A recent article from ICES and the Centre for Addiction and Mental Health (CAMH) reported that people with developmental disabilities make up 22% of the 1,466 people who have spent more than a year in a non-forensic psychiatric inpatient bed in Ontario, despite accounting for less than 3% of the population. The article’s authors note that this is a problem caused in part by a shortage of appropriate community-based settings into which people can transition from health and mental health facilities.
In response to this kind of data, people often make recommendations for increasingly segregated supports – more group homes, for example, or mental health units only for people with the label of developmental disability. Notably, the CAMH report’s recommendations do not go down this road.
The authors make the case that all health, mental health, and community support services should be able to provide appropriate care for all people, including people with developmental disabilities. While this may include hiring staff with specialized expertise, the emphasis is on increasing system capacity and responsiveness so that one system can serve all people. Two key elements of this approach are (a) increasing the knowledge and capability of all staff, and (b) designing care environments that account for neurodiversity.
The CAMH study found that people who have developmental disabilities are more likely to be restrained and placed in isolation during psychiatric inpatient stays. Similarly, Community Living Ontario’s Crisis in the Classroom report shows that students who have developmental disabilities are at high risk of being physically restrained and placed in isolation rooms while in school. As with health care facilities, schools have simply not been designed to account for neurodiversity. They are too loud, too bright, too controlling, and staffed by too many people with little understanding of disability. This has led many parents to move their children from regular classrooms to segregated settings.
We can apply a similar lens to housing. There are about 18,000 people living in provincially-funded developmental service housing spaces in Ontario. These folks live in a mix of small group homes, individual apartments, with host families, and in a few larger facilities. More than 28,000 people are on a waiting list for a funded space. The model relies on specialized organizations staffed by people with specialized knowledge, in part because the broader home and community care sector is unprepared to meet the needs of people with more complex housing support needs.
Several decades of research (including a recent report by the Ontario government) has shown that we could support more people to access housing if developmental service agencies sold a good portion of their group homes and used the proceeds to support people to move into typical housing in the community. Further, the people making that move would be happier and have a higher quality of life.
The belief that we need segregated systems for people labelled with developmental disability is an artifact of an earlier time that still exerts a huge influence on current practice in health care, education, housing, and beyond. And because there are so many barriers to moving away from this approach, we see old models creeping back into play – models that pull dozens or even hundreds of labelled people together under one roof. In which case ‘they’ become the responsibility of people with specialized knowledge, and thus remain largely invisible to most.
Specialized models of support that segregate people based on a label fail in many ways. They are more expensive. They produce worse health outcomes and a lower quality of life. They are more prone to neglect and abuse.
Segregated models and specialized systems have contributed to the reality we face today. People with the label of developmental disability are more likely to be abused and trafficked; they are highly likely to be overmedicated and regularly sedated; they experience poverty at overwhelming rates. Underlying all of this is pervasive stigma and devaluation.
In 2001, sociologists Bruce Link and Jo Phelan wrote that “people are stigmatized when the fact that they are labeled, set apart, and linked to undesirable characteristics leads them to experience status loss and discrimination.” Is there any better description of the typical experience of people labelled with developmental disability?
Moving away from specialized systems won’t end labelling and stigmatization, but it is a necessary step in that process. The more labelled people can access typical services in the community, the more they will be known simply as people, and the more stigma will be reduced. We have an opportunity, and arguably a duty, to jumpstart this process within developmental services by continuing the progression away from group living, group programs, and even our understanding of ‘people with developmental disabilities’ as a group.
