In the news

People with disabilities and their caregivers continue to experience barriers to vaccine access. Advocates call for more accessible clinics.

• Family begged to have sister with Down syndrome vaccinated sooner. Now she’s on a ventilator with COVID-19 (May 20, CBC News)
• Parents, advocates say province needs to do better job advertising low-stimulation vaccine clinics (May 11, CBC News)
• Ontario’s triage protocol unlawfully discriminates against people with disabilities (May 07, Toronto Star)
• People with disabilities face confusion and other barriers to getting COVID-19 vaccines. A task force is working to change that (May 01, Toronto Star)

As the number of COVID-19 cases reaches an all-time high in Ontario and ICU’s are filled to near capacity, concerns about triage protocols are brought up once more.

• Ontario’s COVID-19 triage protocol ‘discriminates because of disability,’ advocates say (April 28, Global News)
• Assessing the value of a life: COVID-19 triage orders mustn’t work against those with disabilities (April 19, CBC news)
• As ICUs fill up, doctors confront grim choice of who gets life-saving care (April 19, CBC News)
• Advocates for people with developmental disabilities ready to sue Quebec to get vaccine (April 15, Montreal Gazette)
• Public conversation on the ethics of intensive care triage during pandemic is overdue (April 15, Healthy Debate)
• ‘It’s a punch in the gut’: Lack of priority in the vaccine rollout frustrates people with developmental disabilities and their families (April 08, Toronto Star)

Advocacy groups are growing a stronger voice and share their concerns about vaccine prioritization and accessibility for people with developmental disabilities across Canada. Some file human rights complaints over discrimination of people with developmental disabilities during the pandemic.

• B.C. people with Down syndrome face vaccination discrimination: human rights complaint (March 26, News 1130)
• Group home’s visitor restrictions discriminatory, Ontario Human Rights Tribunal finds (March 25, CBC News)
• ‘Do you care about disabled people or not?’ (March 25, Healthy Debate)
• Manitoba disability advocates push for expanded COVID-19 vaccine access (March 21, CBC News)
• Quebec prioritizing people with disabilities for vaccines, but not if they live at home, upsetting families (March 18, CTV News)
• Health Matters: Why developmental disabilities are a COVID-19 vaccine priority (March 17, GlobalNews)
• Calls to make some of the most vulnerable vaccine priorities (March 15, CTV News)
• Disabilities community in Ontario wonders when they can get vaccinated (March 04, CBC News)
• Brandon man wants Manitoba to prioritize those with Down syndrome for COVID-19 vaccine (March 02, GlobalNews)

As vaccine roll-out planning is presented, families and self-advocates in Canada continue to call for prioritization of people with intellectual and developmental disabilities. Grassroots advocacy campaigns and petitions are being launched.

• Mom wants adults with Down syndrome to have priority access to COVID-19 vaccine (February 18, Global News)
• Advocates worry as most disabled people left off vaccine priority list (February 17, CTV News)
• People with developmental disabilities should be prioritized for COVID-19 vaccine, say advocates (February 11, CBC News)
• Some with disabilities worry they’ll die if they get COVID, say slow vaccine rollout puts them at risk (February 06, CBC News)
• ‘It’s devastating’ disabled people not prioritized in vaccine rollout, advocates say (February 8, CTV News)
• Coronavirus: Parents of Quebecers with developmental challenges call for vaccine priority (February 04, Global News)

There is growing evidence of higher death rates and more severe disease outcomes of COVID-19 in people with intellectual and developmental disabilities. Advocates call for vaccine prioritization. 

• B.C. advocate calls for people with Down syndrome to receive COVID-19 vaccine priority (January 16, CTV News, video)
• The argument for making people with down syndrome in their 40s to become vaccination priority (January 14, The Early Edition, CBC News, radio)
• Pandemic has been ‘very hard’ on families of people with Down syndrome, advocate says (January 14, CBC NEWS)
• ‘It’s a constant worry’: Individuals with Down syndrome at greater risk of COVID-19 (January 10, CTV news)
• ‘What does this mean for us?’ People with developmental disabilities left out of vaccination planning (January 5, Healthy Debate, Canada)

Caregiver burn-out is increasing and concerns arise about a second COVID wave and its impact.

• Learning disabilities: The pain of Covid’s impact on respite care (December 17, BBC news, UK)
• People with learning disabilities should be prioritised for a Covid vaccine (December 15, The Guardian, UK)
• Priority for COVID-19 vaccine must include those with intellectual and developmental disabilities (December 4, Globe and Mail)
• Covid: Adults with learning disabilities ‘miss out’ (December 1, BBC news, UK)

Research finds that people with learning disabilities are six times more likely to die from coronavirus than the general population. The pandemic highlights already existing health and health care disparities for adults with intellectual and developmental disabilities.

• Covid-19 deaths must prompt better healthcare for people with learning disabilities (November 19, The Guardian, UK)
• Covid: Learning disability death rates ‘six times higher’ (November 13, BBC News, UK)
• Developmental Disabilities Heighten Risk of Covid Death (November 10, New York Times, USA)
• Our adult son has a learning disability. How will he cope as coronavirus surges? (November 4, The Guardian, UK)
• Covid-19: Carers ‘worn out’ by virus and need services back (November 1, BBC, UK)

New research demonstrates the increased COVID-19 risks and disease outcomes for those with Down Syndrome.  

