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“Institutions deny you a life — they take away your ability to know and connect with your family and your community ––they deny you the opportunity for friendship. Institutions take away the ability to have responsibility for your own actions. An institution is a place where people are not permitted to dream”

— Patrick Worth, founding chair, joint task force on deinstitutionalization.

 

“Home is:

Where I am safe

Where I am happy

Where I can welcome friends and family

Where I have some control over what and when I do things

…

Where I have my things around me

Somewhere that does not feel like an institution.

…

Where people listen to me

A busy place where things are going on.”

— Envisioning Home: Participatory Action Research with George Pearson Residents and Community and Mentor Association & Pearson Residents Council, 2008.

In part one, I discussed how the COVID-19 crisis has brought to the surface the fact that warehousing people in facilities using the institutional model is not the answer now, nor was it ever. Other countries manage to provide supports and care in community without congregating people in institutions. 

Denmark has a home-based care policy priority for seniors, and has transformed its senior care delivery model into a community-based model — and has not invested in new congregate facilities since 1987. Reducing the number of nursing homes was matched with a steady increase in the number of home nurses. The decline in long-term congregative facilities for seniors in Denmark is evident in the fact that as of April 24, 2020 only 33 per cent of confirmed COVID-19 deaths were connected to these facilities, while in Canada, 62 per cent of all confirmed COVID-19 deaths are connected to such facilities.

One of the main arguments used against the shift from institutional care to community-living care is the belief that it is more expensive to fund people living and aging in place in their homes and communities. The opposite is actually true. A 2010 Ontario study examining the costs involved with keeping seniors at home versus long-term congregated facilities made the following conclusion:

“The results of the project revealed clear value creation not only in direct, quantifiable systemic value, but also in economic terms and human value — areas often considered ‘intangible’ and difficult to measure, but which offer significant financial and societal reward. Key findings were that from a system value perspective, home and  community care provides a flexible option that can integrate not only paid staff but also volunteers and family caregivers, while requiring low overhead and infrastructure investment.”

In the debate regarding the costs of institutions versus community living, it is generally determined by comparing actual costs, including rent, food, administrative and staff wages. Left out of these equations are the “intangible” costs of institutional life such as losing one’s autonomy and rights; being subjected to abuse, neglect, isolation from friends and family; not living in a home; and having no choice over how, where and with whom you live. 

In 2006, the United Nations created the first international human rights treaty of the 21st century. The Convention on the Rights of Persons with Disabilities (UNCRPD) is designed to protect the rights and dignity of people with disabilities, including people with intellectual disabilities. 

Article 19 of the convention is about the rights of people with disabilities to live independently, and to be fully included in the community, “with choices equal to others.” It states that people with disabilities have the right to choose where and with whom they live, and cannot be forced to live in anyone housing arrangement. People with disabilities have the right to receive the supports and services they require to “support living and inclusion in the community, and to prevent isolation or segregation from the community.” Canada ratified the convention in 2010, and in December 2018 announced its accession to the convention’s Optional Protocol — its commitment to upholding the rights of people with disabilities.

Despite the evidence regarding costs and Canada’s commitment to the UN Convention, people with disabilities are still routinely forced into congregative long-term care facilities. However, regardless of the type of disability, people with disabilities can live independently with the supports they need in the community. One of the key strategies to implementing successful community-living arrangements is to make sure funding is separated from housing. Australia, England, New Zealand, Scandinavia, the United States and Canada have started programs where the funds go directly to the person with the disability, so they can purchase the supports they need. 

One such example can be seen in British Columbia. The Choice in Supports for Independent Living (CSIL) funding model gives funds directly to the client, or the client’s representatives if the person needs additional supportive decision-making. CSIL clients have full control over who is hired and what services are required and when they are required. This is about giving the person autonomy to make their own choices or with collaboration of family or micro-boards. However, the person’s local health authority is still the determining factor as to whether one qualifies for CSIL and the amount of funds the person requires. There are more than 600,000 people with disabilities living in B.C., while only a small number receive this type of funding.

Paul Caune’s story

Paul Caune is 51-years-old, and lives in Vancouver. He describes himself as being a “middle class son of the suburbs.” Caune is also executive director of Civil Rights Now, a disability advocacy organization that has been instrumental in advancing disability rights in B.C. He has served on the person’s with disabilities advisory committee for the City of Vancouver, was executive director for the 2013 documentary, Hope is Not a Plan, and the recipient of a Queen Elizabeth Diamond Jubilee Medal, awarded to “honour significant contributions and achievements by Canadians.”

