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Deinstitutionalization, Community Commentary - Michael Bach

Today we are launching the first of our 12 week series of long form blog posts titled "Deinstitutionalization, Community Commentary" Our first post comes from CACL EVP Michael Bach titled; "Deinstitutionalization – What does justice demand?" We want to encourage you to comment on this and the next 11 posts in this series. Comment and share with others lets create a national dialogue on this subject and get people talking.

Deinstitutionalization – What does justice demand?

By Michael Bach

What does justice demand?  An age-old question applied over the decades in Canada to unequal access to health care, to addressing long-term and entrenched poverty, to confronting what many have seen as cultural genocide of First Nations and Aboriginal peoples by residential schools and other means.  The thing about answering ‘what does justice demand?’ in any particular situation is that it’s never a completely straightforward answer.  People and governments struggle over what it requires in a particular context.  Sometimes a government policy decision or a court ruling give a temporary answer, but if it doesn’t fully satisfy those who experience injustice, the case isn’t permanently closed. Political philosophers, policy makers and activists give answers to the question that tend to fall into two camps.  Justice requires redistribution of resources, or it requires new ways of recognizing certain people and groups.  For those who say it requires both, there tends to be a tilt in favouring either one or the other – redistribution or recognition – as a kind of formula that justice requires at any particular moment.

So what does justice demand when it comes to confronting the confinement of people with intellectual disabilities to institutions?  There is no question that it requires distribution – a re-allocation of resources from facilities to providing individualized supports to people in ways that finally give them greater choice and control in their lives; and opportunity to live in homes of their own choosing, to make friends, find a job, get connected to their communities and re-build their lives.  Many of us have been working for years with governments and other stakeholders – raising our voices and demands, undertaking research, launching court cases, convening round-tables, engaging law and policy makers, delivering community supports and building community leadership – to get resources re-distributed, re-allocated. 

We know the job is still not done.  We still have large facilities to close, and after them large group homes and living arrangements.  We have made progress, many people who were institutionalized have rebuilt lives and are living in the community in ways that we couldn’t have imagined a few decades ago.  But we also see many who have left the confinement of a large facility to live a life confined in the community.  And many more lying in unmarked graves on the grounds of facilities.  Dis-respected and abused even in death, no mark to remember them by.  Is re-allocation of resources sufficient to do them justice? 

So what is to be done? I wonder if in the balance of our efforts we have won more ‘redistribution’ of resources than ‘reconstruction’ of the social and legal recognition of people with intellectual disabilities.  Undoubtedly an advance in the political rhetoric of inclusion has been used to justify closures.  And we will continue to leverage that rhetoric for more redistribution to ensure people access goods and services in the community of their own choosing. 

However, in doing so has society – governments, communities, the courts, schools, employers, unions, political parties – yet come face-to-face with the centuries of misrecognition of people with intellectual disabilities, and what that has cost?  Is it enough that the last door, of the last ward, of the last institution close?  Is it enough that we tear the buildings down? Is it enough that people have moved to the community and are now living much better lives, or at least more people are, and for those that aren’t yet at least we know the policies of redistribution that can help make that happen?  I don’t think so.

There is a kernel of justice in the apologies we heard from the Government of B.C. to the residents of Woodlands, and in the anticipated apology from the Government of Ontario in the announcement of a settlement in response to the class-action suit by former residents of the Huronia facility.  As residents in both cases said, apologies aren’t enough.  But are the cash settlements – the redistribution of resources – enough either? 

My belief is that the institutionalized patterns of social and legal misrecognition of people with intellectual disabilities run so deep that we need some ways of restructuring widespread perception in the face of such historic and systemic abuse of power.  The steps by both the governments of B.C. and now Ontario are very encouraging.  But as with the first steps of recognizing the history of residential schools in this country, or the internment of Japanese Canadians in the Second World War, we are far from confronting the injustice against people with intellectual disabilities in Canada.  Truths have yet to be told, clearly heard and understood.  Reconciliation is far from accomplished.  Is a truth and reconciliation commission part of the answer? A Royal Commission?  What does justice demand?  Let’s not accept today’s settlements as the answer too quickly.  They are a momentous and hard fought step on the way.  To those who made them happen our deepest gratitude for your courage and tenacity.

But justice is not yet done.  Lest we forget.


Having been around the block

Having been around the block twice with involvement in the closures of Tranquille and then Wppdlands in BC, it dismays me that the government did not learn lessons from the lack of community supports for those coming out of Tranquille. the committment for sufficient community based supports for people retuning to home communities from Tranquille was short lived resulting in many people being traumatized again through placement in other justice based facilities or, being dumped onto the streets. The lack of mental health supports here continues to be a barrier to those being successful and fully included in communities. The crown corporation responsible for the support system continues to cut supports to the bone while creating a huge hierarchy to ascertain who is to get supports cut next. The social support system here is in a mess with a sad message about how we treat our most vulnerable of citizens. we have limited supports for people who are aging in community and cannot even provide them with the limited supports our seniors are given although those supports leave a lot to be desired.

In being part of a solution, here are some suggestions for viable distribution of the resources;
1 Recognize that the families and agencies providing supports know the person and best type of support the person chooses. The crown corp should provide open access to the umbrella of supports.
2 Use resources to create a service support area at the end of the continuum of services for those experiencing health concerns related to aging.
3 Recognize that people in the system are of equal value at either end of the continuum. Just as supports were recently allocated for youth in transition, let us ensure equal supports are allocated to adults in transition to retirement. Not all people want to work - create some options for a meaningful life in inclusive communities.