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I think I need help and advice - Carers UK Forum

I think I need help and advice

All about money
I am looking after my uncle full time and have been for a number of years now. He is on the lowest level of DLA and hence I cannot claim any benefit but at the same time I cannot work either. He has learning difficulties, has very little use of his left hand, now I need to be brutally honest here, he is the most abhorrent person I have ever known (but he is family). He has most of the disgusting habits you can imagine and some you can't. He cannot prepare his own food, needs constant prompting about his personal hygiene and needs to be constantly monitored in case he chokes on food that he hides in his bedroom, every little noise he makes wakes me up because I think he might be choking. The hardest thing to deal with is the fact that he is a compulsive liar. For example he had an operation on his left hand and was told to exercise it, I did not hear them tell him this, but while he was at home he kept it perfectly still, but when he was asked at the hospital if he was exercising it he told them yes he had been. And this is where the problem lies if he is asked by the DWP if he can look after himself, cook for himself, manage money etc he will tell them he can and if I try to correct him it will look like I'm the liar trying to pull a fast one.

I just need help and advice, what can I do to get them to see that he needs to be looked after much more than he will admit too.
Has your uncle had a social services assessment? They are used to dealing with this sort of situation. You can self refer to them and tell them the problems before they come along. He may be entitled to funded care depending on how much he has in savings.
I have a son with severe learning difficulties but he is a thoroughly nice chap, but hyperactive. My son has highest DLA Care and Mobility - he can walk well but always needs someone with him. I think you should reapply for DLA. As he has LD do you act as his appointee? If so, then you should be filling in the forms and attending meetings regarding benefits. Ask your GP about doing a Continuing Care Assessment, from what you say he has high care needs and might be eligible. Usually in our area a District Nurse does an initial check list and then if anyone seems to qualify, someone else does the full assessment. Does he go out at all? It's really important that outside care is gradually introduced in preparation for the day when you won't be able to care for him yourself. My son now lives in his own flat, with a lot of support, having first lived in a large residential home and then a smaller one. Hope that helps.
Has your uncle had a social services assessment? They are used to dealing with this sort of situation. You can self refer to them and tell them the problems before they come along. He may be entitled to funded care depending on how much he has in savings.
Thanks Kaycee,
I tried the social services twice and both times they were not interested that he had LD they just wanted to look round and then fit a hand rail in the bathroom. That's something I could do myself if he needed one.
They have a duty of care as someone with LD counts as a "vulnerable adult". I suggest you make a formal written complaint and keep a copy. Send it to SSD's complaints department, usually at the LA's head office.
Hi Bowlingbun,
I'm going to go see the doctor next week to see what they can do.
Might also be a good idea to complain about social services, as they totally messed up my life when I was 13 years old by putting me in the care of two people with learning difficulties, I think it was more like me looking after them, than them looking after me.
Oh it's been fun ! Or not, depending on your point of view.
Managed to see the doctor today (at last) and was told that they cannot refer my uncle as he is an adult and they only refer children.
So I ring social services yet again firstly I get put through to the wrong department then get to the right one??? Now I know there are different departments but I didn't know there was one for physical disabilities and one for learning disabilities, no one at social services told me this even when i was trying to explain that my uncle has severe learning [difficulties] (this one word comes back to haunt me).
Now I can understand if you put the wrong thing into a computer you get garbage out, but a human being??? So I tell them my uncle has severe learning difficulties and I am told they don't deal with people with learning difficulties. Now I would of thought that Severe learning difficulties was a disability but apparently not???
Social services does have a record of him in the physical disabilities department but not in the learning disabilities department. It would seem if you say difficulties instead of disabilities the system shuts down and no help is offered??? One word just one word, is this why I have got nowhere for over two years.
Social services then tell me he needs to be referred by his doctor. So it's back down the doctors again (starting to feel like a tennis ball) just going to have to wait forever for an appointment again.
Is it just possible I have lost out on two plus years of benefit just because I used the word difficulty and not disability and when no help was offered for his learning disability I thought none was available?
This is absolutely ridiculous. Social Services in our area has a "Learning Disability" team but M. has "severe learning difficulties". Whatever you call it, he can't read, write, or do any maths!!! In my area, the LD team is now supposed to be a joint team, with Health and Social/Adult Services. The East team was based in one building, the West team was based about eight miles away. They tried to have everything is one building but "it didn't work out" so then they separated again. If they can't even arrange their teams properly in one place, it makes you wonder about their ability to arrange anything at all! Why does a doctor have to get involved? As for the doctor only recommending childrens, urely your relative has been disabled since birth and therefore there should be records throughout his life. Sounds a total shambles to me. I'd make a formal complaint to the Head of Social Services, they are supposed to be helping people, not putting obstacles in the way.
Hi again Bowling bun,
He went to a school for children with autism when he was 5 years old and then at 7 he went to a school called swaylands for children who were educationally subnormal until he was 16. His brother also went to the same schools sadly he died in 1998 and I have been looking after him since then although he worked until 3 years ago. He was a road sweeper and would normally work within a small team however when they put him to work on his own he was found sleeping while he should of been working, they placed him somewhere he couldn't sleep but then he had time off sick with a doctors note one to many times and they told him to resign or they would fire him, they should of medically retired him but it was cheaper to make him resign. I only found this out when it was too late. Social services told me he needs an IQ test and it needs to be below 70 before they will help. And I think there will be a gap from when he was 16 to 63 because he was working and being looked after by family members during this time.
An IQ test?!?! This is getting sillier and sillier. It's not a matter of IQ, it's a matter of what he can and can't do. Your family has done brilliantly well to support him so well for so long by the way. He not only has learning difficulties, he has a physical disability as well, if one hand is of little use, even without his other problems, he would count as disabled. They have a "duty of care" to "vulnerable adults" and in order to establish whether or not he falls within their criteria for help, they have a duty to do a "needs assessment" for him. They can't say they won't come out until ....