People with intellectual disabilities and their parents (who, in most cases, are elderly) are falling victim to COVID-19 in silence. It is not the virus’ effect itself on the individuals, but rather viral policies and procedures on part of the very agencies charged with ensuring their care, backed by ill-informed provincial guidelines. People with intellectual disabilities and their family members are afraid to speak up for fear of reprisal. These guidelines validate trumping union obligations and liability over the basic rights of people with disabilities. Families are often afraid to go public because they depend on these services, feel vulnerable and don’t want to harm their relationship with service providers.
At the initial outset of the pandemic, agencies providing residential care in congregate settings to persons with intellectual disabilities imposed visitation bans which prevented all except “essential visitors” from entering homes of their children. Initially, we understood the necessity of such restrictions as it was deemed in the best interest of the individuals residing in group homes. However, as public services and businesses open up, the strict guidelines on family visits are having a discriminatory impact on persons with disabilities who have been isolated from their loved ones for almost four months.
Simply put, visitation bans and the essential visitor definition and recommendations are being implemented in a way that prevents individuals with intellectual disabilities from having essential, meaningful contact with family members. Agencies are implementing very strict requirements for family visitors that are unreasonable and inequitable. For example, requiring confirmation of negative COVID test results within 14 days of each visit from family visitors, when testing has not been made mandatory for staff and other essential personnel, is discriminatory.
Recognizing the disability-related needs of individuals with disabilities and still implementing physical distancing rules for outdoor family visits is paramount to abuse of institutional power. Knowing that individuals with disabilities have limited understanding of the pandemic, have impulsive behaviours and limited communication skills, stipulating that visits will be terminated if physical distancing is not maintained is undue hardship.
Individuals with intellectual disabilities are being set up to fail. Termination of visits can trigger behaviours which, in turn, gives authority to the institution to carry out behaviour plans. Behaviour plans include consequences for non-compliance like chemical, physical and mechanical restraints which are sanctioned by the Ministry of Community and Social Services.
We closed large institutions like Huronia and Oaklands Regional Centres due to abuse and neglect. Today, by using the pandemic as an excuse, we are violating the basic rights of individuals with intellectual disabilities living in care. From an ugly history of eugenics, residential schools and institutionalization to independent living, community living and inclusion, Canadians with disabilities were beginning to feel valued. The Convention on the Rights of Persons with Disabilities (CRPD), Accessible Canada Act and the Accessibility for Ontarions with Disabilities Act started to give people with disabilities a false sense of hope and security. When COVID-19 was declared a global pandemic on March 12, 2020, people with disabilities were reminded every step in this journey that they do not matter economically, socially and politically.
Let’s voice for the voiceless and ensure their tears are not in vane, that their pleas are articulated and that their rights are not sacrificed. Please do not leave persons with intellectual disabilities behind as you open up Ontario. Please ensure equitable access to family visitors as essential in the lives of persons with disabilities living in care. Please immediately remove testing as a requirement of the visit and remove physical distancing as a reason for terminating a visit. Please do not extend the emergency measures order past July 15, 2020.
Rabia Khedr is a former Human Rights Commissioner in Ontario and disability rights advocate.