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need help and advice please (carer for my sister) - Carers UK Forum

need help and advice please (carer for my sister)

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Hi all, so glad to find this forum and i am sure there is someone who can answer my questions as i am pulling my hair out at the minute.I am a full time carer to my 54 year old sister with learning disabilities. I became her carer last year as she was not recieving and refusing help. We have moved into a lovely 4 bedroom housing assoc house (very grateful).But now my sister has moved in with me she has lost her disability premium on income support. Also housing benefit class her as non dependent and charge me 12 pound a week and also i have lost my single person discount on council tax .So per year i am now over a thousand pound worse off . Housing benefit told me if i have my sister on tenancy agreement they would pay half rent ,But housing assoc refuse to put her as joint tenant when asked if she could be sub tenant they said she did not have the capacity . But as far as i am aware it is a doctor who decides if someone has capacity or not . I was working full time and now work part time as it was increasingly difficult to juggle everthing. I am so angry as i feel i am doing my best and being punished financially for saving the government or local council a fortune. I love my sister dearly and although she has her moments she brings so much happiness to the house also . I apologize if i sound like a moaner but i am at the end of my tether and dont know where to go or what to do next any advice would be appreciated . P.S she gets middle rate for dla care and lower rate mobility council tax refused a discount also . thank you all Barbara
Hi there Barbara. I'm Sorry but I don't have the answers you are looking for but just wanted to welcome you to the forum. I'm sure someone will come along soon that may be able to help.

Bell x
Hi and welcome Image
I often say that benefit rules are like Snakes and Ladders. I know that the CUK helpline has been inundated after Christmas (the forum has told so many people to speak to them!) but you really do need to speak to them. I'm concerned that she might not be getting everything which she is entitled to, both money and services. Does your sister currently receive any services from Social Services/Adult Services? Since she moved into the new house with you, has she had a "Needs Assessment" from Social Services and have they given you a "Carers Assessment"? SSD might be able to arrange "Direct Payments" for you, but it really depends on their assessment. They really should already have done a Mental Capacity Assessment (MCA), but my son has only just had his done at the age of 33. A lot depends on the severity of your sister's learning difficulties, it might be that the DLA award needs to be looked at again? Are you now claiming Carer's Allowance? People with severe learning difficulties can be exempt from Council Tax, but I don't know exactly how they work out who is, and is not, eligible for this exemption. The Housing Association might be guilty of disability discrimination by not allowing your sister to become a joint tenant. If she is deemed as "lacking capacity" then she cannot enter into a contract herself, however someone who is acting for her could probably sign on her behalf. Ask SSD for a formal MCA and the assessor ought to know the answer to that one. I'm still trying to find out the answer from my son's assessor! I hope this helps a bit, I've tried to point you in the right direction, from my own experience with my son, however everyone's situation is slightly different, hence my suggestion to ring CUK.
thank you for your very helpful responses ,she does get a carer one day a week and they are going to get a day centre placement,she has never had a mental capacity asessment and i have never had my needs assessed. I have spoken to shelter today about housing advice as i would not have this problem if housing assoc let my sister be a tenant. I just wonder how many people out there are in the same position and just accept their answers given to them. If i did not look after her it would cost hundreds per week to care for my lovely sister.What is CUK ? thats someone i havent phoned yet. thank you all for your help
Hi barbara
CUK is carers UK Image . Go to support &advice tab at the top and the phone number is there. I must mention, though that lots of people are trying to phone, so it isnt always easy to get through. You really could do with expert advice, so its best between 10 -12am and 2-4pm.