In my 50+ years with Community Living, I have known only one person who wanted to return to an institution. In 1972, that man was brought out of the institution where he had grown up in Orillia. There he had enjoyed a favoured role delivering mail to the staff, and he generally had the run of the place. He found his Toronto group home and sheltered workshop too restrictive, and he resisted in every way he could. Eventually, his wish was granted and another person came from Orillia to take his place.
Other than that singular exception, I have never known anyone who wanted to live in an institution. On the other hand, I have known many who tried desperately to get out. It is a source of satisfaction that I have played a part in some of them succeeding.
In 1971, Walter Williston reported to the Minister of Health an extensive list of deficiencies in Ontario facilities housing about 5000 people with developmental disabilities. In 1973, the Progressive Conservative government published “A New Policy Focus” and began returning people to the community. The policy of community living has been embraced by every government since, and the last of those institutions closed in 2009. Subsequently, former residents prosecuted and won a class action against the Government of Ontario. The Premier publicly apologized for the harm done to people while in the care of those institutions.
Institutionalizing whole categories of people is not unique to those with disabilities. In 19th and 20th century North America, large industrial/correctional/medical-style institutions were the common response of public authorities to populations seen as problematic in some way. Child welfare took the form of orphanages. Indigenous children were taken by force to residential schools run by religious organizations. There were homes for “wayward girls”, and “gaols” for people whose behaviour offended the community. No one chose to live in any of those places.
Sustained advocacy over decades gradually shifted public policy away from institutional responses for some vulnerable groups. Residential schools and orphanages are gone, but the pain they caused is still felt by those who survived them. Memories and records show that even institutions founded by well-meaning people for humanitarian reasons fail. Over time they slide into an operating mode that causes harm to the people they were meant to help. Institutions invariably impose a human management model that involves isolation, regimentation, and dehumanizing emotional, and often physical, harm. This is a pervasive and ubiquitous pattern that transcends cultural and national boundaries.
Operators of today’s long-term care institutions may argue that seniors have chosen to live in these facilities. Many of us have known women and men who made that bitter choice to avoid becoming a burden to their children, yet people can only choose from the options available to them. That doesn’t mean that an institution is what they needed or wanted. When Community Living Ontario was formed in 1953, many families had made the agonizing decision to institutionalize a family member because nothing else was available. Then they spent a lifetime changing that situation for the next generation by organizing, building community services, changing government policy, and advocating for deinstitutionalization.
LTC institutions are places no one aspires to live in. A transformation of arrangements for the care of seniors is urgently needed, and it is not more LTC beds. The situation is like what Walter Williston saw in 1971, and the solution is similar too. LTC reform should begin by increasing support for people to age in place, thus slowing admissions to facilities. At the same time, people who wish to leave LTC should be supported and enabled to do so through individual planning, clear targets and deadlines, and adequate funding for community alternatives. This process must be personal, respectful, and collaborative.
If we are to transform care for seniors, there are four essential ingredients for success: focus on the individual; emphasize flexible arrangements tailored for the person; help individuals and small groups develop the supports they need where they already live; and if congregate housing is needed for some, small and dispersed is the only way to provide suitable arrangements.
Ontario has already learned these lessons. It’s time to apply that learning to long-term care. Public resources should be diverted from LTC institutions and applied to supporting people to age in place in the community. We in the Community Living movement know how to do this. We can help.