Why Canada's broken disability support system is needlessly costing millions, harming mental health

This column is an opinionby Dr. Pamela Valentine,president and CEO of the Multiple Sclerosis Society of Canada.For more information about CBC's Opinion section, please see theFAQ.

Imagine having a condition that prevents you from working and doing the things you love. Sometimes.

Now imagine a disability system that's like a light switch: Either you'redisabled(on) and you qualify for support, or you'refully abled(off), and you don't. There's nothing in between.

If you don't fall into either of those categories, you fall through the cracks in our health and social support systems. That's the reality for hundreds of thousands of Canadians right now.

As welook at ways to better serve Canadians in need of support, an obvious problem is emerging that too few people are talking about this "on or off" system that is not meeting citizens needs, and which creates inefficiencies that cost millions of dollars.

The end result: A broken disability system where Canadians are deprived of their livelihoods, and often suffer detrimental effects to their mental health.

During the federal election campaign, Canadians discussed various aspects of our health and social safety systems. Policy improvements were addressed by political parties, and Canadians engaged with real policy needs. These conversations are crucial, but now we need government action.

Episodic disabilities

The heart of the problem is that our disability, income, and employment programs don't recognize "episodic disabilities."

These are defined in a recent House of Commons report as "medical conditions or diseases that are prolonged and often lifelong, but have unpredictable episodes of illness and disability. These episodes of disability can vary in severity and duration, and are often followed by periods of wellness."

The report says 1.6 million Canadians self-report as having an episodic disability.

This is true for Canadians living with multiple sclerosis (MS), numerous cancers, diabetes, acute arthritis, inflammatory bowel disease, mental health conditions, HIV, epilepsy, migraine, Hepatitis C, chronic fatigue, chronic pain, cystic fibrosis, rare diseases, and a range of other conditions.

These episodic disabilities arecreating issues beyond the health care system.

Employment Insurance (EI), for example part of Canada's disability support system ends up being a tragic Catch-22. If you have a condition thatsometimesprevents you from being able to work (because of periodic flare-ups or temporary debilitation) yet you're fully able to work 70 or 80 per cent of the time you have to stay off your jobentirelyin order to get the disability or income support for the times you need it.

For some, it may be a day or two per week when their acute migraine gets in the way of their ability to work. For others, it could be three months in a year when their MS symptoms become more pronounced, or they require a period of hospitalization before returning to wellness.

The result?

Approximately 350,000 Canadians are presently not employed but want to work, according to the parliamentary report they must choose whether to befullyinthe workforce, orentirely drop out of it.

The false black-or-white choice and the ramifications it has for support means almost all drop out.

Enormous costs

The economic impact is staggering.

A 2018 study by the Conference Board of Canada found the productivity loss of unnecessarily pulling Canadians with MS out of the workforce, for example, is in the order of $1.1 billion per year.

On an individualized level, this means loss of income and often a mental health or self-esteem impact.

For employers, it means an avoidable loss of skills and experience, and unnecessary rehiring and retraining.

This also amounts to a much more expensive EI system that is paying out benefits to people who can work and want to but aren't allowed to unless they want to risknot being able to get benefits when they need them.

And there's a gender dimension: 55 per cent of working-age Canadians living with disability are women. With MS, for example, women are three times more likely to be diagnosed than men. So the flaws in our system are hurting women disproportionately.

First and foremost, EI needs to recognize not all disabilities and illnesses are the same.

Flexible access, allowing people tomaintainpartial employment and partial coverage, would allow Canadians to stay in the workforce when they canand access support when they need it.

Other supports outside of EI the Disability Tax Credit, Canada Pension Plan Disability Benefits and the Registered Disability Savings Plan need to make similar changes to become more flexible.

In the aftermath of the election, as the federal government defines its program, let'sfocus on where we can make a real difference in people's lives: improving their financial and mental well-being, whilealsoreducing costs to the system.

In classic Canadian fashion, we can forge an even better social and disability support system by pausing, reflecting, and innovating and staying true to our compassionate roots.

• This column is part of CBC's Opinion section. For more information about this section, please read ourFAQ.