What is Episodic Disability?

Introduction
What are Episodic Disabilities?
The Dynamics of Disability
The Episodic Disabilities List
Current Issues
How Many People Suffer from Episodic Disabilities?
What Challenges are Associated with Living with Episodic Disabilities?
References 
Further Reading

According to the World Health Organization, "15% of the world’s population (an estimated 1.1 billion people) identify as having some form of disability." A person can have both permanent and episodic disability simultaneously; nonetheless, there are clear distinctions between the two. An episodic disability is characterized by periods and degrees of wellness and disability that fluctuate over time.

A growing percentage of people are affected by episodic disability. According to a Statistics Canada survey report, "of the 6.2 million Canadians with disabilities aged 15 years and over, just 39 percent (2.4 million) experienced conventional, continuous limitations, while 61 percent (3.8 million) experienced some type of disability dynamic.”

Many people suffer from episodic disabilities, and the unexpected nature of their illnesses makes it difficult for them to achieve long-term goals, find work, maintain a stable income, or get social assistance. Moreover, these phases of health and disability are unpredictable. Consequently, a person may enter and exit the labor force with unpredictability.

What are episodic disabilities?

Lifelong disorders or diseases can cause short-term disabilities called episodic disabilities. Even with the best available medical care, some people will face periods of disability.

The duration and severity of a person's disability might vary. Episodes might be predicted in advance or they may strike without warning. Certain types of cancer can be episodically debilitating, as can mental illness and arthritis.

Work participation and income security are negatively affected by these conditions all too frequently. Public and private policy changes may be all that is needed to avert this effect in many cases.

The dynamics of disability

The Dynamics of Disability: Progressive, Recurrent, or Fluctuating Limitations presents four primary ways of how disabilities may fluctuate depending on the individual or condition; Progressive (having limitations that get worse over time), Recurrent (conditions lasting at least a month without limitation), Fluctuating (periods of shorter duration during which a person's limitations may fluctuate), and Continuous (A condition that is often stable over an extended period of time)

The episodic disabilities list

In 2015, the Episodic Disabilities Employment Network (EDN) updated its list of episodic conditions, which is continuously expanding with time. The diseases and conditions that are the potential causes of episodic disabilities include; arthritis, asthma, some forms of cancer, chronic obstructive pulmonary disease, chronic bronchitis, emphysema, chronic fatigue syndrome, chronic pain, chronic inflammatory demyelinating polyneuropathy (CIDP), Crohn’s & colitis, diabetes, epilepsy, fibromyalgia, hepatitis C, human immunodeficiency virus/ Acquired immunodeficiency syndrome (HIV/AIDS), lupus, depression, anxiety, bipolar disorder, schizophrenia, Meniere’s disease, multiple sclerosis, migraines, Parkinson’s disease, and systemic exertion intolerance disease (SEID).

Current issues

Many diseases and ailments are no longer fatal due to advances in medical technology, and disabling symptoms can often be controlled, managed, or delayed. As a result, an increasing number of people live with episodic disabilities that are permanent. While the prevalence of episodic disability is unknown, millions of people are afflicted with diseases and conditions associated with it.

The majority of affected individuals are seasoned workers in their peak working years. The exclusion of people with disabilities from the workforce results in economic loss for the individuals, their families, and the whole nation.

In future decades, fewer young people will enter the labor force, and the expansion of the traditional working-age population is predicted to slow or even reverse. This employment pattern needs policies that promote full inclusion.

How many people suffer from episodic disabilities?

A growing percentage of people are afflicted with episodic disabilities that persist throughout their lives. Currently, it is estimated that seventy-one thousand people in Canada are thought to be living with HIV; nearly 2.8 million people have diabetes; more than 4 million people have arthritis; one in five, or 20% of Canadians, will suffer from a mental illness at some point in their lives; and there are approximately 100,000 Canadians who suffer from multiple sclerosis (MS).

What challenges are associated with living with episodic disabilities?

Reports and definitions

The term "permanent disability" is frequently used in legal definitions, medical and rehabilitation terminology, insurance coverage, and government compensation programs.

People with episodic disabilities who need to use a variety of financial support programs face challenges since the definitions of these programs and benefits vary from one source to the next.

Issues with employment and workplace accommodations

Flexibility in work hours and part-time employment is essential. Plans that meet the requirements of people with episodic disabilities require coordination, collaboration, and contributions from employer groups, insurance sector representatives, governments, unions, and disability communities.

Policies and legislation

For people with episodic disabilities, legislation must be free from barriers. An all-inclusive and flexible set of policies includes features like trial periods and automatic benefit reinstatement, as well as the ability to work part-time or share a job and still receive benefits.

Awareness

There is a need for increased knowledge and awareness among people who suffer from episodic illnesses and their caregivers, as well as among care providers, employers, insurance companies, funders, and legislators.

Treatment, care, and support

There is a lack of support for people with long-term episodic disabilities in the healthcare and service systems. Caregiver and patient self-esteem might be affected by the unpredictable nature of this disease, which can be difficult for both parties.

Setting goals is a challenging task. Depression is widespread. Care and treatment might be affected when they depend on limited income support and welfare schemes.

Financial aid and income security 

The fear that disability benefits may be "delayed" during periods of improving health and subsequently be difficult to restore during periods of deteriorating health may induce fear of loss of benefits and non-reinstatement, thus discouraging workers from going back to work.

In addition, time-consuming claim processes could have to be repeated each time someone needs to take an unapproved extended leave of absence from work. These factors make flexibility a key component of any income assistance program designed to help people with episodic disabilities.

References

• O'Brien, K.K., et al., Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. Journal of the International AIDS Society, 2009. 12(1): p. 30. Available at: https://jiasociety.biomedcentral.com/articles/10.1186/1758-2652-12-30
• Statistics Canada. The Dynamics of Disability: Progressive, Recurrent or Fluctuating Limitations, Canadian Survey on Disability Reports. Available at: https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2019002-eng.htm (Accessed on 1 August 2022).
• Episodic Disabilities Network. (2014). About The Episodic Disabilities Network. Available at: http://www.episodicdisabilities.ca/home.php (Accessed on 30 July 2022).
• Furrie, A. D. (2010). Towards A Better Understanding Of The Dynamics Of Disability And Its Impact On Employment. Ottawa, Ontario: Adele Furrie Consulting Inc. Available at: https://www.adelefurrie.ca/PDF/Dynamics_of_disability.pdf
• Realize Canada (2021). Episodic Disabilities, Available at: https://www.realizecanada.org/our-work/episodic-disabilities/ (Accessed 27 July 2022).

Further Reading

• All Disability Content

Written by

Maira Ahsan

During the coronavirus disease 2019 (Covid-19) lockdown, while pursuing a bachelor's degree in human nutrition and dietetics, Maira started her freelancing career as a content writer, focusing on the life sciences. In 2020, she started working as a freelancer on Fiverr, where she quickly found opportunities to work with several Canadian companies.Maira received an offer for a nutritionist position from a French hotel in Canada, where she was responsible for developing nutrition-based recipes and calorie-counted meals.