‘Do you care about disabled people or not?’

Why don’t we count adults with developmental disabilities in the Canadian health-care system? Is it because of underlying attitudes in health care that their lives matter less?

Health policy decisions are made based on evidence, but without collecting, counting and reporting evidence for a particular population, health-care needs will be overlooked. In Canada, this has proven to be true during the pandemic for people with developmental disabilities.

One year into the pandemic, the only published studies on the effect of COVID-19 on people with developmental disabilities are from other countries, such as the United Kingdom and the United States. There are no Canadian studies yet because there are no federal or provincial mandates to report data related to developmental disabilities or disability in general. No data, no research. No research, no evidence. How can pandemic policies be equitable if there is no evidence to base them on?

There is no denying this group is at high risk during this pandemic: pre-COVID, Ontario data showed that the developmentally disabled were already nearly four times as likely to die prematurely as their non-disabled counterparts. A U.K. report from the Office of National Statistics published last month noted mortality rates were 3.7 times higher in men and women with intellectual disabilities during the first two waves of the virus. A recent U.S. study of 64 million patients reported that intellectual disability was the strongest independent risk factor other than age for COVID-19 mortality.

Without the data, it seems that government officials creating health policy have excluded the needs of this group in creating their COVID-19 strategies.

And as governments continue to overlook people with developmental disabilities, the health education system continues to fail to educate health professionals about the lives and needs of people with developmental disabilities. Clinicians are responsible for taking care of the health of all people, not just some of them.

While there have been welcome investments in childhood disability research, children grow up to spend their lives as adults. Childhood disability specialists are not familiar with the adult health issues or how health and social care policies intersect for this age group. There is no adult version of a developmental pediatrician.

When the pandemic hit, it was obvious that there was no one at the decision-making table who understood the complex health needs and health consequences of COVID-19 on adults with developmental disabilities. People with developmental disabilities and their families have been forced to become their own advocates as the systems refuse to recognize their high-risk for COVID-19.

This has been made abundantly clear in many of Canada’s provincial vaccine priority plans, and it is showing itself again now that vaccines are being administered. Only Ontario and the three territories have specifically included all people with developmental disabilities in their vaccination priority lists. Others have only selected subgroups either based on where they live (congregate care), specific diagnoses (e.g., Down syndrome), age, or because of the “very significant” nature of their disability. (How do we decide what constitutes “very significant” – a category which is neither scientifically supported nor clinically meaningful?) Nova Scotia has yet to even make mention of people with developmental disabilities. 

At the same time that COVID-19 has caused despair and hopelessness, it has also driven new voices to speak up. The Ready for My Shot grassroots advocacy campaign features the selfies and stories of adults with developmental disabilities. Aaron Waddingham, a young man with Down syndrome from B.C., pointedly asked his health minister at a recent town hall: “Do you care about disabled people or not?”

Even if soon there will be enough vaccines for everyone, health officials need to overtly name developmental disabilities in their pandemic policies. Failing to do so has fostered uncertainty, anxiety and a sense of hopelessness for a group that has experienced severe effects of COVID-19. These people have had to leave their jobs, miss out on schooling, lose their independence and experience mental health issues over this year of self-isolation.

If we have learned anything from this past year, it is that Canada needs to invest in research and clinical training and stop excluding the health needs of adults with developmental disabilities. This investment will build the critical mass of decision makers who will ensure that disabled people are counted and who will design policies that will demonstrate to Aaron and his community that the lives of people with developmental disabilities really do matter.