Despite their status of being at an increased risk of contracting COVID-19, people with disabilities have largely been left out of the conversation around supporting Canadians throughout this global pandemic.

Perhaps we can start by talking about the short-sightedness of the federal government’s original plan for a one-time payment of up to $600 for people with disabilities. Due to outdated eligibility criteria based on the disability tax credit, this initiative only included about 40 percent of Canadians with disabilities, missing many on the autism spectrum. It is unfortunate that the updated measure still relies on the same old eligibility criteria.

Or maybe we could talk about the need to include group homes for individuals with intellectual and developmental disabilities (IDD) when we focus on how we have failed residents of long-term care facilities. Canadians who reside in these group homes face many of the same risks as elders in long-term care, but it took one home experiencing a 95 percent infection rate to bring attention to the issue. While cases that occur in long-term care homes are included in public data, many public health units do not distinguish between cases within other congregate living settings, which points to a critical gap in the data.

Reporting of cases in institutional settings across Canada is inconsistent. For example, just north of Toronto, York Region Public Health reported cases by individual institution, including those serving the IDD population, while Toronto Public Health reported cumulative cases in long-term care, but not facilities serving people with IDD. Without a national or provincial data strategy, public pressure was largely responsible for improvements in COVID-19 data collection, such as the collection of race-based data. It’s time to do the same for disability.

In the Netherlands, the Ministry of Health, Welfare, and Sport created an online registry with an open call to organizations caring for people with intellectual disabilities to register suspected and confirmed cases of COVID-19. Out of 819 patients tested for COVID-19, 45 percent of this group tested positive, with a mortality rate of 13 percent, higher than the average for the general population

Data from the US show COVID-19 case fatality rates for people with intellectual or developmental disabilities as high as 16 percent, over 2.5 times higher than the general population.

Even before COVID-19, housing insecurity and long supportive housing waitlists have left many people with intellectual disabilities and autism living in unsuitable accommodations. Supportive housing situations include a wide range of support and service options, from full-time support workers to having someone to help with meal preparation or managing finances. This means enabling more people to live in their own homes or with a caregiver, and not in institutional or large group home settings. Those who are deemed eligible for supported independent living would have a more normalized level of COVID-19 risk compared to those who are in group or other congregate settings.

Long-term care homes and institutional living settings may not open up at the same rate as the rest of the economy.

However, shortages related to housing and staffing across the country often result in these individuals remaining with aging parents or moving into substandard housing options. These unmet housing needs in both congregate- and supported-independent living, combined with lasting impacts of isolation with group homes closed to visitations, present additional concerns. People with intellectual disabilities are also overrepresented among those living in poverty and in emergency shelters, where physical distancing is not possible.

As well, as cities and provinces continue reopening, we’re still ignoring the plight of people with disabilities despite the knowledge that reopening will present new challenges for those living in residential care settings.

Long-term care homes and institutional living settings may not open up at the same rate as the rest of the economy. Both government and long-term care providers have released guidelines for reopening to limited visits at long-term care homes, however there is no clarity yet when non-essential visitor bans will be eased for group homes for people with disabilities.

After three months of isolation and without updated guidance, one Ontario family filed an application to the Human Rights Tribunal seeking to visit their child, which it finally got to do in late August. Many of these residents are nonverbal and thus unable to communicate through window or virtual visits. Consequently, they are regressing in their development as parents often act as unpaid support for their children.

The additional uncertainty will have an impact on the reintroduction of routines and mental health of people with intellectual disabilities. It underscores the importance of clearly communicating government messaging so that people with intellectual disabilities understand what is required of them, such as complying with mask requirements. Reports of parents being turned away from shopping when their autistic children won’t wear a mask raise concerns for single parents who can’t leave children home while they shop.

These issues and the lack of inclusion of disabled voices in the discussions taking place across the country speak once again to the need for an increased disability lens on government decisions. At Canadian Autism Spectrum Disorders Alliance (CASDA), we work to amplify the needs of the 500,000 autistic Canadians across the country. A number of people with autism, a developmental disability, also have intellectual disabilities and represent a significant portion of the disabled community in Canada.

We are encouraged that the federal government has committed to a National Housing Strategy, with people with IDD being a priority population to benefit from investments. Housing is a key priority for CASDA’s work to support autistic Canadians and their families. Part of Canada’s COVID-19 recovery should include additional resources to reinforce deinstitutionalization for people with IDD and invest in strengthening community-based housing and supports, moving away from the group home model.

As we collectively review our approach to managing the first wave of COVID-19 in Canada, and prepare ourselves across each province and territory for subsequent waves, there is an  opportunity for the government to demonstrate leadership and commitment to supporting disabled Canadians and meaningfully engage this population on the issues that impact them the most.

This article is part of the Tackling inequality as part of Canada’s post-pandemic recovery special feature.