A Future with Rights -- The Right Future

By Marie White

"We affirm that all Canadians have the right to opportunities to participate in community life." Thus begins a "Declaration of Partnership" in which, on April 2, 1993, the Government of Canada, the Government of Newfoundland and Labrador, the Canadian Association for Community Living (CACL) and the Newfoundland Association for Community Living (NACL) entered into a joint agreement on a demonstration project entitled "A Future With Rights -- the Right Future."

This four-year project will enable 126 persons with intellectual disabilities, now living in the Waterford Hospital in St. John’s, the opportunity to live independently in the community. Unlike traditional deinstitutionalization efforts, however, the Right Future project will not only facilitate the physical move from the institution to the community, but will also address a method of supporting people to be members of their communities, which will maximize their quality of life.

"Right Future marked the culmination of years of perseverance and advocacy by CACL who, in the early ’70s, began challenging institutions as the appropriate keystone of service for people with a mental handicap," explains Diane Richler, CACL’s executive vice-president, "Yet it was not until the ’80s that there started to be a strong sense that not only were institutions morally wrong, but they contravened the Charter of Rights and Freedoms by incarcerating people only on the basis of a disability and lack of appropriate community supports to address the needs.

"It is very frustrating to realize how inaccurate people’s perceptions are about institutions. In an attempt to eradicate the myths that institutions provide a range of specialized supports and services and therefore are the ‘best’ thing for people, one of the strategies we used during our lobbying efforts was to arrange for officials to visit institutions.

"One federal official was given a tour of an institution by a person who had lived there for 18 years. Another was surprised to see that one resident’s recreation for the week was two trips to the canteen. This process has already had a profound impact on sensitizing many people to the realities of institutional living."

CACL’s first official recommendation regarding deinstitutionalization and the need to have funds to support the costs of transition from an institutional system to a community-based one was included in "Obstacles," a 1982 report by the Parliamentary Committee on Disability.

"In 1984, we discussed deinstitutionalization with then-Minister of Health Jake Epp," said Richler. "But it was in 1986-87 that CACL started to work much more proactively with officials in the Department of Health and Welfare. We needed to determine what would be a feasible plan for the federal government to take leadership in assisting provincial governments to transform their systems."

Richler has high praise for the countless CACL members who took action nationwide to convince the federal government that as people move out of institutions, it is necessary to provide transitional funding to support two systems. She also cites the vision of CACL’s past president Jo Dickey and the tenacity of past president Gordon Porter as integral to setting the stage for this project. As for her own involvement, Richler simply states, "I was wherever the meetings were."

Peter Lawless, Senior Policy Advisor for the Disabled Person’s Unit, Department of Health and Welfare, was a key facilitator during CACL’s lobby efforts which he describes as sophisticated and intense. "What impresses me is their vision and their commitment to their vision. CACL needed to get sustained dialogue with people in the decision-making area, and so they began extensive lobbying, both through this department and through other ministries."

In 1986, CACL adopted their "Community Living 2000." This outlines a vision in which, by the end of the century, the lives of people with intellectual disabilities will be characterized by citizenship, membership and self-determination. A priority of Community Living 2000 is the elimination of institutions.

Deinstitutionalization was first seriously addressed by the federal government in a speech made by the Honourable Ray Hnatyshyn on behalf of the Honourable Jake Epp, to CACL’s 1988 Annual Meeting. Mr. Hnatyshyn affirmed the federal government’s endorsement of deinstitutionalization, their willingness to discuss funding initiatives with provinces to facilitate this process, and their willingness to use Community Living 2000 to focus the issue.

"Immediately after this announcement, CACL began meeting with the premiers of the smaller provinces," said Richler. "We concentrated our efforts in provinces where the number of individuals living in institutions could be supported to move within a relatively short time frame and where we would have the benefit of a ’demonstration project.’ This project had to show that community living was possible for everybody and it would help identify for all jurisdictions what the implications would be for systems, communities and individuals."

New Brunswick was the first province to formally approach the federal government in 1989 with a plan -- "Exodus" -- for deinstitutionalization. That same year, NACL and CACL met with Newfoundland’s premier Clyde Wells to discuss deinstitutionalization in that province. In the ensuing years, they worked with the Newfoundland government to develop a proposal it could afford.

As CACL continued discussions with provinces that would be interested and willing to take on a demonstration project, there arose the question of freeing up the funds from Ottawa.

"The National Strategy for the Integration of Persons with Disabilities, announced in September 1991 by then-Prime Minister Brian Mulroney, presented a window which eventually became a mechanism where $15 million was made available," said Richler. "This was based on what it would cost for their portion of the New Brunswick appeal."

Three months after the Strategy was announced, however, the government of New Brunswick indicated that, largely due to cost concerns, it would not be proceeding with Exodus. The $15 million targeted for it in the original Strategy was quickly reprofiled as a deinstitutionalization initiative. CACL, then, concentrated its efforts in Newfoundland, where the Right Future proposal -- a joint effort by NACL and the Newfoundland government -- had already been drafted.

