Parents of profoundly disabled children, what are your plans for adulthood?

[BattyBurg]

This post is aimed at those parents with profoundly autistic/disabled children and what the future might hold for them and for you? I have a profoundly autistic little boy who is such a lovely, happy little soul but I do worry about when he is the size of a fully grown man and how I will cope alone. (I am a single parent)

When my ex and I were together we agreed that it was unlikely that we would manage to have our son live with us for the rest of our lives. It is an upsetting thought but we both agreed that when he is an adult we will look for a supported living arrangement for him.

For those of you with severely disabled children/severe learning disabilities, what are your plans for when they are adults?

Thank you, it is not an easy topic, my ex is even saying than in the next year or so we will have to think about residential care and he’s only 9 😔

I have 2 teen DSs who will never be independent.

DS3 has autism, some co-morbidities and some medical needs. He will never live independently. He will always need a lot of support, but his needs aren’t as high as DS1’s needs. Eventually, we will get him to transition to living away from us, but not yet. Our driving motivation for this is that it is much easier for DC if this happens while their parents are still around and able to make arrangements, support transition and iron out any difficulties. DS3 has a lower life expectancy than normal because of a medical condition DSs have, but for many with the condition, life expectancy is increasing all the time and new treatments are being developed, so it will be important to plan for his future when DH and I are not able to support him. DS3 will need an individual placement. He wouldn’t cope in a residential supported living placement.

DS1 has complex physical, psychological, medical and developmental disabilities. He will never live independently. He will need 24/7 care for life. I don’t know if he will transition to living away from us. His life expectancy is more uncertain. We will see what his health is like by mid 20s. He would also need an individual placement.

At the minute, DSs have extensive support via their EHCP EOTAS/EOTIS packages. DS1 has a large care package funded via children’s continuing care funding. DS3 has some PA hours funded by social care.

I did not want my other DC left with any direct caring responsibilities for adult DD1, and I wanted to get her in a residential placement before we died. I had heard from one residential centre, how residents placed there in an emergency on the death of their parents, needed play therapy to deal with the grief and shock. I have discovered there is never an ideal school/placement, there’s always compromises; but I’d rather choose the placement myself, than leave it to the LA, who would choose the cheapest, they could find on my death.

At least, DD1 could talk to and see us regularly, while she settled in, which she wouldn’t have been able to do if we had died.

Plus, we need to live as long as possible to oversee her care and I believe some parents of adults with disabled needs die prematurely, because they are worn out by the stress of caring for them for decades.

We have had to ask our other DC to act as deputies and trustees for her disabled person’s trust, but it’s not as onerous as day to day care.