Thread by @yonalunsky

No data yet in Canada, but we saw major reports from UK and US this week on deaths from COVID during first wave for ppl w developmental disabilities. At a first glance, both reports garnered media attention but what do we do after we see the headlines?

If we have developmental disabilities or we love someone who does, we panic. We don't know what it means but we feel frightened, angry, let down again. What are people doing to help and change the trajectory during this second wave?

Here is the report from the US that was covered in the New York Times s3.amazonaws.com/media2.fairhea…

And here is the report from the UK, covered by the BBC and the Guardian (note that learning disability in the UK is what we call intellectual disability here) gov.uk/government/pub…

We do not yet have our numbers on deaths from COVID, or hospitalizations, or COVID rates for ppl with developmental disabilities.

Why do these numbers matter? because they document the vulnerability that those of us in this field have always known was there. "If we don't count, they don't count"

Our @HCARDD @ICESOntario has shown that premature mortality is almost 4x as likely for adults w developmental disabilities than it is for those without. It's higher when there's also a psychiatric disorder, and it's higher if the person has Down syndrome. ices.on.ca/Publications/A…

This makes people with developmental disabilities vulnerable not only to the effects of COVID, but to the impacts of COVID based restrictions on their already problematic health care access.

But there has been a lot of talk about what the word vulnerable means and the harms that go with using such a word

On the plus side, recognizing the vulnerability of this population should lead to them being prioritized when it comes to vaccine distribution.

Will this happen in Canada? It is being recommended by advocacy groups in other jurisdictions. static1.squarespace.com/static/5cf7d27…

Without a vaccine & high community transmission, most ppl with developmental disabilities are staying home. For some this means missing school or other daytime activities, & lots of stress on them and their families as they stay home. Virtual helps for some, but not all.

For some, those who receive residential support, this means mostly staying indoors even when others are going outdoors, and sometimes being separated from loved ones. A vaccine might help promote their wellness, and enjoy some safe interactions with others outside their home.

But "vulnerable" can also be a justification: it just is this way. Although risks for mortality are higher, not everyone with a developmental disability & COVID dies. Some ppl are lower risk than others. We need to identify risk factors within the developmental disability pop.

In the report from the UK, they explained that ppl w developmental disabilities are more likely to die from COVID because of co-occurring risk factors like diabetes and obesity which are already high in this population.

Does this make them vulnerable? When do we ask the question of why they have diabetes and obesity? We wrote about this last year. We see actions to address this in other jurisdictions but nothing here in Canada. canadianjournalofdiabetes.com/article/S1499-…

They are not born with these conditions. They develop them because of poverty, diet, limited physical activity, medications they receive, and our failure to emphasize health promotion from a young age and keep it up in adulthood.

But there are other important vulnerabilities besides these conditions. And they do not lie within the person either. They have low health literacy, inadequate health care & lack supports to help with timely health care communication. In fact, during COVID, they just lack support

They are vulnerable to our attitudes, misconceptions, & gaps in knowledge about their disabilities. They are vulnerable because certainly in Canada, we have not done enough to develop clear, timely, accessible communication about COVID, & give them the support they need

I hope that the study of these issues in other jurisdictions pushes us to look, and act upon these issues more closely at home. I want to see us doing more now to help ppl with developmental disabilities & their families to navigate this second wave.

Here is a really relevant blog with practical suggestions on how to do so in response to the UK report from @Jonathan_Senker voiceability.org/news/dying-to-…

And here is an astute comment on the vulnerability issue in the report rom @sarasiobhan mydaftlife.com/2020/11/13/rev…

And here is a powerful reflection from @TuffreyWijne on the What's and Why's she asks about this report.
People with learning disabilities six times more likely to die of Covid-19... The numbers are shocking tuffrey-wijne.com/?p=915