Increasing numbers of Canadians are living with episodic disabilities, including multiple sclerosis, arthritis, cancer, HIV/AIDS, diabetes and some forms of mental illness. A person can simultaneously live with both permanent and episodic disabilities; however, there are clear distinctions. An episodic disability is marked by fluctuating periods and degrees of wellness and disability. In addition, these periods of wellness and disability are unpredictable. As a consequence, a person may move in and out of the labour force in an unpredictable manner.
What are some of the challenges of living with episodic disabilities?
Definitions: Definitions used in legislation, by medical and rehabilitation providers and by insurance providers and government benefit programs tend to focus on permanent disabilities, can differ and can create barriers to accessing and coordinating programs and benefits for people with episodic disabilities who need access to various income support programs.
Care, Treatment and Support: The health care system and service providers are often not well equipped to handle the needs of people living with lifelong episodic disabilities. The unpredictability of the illness can be challenging to the care provider and a person’s self-esteem. Goals are difficult to set. Depression is common. Care and treatment can be compromised when it is dependent upon income-support and benefits programs that are not flexible.
Workplace Accommodation / Employment Issues: Part-time work and flextime are critical components. Employer associations, insurance industry representatives, governments, unions and disabilities communities need to coordinate, collaborate and contribute to plans that accommodate the needs of those living with episodic disabilities.
Income Support and Security: The threat that disabilities benefits may be “cut off” during periods of improved health, then be difficult to reinstate later during periods when health status declines may create fear of loss of benefits and non-reinstatement, and be a disincentive to return to work. In addition, complicated claim procedures may need to be repeated every time someone needs to be absent from the workforce for a period of time that is more than allowed. For these reasons, flexibility is very important in an income support program that is going to address episodic disabilities.
Legislation and Policy: Legislation needs to be barrier-free for people with episodic disabilities. Trial periods, automatic reinstatement of benefits, part-time work and job sharing, and benefit coverage while earning an income are all features of a flexible and comprehensive set of policies.
Education: Greater awareness is needed for people living with an episodic illness, for their caregivers, for care providers, for employers, for insurance companies and funders and for policy makers.
Need more information? For information on episodic disabilities, please contact: firstname.lastname@example.org.
“My patient is feeling better right now, and would like to return to work… If he does return, however, he will be cut off from his long-term disability benefits. [Consequently] he has decided not to return to work because the fear is too great… I think return to work would help his self-esteem – he has suffered from depression – if going back to work doesn’t work out, there’s a real sense of failure.”
Dr David W. Grossman College of Family Physicians of Canada From ‘Looking Beyond the Silo’, May 2002