Re-examining the role of episodic disabilities in the workplace

What are Episodic Disabilities?

“An episodic disability is defined as a physical or mental illness that is unpredictably recurrent and impacts on personal ability to actively engage in the social and employment environments.” Examples of episodic disabilities include multiple sclerosis, HIV, lupus, hepatitis C and some forms of arthritis, cancer and mental illnesses.

This is in contrast to our traditional understanding of disability - a permanent impairment such as loss of vision, hearing or mobility. As a result of this traditional understanding, the predominant disability income security model that has emerged in Canada is based on:

A severe and prolonged disability; A definition of disability that does not include the capacity to work; Benefit reductions and disqualifications if there is participation in work Yet Canadians with episodic disabilities have varying capacities to work over time.

Why should we consider policy changes that result in increased inclusiveness and access to employment for people living with episodic disabilities?

The value of employment cannot be overestimated. As employment and income security are key determinants of health , research is needed to determine whether more flexible policies can help people living with episodic disabilities to:

• increase their ability to live a satisfying, productive and meaningful life
• stay healthier for longer and improve their overall quality of life
• lessen isolation thereby improve mental health
• promote social integration
• reduce health care costs
• contribute to the economy
• stay active, both at home and at work access medications and rehabilitation

Until recently, programs and policies that excluded Canadians with disabilities from participating in the labour force were not a public concern. Although there are no statistics on the number of people with episodic conditions, Social Development Canada (SDC) stated in its November 2003 report that “recurrent and episodic disabilities are becoming more prevalent in Canadian society.” At the same time, Canadians now believe that persons with disabilities should be included in work. The modern workplace has changed from labour-intensive to technically supported and is increasingly non-physical, favouring the inclusion of persons with disabilities. Supported by medical and treatment (including rehabilitation) advances and assistive devices, greater labour force participation for people with episodic disabilities is feasible. Key diseases with disabilities where there are significant breakthroughs include arthritis, multiple sclerosis, and HIV/AIDS.

In spite of these reasons, according to a January 2006 bulletin prepared by the Council of Canadians with Disabilities:

56.5% of persons with disabilities are currently unemployed or out of the labour market Persons with disabilities face levels of poverty almost twice that of persons without disabilities. The problem is that current income security programs, like the Canada Pension Plan Disability program, do not recognize the nature of episodic disabilities. This often results in the unintended consequence that people with episodic disabilities lose their income and health benefits when they attempt to rejoin the labour force. In need of these income and health benefits, many Canadians with episodic disabilities are not engaged in the labour force. The risk/cost of taking paid employment is often simply too high.

Yet no one is ahead.

The insurance carrier (whether public or private) is paying full disability benefits when the recipient is capable of and eager to work during periods of wellness.
The employer is without the skills and experience of the employee. The person with an episodic disability remains on disability benefits when they are able to work thus interrupting, if not ending, their contributions to the paid economy. Creative solutions are needed in order to retain existing skilled workers with episodic disabilities who otherwise prematurely exit the labour market in order to access the disability supports they require. Labour shortages are looming in Canada. Baby boomers will start turning 65 in 2011.Employers, disability plan providers, people living with episodic disabilities and the Canadian economy, all stand to gain when a comprehensive strategy to reform current or develop more accommodating policies is implemented.

What are the Challenges?

A coordinated approach is essential to generate a vision for labour force participation when people with disabilities are able to work

All stakeholders (governments, insurers, employment and disability-related specialists, such as Human Resources and rehabilitation professionals, and employers) must come together to ensure that persons with episodic disabilities are able to continue their employment when they are able to work without jeopardizing or losing their livelihood when unable to work.

Governments, public and private insurers must structure disability benefits in a way that prevents paying long term disability benefits to persons who are temporarily able and willing to work but whose disability can and will return.

What is being done in Other Countries

International and Canadian studies have concluded that in order to achieve significant benefits for the integration of people with disabilities, national governments must establish strong and coherent policies in the area of employment .

Comprehensive models in other jurisdictions include:

• active involvement by business and labour in federal policy and program planning;
• active employer contact with workers with disabilities;
• early assessment with a rehabilitation focus;
• programs which encourage and support labour force participation;
• provision of financial assistance (including partial benefits);
• government-funded incentives to employers to enable them to engage in early identification, planning for rehabilitation and immediate protection of financial security.

Who is doing what in Canada?

