MS Society accused of neglecting sufferers
CHARITY SAID TO BE FOCUSING ON FUNDING RESEARCH INSTEAD OF PROVIDING AFFORDABLE SERVICES
The way the Multiple Sclerosis Society of Canada describes it, the reorganization it began implementing this year promises exciting things.
“Transition can be tough, but it can also create opportunities,” Tania Vrionis, president of the charity’s B.C. division, wrote last month. “We are excited about what will be offered in 2017. Ultimately we know these changes will better serve people living with MS.”
But with the closure last week of the MS Society centre in Victoria, more than 100 MS sufferers there are feeling abandoned. They have lost access to affordable physiotherapy and exercise facilities. The building that has served as a gathering spot for decades is up for sale. And they warn that others living with MS across Canada will pay the price as the charity places greater emphasis on funding research over providing services.
“The centre was somewhere safe where I could go with other people who were the same, who knew exactly how I felt when I said I couldn’t do something,” said River Grace, 67, who relies on a motorized wheelchair to get around. She moved into an apartment across from the centre 10 years ago to be close to its services. “It was freeing. It freed us all to be ourselves,” she said.
The MS Society, which has an annual budget of nearly $50 million, announced this year that it was accelerating research efforts in hopes of finding a cure for what it calls “Canada’s disease.” With about 100,000 sufferers of the central nervous system disease, Canada has the highest incidence of any country.
The organization’s shift in focus meant that something had to give. The charity has decided to sell off real estate where feasible and use the proceeds to fund research. And it is cutting back on the services it offers, promising to lobby governments to pick up the slack. Physiotherapy services and “quality-of-life” grants that funded such things as housekeeping, snow shovelling, transportation and incontinence supplies have been eliminated.
The Victoria centre, described as unique in Canada for the range of services it offered, closed ahead of schedule on Dec. 16. Its users have been provided a list of other providers and sites where such programs as yoga, art and meditation will be offered in the new year.
Susan Simmons, who has MS, said physiotherapy costs will more than double under the new arrangement, making it unaffordable for most users of the centre. Instead of free access to specialized gym equipment at the centre, people with MS will be charged $50 a month at a private facility.
“Most people who use the centre don’t have jobs,” she said. “That’s why they need it so desperately.”
Officials with the society declined to be interviewed for this article. “The model we used to provide services in Victoria was unique, and very expensive, which unfortunately made it unsustainable,” Vrionis said in an emailed statement. “The needs of people with MS are complex and critical, and as a non-for-profit we do not have the capacity to fill every gap.”
Simmons said she was shocked to learn that the society’s top-paid executive earned more than $350,000 in 2015. That is more than the prime minister’s salary of $340,800. Eight other society employees earned between $160,000 and $250,000.
“You’ve got somebody making $350,000 a year, and then you just took away services from a person earning $10,000 a year,” Simmons said. “There’s something really wrong there.”
She also noted that the MS Society has been criticized because only 44 per cent of its spending goes to charitable programs while nine per cent goes to management and administration and 40 per cent is spent on fundraising. In the latest MoneySense report card on Canadian charities, the MS Society received an overall grade of C+ and a D for charity efficiency.
Sandra Birrell, another user of the Victoria centre, said it should have served as a model. “We always assumed that the MS Society would roll this out across the country and start giving people the rehab that they need,” she said.
Simmons said everyone agrees research is vital, but the society’s approach has pitted members of the MS community against one another. “To ask them to pick research over (alleviating) human suffering, you can’t ask us to do that,” she said. “A cure is not going to help the people who are suffering today.”