The problem with many authorities is that most people don’t have an allocated social worker, annual reviews aren’t being done properly, and older parents are not being asked routinely about future plans for their sons and daughters.
The biggest problem with SL is “future proofing” it.
In my area, my son and four other parents were persuaded that it was the way to go, that SSD would support them etc.etc. but the reality has been very different. The gaps have really been highlighted by the pandemic, when day services and/or care staff were withdrawn! Leaving our children with little or no care. My son lost all his day services, not replaced as they should have been according to his care plan, with extra hours. Left alone for 19 hours a day.
Others, with both parents living, had their children back home, undoing all the good work to get them more independent. Some of these parents were 80+!
The biggest challenge is not the right accommodation, but the right long term care, for when you are no longer around to fill in the gaps.
We had an assessment after 7 years this week, my son used to have them yearly then he joined a council run support group they found him voluntary job at age concern coffee shop which he had for 10 years but unfortunately ended due to the pandemic and they have said will not be opening again any time soon. So I contacted the council for assessment on his needs as after 18months of being at home he did not want to go out, took nearly 3 months to get assessment. They have not suggested much and when I mentioned supported living as my husband is 69 and I am 66, my son said not yet as he does not want to be lonely. I have asked can we at least have a look at what is on offer so he can see what it would be like. Her reply was well if Pauls is not ready should we, but my main concern is if anything happens to my husband and I what will happen then.
You have a RIGHT not to care any more. It’s far far better to have a planned move out, a long period of what amounts to “shared” care while you son settles in and you make sure he has everything he needs, and staff can ask you about any concerns.
He’s going to be a lot more lonely after you and your husband are gone, unless they start supporting him to have a new life asap. Does he attend any other services at all?
The social worker should have done a Carers Assessment for each of you, away from your son. Has this happened?
Not really an assessment like he had 7 years ago, she just wrote down what I said he did, didn’t really ask about him.
He has gone back to college 2 mornings a week, they are ALFIE courses for adults with learning disabilities one preparing for life and work the other cooking healthy meals. She suggested Mencap. The lady for our local carer support group suggested more than the social worker did. I have contacted GEMS local NHS group the carer also suggested The light but social worker said they wouldn’t fund that. I have suggested groups that carer lady suggested but need to be referred by social worker.
I have sent her email following our meeting as I like things in writing so we all know what has been said but she has not replied yet.
Unfortunately our council has gone bankrupt.