In this terrifying @nytimes article are the first stats I've seen about people with 'developmental disabilities' (the term used in the article) and COVID-19. I find them profoundly upsetting, so think about if you want continue to read this thread 1/12 https://www.nytimes.com/2020/04/08/nyregion/coronavirus-disabilities-group-homes.html#click=https://t.co/KExkQrtUjC

In New York State, of the 140,000 people with developmental disabilities known to services, 1,100 people (0.8% - it is unclear how comprehensive testing is in NY State) had tested positive for COVID-19.
2/12

105 people died of causes related to COVID-19 - 9.5% of those tested, although it is unclear if everyone who died in this way had been tested.
3/12

The article also cites a consortium of private providers of group homes etc, reporting that people with developmental disabilities were 5.34 times more likely to have COVID-19 and 4.85 times more likely to die from it than other people.
4/12

Another estimate in the article was that 10% of people with developmental disabilities in services showed potential COVID-19 symptoms but had not been tested.
5/12

Experiences in NY State will be very familiar to people in the UK, like the difficulty of supporting people in lockdown/self-isolation, lack of contact with family, support staff getting sick, a lack of protective equipment & problems with getting people admitted to hospital 6/12

In terms of COVID-19, is NY State where London or the West Midlands are now in the UK? So what are we going to do NOW? Others will know much better than me about how better to support people through this, so I'll just list some ideas on the information side
7/12

1) NHS England, Public Health England, equivalents in Scotland, Wales, Northern Ireland, to prioritise analysis & rapid, regular publication of info they have relating to disabled people and COVID-19 (even if imperfect - explain them, don't use as a reason to suppress info)
8/12

2) If reports of deaths are still coming into the LeDeR programme (even if full reviews have been suspended), analyse and publish this info rapidly and regularly in relation to COVID-19 and related deaths
9/12

3) Help local authorities to collate, analyse and share info they will have locally to identify issues in real time.
4) Large service providers (or consortia of them) to collate, analyse, publish regularly info on what's happening to people in their services. 10/12

5) Mainstream COVID-19 trackers (of which there seem to be legion in the UK) to analyse and publish their information by disability. 11/12

6) Concerned citizens will work out how to set up our own way to record and remember disabled people who have died COVID-19 related deaths. Once again, we cannot wait or trust those whose job it is to do the right thing. 12/12