The Canadian Working Group on HIV and Rehabilitation (CWGHR) is a national, multi-sector, multi-disciplinary, charitable organization of stakeholders involved in rehabilitation in the context of HIV. Research undertaken by CWGHR has shown there are many disabilities that are similar to HIV in that they are lifelong and episodic in nature . Since 2001, CWGHR has undertaken research which has shown that the episodic nature of HIV and other disabilities wreaks havoc with the work lives and income for people living with episodic disabilities. In addition, CWGHR’s research has determined that many people with episodic disabilities are able, willing and eager to work; however, systemic and practical disincentives, specifically, lack of partial disability income support if one works part-time, leave few alternatives for recipients except to remain disengaged from paid employment in order to maintain critical disability income and health care supports. In order to establish an ongoing platform for the exchange of ideas and collaboration on issues specific to episodic disabilities with national disability organizations, CWGHR has developed, and continues to coordinate and support the Episodic Disabilities Network (EDN) since 2003. The EDN has identified income support and labour force participation as key priorities. CWGHR continues to be a national leader in the field of episodic disabilities and continues to support initiatives to promote improved quality of life and social inclusion of people living with episodic disabilities.

Is there a solution?

Within its episodic disabilities initiatives, CWGHR has reviewed disability income and employment issues internationally, and conducted a cost-benefit analysis of a hypothetical model with increased flexibility – partial income support for those recipients of full benefits who were able to return to work part time. Preliminary results suggest potential financial benefits for the insurer; however, the overall impact of an innovative labour force and income support model on the health and social inclusion of Canadians with episodic disabilities is unknown. We need to do more work on this.

What do professionals know about episodic disabilities?

To determine the answer to that question, CWGHR developed and implemented a survey of Human Resources professionals across Canada. Results of that research indicated that Human Resources professionals were not able to identify what percentage of their disability caseload was episodic, and that they required further information about episodic disabilities as well as strategies to support the inclusion of employees with episodic disabilities in the workplace. A full discussion of that research and the recommendations will follow in a future article. As a response to the identified need for more information on episodic disabilities, CWGHR has developed an on-line course on episodic disabilities for Human Resources professionals. As there are multiple stakeholders that need information about episodic disabilities in order to collaborate on meaningful solutions, resources are being developed for other stakeholders. For more information on the episodic disability initiatives and resources at CWGHR, contact info@hivandrehab.ca or check our web site at www.hivandrehab.ca .

Eileen McKee is Manager of Episodic Disabilities Initiatives at CWGHR. She worked for twenty years as an administrator of a health care agency, and as a clinician and instructor in counseling before joining CWGHR in its research and policy work.

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1 McKee, E. and Popiel, M. Programs & Policies to Facilitate Labour Force Participation for People with Episodic Disabilities: Recommendations for a Canadian Context based on an International Analysis. March 2006. p. 3.

2 Wellesley Central Hospital and Health Canada. Rehabilitation Services: A Comprehensive Guide for the Care of Persons with HIV Disease: Module 7, p79. 1998.

3 In December 2003, Human Resources Development Canada divided into two departments: Human Resources and Skills Development Canada and Social Development Canada. In 2006, the two departments were combined to form Human Resources and Social Development Canada. 4 Government of Canada. Government Response to ‘Listening to Canadians: A First View of the Future of the Canada Pension Plan Disability Program: The Fifth Report of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities’. November 2003. p22.

5 http://www.ccdonline.ca/publications/media-releases/disability%20strategy%200106.html

6 CWGHR commissioned the Social Program Evaluation Group at Queen’s University to analyze Canadian and international income support, disability and work place policies and programs related to episodic disabilities. The full report can be accessed at http://www.hivandrehab.ca . In addition, an annotated bibliography (alphabetical and categorized) is available on request. Bullets above reflect the features of responsive policies and programs.

7 Proctor, P. Looking Beyond the Silo: Disability Issues in HIV and Other Lifelong Episodic Conditions. Canadian Working Group on HIV and Rehabilitation. May 2002.

8 The Episodic Disabilities Network includes participation of the Canadian Mental Health Association, Lupus Canada, Multiple Sclerosis Society of Canada, and other national disability organizations including people living with episodic disabilities. It provides a forum to exchange information amongst participants to enhance their ability to respond in a coordinated way to inform policies and programs to improve quality of life and promote inclusion for people with episodic disabilities.