This article addresses the need for reasonable adjustments, and other issues, by using examples of a hospital passport, assessing the mental capacity of a person, and how to improve care provided and reduce clinical risks for people with intellectual disability:
Excellent article from JIm Blair who we got to know when our son was in St George’s ICU back in 2013. There are some practical barriers to parents (in our case Deputies also) helping out with young adults with PMLD. Centralised centres of excellence like St George’s - in some cases quite far from home - and hospitals getting rid of what was the old Nurses accommodation has made it difficult for parents to stay and help with their children unless they have the money to pay for expensive local hotels. Resources such as the Ronald McDonald House are for parents of young children, not young adults, so this was not available. This resulted in needing to travel at the crack of dawn for some weeks, completely exhausting while our son was fighting for his life. We were able to afford some nights locally but not all parents might be able to do this. Not sure what the solution is but some accommodation for parents who need it would be helpful.