There are many community-based models for people with intellectual disabilities. Why aren't we funding them?
Canada lags behind on both funding and policy to support community-based models.
In 2009, the last of Ontario's residential institutions for people with intellectual disabilities closed, marking an end to a tragic story told in the documentary Unloved: Huronia's Forgotten Children. The province had officially entered the post-institutional era.
Two survivors featured in the film, Marie Slark and Patricia Seth, bravely confronted the Ontario government to demand justice for the thousands who were harmed during their time at Huronia Regional Centre. By doing so, they challenged the narrative, described by author Harvey Simmons in 1982, that people with intellectual disabilities "have never made their own history."
But despite promises of reform, Canada lags behind on both funding and policy for community-based models that could restore autonomy to people with disabilities.
Deinstitutionalization is a change in mindset
Debate still remains over whether "clustering" people with intellectual disabilities in campus-like settings should prevail despite its evident failures. Yet having them live in the community requires both high-level support and social integration. Some activists want institutions abolished altogether, saying that as long as the option exists, it will be relied on, particularly in times of increased need.
Advocates who inspired change
Audrey Cole: The Smiths Falls, Ont., woman reached an agreement in a human rights case with the Ontario government to allow her adult son, who has Down syndrome, to get the support he needed to keep living in his home. The province previously told them he'd have to move to a long-term care facility.
Toddy Kehoe: Determined not to place her daughter with Down syndrome in an institution, the former Ottawa councillor worked to support parents and open the city's first school for children with disabilities.
Orville Endicott: A lawyer for the Canadian Association for Community Living, he worked to protect people with intellectual disabilities from discrimination.
Annie Stafford: Volunteering and working in Ontario for decades, she helped establish nurseries and support parents to avoid institutionalization.
Marilyn and Jim Dolmage: The couple from Gravenhurst, Ont., drove a class-action lawsuit against the Ontario government for harm caused to former residents of Huronia Regional Centre and to get restitution for survivors. The two sides reached a $35-million settlement in 2013.
Educator and advocate Liat Ben-Moshe has pointed out that so-called deinstitutionalization depends more on a change in mindset than on a change in location. In other words, it's about rethinking care so the individual's needs and autonomy are put first. That's why it's important to look at examples of deinstitutionalized living where inclusion, belonging and self-fulfilment are prioritized, to learn how people with disabilities can live meaningful and self-directed lives.
Two well-known examples of alternate communities that emerged in the mid-20th century include the Camphill movement, founded in Scotland in 1940, and L'Arche, founded in France in 1964. Both prioritize relationships between people with disabilities and those without, self-actualization and honouring people's unique gifts.
The movements have spread around the world and despite controversy and difficulties, they've consistently demonstrated the importance of allowing the relationships and desires of community members with disabilities to direct their values and vision.
Building a model that works for Canada
In the 1950s, parents in Canada started demanding a different life for their children with disabilities, which led to the establishment of a group of organizations now known as Inclusion Canada. Their founding goals were based on moving away from institutions and toward community living.
Deinstitutionalization can take different forms. In some communities, people with and without disabilities live together — partly segregated from mainstream urban life, but still engaged in it personally and professionally. In others, people with disabilities are completely integrated into the regular community.
Along with this, most advocates are in favour of government funding that allows people with disabilities to choose the services and supports they need. In this way, people with disabilities can develop meaningful relationships and a sense of belonging.
"We all benefit from the fact that people aren't in institutions," said Peter Park, co-founder of the advocacy group People First of Canada. "I feel that everybody can live in the community with support, whatever it happens to be."
Watch Unloved: Huronia's Forgotten Children on CBC Gem.
Madeline Burghardt is an instructor in disability studies at King's University College, Western University, and in the school of health policy & management at York University.
Acknowledgements: Thanks to Julia Morden for research assistance.
