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Permanent Housing

(5 Posts)
Ngaio1 Wed 28-Apr-21 09:22:17

I really would appreciate advice. I have a daughter who is in her thirties. She is very bright in many ways but has a genetic disorder - Tuberous Sclerosis - which makes life difficult in many ways. She is in sheltered housing but has to move into a new flat every eighteen months or so which is very unsettling. She is due to move again and the Housing \group she is with is trying to make her move to unsupported living this time. Much as I would wish her to be able to manage without assistance she cannot and never will be able to.

I am here to fight her corner now but am very worried as to what will happen when I die. Does anyone have advice, please, on how to make sure she is properly housed (and permanently) when I pop off?

JaneJudge Wed 28-Apr-21 09:32:35

does she have a social worker?

Why do they keep moving her? sad

My understanding of TS is that it isn't a stable condition. Have you tried carersUK? they generally know more about advocacy in your area or daughter's area. I take it she has no siblings that can attend meetings etc?

janeainsworth Wed 28-Apr-21 09:34:57

What a worry for you ngaio.
Does your DD have a social worker you can discuss this with?
I don’t know, but you seem to imply in your post that your DD can’t manage her own affairs. If that’s so, perhaps you could see a solicitor & maybe set up a trust to manage things on her behalf.

B9exchange Wed 28-Apr-21 09:37:54

She definitely needs an advocate for the future, is there no younger family member that could take this on? Perhaps the TS Association can help out? I too wonder why she keeps having to move?

JaneJudge Wed 28-Apr-21 10:16:27

I've had a look, mencap have a helpline number and they can give you contacts of advocacy service in your area

but try carersUK too, for yourself as well. You need some support to make sure the local authority is aware of the level of your daughter's needs. They can't keep moving her about, it isn't fair.