After COVID: Day services for persons who have an intellectual disability

The COVID-19 pandemic has brought harsh light to the risks faced by people who need support to meet basic needs and live safely. While public attention has focused largely on seniors living in long term care settings, people labelled as having an intellectual or developmental disability have also been disproportionately affected – as have the staff and volunteers who support them.

The pandemic has also shown the extent to which many people supported by Ontario’s developmental service (DS) system continue to lead institutional lives. Across North America, outbreaks of COVID-19 have been widespread in group living settings, with the troubling case of Participation House in Markham being just one example. The residents and staff who contracted COVID-19 in these settings – and those who died from it – are casualties of an overstressed system that continues to group people together on the basis of a label of intellectual disability.

 

The challenge of re-opening day services

As communities open up in this surreal time, day services for people labelled as having an intellectual disability present a complex challenge. Many sector leaders are asking themselves, “Can day services be reopened, and if so, how can this be done safely?” We believe the more appropriate and constructive question is, “How can we respond to a drastically changed situation in a way that best meets the needs of the people we serve?”

Developmental service agencies that operate day programs face the following challenges:

  • Risk that asymptomatic staff and participants will spread the COVID-19 virus in day service settings;
  • Risk that staff and participants will initiate legal action following infection in a day program;
  • Difficulties obtaining adequate insurance related to potential infection;
  • Increased costs for personal protective equipment (PPE) and sanitation;
  • Increased oversight of program staff to ensure infection prevention protocols are maintained;
  • Difficulties retaining quality staff in high stress/low pay positions;
  • A decline in demand for day services because of infection-related fears on the part of individuals and their families, as well as an inability to pay for services among a portion of recently unemployed parents;
  • A decline in the supply of day services due to the need for physical distancing, increased staff-to-participant ratios, higher need for behavioural supports, and potential exclusion of people with high behaviour-related needs.

Perhaps most importantly, many individuals and families who require assistance to stay physically and emotionally well during the day will be left without support unless the sector changes its approach.

 

From day services to individualized supports

Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD), ratified by Canada in 2010, directs us to ensure that “persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.”

Congregate day programs are a clear example of segregation from the broader community. In the wake of COVID-19, many organizations are actively considering or moving forward with individualized services. These respond directly to the personal interests of participants via engagement with non-DS sector recreation, voluntary, employment and other stakeholders.

Whereas safety and control have tended to guide day services, we now need to see the sector as a facilitator of better lives. There is no group of organizations better positioned to understand the preferences and hopes of people labelled as having an intellectual disability, and to assist in building bridges to other people, agencies and employers that can make those preferences and hopes a reality.

Families will of course need to be a central partner in this change. This has been a time of incredible stress for many families. Some have barely seen their kids or siblings for months under lockdown, and others have been jolted into the role of primary caregiver with little outside support. Many would like nothing more than to go back to the way things were. However, we have an opportunity – and a responsibility – to create something better.

Among agencies that have already made this change, values-based leadership has been a crucial success factor. Thanks to these trailblazing organizations, we know that the move from congregate care to individualization is possible, beneficial, and cost-neutral. Further, there are a number of resources available to assist DS agency leaders in making this transformation. With the innovative use of technology, increased attention to natural supports, and the support of the government, we can spread new approaches that are already growing in the province.

Ontario’s developmental service sector has come together admirably to respond to COVID-19. We can bring the same spirit of connectedness and collaboration to the challenge of further evolving our support to the people we serve. With real examples of successful individualization right here in Ontario, we know it is possible. But it will take the collective will and effort of people who have intellectual and developmental disabilities, their families, the organizations who provide supports, and our government partners to make it happen.

The challenge is clear. The time is now.

-Shawn Pegg, Director of Policy & Strategic Initiatives