I have just received my sons assessed charges for 2022 , he lives full time with me .
I am amazed at the amount they say he needs for his expenses, £25.30 per week??, this includes everything, nominal rent .clothing and bedding , laundry, chiropody which is desperately needed due to his odd gait and he has a lot of pain with his feet . No food or travel or daily activities are mentioned , he has no savings .
I am on just the state pension so do not recieve carers allowance
His assessed charge for his day care contribution has increased again.
I wonder if thier expenses are £25.30 per week ??
When the social worker came for his yearly assessment we went through his expenses but what the council think is another thing .
Sorry I'm just having a rant on my sons behalf as he has no understanding and needs 24/7 care in every aspect of his life .
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Tracidu
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I do know that when I queried my son's contribution of £526 per month I was told they could reassess, but it is correct. You may find there is something more you can claim in benefits, but I believe any income is taken into the assessment of contribution.
Thankyou for your reply . Yes I completely understand what you are saying . My Son has lived at home with me for 36yrs so this is nothing new to me , I was thinking how they came to the conclusion of the amount they think some things cost such as £1. 29 for laundry and bedding ect o ? I went through his expenses with the social worker but every year I recieve the same letter with the same costs but just a increase in his contribution , it's like a generic letter that they just alter his payment every year . I know contribution have to be made and I cant see policy ever changing , he still had to pay all through lockdown when all of his daycare was closed, he saw no-one for 16mths , I do all of his personal care . Take care
I am just wondering as you do all your sons personal care finance etc it might be worth getting your son re assessed to see if he qualifies for health funding, where he would be exempt from these so called fairer charges.When my daughter left full time education in 2014 initially I didn't apply for health funding as I wrongly assumed it was aimed at those with clinical or medical needs. We initially were put on 100% social funding and we had the monthly charges to pay out of her benefits. It was only when the team who provided the short overnight breaks said they could no longer meet her needs or pay for a waking night staff, that the social worker suggested we apply for health funding which we did. Despite taking 9 months to put in place we eventually were awarded 100% health funding 4 years ago, which has meant a doubling of her budget and no more fairer charge costs. We even recently got a small refund of charges for the 9 months we had to continue paying the charges for.
Your son might not qualify for the funding but it is worth a try.
Isn't it strange the social workers never really put any ideas forward. My son's just had a reassessment, he's had the small meagre budget to buy in care since 18 (5yrs ago). When it started there was no such thing as a Contribution towards the Care Package. Last year they wanted £8.03, this year £10.03. No increase in Direct Payment! Increases in Gas, Elec, Council Tax, Water, food and all goods really. I stressed myself last year doing costings and now I'm wondering what I can do different to make them drop this charge as I know they can??
Hi. This is definitely a very difficult area and there is a campaign to scrap these charges but it still exists in the majority of local authorities. There is a minimum weekly living allowance and mention has been made of disability related expenditure which is a crucial calculation. CASCAIDR is a charity that will carry out an assessment for you for free or a small charge so check them out. I think they will be better than citizens advice but others may know of other organisations eg mencap however as it is a postcode lottery you need specific advice on your local area. Hertfordshire has a great local group called supporting together. There is also Inclusion London and Bringing us together. Social care warriors. . Good luck.
It wasn't always there and I think it should definitely be scraped. It is an insult to the people caring for their vulnerable loved ones.If people just accept it then nothing will change. I can't go down without a fight.
Hi as others have said make sure he is getting all the benefits he is entitled to. When my son was living at home with me he paid approx £80 per week towards his care costs but was still left with approx £120 per week to live on. Does he get esa or universal credit? If not claim for it asap.
I had the same last year and was livid. Especially as we do the caring. I think there's no point in getting a budget for a care package and then they want this back out of it every week. Because I appealed, this led to me itemising everything he pays out for. We do some things privately like a Nutrition Therapist who I have taken him to since birth and so we have recommended supplements which are not the same each time. The Council does not and has never had to pay for this and a lot of the things we have done for our boys. We have tried to enhance their lives. The Finance Section told me what he is allowed and what he should be taking out of his PIP. I was so angry. But they all seem to mention this £25 that is allowed. I didn't have the time and energy really to do all this itemising but I did as much as I could and then they always came back with what I couldn't and shouldn't be doing.
I then put in a complaint about the whole situation (not sure if it was the Ombudsman).
I run my son's budget and so save money on not paying out for a company's costs. I don't get paid for it. It takes a lot of my time every month. But I save the hundreds of pounds that would go to a company and we pay for good helpers.
Social workers hardly ever help. There are only a few good ones.
But don't let them get away with that charge if you can help it, cos once you do, it goes up every year.
There were a few parents I knew last year that said they hadn't the energy to fight it and then the money the authority wanted back had increased.
So sorry they brought so much stress to you over this , I find it ridiculous that they give the budget then take some of it back , I've always thought take it out at source ? I could fill a skip with amount of paper work and receipts I have had to keep . Just what we need aswell as careing 24/7 ??. I have brought this up on various surveys I get sent but that's as far as it goes , it's not just the money as such, it's the ridiculous amounts they calculate for expenses even though its all discussed at the annual review? , thankyou for your reply .
Dear All Inclusion London have a current. Campaign on this issue and today asked me to write to my MP. I suggest you all take a look at their website and submit a letter which has been pre prepared or write your own
Oh yes, I know that feeling about paperwork. I feel I'm spending my life trying to get my house sorted especially the papers. I don't think it is even going to be possible for me to get on top of it and try and have some kind of life inbetween.
