By Nicole Mellin and Deanna Groetzinger
What if Canada was the best in the world at meeting the needs of family caregivers?
This was the question that participants tackled in late November 2009 at a two-day Caregiver and Poverty Stakeholder Forum hosted by the Multiple Sclerosis Society of Canada. The forum brought together a diverse group of health charity and non-profit organization leaders, researchers, policy-makers and representatives from the federal government to examine the issues related to caregiving and economic security.
Supporting caregivers and advocating for social improvements for caregivers are not new undertakings for the MS Society and the other groups that participated in the forum. Family caregivers provide assistance for family and friends who are in need of support due to age, disability, chronic injury or long-term illness. A family caregiver’s efforts, understanding and compassion are essential in enabling care recipients to live with dignity and to participate more fully in society.
However, providing care can have negative consequences for employment and, in some cases, lead to economic insecurity and even poverty. Dr. Janet Fast, a researcher at the University of Alberta, told participants that up to 45 per cent of caregivers had reduced their hours of work, up to 29 per cent had missed a promotion, and up to 48 per cent had quit work because of caregiver responsibilities.
Sherri Torjman, vice president of the Caledon Institute for Social Policy, said caregivers jeopardize their current incomes and future pensions when they leave the workforce to become caregivers. Some policy changes that could help are: improved income security for persons with disabilities; protection of caregivers’ employment/income status; and reduction of the cost of disability supports. For example, there could be immediate reform to EI Compassionate Care Leave to make it more flexible; extension of the Child Disability Benefit and expansion of CPP drop-out provisions.
Employers also have a role to play, pointed out Nora Spinks, president of Work-Life Harmony Enterprises. The emerging principle to support family caregivers is “customization” – the opportunity to adjust work without sacrificing job and career advancement. While some employers support family caregivers with robust programs, others need to be shown how caregiver support can go hand-in-hand with successful business enterprises.
Forum participants were passionate and purposeful in committing to creating a change in Canada’s social mindset. They agreed that excessive financial burden should not be tolerated in Canada, and that economic security for caregivers to live a full life is a necessity.
The context for family caregiving in Canada has changed in response to the evolution of the family unit. As Ms. Spinks noted, families are smaller and more dispersed; there is increased participation of women in the labour market; marriage and childbearing occur later in life and retirement is delayed. At the same time, the demand for care is increasing in response to the aging population paired with increased disability rates; the preference of care recipients is to be independent and at home for as long as possible; healthcare staff shortages are limiting the capacity of the formal health care system; and health system reform across the country has resulted in the movement of care from the acute system to the community. Today’s reality is that the formal and informal systems for caring are, and will continue to be, challenged to meet the needs of Canadians with health-care related needs.
The MS Society and other forum participants affirmed that Canada is capable of creating the conditions through which caregiving is not only possible, but celebrated and valued as core to the Canadian social construct. They agreed to keep the spotlight on this important issue, which for so many Canadians is a labour of love.
The MS Society of Canada thanks Pfizer Canada for supporting the Caregiver and Poverty Stakeholder Forum through an unrestricted educational grant.
MS Society of Canada 175 Bloor St. East, Suite 700, North Tower Toronto, ON. M4W 3R8 www.mssociety.ca Phone: 1-866-922-6065
Nicole Mellin is assistant vice-president, national client services, and Deanna Groetzinger is vice-president, government relations and policy.
The MS Society of Canada is addressing the issues faced by family caregivers in a variety of ways.
Services – Across the country, the MS Society provides information about multiple sclerosis as well as resources, activities and support groups for caregivers to help effectively manage the ongoing stress that providing care can present. For more information, visit the caregiver section under Living with MS a www.mssociety.ca
Government relations – The MS Society is advocating to the federal government to make changes to financially help people affected by MS, including allowing spouses to claim the caregiver amount as a tax credit and increasing tax credits for people with disabilities. For more information, visit Advocacy at www.mssociety.ca.
The Multiple Sclerosis Society of Canada is the only national voluntary organization in Canada that supports both MS research and services for people with MS and their families. 
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