Appeal

[Tracemoz]

I want help with my appeal to challenge send for stopping my sons direct payments and telling me to pay for his activities myself through DLA

[Foxhill]

Are they asking you to pay for activities or a person to assist ?

[Tracemoz in reply to Foxhill]

He had direct payments which was at first used for a P A after 3 Pa it was hard to get another so social worker says use the hrs to pay for one of his groups he uses that had set up a youth club after lockdown which I have been using plus any holiday schemes this group charges over £15 a hr for its services so I was glad I could use it for that as my son loves going but know it’s all stopped and I will have to pick and choice what he can go on and what I can afford

[Tracemoz in reply to Foxhill]

Everything now stopped all direct payments

[Tracidu]

Hi Tracemoz This is very worrying ,? could you tell me a bit more how this has come about . ? Did you have a review? Do you mean to pay for his activities from your sons DLA . I know there is certain criteria with direct payments .

Hope you can get this sorted out , there is enough stress with careing for our Learnind disabled ,

[HolisticMum in reply to Tracidu]

We have a 'Plan' from the outset that gives us what we can do with our sons money. The trouble is they keep moving the goalposts. When we started with our eldest son in 2010 there was much more flexibility with it to pay for activities like rebound and yoga. With our second son they just seem to want us to buy in the carers/helpers. I challenged them this year when they wanted him to pay towards 'care costs'. I said we are doing all the work and they want money back for it!!

I did a lot of costings of what we pay out of his money like therapy, supplements etc. They said that couldn't be included. But this is part of his daily life. Then they wanted more costings, I gave up and did not do anymore and I've left it as it was stressing me out so much getting all the info together. I daresay they'll be on my back again but it made me feel ill trying to tell them all about our situation and they were telling me, there's DLA to pay for this and that, can't include council tax, can't charge rent when they live with parents. Most children pay towards household costs when they go out to work. I was livid.

Don't let them get away with it. They are in the wrong and picking on the vulnerable.

[Tracidu in reply to HolisticMum]

My son is 37 ,so I have been caring for him since birth , he has severe learning disabilities and challenging behaviour , Global development delay .. he recieves a direct payment which I manage . As you said , when it was set up when he was 21yrs old it was ok as he had a named social worker for his yearly financial assessment, now our council send a different SW every year who have never met us , everyone one of them seems to have different interpretations of the rules , often ending in a long wait for a decision to continue with the careplan that was agreed . The last SW completely messed up his care plan which was so stressful. The care agency pulled out as they couldn't come to an agreement with her , the one that lostout was my son while they couldn't agree which didn't seem to worry them , My Son is never going to change unfortunately so to go through this stress every year is horrendous. I worry every year that they will take it away or reduce it as they have done for Tracemoz on the original post . I had no care support for him during the pandemic which I use for daycare and respite , I do all his personal care myself , he will always need 24/7 care .

[Tracemoz in reply to HolisticMum]

Thank you they don’t care do they I like to see them pay for specialist things out of there money and see how much they have left to live on

[Tracemoz in reply to Tracidu]

Yes I had a review in may which had all same points in that previous reviews had but this time his payments were to halved then terminated from today and if I wanted him to access any groups I could pay for it myself with DLA my friend had near enough the exact same review with the same outcome no one else we know at school has had their hrs terminated it’s seems to be just us and it is unfair

[Tracemoz in reply to Tracidu]

Yes it was direct payments to be used for PA and holiday clubs and a youth club club on a Thursday night that gives me a bit of respite aswell but it will all stop as it’s very expensive to use and I will have to pick what I can afford now

[Tracidu]

I'm so sorry to read this Tracemoz , I hope you can appeal thier decision. Have you spoken to mencap ?

[Tracemoz]

Hi I’ve appealed the decision but they upheld it so I’m going for stage 2 now