I thought I heard somewhere that people in residential care such as a school where they support individuals full time with their care needs, accommodation, meals and fuel bills take all income off the individual except approx £25 per week for personal expenditure. The reason I am saying this is I wonder if you you are getting accessed the same way? I am sure the finance people have calculated wrong in your case as £25 would not even cover your loved ones food and fuel bills. Get someone such as the citizens advice to check it out for you. If they still won’t change just say you can’t cope with this anymore and they need to find a home for your relative. They will soon realise how cheap you are!!!
Yes , I usually get told at reviews I'm doing them a favour which I find patronising to say the least , they also say its policy and they cannot do anything about the charges. I don't know if it ever comes up in meetings behind closed doors in government or local policies but It's been the same scenario for all the years I've been caring for my son. The levels of expenses he has been allowed has barely changed . I also fill in questinaires and letters to send to my MP about various subjects to do with learning disabled adults and carers but nothing changes .
It’s a crazy system. My son is at residential college. He is funded by NHS continuing healthcare, not social services, and apart from the care component of PIP he doesn’t have to contribute anything towards his care. So all his UC and mobility part of Pip are his to keep. It’s a very unfair system. He’s due to move on in August though to residential care and I think the CHC funding will be re-assessed.
You will be re assessed every year if under health. We moved over to health 4 years ago when my daughter was age 22We have just had our funding review, and unless needs change considerably you will keep it. We are on 100% health funding most get 50%,, which means when she moves into supported living in the sumner she will be given a generous budget.
My son is 100% too. He’s been CHC funded since he was 19, he’s 23 now. We’ve not had a review yet. My son is in residential college and moves to residential care in August (fingers crossed!) just waiting for the provider to send the offer and for it to be accepted. It’s out of County, 3 hours away, but it’s so perfect for him. I never thought I’d find anywhere. I’ve looked at so many places my head is spinning!
I know what you mean. My daughter will be age 27. It will be hard, but we know if we don't make the decision now, the onus could be on our sons in a few years. The pandemic changed everything. We were without support for a while, and had to cope through lockdown more or less on our own. We all kept healthy and Covid free until last week when 3 of us got covid although it happened when our daughter on her short respite break. So she avoided it.We have found a new build flat within a supported community with 24/7 support. She will have benefit of her own flat and support with communal garden, outside space and dsy care.
It is only 20 minutes from home close to her short break respite bungalow, and she can attend her day centre until it closes later this year. She will then attend the onsite day centre.
I hope all goes well for your son and the funding review runs smoothly.
That sounds lovely. We thought about supported living but I didn’t want the faff of duputyship if there are tenancy agreements to be signed, as he doesn’t have mental capacity to sign them. I know what you mean about the other children. I don’t want my other kids to have that responsibility. The place we found is a group of cottages and our son will have his own cottage with 1:1 support but it’s still registered as a residential care home so no tenancy agreement. There is on site day services and absolutely loads of outside space which is great, where he is now he lives in a huge house next to his college classroom set in 50 acres of forest. It’s the most wonderful place and I know he’ll miss it. It’s all so stressful and worrying though x
That sounds lovely as well. Residential these days isn't like the institutional setting of the past, and now similar to supported living.We initially looked at a residential setting very close to where she will be living. I got the feeling the health care provider who deals with the budget thought might be too expensive and suggested this new build instead.
My daughter also has no capacity, is non verbal, and no understanding of the world, but am told I can carry on as before as an appointee, but will lose carers allowance.
The company who owns the new build also have 2 residential homes close by, so if this doesn't work out she can potentially move in there. Getting apprehensive, but looking forward to kitting the flat out from scratch.
We will also visit, take her out, and keep her for weekends. We in effect will become the respite.
Some of these residential places that have been mentioned here sound great, my son is 37 in September and I know I must get him settled somewhere soon , it worries the life out of me to find the right place , we have nowhere suitable locally. I am continually on the Internet trying to find places , any suggestions for placement I would be grateful for , he didn't have a great experience being away from home when he was younger ..He went to a mencap college in Somerset when he was 19 on a term bases for 3 years ,
At the end of the course he had lost a lot of weight and was very anxious , the head of the college advised me to take him home as the social worker that came down for his transition review couldn't offer a suitable care placement for him . I know this is off my original post subject but I feel its all part of funding . Thanks
As far as I know supported living with a tenancy is more secure as sometimes for whatever reason a residential home might close. You here about it with the elderly. However sometimes a placement doesn't work out for a variety of reasons whether supported living or residential home, and often you here about an individual having to move several times before the ideal placement found.
Additionally our young people would ideally be in a house or residential setting with those of similar ages aimed at those with disabilities or mental health issues rather than those older residents.
I imagine we will see how this goes, as my daughter's needs are complex and if it doesn't work out we will bring her back home until another suitable home can be found.
Hi. My son had full health funding but lost it as his issues were around communication and behaviour. He doesn’t have any physical disabilities. Any improvement in managing his behaviour Was seized upon by the health authority. I managed to get him jointly funded but this is useless from a social care charging point of view. You need 100% health funding to be clear of charging.
This is my worry. My son doesn’t have physical disabilities either. The funding was given due to extreme challenging behaviour. He does have epilepsy. There’s been no review as yet but I’m certain it’ll end up jointly funded.
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