Recently, the Alberta government announced the closure of Michener Centre’s institutional facilities, where 125 individuals with developmental disabilities reside.
As the parent of an adopted son with developmental disabilities and significant challenges who, it was presumed, could never grow up as part of a family and is now enjoying a successful life in community, I can empathize with the anxiety of families opposed to the closure, while not agreeing.
Experience tells us the trust of families cannot be realized by a discussion of facts, but only by ensuring the transition to community is thoughtful and thorough.
The 1970s heralded a sea change in the field of developmental disabilities when individuals were recognized as valued human beings deserving of a life in community with the resultant development of community-based support systems. About this time, Michener’s population peaked around 2,200 individuals. The mid-1970s saw the beginning decline in institutionalization and the first closures as families had access to community supports and no longer chose or were forced to place their children in institutions.
Close to 2,000 Michener residents have since returned to community without major incident. In Alberta today, more than 15,000 children and adults with developmental disabilities live in the community.
Institutionalization is opposed by every provincial, state, national and international organization of families who have sons and daughters with developmental disabilities, people with disabilities, including developmental disabilities, and by professionals, researchers and practitioners.
It was the combined efforts of these international organizations, representing millions of families and individuals with disabilities across more than 100 countries, that led to the adoption of the United Nations Convention on the Rights of Persons with Disabilities, to which Canada is one of more than 100 signatories.
Article 19 of the convention states, “Parties to this convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.”
The benefits of returning individuals to community, even when they lived in institutions for decades and irrespective of age, severity or complexity of disabilities or health, is well established by decades of published studies and meta-analytical research in peer-reviewed journals.
Alberta’s own reviews of individuals previously in Michener found the transition to community to be successful. However, it is also clear that simply returning to community is not enough to ensure a fully realized life unless there is commitment to provide the resources to enable a good life with friends, a real home and community belonging. It’s just as true that a fully realized life is not possible while remaining in an institution.
Some provinces have been institution-free for more than 20 years and almost all are closing their remaining institutions. Further, almost every government review of disability services in Alberta, along with the Premier’s Council on the Status of Persons with Disabilities, has called for the closure of institutions.
It is a fallacy to assume the individuals remaining in the institution have needs different than all who successfully live in community. In fact, there are many more individuals with greater complexity of needs and challenges living in community than those living in Michener. There is no one living in Michener who could not live in the community — the evidence is irrefutable.
I am challenged to find another example where there would be support for increasing public expenditures to sustain a service model more than 150 years old that is not supported by research, opposed by every relevant national and international body and when research evidence over decades supports a better alternative. Is the nature of those with developmental disabilities so foreign to others that they cannot see the need for a real home in community is as vital to their well-being as it is for each of us?
Given that families no longer need or want to place their family members in institutions, the only way Michener can continue indefinitely, given its aging population and the cost of maintaining dated facilities, is to threaten those in community by forcibly having them fill the empty beds of those who die each year.
While I appreciate families who have individuals in Michener never wanted to see the institution close, the end was inevitable and necessary. We know from the many past closures, once this is accepted, families will take part in the planning process.
And in time, like the thousands of families who preceded them, these families too will come to appreciate the benefits of community life.
Bruce Uditsky is chief executive officer of the Alberta Association for Community Living.