“As a society we must guarantee future generations of people with intellectual disabilities and their families that we will not create institutions again.”

Janet Forbes, Executive Director, Inclusion Winnipeg

Every year the United Nations holds an event called the Conference of State Parties (COSP). COSP is a gathering of all the countries who have signed and agreed to follow the United Nations Convention on the Rights of Persons with Disabilities (CRPD). It gives the countries a chance to share information and talk about issues with implementing the convention.   

This year, Inclusion Canada partnered with People First of Canada and Inclusion International  to co-host a session about Canada’s experience with deinstitutionalization – supporting people with an intellectual disability to move out of institutions and take their rightful place in our communities.

So, what is an institution? Here’s how we define it:

An institution is any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated.

An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. 

An institution is not defined merely by its size.

Canada has been working on deinstitutionalization for more than 50 years. During that time, we’ve learned a lot about what works and what doesn’t.

During our COSP session, survivors of institutions, and allies who have been involved in closing large institutions, shared their learnings. These included:

  • The importance of involving champions for community living – people with vision, passion, and leadership. In the words of Gordon Fletcher, Co-chair of the Deinstitutionalization Task Force, these champions “dare to dream a dream of equal citizenship for people with disabilities where they become valued contributing members of society”.
  • Putting the needs and preferences of the person with a disability first. This means supporting people to decide where and with whom they want to live, and what they want their life to look like. It’s an ongoing process, not a one-time planning exercise.  
  • Respecting the experiences and roles of families. Did you know that for years professionals told families that putting their child in an institution was the best decision? It should be no surprise that families may feel betrayed, angry, or distrustful of service systems. Many families worry that their loved one won’t be well supported outside the institution or that overwhelming responsibility will be placed on them as a family. Families need to be included in the deinstitutionalization process and their fears addressed.

“The fearful unknown of the closure of Valley View turned into a situation full of dreams and possibilities.”

Gloria Mahussier, Past President of Inclusion Saskatchewan
  • Building person-centered plans that create real homes for people with disabilities. Every person is different and their plan should be too. It’s about providing support in a way that meets the person’s unique needs, respects their choice, and allows them to participate fully in their community.
  • The importance of quality supports. When an institution closes, funding should be reallocated to provide support in the community. People need the right kind of support, provided in the rights way, at the right time, by the right people. People with a disability and their families are in the best position to know whether supports are respecting the wishes, preferences and needs of the individual.
  • Recruiting and developing qualified staff. Making the transition from an institution to community living relies on having knowledgeable and skilled support staff. When an institution closes, unions, facility staff, and communities are often concerned about job losses and economic impact. This can be an opportunity to partner with and train staff to provide different and better support in the community.

“Staff supported the person as they said goodbye to a place they lived for many years and helped them welcome their new adventure and new supports.”

Gloria Mahussier, Past President of Inclusion Saskatchewan describing the role of staff in supporting the transition of people from life in an institution to life in community.
  • Building community partnerships. Individuals, families, governments, and community groups need to work together to ensure the rights of people with disabilities are respected. These groups communicate a united message that closing institutions is in the best interest of everyone.
  • The need for a clear plan and timeline. Governments need to send a clear message that institutional models will no longer be supported by public policy or funds. This commitment needs to be backed up with resources, planning support and clear time frames.
  • Communicating clearly and effectively. Some people will disagree with an institution closing. Other people will have lots of questions. Being prepared with information about the plan can help.
  • Coordinating each person’s transition to community. Some people have lived in institutions most of their lives. Careful planning needs to go into supporting each unique person to adapt to their new home.

David Weremy and Leta Jarvis are both survivors of institutions. Their experiences of leaving institutional life were very different.

After being forced to live in the Manitoba Developmental Centre (MDC) for 18 years, David eventually moved to a group home. He explained how life in the group home was like being at MDC – he couldn’t go where he wanted, he had to come home early, and was told what to eat and when to go to bed. He was over-supported to the extent that he didn’t have freedom, or choice in his own life.

Leta was 7 years old when she was placed in her first institution. She has lived in seven institutions – years that were filled with abuse and neglect. When Leta was told she had to leave the institution she was offered no support.

“They told me that was my problem – to do the best I can. So I went out in the community and I went down the wrong track. I started drinking and doing drugs. There was no support for me at that time. There was nobody that cared for me.”

Leta Jarvis, Deinstitutionalization Task Force Member and Institutional Survivor

David and Leta’s stories highlight how deinstitutionalization can go wrong. By over-supporting David they re-created an institutional experience, just in a smaller setting. By under-supporting Leta they left her without the support she needed to succeed.

Why does this matter?

  • In 2021, large institutions that house people with an intellectual disability still exist in Canada.  Some provinces have announced their intentions to close these facilities.
  • Even as large institutions close, people with an intellectual disability are still struggling to have their choices recognized and respected. The restrictive nature of institutions is being recreated in smaller settings across the country.

  • Many people still have their legal rights removed. Others are denied the supports they need to make decisions and participate fully in their community. Real choice is still not a reality for many people with an intellectual disability.
  • The COVID-19 pandemic has reminded us how dangerous congregate living is. Outbreaks, deaths and stories of neglect and abuse have been reported and caught the attention of the public. This increased awareness can be used to demand change.
  • The United Nations Convention on the Rights of persons with Disabilities (CRPD) recognizes the right of people with disabilities to have equal choice, live independently and be included in the community. Although Canada has signed this international law, our country isn’t fully living up to its commitment. We have work to do.

“The failure to provide access to care in the community is a violation of basic rights and makes them (people with a disability) remain second class citizens, hidden away. For too many people, time ran out. People who lived most of their lives in the institution and died before the right to live in the community was recognized. Our society must recognize and reconcile the truth of what was done to thousands of vulnerable people.”

Janet Forbes, Executive Director, Inclusion Winnipeg

What can I do to help?

  • Read the Deinstitutionalization Task Force’s document The Right Way: A guide to closing institutions and reclaiming a life in the community for people with intellectual disabilities. This process has guided the closure of large institutions like Valley View Centre in Saskatchewan as recently as 2019.

  • Learn about the history of institutionalization in Canada. The Institution Watch website is a good place to start. Knowing our history is an important part of not repeating it. Sign up to receive their newsletter.

  • Have a conversation with a family member or friend about the definition of an institution. Think about the living arrangements of people with an intellectual disability in your community. Do any of them match this definition? Does this surprise you?

  • Watch The Freedom Tour documentary to understand the experiences and perspectives of self-advocates and survivors of institutions in Canada.

  • Call or email your elected official. Tell them you want your tax dollars spent on supporting people with disabilities to live inclusive lives in the community, not paying for institutions. Share this blog with them.

If you would like to watch a recording of the webinar that inspired this blog, please click here.