PIP form blues because DS is 16. AIBU to think this is ridiculous? SEN.

[DeloresJaneUmbridge]

I have a PIP form for DS and am struggling with it as it’s so focused on physical activities.

DS is autistic, he has ADHD, Dyspraxia and dyslexia plus learning difficulties (mild). He currently attends a special school .

He hit 16 and suddenly we now have to claim PIP and not DLA although they will continue to pay his DLA until we have a decision about PIP.

Currently I claim Carers Allowance plus the DLA which allows me to stay home and support him. He needs lots of support still and even though he attends a special school I still get calls when he melts down.

One of his biggest issues is lack of sleep...he has never slept well and yet the form doesn’t even ask about this but it’s a massive issue for us and impacts upon everything else.

Is it worth me putting in a covering letter for the assessor explaining his?

He needs prompting and supervision in all areas.

If he melts down it’s a nightmare and he needs someone with him when travelling. But this is hard to word, it’s not a personal preference, it’s because he panics in uncertain situations. This leads to melt downs and I know from school that although DS is not physically aggressive to anyone (except himself) he can appear frightening to others.

I have spent the whole of DS’s life trying to support him and boost his self confidence. It’s slow going and yet in a few short weeks I will have to sit with him in a face to face meeting and point out all the things he CAN’T do. It makes me so angry because in no other area of life would we put a young person in such a situation.

Am tempted to try and send him in to the assessment alone and see how the assessor gets on with an anxious kid with awkward social skills who hits himself when distressed. Except DS will point blank refuse to go in unless I am there too.

Why are we putting 16 yr olds through this, he’s still in school, he’s emotionally and psychological at the level of a 10 year old? He’s taller than me but if something upsets him he will burst into tears.....we can be in the middle of Tesco .

Surely 18 would be a better age for PIP.

We still don’t know what will happen long term but at 18 might have a better idea if we see how he copes with college (he has a place with a sepcial needs department at the local college improve social skills and self confidence) . At 18 I will have a much better idea of how he is going to cope long term.

Sorry am venting but just losing the plot with this form.

No advice from me but it may be worth getting this moved to SN chat.

I have ADHD and they didn't award me PIP despite getting DLA previously. Assessment was a joke. A patronising twat asked me if I went to the pub or had a Facebook account.

When I had my letter awarding me zero points, they mentioned that I wore makeup and was "an intelligent, educated young woman".

Alright, what does that have to do with me having zero executive function though?

I appealed it and the same happened. A representative from the DWP said "I need to point out if you find in Seline's favour, we will have to pay her £1,000." (what they owed me for declining my claim). That seemed to carry more weight than my medical reports.

No advice OP but it's shit.

I've done this for my then 16 year old last year, he has asd.
You need as much evidence as possible, from school,his ehcp,any professionals that have had anything to do with your son in the past year.
Write as much added info as well on a separate piece of papers.
Try to fill in the form as best you can, also are you his appointee? If need you might need to look into it.

Ive heard it being refused because a child passed their GCSEs, I currently get dla for dd when she has to go on to pip I wont bother. Doubt she will get it despite having asd.

Candy me having qualifications was used against me, so that's definitely true.

I have a son with autism and learning disabilities and I am dreading this. At the moment my son is on high rate dla - he is 6.

I receive pip for myself, I have several chronic health conditions so I know how the form and process works for pip.

I think all you can do is fill in the form as best you can, and as fully as you can. Where your answers don’t fit in a box or if you can’t tick a box put a length explanation and expand as much as possible. Provide lots of supporting evidence.

My DS had a home assessment and I was named as associate for him so I fill out all forms etc.
We got pip without really trying as visiting at home and presenting all paperwork was enough.

CAB are very helpful when faced with these forms. They usually have a specialist who can support you. Worth a punt. Some have gone to tribunals with claimants as well as f2f pip assessment.

Did this 3 years ago with ds, sent copies of everything, from the day he was born (15 weeks early) so all his early years stuff, autism diagnosis to educational statement. OT, PT, MRI scans etc.

If DS is in special ed, does he still have in put from Community Paeds? So most recent clinic reports etc.

Pip assessor told me he was face to face assessed because DS has physical issues, he has Hip Dysplasia & lung function issues. I’ve heard that young people in special ed are automatically entitled, but don’t know how true that is, but a couple of ds’s school Peers were awarded on paperwork alone, no face to face.

When filling in the form, include everything you have to do for him, even if you have to attach additional sheets, and you think it doesn’t fit their boxes.

Copy everything you send to them including the forms, & send them next day, recorded, signed for delivery. I have a friend whose forms they lost 3 times.

When we saw the medical person, she spoke almost entirely to me, just asked ds the odd question, he did his best startled rabbit impression & when the result came through he was awarded an indefinite award.

Ask DWP for a copy of the medical report, it gives you an idea of where the assessor was coming from & helpful if you need to challenge the result!

Good luck x

My son got As at gcse and is finishing a levels now with a diagnosis of adhd/asd. He also drives and has a job.
He can't cook a meal, just about manages to boil a kettle safely. Can't manage money or make calls or go anywhere without being shown where and how to first.

Is there not a space on the form for additional information? If not I think you should just write it all down and send with the claim. Good luck x

Put as much detail as possible on the forms, use extra sheets if needed, as this is what they will look at if you need to go for mandatory reconsideration and appeal. Make sure to keep copies of everything.

I made the mistake of trying to get my son to fill the forms in himself - since it's supposed to be in his name at 16 - obviously with me helping him - he tends to underestimate how much his ASD affects him and also got fed up very quickly, plus, as you say, it's so hard having to get them to focus on their difficulties when you spend so much of your time trying to boost their self esteem, so he ended up not putting enough detail in as I (stupidly!) trusted the process and thought the assessor would get the information out of him at the interview.

Wrong!

The interview is where they try to find out all the stuff you CAN do in order to deny your claim if at all possible. So make sure anything and everything he CAN'T do or can only do with lots of support is in black and white on the forms as they don't like you adding in information afterwards.

Also, avoid ticking the 'sometimes' box as they will focus on the 'sometimes' he can do something not the 'sometimes' that he can't. If there is something he struggles with, tick 'yes' even if how much he struggles varies.

My son was awarded zero points and unfortunately this was upheld at appeal. However, it sounds like his challenges were not quite as significant as your son (mine only used to get lower rate DLA which we felt was fair) so you should go ahead and apply but be aware that you will likely be turned down at first and have to go through the process to appeal.

Do you have a local ASD support group or, if you are registered as his carer, your local carer support group may have someone who can help you with the forms - just to make sure you get absolutely everything in. I wish we had done this. CAB definitely worth a try too.

The assessment wasn't actually too traumatising for my son as the assessor came across as lovely and friendly and just having a nice chat with him... while typing a load of rubbish on her keyboard but at least he didn't know that.

He should get higher rate mobility because he should score 12 points due to not being able to make a short familiar journey on his own safely. I don't know much about the care component but there is a (small) section at the end where they ask if there is anything else you feel they should know to fill in any gaps in their questions. You should make use of this and continue on another sheet if necessary. You should also get statements from (if possible) his specialists/teachers/GP and include these. Don't worry about putting in too much information, put down EVERYTHING. And yes, it's horrendous that they're putting you and him through this. Perhaps try to frame things as positively as you can in the interview i.e. instead of 'he can't get to school without a taxi' you could say 'PIP will allow him to get to school safely'. Admittedly the strict structure of questions in the interview will make this difficult but perhaps you could ask for the questions beforehand (they really are structured) to see if you could prepare positively framed answers? I have no idea if they'd entertain this or not but it's worth a try. Best of luck.