PEOPLE AND ORGANIZATIONS FIGHTING LONG-TERM CARE
Megan Linton is a disability policy researcher, writer, and advocate. Her research and advocacy focus on the pervasive use of institutions for disabled children & adults across Ontario and the need for deinstitutionalization.
“Disabled communities are already building abolitionist futures—building ramps, learning how to share meals through feeding tubes, replacing oxygen tanks, administering medication, massaging aching joints, arranging care work, staying up until our kins suicidal thoughts have subsided. We can build communities where disabled people can exist and thrive, and these communities do not have prisons or personal care homes." - Read more.
Megan researches disability, political economy, and public policy, with a disability justice community network at the centre of her research. She loves baking cookies, reading spectral fiction, and dreaming of crip futures. Read her writing here and find her tweeting about sex and disability at @PinkCaneRedLip.
Sarah Jama is the co-founder and lead organizer at Disability Justice Network of Ontario. Based in Hamilton, ON, her lived experiences with cerebral palsy have fostered interests and a passion for community engagement, disability justice, and activism.
“I am excited to move toward a world where our worth does not have to be tied to our ability to produce. I am excited to use this conversation around disability justice to leverage larger conversations about what building a world that doesn’t dispose of people will look like. Because I think that’s revolutionary and I think disability justice gives people the language to be revolutionary in their politics and to imagine a world where all of us fit. Because if you can build a world that fits disabled people who are literally discarded because of their inability to produce work, then you’re building a world that will fit everybody.” - Read more here
Sarah is a board member with the Hamilton Transit Riders Union (HTRU), a council member on the Hamilton Immigration Partnership Council, and a member of the Hamilton Community Benefits Network (HCBN). She currently works at the Hamilton Centre for Civic Inclusion as a Program Coordinator. She tweets at @SarahJama_.
For the past 12 years, the Nova Scotia government has forced Vicky Levack, a Halifax-based woman with cerebral palsy and spokesperson for the Disability Rights Coalition, to live in a long-term care home, despite her not wanting to be institutionalized. But in August, after years of advocacy, Levack won the right to live independently and receive at-home care from a support worker.
“I thought I was going to die in here and never have a life outside of these walls. And now I will.” Vicky told Global News. “I’ve heard people call this a gift. This is not a gift. This is something I deserve.” - Read more.
Vicky will be a part of a community housing pilot project that will move four people out of institutions and into two three-bedroom condos. Two people will live in each home with the help of a 24-hour support worker. Vicky and her roommates will move in together in December 2021. - Read more.
Vicky believes her tenacity and fight won her the right to live in community and she plans on continuing her advocacy and expanding the program until everyone with disabilities can choose where they live.
In August 2020, Jonathan Marchand, a Quebec City-based activist with muscular dystrophy, camped outside the National Assembly in a makeshift cage emulating life in a long-term care facility to demand the Quebec government provide funding for independent living. One year later, Jonathan won the right to live independently and now rents his own apartment after 10 years of institutionalization.
After an estimated 1000 hours and 100 meetings with different government officials, Marchand is now receiving funding through a government program to pay for in-home support services, which Marchand notes is cheaper than long-term care and respects the rights and freedoms of people with disabilities. He hopes that his win will help other incarcerated people with disabilities live independently.
“We proved that there is an alternative to institutionalization for people with disabilities,” Jonathan told CBC. "I did set a precedent. We're going to build on that and create the momentum so that things can change. I'm not giving up."
- Read more
Jonathan advocates for the right of young people with disabilities to choose how and where they want to live, and not be forced into institutions. "For us, it's not just about being kept alive. We want the tools to be included in society," he told CBC. "For that, personal assistance is essential, as it exists elsewhere in Canada and around the world.”
Follow Jonathan Marchand’s advocacy on Twitter at @jmarchand.
(On Twitter: Jonathan Marchand asks for donations to Coop Assist)
Tyson Sylvester and Amelia Hampton in Winnipeg
In July 2021, after a five-year-long legal battle, Tyson Sylvester and Amelia Hampton, two Winnipeg-based wheelchair users with cerebral palsy, reached a precedent-setting human rights settlement with the Government of Manitoba and Winnipeg Regional Health Authority. The Government of Manitoba admitted that there were gaps in services for adults with disabilities and, as part of the settlement, promised to launch a pilot program to offer services to 30 adults with complex disabilities and study barriers in this system of care. The pilot program will test a new model of service delivery - one that is person-centred with a focus on timely service coordination and navigation for adults with complex disability-related needs.