Caune was born with muscular dystrophy. Since his late 20s his ability to use his limbs has declined, and he now navigates the physical world in an electric wheelchair. When Caune was 38, he was hospitalized and had to have a tracheotomy. He now breathes through a tube in his throat that is attached to a ventilator machine. When he is in his electric wheelchair, the battery-run ventilator is attached to the back of his chair, hidden from view. Having a disability isn’t what makes Caune stand out. His uniqueness lies in the fact that he has dedicated the past 20 years to fighting for the rights of people with disabilities. 

Central to Caune’s battle has been the right to live in community and to end the warehousing of people with disabilities in long-term congregative institutions. This activism emerged when he became ventilator dependent and was subsequently forced by his local health authority to live in an institution, the George Pearson Centre (GPC) in Vancouver. GPC was opened in 1952 as a hospital for patients with tuberculosis, and since that time has become an infamous institution, warehousing at its peak up to 300 adults with disabilities. Currently, there are 114 residents. 

Caune’s experiences at Pearson were traumatic. For two years he lived in an environment of fear and abuse. He and the other residents lost their autonomy, lacked basic rights, were forced to abide by curfews, were confined to their beds on scheduled bowel movement days, were only allowed one transfer in or out of bed per day, and were forced to take anti-psychotic drugs to keep them placid. It is the institutional model that is the problem, and Caune’s experiences are consistent with the current and historical examples discussed in the first article.

The minutes from the September 10, 2019 meeting of the residents council for the George Pearson Centre give us a further example of the indignity of living in a congregative institution. The second item of business from the manager’s report is a notice regarding Do Not Resuscitate Orders (DNRs). DNR tags have been “affixed” to the back of the wheelchairs of those residents who agreed to a Do Not Resuscitate Order. DNRs are personal health-care decisions. Having them located on the back of your wheelchair means that everyone you come into contact with, including strangers, will know one of the most personal decisions you have made. Institutional life strips you of your dignity, your rights and your autonomy. You are reduced to a DNR tag on the back of a wheelchair.   

Our society frames disability as a fate worse than death. But it isn’t. Central to the legacy and continuance of warehousing seniors and people with disabilities in congregative long-term care institutions is the fact that our society is premised on the modern idea of independence as key to what makes us valuable members of society. To be independent is a characteristic of being an adult. If you are an adult and depend on the support of others, then you have failed, you are somehow less than human and don’t deserve the same rights on equal basis with others.  

This has become even more evident during the COVID-19 crisis not only with the fatalities tied to congregative facilities for seniors and people with disabilities, but also with the experiences people with disabilities are having within the health-care system. Despite testing negative to COVID-19, Ariis Knight, a 40-year-old B.C. woman with cerebral palsy, was denied having a support person with her when she was taken to hospital with breathing difficulties and flu-like symptoms. Knight was non-verbal but was able to communicate with her support staff. Without having a support person by her side, Knight was unable to communicate. She died alone in hospital with no one understanding her.  

Independence is however, temporary. As disability scholar Rosemarie Garland-Thomson argues, we “move in and out of disability in our lifetimes, whether we do so through illness, an injury or through the process of aging.” Disability is just another part of being human.  

After two years of unrelenting self-advocacy, Caune managed to escape GPC. Today, Caune’s daily life is not managed by a local health authority. He manages his own life. Caune has complex needs and yet he is living in his community of choice, and receives all the daily supports he needs. He lives in a one bedroom plus den and balcony fully accessible apartment in Vancouver, owned and operated by the Vancouver Resource Society. The inclusive building consists of 50 units: eight units that are rent subsidized, seven units for people with disabilities, one unit for a 24/7 nurse and 34 market-rate units. It is located in a family-friendly neighbourhood, close to public transit and amenities. 

Another example of community living coming out of B.C. is the Chorus inclusive housing project. This project created 71 new homes, including 20 homes for people with intellectual and developmental disabilities to live independently with the supports they need. All rent is 10-15 per cent below market, plus further subsidy for tenants with intellectual and developmental disabilities who are supported by Semiahmoo House Society.

These examples are not presented as perfect, nor are they the only examples. They are presented as illustrations of what is possible. Everyone, regardless of age, ability or disability, has the right to live in community receiving the varying levels of supports they might need. After 150 years, it is time for the institutional model to end. It is a draconian method of warehousing people and has no place in Canada. 

Fiona Whittington-Walsh, PhD, teaches at Kwantlen Polytechnic University in British Columbia. She is president of the board of directors for Inclusion BC.

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