Throughout 1992, there were numerous consultations among the four partners. Characterized by collaboration and creativity, these discussions culminated in the April 2, 1993 signing of the "Declaration of Partnership." Described by all partners as historical, it expresses their common goals and the shared ownership of the project.

The "Right Future" is a model of service delivery which is different from past models in which people were moved out of institutions into group homes and traditional training programs.

"The most crucial element of this project is the empowerment of persons with disabilities and their families as the deinstitutionalization occurs," said Marg Lockyer, chair of the committee which drafted the Right Future proposal and NACL’s Chairperson of Residential Services. "Individuals have a choice of whether or not they wish to leave the Waterford, and there will be absolutely no group homes for those who choose to leave."

Newfoundland is the only province in Canada that has made a commitment to find alternatives to group homes and to support people as individuals. This is because of an obvious deep commitment to community living by people within Newfoundland’s bureaucracy.

"We took a holistic approach, looking at all aspects -- social, recreational, vocational, and so on -- of an individual’s life," said Lockyer. "We didn’t just want the person to be living in a different place. We wanted to ensure that he or she would have a good quality of life as well."

Funding for this project is twofold. As the largest single initiative within the National Strategy, $10 million has been allocated to cover the four-year transitional costs for community support and the temporary overlap of institutional and community programs.

In addition, during the project, costs of approximately $14 million for activities which relate to the development of community-based alternatives to institutional care for persons with intellectual disabilities will be shared equally under provision of two existing cost-shared programs: Canada Assistance Plan (CAP) and the Vocational Rehabilitation and Disabled Persons (VRDP) Agreement. At the end of the Right Future project these programs, in line with current cost-sharing principles and agreements, will maintain the community supports which will have been established.

Under this special funding agreement, Newfoundland’s Department of Social Services (DOSS) will be able to provide substantial staffing support (social workers and behaviour management specialists) who will be responsible for establishing responsive community services to enable residents of the Waterford to move out into the community.

Also included in this funding package is $1.5 million for NACL. This will be used to administer the project and hire staff: an Executive Director, Provincial Co-ordinator of Family Support, and four Individual/Family Support Consultants. These regional consultants, together with DOSS staff, will be instrumental in establishing "Community Support Teams" which will bring together key players in the community to discuss economic/ social developments required to make their communities inclusive.

Eric Hutchings, past president of NACL, sees community involvement as the essential element in the success of this project. "In many instances, people living in the Waterford have been away from the community for 30 or 40 years, and so have lost the social networks on which so many of us rely for support. NACL’s efforts will be primarily aimed at developing community linkages and ensuring that people who presently live in the hospital will be at the centre of the planning process."

There is a Preplanning Team which will discuss issues which the residents feel are important for them as they prepare to move out into the community, and Individual Support Teams in the community which will address these issues. In each team, the emphasis is on the individual and his or her involvement in decision-making.

"For many of the residents leaving the Waterford, this will be the first time they have an opportunity to make choices and decisions on issues which affect their lives," said Michelle Neary, NACL’s Executive Director.Ê"It is imperative, therefore, that these residents are informed and supported in their decision-making."

One initiative designed to assist residents in strengthening decision-making powers weakened by years of institutional living is a series of Evening Talks. Every second Wednesday, residents of the Waterford are involved in informal discussions on topics which they consider important. Not surprisingly, one of the questions which has come up for discussion is: "How do we get out of here?"

People First will also play a major role in enabling residents who live at the hospital to be self advocates -- a concept foreign to people institutionalized for years. Mary Head, Newfoundland’s co-ordinator of People First, has already visited the hospital to talk to people about their rights and choices.

Two of the Waterford residents who have chosen to move out into the community are 36-year-old Edgar, who entered the hospital in 1978, and 42-year-old Doug, who entered in 1975.

When asked if he wanted to leave the Waterford, Doug looked at me and said, "Of course. You know I do." Edgar simply said, "Edgar leave and never look back."

Both men cite the need for privacy as a major reason for wanting to leave the Waterford. In addition, Doug wants to be able to make tea whenever he chooses. Edgar wants to fish, as it is something he says he has not done since he was a young boy -- a sad statement of the reality of lost years.

"For the residents of the Waterford, the Right Future project is a chance to start their lives; the contrast of the freedoms and opportunities compared to what they have now is just indescribable," said Richler. "I have no question that life will be better for the people leaving, for their families from whom they have been cut off for all these years, and for all the people in the community who did not have a chance to know them before."

This sentiment was expressed by Edgar as he was leaving my office. He looked at me, pointed to himself and said, "Edgar is a good man."

Yes, Edgar, I know you are.

(Marie White is a freelance writer living in Newfoundland.)


