Serving People with Episodic Disabilities

MS Society’s Recommendations for Change Thousands of Canadians are stuck in an in-between world of being too disabled to work yet not considered disabled enough to receive help from the few disability benefit programs available.

The Multiple Sclerosis Society of Canada is actively working to persuade governments that people who have disabilities that come and go—often called episodic disabilities—have a lot to contribute to Canadian society and a few changes could help them do just that.

“We are convinced it makes good economic sense if the current Canada Pension Plan disability (CPP-D) program and Employment Insurance sickness program were made more flexible. We have made some concrete, very doable recommendations that we hope the federal government will adopt,” said Susan A. Murray, chair of the MS Society’s National Government Relations Committee.

Sharon Segal knows from experience what a difference some support could have made during her working life. Diagnosed with MS at 20, the Winnipeg resident found it impossible to hold down a full-time job on an ongoing basis. “Because of the unpredictability of MS attacks and the overwhelming fatigue that MS also brings, I haven’t been able to work full-time on a regular basis. For close to 35 years, I’ve managed with short-term positions, self-employment, contracts and the like,” she explained.

The lack of full-time employment means lack of workplace benefits, no pension plan, reduced CPP contributions and less income. This scenario is repeated for Canadians with MS, lupus, arthritis, mental illness, HIV/AIDS and other diseases that have symptoms that worsen and then get better, but usually don’t go away completely. In its brief to the Standing Committee on Finance in the fall of 2006, the MS Society recommended the federal government tackle this issue on both a short-term and long-term basis. Short-term solutions include defining EI sickness benefits in terms of days, not weeks.

Providing EI sickness benefits as 75 days or 150 half-days instead of 15 weeks would allow workers who are ill, but who can manage part-time work, to keep their attachment to the workforce through more flexible scheduling. The MS Society also urged that the eligibility criteria for CPP-D be modified to include people with episodic disabilities, and that CPP-D be made more flexible to allow part-time work and part-time benefits.

Another recommendation is to harmonize the application process for CPP-D and the disability tax credit (DTC). “There is no reason to make people apply twice when a single application could accommodate both programs. This will save time and energy for people with disabilities, for the health care professionals who fill out the forms and for federal officials, and it should provide a significant cost savings to government,” said Ms. Murray.

Why this attention on income issues?

For people with MS, the unpredictable episodes, which can cause temporary loss of vision and the ability to walk, problems with speaking and a loss of balance, mean many people have to leave employment five or 10 years following diagnosis. Over time, up to 80 percent of people with MS are no longer employed.

“The lack of consistency and the patchwork nature of income security and support options are striking. Federal programs use different qualification criteria, as do private insurers and provincial governments. “Many people with episodic disabilities can work occasionally or part-time when their symptoms aren’t bothering them, but once people qualify for a disability benefit program, they hesitate to do any work for fear of losing those benefits,” said Ms. Segal.

The Multiple Sclerosis Society of Canada is working with a coalition of other organizations, the Episodic Disabilities Network, concerned about this issue. The priority is to educate governments, employers and private insurers to make changes to current disability income security programs to meet the needs of people with episodic disabilities.

The MS Society of Canada’s recommendations to the Finance Committee are posted at www.mssociety.ca (keyword search: finance brief 2006)

To learn more about the Episodic Disabilities Network, go to www.hivandrehab.ca and click Research and Education. Organizations that are interested in the Episodic Disabilities Network can contact either Deanna Groetzinger at deanna. groetzinger@mssociety.ca or Eileen McKee at emckee@hivandrehab.ca.