In 1997 it was apparently discovered that 54% of people with learning disabilities didn't go to their parents' funerals. Crickey, I hope that stat has improved. You can perhaps assume that many of those people were adults with learning disabilities. Which makes it even more of a shock.
And what about the shock of not seeing a parent again, only for the rest of the family to cover up why that won't happen. In 2007 I met a woman who was organising a play by people with learning disabilities, about how they want to go to family and friend funerals. Powerful stuff.
But a quick internet search is a pretty depressing experience when looking at this issue. It's just a sea of confusion. I apologise if quality work has been done on this, but Google's not showing it. What's needed is a decent, accessible and friendly guide that demystifies the whole process. Of course it's a sensitive and challenging issue, but, as with many complex things in life, the answer mustn't just be to go for the apparent easy option.
This can be handy for us as a family, because I don’t want to keep telling Stan that my uncle, who has dementia, is ‘ill’. We don’t want to shield Stan from things and attempt to keep him in a child-like bubble (it's all in the book).
Stan's Grandad died in 2010 and Stan was nine. He didn't go to the funeral. But I was close to lobbying for him to go. Nowadays, I'd want him to go to a funeral.