Thank you very much for the opportunity to be here today.
The Down Syndrome Resource Foundation provides health and education services for children, youth and adults with Down syndrome. Based in Burnaby, DSRF is British Columbia's leading own Down syndrome provider. We're also recognized for our work supporting families of people with Down syndrome across the country.
Classified as a developmental disability, Down syndrome is a genetic condition. It results in a third, “extra” copy of the 21st chromosome, which leads to health problems, developmental delays and learning disabilities.
In Canada, 45,000 to 50,000 people have Down syndrome, so even within the country's smaller disability population it is a small group that, because of their limited numbers, is often overlooked and marginalized.
These factors combine to make them especially vulnerable and disproportionately impacted by this pandemic.
For adults with Down syndrome, COVID-19 hospitalization rates are four times that of the typical population, and death rates are 10 times higher. Their developmental disabilities also make them more likely to contract the disease, because they struggle with or can't comply with safety practices such as masking and physical distancing. In a society where safety protocols are designed to protect the general public, not our most vulnerable, the only safe solution for these individuals is extreme isolation.
DSRF believes the main reason we have not seen higher COVID-19 hospitalization or death rates in our Down syndrome community is because they've been cut off from society.
One example is the education system. Due to the risk of more severe consequences if someone, even a young person, contracts COVID-19, many students have had to stay away from school completely. Attending in person, which is essential when you have a developmental disability, is too risky because school safety protocols are just not designed to protect the most vulnerable students.
It's a very similar situation for adults with Down syndrome or other developmental disabilities in the workforce. In many cases, they have had to stop working completely. Going to work is too risky. They often perform work that simply cannot be done remotely, so they end up completely cut off from employment.
DSRF recommends that efforts to combat this pandemic and other similar health crises should be based on protecting Canada's most vulnerable first. This includes individuals or persons with disabilities, and especially those with disabilities like Down syndrome that often carry significant co-morbidities. When schools, workplaces and communities are safer for individuals with disabilities, they're safer for everyone.
The pandemic has also disproportionately impacted families who care for individuals with developmental disabilities, like Down syndrome. Now more than ever, grassroots and on-the-ground organizations such as DSRF who work directly with these families see the holes, the inequities and the fragility of Canada's social safety net that put our families more at risk.
Children with developmental disabilities, and disabilities in general, are more reliant on their families regardless of their age. Adjusting to lockdowns is far more difficult when you have children with developmental disabilities whose support systems are either disrupted or lost completely. In normal circumstances, families of individuals with disabilities also face financial inequities due to the added cost for things like critical therapies.
As one parent said to me recently, the average Canadian lives in the green, generally good zone most of the time, periodically moving to yellow or caution, or even red, critical, when they deal with a crisis. Families of individuals with disabilities in Canada live in the yellow zone pretty much all the time, so when the pandemic hit, they went to red, and that's where they've remained. This takes an immense toll.
Not surprisingly, demand for DSRF services has increased, but requests for our mental health services have skyrocketed because families now are harshly reminded of just how fragile their situation is both emotionally and financially.
The reality is that the way Canada has approached its support of persons with disabilities for years has led to the current state where these families are disproportionately vulnerable both emotionally and financially, so they're less able to withstand the extended periods of hardship like those that are being created by the current pandemic.
DSRF recommends establishing things like a federal disability benefit to start changing this. With the added pressure that families of individuals with disabilities face, it's clear why current supports and benefits are falling short.
I will finish by saying that while our disability communities have faced significant challenges during COVID-19, you can use this crisis as a catalyst to make positive and very meaningful changes to how they are treated and protected going forward.
I believe the well-known quote from Mahatma Gandhi perhaps sums it up best: “The true measure of any society can be found in how it treats its most vulnerable members.”
Thank you.