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IL Guest Blog: Deinstitutionalizing Ontario: Margaret’s Story

Chrystal Jansz Rieken, M.A., BCBA
Clinical Services Supervisor
Burkhart Center for Autism Research and Education

August 20, 2014

In Ontario, Canada, the state-run deinstitutionalization process, known as the Facility Initiative, saw the return of over 7,000 people to the community and closure of sixteen facilities by its completion in 2009. Guided by the Person-Centered Planning (PCP) approach, the Facility Initiative focused on the goals and wishes of the individual in their transition into the community. Read more about the Facility Initiative and PCP.

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An example of this successful process was seen in the planning and execution of Margaret’s transition. Margaret was a fifty-six year old woman diagnosed with a profound intellectual disability, spastic quadriplegia, scoliosis of the upper spine, and hyperlodosis of the lower spine. She was very prone to respiratory infections and also had a history of ovarian cancer.

With the announcement of the Facility Initiative, Margaret’s family objected to the decision. They repeatedly sent letters to her facility’s administrator denying consent for Margaret to move to a community placement or visit potential new homes. They were understandably worried that a community placement could not provide the level of specialized support she needed.

Through the PCP process however, her family began to see the individualized supports and considerations that were the focus of the plan and ultimately, became a part of it. Margaret’s plan highlighted her relationship with her sister, who had lived in another institution for most of her life, too, and who had visited Margaret at her facility throughout the years. Although she could not directly voice this wish, based on their interactions, it was perceived that Margaret would like to live with her sister. After her family's initial reluctance, Margaret ended up being one of the first residents to move to the community under the Facility Initiative.

She now lives with her sister in their own modern and beautiful home, with live-in support provided by a local government-funded community agency. As part of the PCP process, a professional facilitator made arrangements with medical and other service providers in her community before Margaret left the facility. As a result, the transition was smooth, and there was no period of an absence of services. Margaret enjoys cooking classes, going out for karaoke, doing daily errands like grocery shopping, getting her hair styled, and hosting holiday celebrations with friends she’s made since moving to her community.

The final document in Margaret’s transition file, written by her transition planner read, “Margaret moved into her new home today. Paperwork was signed and hugs all around. Margaret was adamant that she was staying there."

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Not every transition looked like Margaret's. The Director of one of the Community Living organization once told me in an interview, "we cannot accept that life outside on an institution is always better." As we look back at the Facility Initiative and work toward Texas' own plan for the State Supported Living Centers, we must be aware of downfalls and situations that did not work in Ontario, and learn from them.

About Chrystal

Chrystal is the Clinical Services Supervisor at the Burkhart Center for Autism Education and Research at Texas Tech University. She holds a Masters Degree in Applied Disability Studies with a specialization in Applied Behaviour Analysis, is a Board Certified Behaviour Analyst, and is currently a doctoral candidate at the Burkhart Center in her last semester of studies. Since joining the Burkhart Center in 2011, she has lead the development of outpatient services including the Behaviour Support Clinic and Intensive Behavioural Intervention clinic. Chrystal has research and clinical experience within institutional settings as well as evaluating the process of their closure. Her other areas of research and practice include training teachers and therapists in behavior analysis, program evaluation, early intervention, behaviour assessments, and the use of psychotropic medication in ASD.