The pair launched the human rights complaint in 2016, arguing that Manitoba was discriminating against adults with physical disabilities by cutting off supports after they aged out of the youth program at 21. 25-year-old Tyson has been living in a personal care home for three years because he can’t get funding for the services he needs to live independently. "I’m very happy that the government has decided to agree to what we asked for. I’m definitely seeing this as a step forward in human rights," he told the Winnipeg Free Press. - Read more
Beth MacLean, Sheila Livingstone, and Joey Delaney
On September 24, 2021, Beth MacLean, a Nova Scotia-based woman with intellectual disabilities who won a landmark human rights case in 2019 forcing the Government of Nova Scotia to provide her with a home in the community, passed away peacefully.
Beth was one of three people with intellectual disabilities who were forced to live in a Halifax hospital ward for years before advocates helped them launch a human rights care to live with the help of support workers in a home in the community called a “small options home”. The board ruled that the province violated the rights of MacLean and the two other plaintiffs, Joseph Delaney and the late Sheila Livingstone -- who died before the hearing ended -- because they were held at the Emerald Hall psychiatric unit in Halifax, despite doctors saying they could live in community.
Organizations Fighting Long-Term Care
Disability Justice Network of Ontario
The Disability Justice Network of Ontario aims to create a world where people with disabilities are free to be. Through their community-led work, DJNO’s mission is to build a just and accessible Ontario wherein people with disabilities: (1) have personal and political agency; (2) can thrive and foster community; (3) build power, capacity, and skills needed to hold people, communities and institutions responsible for the spaces they create.
Doctors for Justice in Long-Term Care
Doctors for Justice in Long-term Care (DJLTC) is a group of physicians, researchers, and advocates who have come together to express their concern for the safety and well-being of Ontarians who reside and work in long-term care (LTC) homes.
Throughout the pandemic, DJLTC have called on the Ontario government to: (1) end for-profit LTC;(2) give penalties and remove licenses for breaches of infection protocols;, (3) hire more staff and increase the number of full-time staff;(4) set a minimum pay standard for front-line LTC staff consistent with that at hospitals; (5) permit family caregivers to enter LTC homes and care for their loved ones; (6) ensure partnerships are established between hospitals, primary care teams and all LTC homes; (7) keep hospital or community based medical teams on standby, and give them the authority to go into LTC homes to help with outbreaks; and (8) speed up the vaccination rollout for LTC residents, front-life staff and essential family caregivers.
Find more information on their website and follow them on Twitter at @Docs4LTCJustice.
The Advocacy Centre for the Elderly
The Advocacy Centre for the Elderly (ACE) is a specialty community legal clinic that was established to provide a range of legal services to low-income seniors in Ontario. The legal services include advice and representation to individual and group clients, public legal education, law reform and community development activities. ACE has been operating since 1984.
The Advocacy Centre for the Elderly is committed to upholding the rights of low-income seniors. Its purpose is to improve the quality of life of seniors by providing legal services which include direct client assistance, public legal education, law reform, community development and community organizing.
Seniors for Social Action (Ontario)
Seniors for Social Action are a group of older adults from across Ontario demanding change of the ageist attitudes and policies that have led to the unspeakable conditions and high infection and death rates in long-term care institutions that came to light during the pandemic but have existed for decades. SSAO’s mission is to identify alternatives to institutionalization and encourage governments to finance these alternatives with a goal to end institutionalization.
Criminalization and Punishment Education Project (CPEP)
The Criminalization and Punishment Education Project (CPEP) was started by students and professors at Carleton University and the University of Ottawa, aims to bring together critical criminologists, students, researchers, community members, front-line workers, and those affected by criminalization and punishment, to carry out such public education, activism, and research in the hopes of creating social change. Particularly, CPEP members work to identify key issues to be the focus of criminological and social justice inquiry, develop collaborative research projects, and plan and carry out related public education and advocacy initiatives.
CPEP collaborated with DJNO on the #CopsOutOfCare campaign.