DIANE RICHLER, EXECUTIVE VICE-PRESIDENT OF THE CANADIAN ASSOCIATION FOR COMMUNITY LIVING, SHARED WITH ABILITIES HER PERSPECTIVE ON THE PROCESS LEADING TO "A FUTURE WITH RIGHTS -- THE RIGHT FUTURE."

When our association adopted its new name (the Canadian Association for Community Living) in 1985 and a plan of action towards the year 2000, we did a count of the number of people labelled "mentally handicapped" living in institutions in Canada. There were 30,000 people in large provincial institutions and an equal number in nursing homes, psychiatric hospitals, and other similar facilities across the country. It was my perception that, except for the people who knew someone living in those institutions, it was really an unknown tragedy in Canada -- and probably still is.
Some of the institutions had been built in the 1800s. Their role had been to protect society from certain people and to keep these people looked after. Eventually a new philosophy considered such places "active training centres" and many underwent name changes. In the 1970s, some were actually transferred from departments of health to departments of community services, with an orientation to a more humanistic rehabilitation approach. But the reality always was that there was no reason for people to be there. The only reason they were there was a lack of supports in the community. But because so many people, particularly those with more severe challenges in their lives, ended up in institutions, people in the community never came into contact with anyone with more significant intellectual disabilities, related health needs or the behaviour challenges that arise from having no communication.

The context is really important because CACL, from the early 1970s, had been trying to counter the impression that institutions were good for people. But even when the association adopted the very specific goal that no one in Canada should be living in an institution by 1992 because they had been labelled as "mentally handicapped," this was considered a very radical and even inappropriate objective. People had a misconception that there was all this wonderful therapy and care and attention going on within the walls. And so there was a double tragedy, because there were the people living in the institutions, who were trapped there, and there were also the resources that those institutions were just sucking like a magnet, that were then unavailable for other community services.

I think that one of the most important elements of our deinstitutionalization strategy has been to get more outsiders visiting institutions to see what they are like. We did that with politicians, with members of politicians’ staffs, with our own members. It’s amazing how many people have never been inside one of those places. Personally, I make it a point to visit regularly people who are still living in institutions, so that I can’t forget what work still remains to be done.

In August of 1991, we were at a point where there was a good chance that we would come to an agreement, a four-party agreement, between the two levels of the association and the two governments. But there were many political and practical obstacles still to be overcome. A group consisting of representatives of the provincial association, federal officials and myself went to visit some people in an institution, to see what life was really like there.

Immediately everything that we had been talking about on a philosophical and theoretical level became linked to real people who had been living inside those walls for 30 to 40 years. The staff of the institution was very open and willing to talk to us and let us see whatever we wanted.

Most striking to me was one individual who decided that I might be his way out of there. He took me by the hand, took me to the door of his ward, which was locked, pointed to it and said, "key," and then, "car." Those were the only words that I could clearly understand. I told him that I was there because I was trying to get the key, but I wanted to see the rest of the institution, so I encouraged him to walk down to the other end of the ward with me. We walked together, he holding my arm, and halfway down the ward he turned me around and took me back to the door and said his two words again, "key" and "car." He must have done it at least three times. There was no question that he knew that someone needed to unlock that door for him to get out, and he wanted to get away. We found out subsequently that the people on that ward had an opportunity to get out once a week to go on a bus ride around town, but they were not allowed to get off the bus. Aside from that, there was a schedule of activities posted on the bulletin board. One of the people from Ottawa noticed that one of the men, twice a week, was allowed to go to canteen, and that was pretty much the program.

On a subsequent ward we had another interesting experience. One of the men in our party was a federal civil servant who had just been transferred back from Ottawa to Newfoundland. Twenty-five years earlier, as a student, he had worked in the institution. It was somewhat disconcerting to see how many people he recognized. There was one particular woman we met who was tied into a chair. The man remembered the day she arrived and said that when she came, none of the staff knew what to do with her. From looking around that day, it still looked like no one knew what to do with her.

I’ve since found out that most of the 126 people who will be leaving the Waterford institution through this project have been there for 30 to 40 years. Cumulatively, that’s a lot of wasted years.

On the other hand, though, there was an attempt to try to understand the process and what would be happening for people, once they left the Waterford. We decided to go on a tour of Stephenville, Newfoundland, a community that has been radically transformed by including in it many people who used to live in institutions in Newfoundland which have since been closed, and other people who were likely candidates for institutions. And in meeting those people, it was really easy to see that any one of them could have been that young man in the institution who was trying to get out, and similarly he could have been any one of them, living in his own apartment, holding down a job or running a business, a part of the general life of the community.

I think the ultimate commitment made by people within the association and within the two levels of government to make the project work was based on a recognition that profound changes were possible in the lives of some individuals. That was what made it possible to get through some otherwise very tricky negotiations. I think the fact that the federal government made money available and the fact that the provincial government in Newfoundland was so creative in this venture was because of a real recognition of what it meant to individuals, both because of the travesty within the institution, as well as the potential that exists in communities across the province to support people in new and different ways and to be improved by becoming totally inclusive.