• People with Down syndrome have 10 times the risk of death from Covid-19 as those without, study finds (October 23, CNN Health, USA)
• Restrictions on care home visits traumatize families, caregivers (October 18, CBC NEWS news)
• Disabled Canadians ignored in policies on COVID-19 (October 2, Policy Options, Canada)

Prolonged periods of isolation and changes in daily routines have severely disrupted the lives of people with intellectual and developmental disabilities, affecting their mental health and behaviours.

• Proceed with caution with Ontario’s critical care triage protocol (September 15, Policy Options, Canada)
• Some people with disabilities have been isolated in their care homes for months. Experts say it could lead to an ‘avalanche’ of mental-health issues (September 14, The Globe and Mail)

Continued advocacy for exemption of special public health rules and for special accommodations for those who cannot adhere to the measures.

• Autism, hard-of-hearing advocates ask for kindness with mask regulation, (August 28, CBC NEWS)
• Coronavirus: Toronto man calls for awareness, understanding of medical-related mask exemptions (August 4, Global News)

Months of physical distancing rules is taking its toll, especially on those who are non-verbal and rely on close contact with their caregivers. The “new normal” starts to seriously affect mental health and behaviours of people with intellectual and developmental disabilities and their caregivers.

• Ontario family files human rights application to visit son, 14, in group home (July 3, National Post)
• COVID-19 distancing rules have ‘silenced’ daughter during group home visits, mom says (July 28, CBC NEWS)
• COVID-19 puts people with disabilities at higher risk, advocates say (July 4, CTV News)

Research studies show higher COVID-19 death rates in people with intellectual and developmental disabilities in the United States.

• People with disabilities, autism carry a heavier pandemic burden, advocates say (June 30, Global News)
• ‘Pure joy’ as Manitoba adults with intellectual disabilities allowed to have loved ones over for visits (June 23, CBC NEWS)
• COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities (June 9, NPR, USA)
• People with intellectual disabilities are being hit hard by COVID-19 (June 8, Medical Press)

Visitation bans pose a real challenge for caregivers of people with intellectual land developmental disabilities needing hospital care. The implementation of protective mask wearing leads to difficulties for those with communication challenges.

• ‘Invisible disability’: Masks making it harder to communicate, deaf and hard of hearing say (May 28, CBC NEWS)
• Masks problematic for asthmatic, autistic, deaf and hard of hearing: health advocates (May 21, CTV News)
• B.C. updates policy on hospital visitors after outcry over disabled woman’s death (May 19, CBC NEWS)
• Two metres and a world apart: Life in lockdown for me and my disabled son (May 9, Globe and Mail)
• Pandemic highlights existing barriers for those with communication disabilities (May 7, National Post)
• ‘I need help’: Coronavirus highlights disparities among Canadians with disabilities (May 6, Global News)
• Sask. mother of disabled child says tepid COVID-19 response highlights long-term issues (May 5, CBC NEWS)
• ‘He can’t understand why he’s not seeing his family’: Mother of non-verbal son begs for visitor exemption (May 04, CBC NEWS)
• Jane Philpott on life inside the care home where 95 per cent of the residents have COVID-19. ‘I think Canadians would be shocked to realize how many facilities like this exist in their neighbourhoods’ (May 1, National Post)
• ‘I saw the fear in their eyes,’ former MP says of residents at Ont. facility for vulnerable adults (May 1, CTV News)

The first serious outbreaks occur in group homes and residential settings, raising discussion about personal protective equipment scarcity and the protection of professional caregivers.

• Group calls for more safety for Canadians with intellectual disabilities (April 25, CBC NEWS)
• Woman with disability dies alone at B.C. hospital amid COVID-19 restrictions (April 24, CBC NEWS)
• ‘Window is closing’ to protect disabled community from a COVID-19 outbreak (April 18, Toronto Star)
• Outbreak of COVID-19 hits Elmira home for people with intellectual disabilities (April 15, CTV News)
• Continuing in-home support for people with intellectual disabilities during COVID-19 (April 14, Global News)
• Staff at Ontario facility for vulnerable adults walks out following COVID-19 outbreak (April 10, CTV News)
• Canadians with disabilities left with few alternatives amid COVID-19 shutdowns (April 9, CBC NEWS)
• Canada must put human rights at the centre of its COVID-19 response (April 2, Toronto Star)
• The forgotten sector in the COVID-19 fight (April 2, Toronto Star)

In March 2020, a state of emergency was announced for Canada. The first lockdown includes visitation bans preventing essential caregivers from seeing their loved ones living in congregate settings. Discussions arise about triage protocols in hospitals.

• COVID-19 visitation bans for people in institutions put many at risk in other ways (March 29, CBC NEWS)
• Ontario reviewing ethical guidelines for who gets care if COVID-19 cases overwhelm system (March 28, CBC NEWS)