Alan McWhorter

541 Days Road, Kingston, ON K7M3R8, CA

The Reclamation Project: The Value of Living Life at the Helm

Stories of life in an institution and the voices that closed them

Alan McWhorter

I graduated with a BA from Birmingham-Southern College in Alabama. While a student of Abnormal Psychology, I witnessed the shocking conditions in Partlow State School and Hospital, an institution in Alabama, and said, “whatever I do, do not work in an institution!” (The Partlow institution was the first one issued with a closure order by a US federal court a few years later.)

I immigrated to Canada at the age of 22. As a new immigrant in need of a job, I applied for a position with the Toronto Association’s Harold Lawson Residence and School in Scarborough. I was hired on the spot to work in the residence. It was a small institution housing 50 kids, 25% of whom were wards of CAS. With the amendments to the Ontario Education Act in 1969 the school was transferred to the Board of Education. The job required a 2-year commitment to participate in an in-service training program. I was disappointed to realize that the children who were wards of CAS all went to Orillia (Huronia) when they reached the age 16.

In 1972 I became the director of an adult residence with the Toronto Association. There were 24 adults housed in a large hilltop estate. Their parents were members of the Toronto Association who had worked to start the residence as an alternative to sending their children to institutions. A policy of the Association assured that 25% of the spaces were allocated to people returning from institutions.

I was promoted in 1974 to Director of Residential Services for the Toronto Association. I rented houses to open group homes quickly. In 1975 the Association opened six homes in rented houses. The main objective was to keep people out of institutions or bring them back if they were already in one.

In the 1960s, the Canadian Association conducted a fund-raising crusade that raised over $16Million which was used to fund 14 projects across Canada. Seven were university affiliated and seven piloted new forms of community-based services. The National Institute for Mental Retardation (NIMR) at York University was one of those projects. CAMR’s Executive Vice President, G. Allan Roeher, recruited Wolf Wolfensberger from Nebraska to head NIMR and develop a battery of training for large numbers of young people expected to be needed to staff community services replacing institutions. Training was wide-ranging and included PASS/PASSING training courses on human services program evaluation. NIMR obtained a federal grant of $10Million over 10 years for training people across the country for work in community services.

In the 1970s the Canadian Association launched another Canada-wide fund-raising drive to pilot Comprehensive Community-based Service Systems (COMSERV) in each of Canada’s ten provinces. The Canadian Association would match provincial association funds up to a maximum for each project. The pilot projects were not focused on service delivery, which is a provincial government area of responsibility. The money was for planning, training, and governance. In Ontario, I was the OAMR staff lead for this, and I recruited Malcolm Jeffreys to be a consultant to the project. There were six proposals for regional projects in Ontario, one of which was in Kingston and the Thousand Islands Region. Malcolm and I recruited Doug Cartan to work on that project.

The combination of rapidly expanding community services and Canada-wide training made a huge impact in the 70’s and brought a sense of mission. Young professionals were inspired. The growth was often described by Allan Roeher as “a zealous partnership of parents and professionals”. Young idealistic participants in the training, often delivered personally by Dr. Wolf Wolfensberger, had a great sense of mission but still limited understanding and depth of experience.

The Canadian Association was also active on other fronts. For example, it supported a young woman in PEI to fight her mother’s attempt to have her sterilized against her will. The Supreme Court ruled on involuntary sterilization. They also understood that they had to work with the government, and changes were brought about through political as well as judicial channels.

Locally there were many challenges in bringing about system change. There were a lot of movers in the parents’ movement of that time who brought about a very broadly-based coalition of family and young professionals who wanted to close the institutions. The Ontario Association at its Annual Meeting of 1974 made a landmark decision. They would shift from promoting government development of smaller, better institutions to categorically opposing the institutionalization of people with intellectual disability. Up to that point, the Association had supported investment in making institutions better, but had been continually disappointed that the quality of life inside them was not improving. I, as an Association employee, observed the membership as divided between parents who had given up on reforming institutions and wanted community alternatives for everyone versus parents who saw the institution as necessary and desperately wanted it to be improved. All the government institutions had parents’ auxiliary groups that raised funds to make improvements in institutions. The Association in the late 1970s gave up on trying to make institutions good and stopped all institutional support.

