Research Evidencing the effects of COVID-19 on people with PMLD

[Dignity-thru-Access]

I was just wondering if anyone could point me in the right direction of any published information of the effects of COVID-19 on the lives of people with PMLD? Ulster University looks to have some interesting stuff but I haven't seen it published 🤷🏼‍♀️

[LDAutie]

hi Dignity-thru-Access ill have an ask around for you as i know a few people who might be able to help but your best bet is probably with families of people with PMLD.

i was part of a study myself for a year that included how COVID affected learning disabled artists (all levels of LD though not just PMLD) i do have a uncle with PMLD in his sixties in ireland and it has worried me a lot how COVID will have affected him because ireland had much harsher rules and he has no one advocating for him as all his family are dead, really dont care (theyre close to where he is and yet they have never bothered with him) or theyre over here. i know itll have affected his behaviors masively and made him feel agitated and angry-as it did with me for so long,i coudnt understand why i wasnt even allwed out in the garden and why i coudnt go to my day centre or supported art studio (theyre one of the few who then fought to keep it open by dropping equipment off at everyones houses,and giving us all zoom sessions on the subject we do).for me it was hard enough but for someone with PMLD who may lack a lot of capacity it must have felt like there family/support staff are in some way harming or punishing them as that is how i saw it.

i dont know if it possible but what about doing a survey on something like survey monkey and asking families of people with PMLD how it was like for them as youll probably get better answers from those who see it and live it every day rather than a distant look at how it may affect a person.