About the Episodic Disabilities Network
The Episodic Disabilities Network was created by the Canadian Working Group on HIV and Rehabilitation to advance federal policy, programs, legislation and regulations as required to allow Canadians living with an episodic disability to engage fully in the workplace and to remove barriers to income support programs created by the episodic nature of the disability. The EDN has a membership of no more than eight organizations and works actively to achieve change.
What are Episodic Disabilities?
Episodic disabling conditions or diseases are lifelong, but unlike permanent or progressive disabling conditions, they result in episodes of disability. Even with the best possible medical management people may experience episodes of disability. The periods of disability can vary in severity and duration. There may be advance warning or the episode may come on unexpectedly. Examples of conditions that are episodically disabling are mental illness, arthritis, HIV/AIDS, multiple sclerosis, crohns and colitis, and some forms of cancer and rare diseases. All too often, these conditions have a negative impact on workforce participation and income security. We believe that in many instances this impact is avoidable through adjustments to existing programs – both public policy and employer policies.
The Issues – A snapshot
Advances in medical technologies mean that many diseases and conditions are no longer fatal, and disabling symptoms can often be reduced, managed or delayed. As a result more and more Canadians are living with lifelong episodic disabilities. While the specific prevalence of episodic disability is not known, millions of Canadians live with diseases/ conditions linked to episodic disability. The majority of the people affected are in their prime working years who tend to be experienced workers. The price of excluding people with disabilities from the world of work is economic loss – for the individual, for the family and for Canada. In the coming decades, fewer young people will be entering the workforce and growth in the population traditionally considered to be of working age is projected to slow or even reverse. This employment trend necessitates programs which bolster full inclusion for all Canadians.
A Case study
Jill is not a real woman, but her story captures the reality of 1,000s of Canadians. The Arthritis Society regularly hears these stories and used the details to create ‘Jill’. Jill is a 50 year old woman who has been working for over 25 years. Seven years ago, she was diagnosed with rheumatoid arthritis. As a result of prompt diagnosis and good management, Jill was symptom free until last year. Over the past year, Jill has begun to experience flare ups of her arthritis that are unpredictable and last from a few days to, (more recently), a month. Sometimes Jill can work for a few months or more without an episode. Although Jill only gets 10 sick days a year from her employer, one arthritis episode can use up all of her allotted sick days. Jill’s doctor cannot promise that her arthritis could be more consistently managed. Last month, Jill decided that she had no choice but to quit her job and go on disability income support. Her employer had offered her a casual part-time position, but Jill is a single woman and would not be able to live on that level of income, especially as her medications are costly. Now Jill is out of the workforce on disability income support and not paying employment related taxes. She does not have as much money to contribute to the Canadian economy. However, if Jill were able to use Employment Insurance Sickness Benefits in a more flexible way and over a longer period of time, instead of the current 15 consecutive weeks or 75 full-days, she would be able to stay engaged in the workforce, have access to her employer’s benefits plan and continue to pay income tax and Employment Insurance premiums.
At present, the “all-or-nothing” nature of most disability income supports leaves many people with episodic disabilities with no realistic alternative other than to resign themselves to being classified as 'disabled'; and leave the workforce. This example above demonstrates how a modest change to Employment Insurance Sickness Benefits would keep many people employed, and result in a more efficient and effective program leading to a better use of resources. This is not about more; it is about different.