Margo Scott, President of the Ontario Association, presided over the heated debate that led to a pivotal decision to adopt as policy the goal of putting an end to institutionalization. Parents auxiliary groups were upset and they left the OAMR, and some became bitter adversaries.

The Peterson government decided to phase out institutions, and in 1987 Social Services Minister John Sweeney announced at the OAMR conference a 25-year time line to achieve deinstitutionalization in Ontario. Throughout this time all three political parties were involved. Facilities were downsized by about 200 people per year. The NDP government under Bob Rae, swayed by the Institution workers unions, put a moratorium on people leaving institutions but they quickly reversed it in response to vehement protest from parents. OPSEU was really the only organized opposition because their members’ jobs were threatened and people with the institutional mind-set weren’t being hired by community organizations.

For most institutional employees it was not a smooth transition. An exception was Prince Edward Heights where the leadership had proactively converted resources to create a community agency running group homes. Even there, community service advocates worried about the cultural transfer of attitudes. Unconsciously held attitudes can sabotage even well-meaning efforts when it affects the human management model.

Organizations limit liability by taking more control of dependent people’s lives, and taking responsibility away from the person and family can evolve into perverse forms of control.

When the institutions were closing, families of people still in them felt betrayed by the government. They were afraid for the health and wellbeing of their family members. Peter Sproul and Xavier Noordermeer worked with a lot of families to plan for individuals’ new lives outside the institution. In the early days of the process, I and many others did work with families who wanted their family member to live in the community. In the later stages of the process, those whose families were supportive were out and those who were left inside had families who were fearful of the change.

Some challenges I saw were results of giving choice to people who were not prepared to make informed choices. There were also challenges of moving people around a lot which interfered with social engagement in the community – an experience similar to shunting people among facilities.

I only ever met one person who wanted to go back to living in an institution. He had grown up in Huronia, and as a young man he had the run of the place delivering mail to staff throughout the facility. He felt he had a valued role there, and he felt he did not have a meaningful role in Toronto. He eventually got his wish to return after he went to the Eaton’s store before it opened and stole the keys to all the cash registers. The police were called and he was sent back to Huronia.

The typical pattern was that after individuals were out, they felt bitter about what had happened to them and that part of their lives spent in the institution. Most looked back on their experience inside as a dark and miserable time in their lives.

Everything could have been done better. One challenge was the lack of any clear, workable interface among ministries – Child and Youth, Social Services, Education, and Health. For example, school boards were directed to provide transition planning support for students with special needs beginning at age 14. Most boards essentially ignored that responsibility. An exception was the Limestone District School Board which assigned one person who was then cost-shared with the Catholic School Board. For years, that individual tried to facilitate transition planning for hundreds of children. She was able to achieve much more by working collaboratively with family support workers in community agencies throughout the district. Even with that, transition planning was mainly left to parents who had little information other than application forms for agencies.

For people leaving institutions, there should have been a plan for each individual person, reflecting their aspirations and what people close to them believed would be best for them. This was done better in the later stages as everyone involved gained experience.

For those agencies that were expected to receive people leaving institutions in the later stages, time was always short. There was a lot of haggling over real estate and group homes, and the homes were often hastily renovated existing buildings that were not designed for the needs of the people.

The system got better over time but there were always cross factors. There was no effective provincial level coordination or facilitation for this process. Virtually every building project associated with deinstitutionalization ran into obstacles. For example, three homes were built at the same time in Kingston for people leaving Prince Edward Heights by a deadline date. There was little time to get to know the people as individuals. With the help of professional consultants, the structures were designed for accessibility. When building permits and plans were all approved and the houses were well along in construction, the fire inspector decided on his own that all three houses would have to meet institutional building standards because the occupants would be people with disabilities. He issued extensive change orders at an advanced stage of construction, and this added 50% to the construction costs. As local executive directors shared their stories, it seemed the interpretation of the Kingston fire inspector was unique in Ontario.

There were no clear-cut answers, to the entire process, that would assure better outcomes in the future. Widely shared engagement of communities and citizens is essential to community support going into the future, but some guidelines for local officials would have been helpful.

Going forward, we need to advocate for people and we can’t do it well without knowing what they wish for, aspire to, and fear most. It is a human process. Loneliness is a major concern for people with intellectual disabilities, but loneliness cannot be overcome by arbitrarily throwing people together under a roof. Respect for people is the key. The rest will follow if respect is there, although nobody would say it is ever easy.