I’m a sibling. Specifically, I’m a sibling of a man with learning disabilities called Richard. Currently my parents take on most of his care needs, but they aren’t getting any younger and eventually that responsibility will fall to me. We’re working quite hard to make sure that the transfer of care is a smooth one, but many families are unprepared.
It’s not uncommon for a parent to fall suddenly ill themselves or even die - leaving a grown-up child with the immediate responsibility of care and little idea of the paperwork, arrangements, custom and contacts involved. It’s a perfect storm of stress and grief.
If someone with special needs is dependent on you, then you’ll want the transition to be as smooth as possible when the time comes. Here are some things to think about.
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I talk to a wide variety of other siblings and a continuing theme is of parents being unwilling to let willing siblings engage.
Many parents of people with special needs want to ‘protect’ their other adult children from having to engage. Parents give reasons like ‘wanting their children to live their own lives’ and ‘not wanting to burden them’.
This protection doesn’t work. To paraphrase the late great Sir Terry Pratchett, this is like not teaching us about self-defence so nobody will ever attack us. When you understand that your grown-up children genuinely want to be engaged with their family, then you’ve taken a really important step in terms of ensuring that the family bonds stay strong.
It’s important to understand, and I’m glad that my parents do, that my brother will never be far from my thoughts.
My family and I regularly discuss Richard’s evolving care needs both with him and among ourselves.
We’ve all got different viewpoints and it’s clear that there is some room for compromise. My parents tend to take the final decisions but the important thing is that the discussion has happened and I’ve learned more about the situation.
I tell them what I think, but I don’t make it an argument. I sit in on social worker meetings and I get copies of staff meeting notes sent to me. The more information that your other children have from primary sources, the more they understand you trust them and the better idea they have of the things that motivate the care decisions you take.
3. Keep your files in order
Richard generates a lot of paperwork. Doctor’s notes, funding notices, logs from signing groups, medications taken and social engagements arranged. Folders and folders and folders of the stuff.
Organisation is so important here. If there was a sudden accident and the social worker rang up to check up on an important policy, then I need to be able to find it quickly. Richard’s paperwork is all kept carefully up to date by both his care staff and my parents and I take a full copy of it regularly.
If the worst happens, we’ll at least be able to hit the ground running. There will always be a gap, but at least I’ll be swimming in paperwork rather than drowning in it.
4. Let people take responsibility
Gradual responsibility transfer is important for the person being cared for, the person taking on some elements of care, and for you.
If you have already been keeping people involved in discussion, and already been keeping people up-to-date with paperwork and meetings, then you’ll already feel much better about day trips, weekend’s away, and more and more care. Build the foundation first, and then move forward with it.
5. Get help
You aren’t alone and neither are any of your children. There are groups where siblings can meet up for a chat and talk about the issues they face.
The charity Sibs has been supporting both young and adult siblings of people with special needs since 2001 and their resources, material, and support have been invaluable to me personally and many other siblings I’ve known.
Dr Joe Reddington is the founder of eQuality Time, an enterprise that looks at ways to solve problems of inclusion and equality through education.