MOVING FROM DLA TO PIP

[Countrygirl3001]

Hi all was wondering if anybody could help, my son turned 16 in December and like everybody else who has been through this process I filled in the forms to be his appointee, he has no understanding of money, if I tell him I have £50 to last me the week for food and things we need he would take £49 and wouldn’t understand that I’ve nothing for food, he is autistic and has a ehcp and goes to a sen school, I’m a mum of 4 and he’s the youngest, he doesn’t cook I have to bribe him to have a shower and he has REALLY long hair so I have to wash his hair and his top half, he has no understanding of personal hygiene and would live in the same clothes for months on end if I let him it’s actually a struggle to get him to change his clothing and I get verbal abuse every time I try to get him to change, he would happily wear things till they are rag, he’s never slept either and been on melatonin since he was 4, 10mg every night and still that doesn’t keep him asleep, I have to stay awake at night till I know he’s in a deep sleep as he’s been found in the kitchen trying to open cans with a huge knife, tried to cook burgers and bacon in the toaster and fused the whole house,
lile I’ve said I’m his appointee, im on a group on fb and I asked about the assignment because he won’t talk, he doesn’t even talk to his siblings if they call or me if he has a choice 😂 at school he takes himself away from others even in his class of 8 he sits outside the classroom where he has a desk, I asked on the fb group when the assignment happens as I’m his appointee will he have to speak as he won’t, a women msg me said he will have to they won’t talk to me and he will have to say his needs, he won’t, he doesn’t understand his needs or how different he is to his siblings, I’ve called pip they said I’m his appointee so it’s like they are talking to him, but like I said this women msg me of fb saying that’s wrong and he will have to talk
can anybody please give me advice or if you been through the process and how it was for u
TIA

As you are his appointee you will speak on his behalf .
I'm just going through it at the moment as I'm my sons appointee and when they've phoned I've spoken for him and not once have they asked to speak to him.

hi 👋 do you mind if I ask if u have had his assessment yet? I’ve been awake all flipping night because this random women msg me saying he would have to say his needs, he finds it hard to understand his needs, more than twice a week he tells me he’s gonna hurt himself then 10mins later completely forgets he’s said it or he says he was joking, he said it a few weeks bk at school and they called just to say he’s bk saying it again, I have a fantastic relationship with his support officer at school who known him since he was 7 ( off topic sorry 😔 I talk a lot when stressed 😂
like I’ve said this women msg me out of no where and said what she did so I’ve been up on google seeing if it was true as the women I spoke to at dla said different.. he doesn’t even go to his paediatrician appointments anymore it became to stressful for him, she is also head of the autism board in our area and on her advice it went to telephone appointments and she could just talk to me, I’ve put he details down on his application so if they want to right to her for evidence he won’t talk I know she will back me up, also his support officer at school has said she will happily talk to them and he details are down

I had someone who was doing the report phone me to ask me a few questions.I
asked what happens now and she said she was doing the report to send to the assessor, that was a couple of weeks ago and I haven't heard anything since,it's a nightmare waiting to see if he's go to have an assessment because my ds sounds exactly like yours.

Sounds like u have had your assessment as they call and ask questions do a report the company that does it is call capita and then they write the report and send it to the person at pip who then makes the decision on what points u got from the rwport ( it’s only a suggestion and it’s up to the decision maker what level you get) can u tell I’ve been awake all night on Google 😂 this women msg me bc I asked the question on the fb group and people said the same as you then she msg me saying the opposite, why they make it so hard is beyond me, it’s not like our children ( bc that’s what they r) are going to just wake up one morning and not have ass and all the issues that come with it, in fact my son has got better he’s got worse as he’s got older, at least when he was small I could reason a little with him, now it’s just meltdowns and screaming and abuse and threats to hurt himself and the list goes on

Hi, I wouldn’t worry too much about this woman’s experience. I am my sons appointee and spoke for him throughout the assessment, at no point did they need to or request to speak to him, it was straightforward and he was awarded the equivalent to his previous DLA award.