Multiple Sclerosis Society of Canada

A message from Valerie Hussey, chair, board of directors, MS Society of Canada

In the summer of 2016, the MS Society of Canada embarked on an exciting direction in pursuit of our mission-driven goal: to accelerate our research efforts and investments in areas that are of priority for people with MS and hold the most promise in leading to new treatments, better quality of life and a cure. At the same time, we will continue to provide programs and services that create the greatest impact, address quality of life, and provide meaningful benefit to the greatest number of Canadians affected by MS.

The role of the board of directors, among other things, is to consider stakeholders’ expectations on how the MS Society funds research and services, and the organization’s ability to meet those expectations. With the understanding that people living with MS desire a higher proportion of funding be expended towards research, the board of directors unanimously committed to shift the expenditure ratio of research to services, and approved a strategic framework called Accelerating Research.

The strategies to accelerate research have been made from the perspective and realities of the MS Society as a whole. The MS Society’s volunteer board of directors governs the entire organization on behalf of all those we serve, which means 100,000 Canadians with MS and their families. The board has a deep understanding of what it means to live with MS as many of its members live with or are affected by MS.

Accelerating Research takes into account three key considerations.

First, the MS Society’s mission is to “be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life". Accelerating Research builds on the value of research in providing new answers and treatments for people living with MS. Research informs treatment delivery, care and access – all of which impact quality of life. The MS Society places tremendous value on the work in our programs and services area. The challenges and hardships faced by Canadians living with MS are significant, and we know that the community services we provide are highly valued. The MS Society will continue to offer programs and services that help achieve the highest possible quality of life while living with the daily challenges of MS.

Second, Accelerating Research is a direct outcome of the Listening to People Affected by MS initiative where over 6,000 Canadians affected by MS told us what it’s like to live with MS in Canada. We heard that a significant majority of people who responded to this survey want more money to go to research. More money for research does not mean services are less important; it is about ensuring we speed up the pace of research and it means investing in research that could make positive impacts on living with MS on a day-to-day basis.

Third, the challenge of balancing demands for research funding and services and programs, particularly at a time of decreased revenues, is not unique to the MS Society. Fewer people are donating to charities every year but the demand for services by the charitable sector is increasing. The MS Society is no exception. Our fundraising relies on small gifts from many donors and we receive less than 2% of our revenue from governments. The board-approved strategies to direct more money to research include being more effective in the way we operate, reducing our administrative costs, reviewing our governance and organizational structures, and retiring several programs and services.

Our goal is to ensure that people affected by MS, no matter where they live, will have access to a core set of programs and services. This is a shift from our current model of programming which offers little equity of access. Today, our programs vary tremendously from one community to another, in terms of availability, quality, and level of support. By the end of 2019, the following programs and services will be available to all Canadians with MS: information and support services delivered through our MS Knowledge Network; education programs; peer support programs including friendly visiting to people living in long term care; and, volunteer legal advocacy services.

Our quality of life grants for equipment (which provide direct funding for items like scooters, wheelchairs, walkers, orthotic devices, grab bars and other aids, ramps, lifts, etc.) will continue in the divisions where it is currently available.

Our vital network of chapters, acting as direct service providers, partners in service delivery or advocates on behalf of people affected by MS, will provide other innovative programs and services that will respond to the to the needs of each community. Wellness, exercise, social and recreational programs - such as aqua fit, yoga, fitness, art and music therapy, bowling, social gatherings and holiday celebrations and others - will be available in various communities, offered in partnership with key providers. Our chapters will continue to create opportunities for people affected by MS to come together and engage with the broader MS community.

Several programs will be retired. These include the quality of life non-equipment grants program; physiotherapy services; and services provided by personal support workers. We understand that retiring these programs, and in particular the quality of life non-equipment grants (which provide direct funding for items like housekeeping, snow shoveling, lawn care, respite care, baby-sitting, transportation or incontinence supplies, and others) will be a loss in the communities where they are offered.

Closing the financial gap and lifting people living with MS out of poverty is at the heart of the quality of life non-equipment grants program. The MS Society does not have the resources to remedy that situation by directly and adequately supplementing the income of all individuals affected by MS who are in need. That is the role of our government. Moving forward, we will aggressively lobby governments to be accountable and demonstrate the willingness to impact poverty for all Canadians, including people affected by MS — through things like guaranteed income supports, disability pensions, and homecare supports. Changing policies and influencing governments takes time, and we acknowledge that these outcomes will not replace programs and services immediately. To reduce the impact of the retirement of the quality of life non-equipment grants program on current beneficiaries, our plans will allow for a three-year transition period for those impacted by these changes. Our staff is actively working to develop plans to work with community service groups to find alternative ways to address this kind of financial support.

The MS Society is not in the position to replace services provided by government through the public health system or other community providers. Therefore, we will no longer offer physiotherapy (available in Victoria, B.C.) and services provided by personal support workers (available in several chapters in select divisions). Applying the principle of not paying for services that governments provide is consistent with other applications; we do not fund access to disease modifying therapies even when a government does not provide public reimbursement nor do we pay for people with MS in Canada to go seek out-of-country treatments. People currently benefitting from these programs will not be left on their own: as we retire the programs, we will seek out opportunities to work with healthcare providers that are in a better position to directly provide such services.

To direct more funds to our mission, the MS Society has been reevaluating our space utilization, decreasing expenses related to occupancy and to administration. The reduction of occupancy costs has already been very effective. Moves to smaller footprint, open-concept design offices, office mergers, use of community space, going virtual, and co-location with like-minded health charities has resulted in reduced occupancy costs in Toronto, Saskatoon, Edmonton, and Winnipeg, and the efforts continue.

The MS Society has been adapting programs and services delivery within communities across the country, including using community spaces, and we can replicate these successes in many more communities. The board directed the sale of MS Society owned properties, where this is legally feasible. The chapters currently housed in these properties are moving to new locations and program delivery methods. Programs in those communities will continue. All net proceeds from the sale of owned real estate will be directed to research in finding treatments for progressive MS or to slow or halt progression in MS.

As a group of volunteers serving in the capacity of board members, we believe that these initiatives are essential to accelerating research that will advance treatments, benefit quality of life and ultimately find a cure for multiple sclerosis.

As we transition to this new model, information will be communicated via email messages, by phone, on our website and with the help of local media outlets.

I would like to thank all of our supporters and the broad MS community for your continued support and patience during this time of transition. If you have any further questions, please email us at feedback@mssociety.ca.


Sincerely,

Valerie Hussey
Chair, Board of Directors, MS Society of Canada