Advice on future care for disabled person when adults become too old

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Whipspan

I currently am the primary carer for my stepson who has physical and learning disabilities from a severe head injury at aged 8 and is now 56. He has a trust fund from a settlement from his accident so is financially secure and also receives benefits.

He has moved from Scotland to England to be near us, after the death of his mother, lives alone in a flat (which he owns) with care 1X week and daily contact with me and my husband. I am 75 and his father is 82 and we must consider futures. He has one brother who sees him weekly but shows no interest in care.

He is very sociable, mobile, can use buses, takes part in many local activities run by MHA at the church but he is vulnerable. Previous safeguarding was instituted when he was in Scotland re financial abuse by a 'friend'. He has no concept of the value of money and no numeracy skills. He uses a bank card to tap.

We have LPAs for my stepson and I manage all his affairs as he has never managed anything. We have to organise all health related appointments and manage medications. He is declining cognitively as I expected so we need to consider futures before there is a crisis with one of us and my stress levels increase!

I am thinking that at some point he will need to live in some sort of supported housing or retirement village with care that can increase as needed. His finances can be managed by a professional e.g. legal and the trust fund manager but his health and welfare is my biggest worry. I don't think we can rely on his brother and there are no other family members.

Does anyone have similar experience? Who can manage his daily needs when we cannot?

Darking

That sounds like an incredibly heavy responsibility, and honestly, it sounds as though you and your husband have done an amazing job creating a stable, fulfilling life for your stepson during what must have been a very difficult transition after losing his mother.

What stands out to me is that you're not waiting for a crisis before thinking about the future. So many families are forced into making decisions during an emergency, whereas you're looking ahead while there is still time to plan carefully and involve your stepson in those discussions as much as possible. Given everything you've described, I don't think your biggest concern is actually the financial side. His trust fund, property ownership, and LPAs provide a strong foundation. The real challenge is exactly as you've identified: who will coordinate and oversee his welfare, healthcare, appointments, medications, and protection from exploitation when you and your husband are no longer able to do so.

You might want to start exploring supported living services rather than waiting until he needs residential care. Many supported living schemes allow people to have their own flat and maintain a great deal of independence, while gradually increasing support as needs change. For someone who is sociable, mobile, and engaged in community activities, that could potentially provide continuity rather than a sudden move later in life. I've known of families in similar situations who have built a "circle of support" around a vulnerable adult. That can include professionals, trusted friends, support workers, advocates, and family members, so that responsibility doesn't rest on one ageing carer. Even if his brother is unwilling to take on primary responsibility, there may be ways for him to remain involved in a limited capacity without carrying the whole burden.

You may also find it helpful to ask Adult Social Services for a Care Act assessment and, importantly, a carers' assessment for yourself. Future planning is a legitimate concern, and local authorities are often more receptive when families raise these issues before a crisis develops. Most of all, please don't feel guilty for thinking about this now. At 75 and 82, planning for your stepson's future isn't giving up on him. It's another form of caring for him. You're trying to make sure that when the time comes, he is surrounded by the right people and support rather than being left vulnerable and facing rushed decisions.

I hope others with lived experience will reply, but from what you've written, your instincts seem sound. Supported living with scalable care, professional management of finances, and a broader support network around his health and welfare sounds like a very sensible direction to start exploring. ❤️