Five Ideas About De-congregation of Day Supports in Developmental Services
Many Community Living organizations across Ontario have ended the practice of hosting centralized day supports for people labelled as having a developmental disability. People, families, and sector leaders have been at the forefront of an evolution to support people to create typical lives in their communities. The goal is to avoid streaming people into segregated programs based on the label of developmental disability. Community Living Ontario is a strong proponent of this evolution, and we are actively working to support our member organizations to de-congregate day supports.
As we move forward with this work, it is important to emphasize that support organizations must meet people where they are at. We must work together with each person to create options that are better than what we are asking them to leave behind. Active listening, collaboration and trust are key ingredients in this transition.
Here are five ideas to assist service providers and other stakeholders in understanding this evolution.
1. Day supports have already been affected by the COVID-19 pandemic
The restrictions put in place in response to COVID-19 have resulted in the closure of congregated day programs around the world. Current provincial government guidance in Ontario restricts congregated day activities to a maximum of 10 people (including staff). In areas under enhanced precautions, day programs are limited to a maximum of 5 people.
COVID-19 restrictions have brought intense focus to the downsides and limitations of congregating people based on a label. In response, many organizations across the province are considering or actively engaged in permanently closing congregated day programs and moving to individualized and person-based supports.
2. It works: Organizations around the world have successfully de-congregated day supports
The evolution away from congregated day programs is not a new development. Some of Community Living Ontario’s own members have not operated such programs for years. While this transition was not easy, they have shown that it is feasible and beneficial.
Success has been proven beyond Ontario, with organizations around the world making similar strides. Michael Kendrick, a Massachusetts-based consultant, has assisted many agencies to create individualized and person-centred service plans for the people they serve. He has published a detailed overview of key learnings from this work that may be helpful to those currently going through the process.
An important finding of Kendrick’s work is that agencies have been “able to serve people that were considered by most people to be very challenging to serve on an ongoing basis… most of these people were eventually doing much better in individualized arrangements than they had been doing in conventional ones.”
3. Closing sheltered workshops and de-congregating day supports go hand-in-hand
In 2018, the former provincial Liberal government passed Bill 148. This legislation ended the practice of paying sub-minimum wage (often just a few dollars an hour) to people employed in sheltered workshops. At one time in our province, sheltered workshops were very common in day programs for people labelled as having a developmental disability. Though these workshops were often presented as providing a bridge to real work for real pay, people tended to stay in them for years and even decades.
The current Conservative government, unfortunately, reversed many of the provisions of Bill 148, including the planned closure of all sheltered workshops. While many agencies closed their workshops in response to Bill 148, an unknown number continue to operate in the province.
4. Real work for real pay is achievable
About 25% of people labelled as having a developmental disability in Canada are employed in the regular workforce, earning at least minimum wage. In the United States, several jurisdictions have shown that even better employment outcomes are possible. For example, Vermont, New Hampshire, Maine and Rhode Island have employment rates ranging from 30-40%, and none of these states allow sheltered workshops.
In 2013, British Columbia launched an initiative to increase employment among people labelled as having a developmental disability, with the goal of assisting 1,200 people to enter the labour force. Over the course of two years, the proportion of people assisted by Community Living BC reporting employment income grew from 15% to 23%; 1,400 people supported by the organization succeeded in finding employment during this period.
Low rates of employment are to a great extent the result of low expectations, stereotypes and outright discrimination against people with disabilities. The segregation of people who are labelled – in special education, in congregated housing, and in congregated day programs – is a major contributor to this reality.
5. Individualized day supports are a necessary continuation of deinstitutionalization
The closure of congregated day programs can be stressful for participants and their families. It is very common for organizations to face resistance and concern from community stakeholders. However, the status quo – where people labelled as having a developmental disability overwhelmingly live with low incomes, low expectations, and low quality of life – is not acceptable. It is important for all stakeholders to look to the experiences and outcomes of communities who have successfully made the transition away from congregated programs, including the trailblazers who did so as far back as the 1980s.
The movement away from congregated day programs is being driven by individual advocates and non-profit leaders whose values have brought them to question the status quo in developmental services. This evolution is supported by People First of Canada, Community Living Ontario, Inclusion Canada, the US-based National Leadership Institute on Developmental Disabilities, and many other organizations. Our shared history of deinstitutionalization is not yet finished, and the way our sector supports people to realize their ambitions during the day is a key piece of this history.
Shawn Pegg, Director of Social Policy and Strategic Initiatives