to all those who've had incredibly difficult, life-long decisions to make and live with.
I had a relative who lived in a home for people with severe learning difficulties, a significant proportion of which have DS. His cohort were born in the 1960s. These people tended to remain in their families and then move into care in young adulthood when the strain of caring for a physically adult child with the capacity of a young child became too much for aging parents whose children would be flying the nest at that age. Add in that DS tends to be more common in older parents, so you're talking full care burdens of 60yos caring for 20yos.
When that cohort were in their 20s and early 30s it was a lovely, youthful atmosphere, but old age and dementia set in quickly. The staff do their best to keep them in their home with their friends as long as they can resource it, but it was never intended to be a nursing home.
My own relative died some years ago, but we've kept visiting his best friend who has no family. He was an only child to older parents. There are few parents alive to visit now, it's mainly the middle-aged siblings to those that had some.
These residents are pretty lucky. If they'd been born more recently, some at the more able, supported living end could have accessed a more mainstream education and found employment. But most couldn't. These are people born physically healthy enough to have lived to middle-age. Who weren't abandoned to institutions in infancy so their families could move on as it was phrased in my family at the point of diagnisis.
I've known several families where parents have clung on to keeping their child at home, but as the parent became in need of care themselves and generally at crisis point, the child had to move into care anyway.
I have a child with "high functioning" autism and I'm barely scratching the surface of the SNs world. Our world is very different to the demands on families facing more acute needs within the same condition. But where there are SNs, it consumes more emotional and financial resource. It changes family decisions and opportunities. Any additional support has to be fought for, now more so than in recent decades. Nothing is freely given. If the state can dump it all on a quiet parent, it will.
All lives have value and meaning, but disabilities have wider costs too. Parents need the time and choice to make those decisions that have life-long consequences. The law as it stands works effectively. Unfortunately the social care and education system do not.
It's great that we are seeing more diversity of people with disabilities and additional needs being active in society and reaching their potential, but let's not delude ourselves into thinking that this is a feasible opportunity for all people with similar conditions.