a new university graduate, 22 years old, and unemployed. The pharmacist told me that when I picked up the refill in three months, after my insurance lapsed, it would be $500.
I hadn’t yet started my financial-aid-finding mission, to better understand what government supports exist to help me afford this essential treatment. While federal and provincial benefit programs do help, they’re often not enough for those with chronic illnesses and disabilities to maintain financial security or escape the fear for their financial futures.
Twenty one per cent of disabled Canadians live in poverty. For those who are employed, the Disability Policy Alliance says disabled Canadians spend a quarter to half of their income on disability-related expenses – adding up to as much as $300,000 to $3-million over a single person’s lifetime.
“It can be a bit overwhelming,” said Alison Izat, a financial adviser with Plan Institute’s Disability Planning Helpline, a non-profit and social enterprise that connects disabled people with financial advisors.
My doctor suggested I try a more aggressive, one-time treatment. The price tag was $1,200. When I told him I couldn’t afford it, he recommended that I apply to B.C.’s Fair PharmaCare program, which, depending on your income, may cover the cost of approved medications and medical devices.
What would this look like? Depending on your income, once you’ve spent up to the “family deductible,” PharmaCare then covers 70 per cent of eligible costs until you spend your set “family maximum.” So, someone on the regular assistance program who makes $30,000, for example, will have 70 per cent of their eligible medical costs covered until they reach $800 spending out-of-pocket – at which point the rest is covered for the year. Those who earn $70,000 annually pay up to a $2,250 deductible, then the program covers 70 per cent of expenses until they hit $3,000 in spending.
Without that program, I would not have later started the medication that helped me manage my Crohn’s. Today, the total cost of my medications is $12,000 a year; of that, I pay less than $700.
But as I progress in my career, I will likely not qualify forever – and the amount I have to put aside for medical expenses will rise with my income. If I lost coverage, I would have no choice but to pay out of pocket. Missing a dose of my medication means my body could build antibodies that would prevent the drug from being effective ever again.
People who live with disabilities and chronic illness also need to think about accessible housing, food that meets strict dietary restrictions, adaptive tools and equipment, and other expenses that aren’t covered under government assistance plans. In a 2017 survey, 1.5 million Canadians aged 15 years and older with a disability said they weren’t able to get a medical aid or device they needed – and one million reported the reason was cost.
Charles Sandor has experienced this financial toll firsthand. Based in B.C.’s lower mainland, he pays large out-of-pocket costs even with support from grants: $5,000 to replace his wheelchair, $5,000 to remove his apartment’s carpet so his wheelchair could move on the floor.
“I can survive on what I’ve got,” said Mr. Sandor, who also needs to upgrade his van to one that meets his accessibility needs. “When an unexpected expense like this comes up where it might cost me $50,000, that’s where it really hits hard.”
But before you can access even limited benefits programs, after a diagnosis, you have to register with your provincial government as a person with a disability. This is a tedious application process that is not always successful and needs approval from a primary care doctor. That’s a problem given that a recent Angus Reid report showed that about half of Canadians don’t have access to a family care physician or can’t get a timely appointment with one.
If you are approved, the coverage isn’t guaranteed forever. If your income and assets increase, there’s a chance you’ll no longer qualify.
With their official status in hand, disabled people can then apply for the disability tax credit, a non-refundable tax credit that reduces the amount of income tax owing. If your credit is larger than your tax owing, you don’t receive any money back.
They can also open a Registered Disability Saving Plan (RDSP), which will help to build long-term savings in an account that won’t trigger a clawback to their benefits.
These types of penalties discourage some disabled people from getting married, as their combined assets would prevent them from accessing disability benefits.
“It seems like security, but it’s actually a really low income and is quite restrictive for people,” said Ms. Izat.
Once an RDSP is set up, anyone can contribute to the plan on behalf of the beneficiary, with no annual limit. The lifetime maximum is $200,000 in contributions per beneficiary. Contributions can be made to an RDSP until the beneficiary is 60 years old.
Ms. Izat says that emergency savings are really important to financial stability, to ensure there is a cushion of cash for any unexpected expenses, but not everyone can prioritize this. “I think it’s often a gap,” she said.
The government will also contribute to these savings in the form of matching bonds and grants. Izat thinks the RDSP is a respectable savings program, particularly as the Canada Disability Savings Grant matches contributions up to 300 per cent.
If someone earns $25,000 annually and sets aside $500 for their RDSP per year, intending to maximize a grant of 300 per cent, their contribution would be matched by the government through a $2,500 in grants and bonds – bringing their total annual RDSP deposit to $3,000 that year. If they received RDSP contributions from a relative as well at $1,000 each year, it would garner a 200-per-cent matching grant from the government of $2,000. So, contributions of $1,500 immediately grow to $6,000 – not including investment income or interest.
It’s only thanks to a small inheritance that 67-year-old Douglas Laird attained the financial stability to attend university after struggling for years with homelessness and unemployment due to his disabilities. It has been hard for him to access programs like the RDSP when he hasn’t had enough money from his benefits for food or rent, and needed to dip into his student loans to survive.
Mr. Laird has had to fight to maintain his status as a person with a disability, which was temporarily withdrawn because the province required proof he was still disabled. He currently receives just Canada Pension Plan disability benefits and Old Age Security payments which, combined, are $2,236 each month.
There are efforts to make support programs more accessible. Because of his experiences navigating the complicated system of disability grants and benefits, Mr. Sandor created a website to help people understand the RDSP.
Canada has an online benefits finder, and advocates hope a proposed Canada Disability Benefit currently being considered by Ottawa will help lift disabled people out of poverty.
Mr. Sandor has fought hard for financial stability, even going to court to maintain his federal disability benefits and risking bankruptcy after his status was similarly withdrawn.
He wishes the system was designed to support individuals from the start – so that when they received a diagnosis, a caseworker would be assigned to offer guidance about the programs.
Instead, it’s up to disabled people and those with chronic illnesses to find a way on their own to make ends meet.