Claiming Personal Independence Payments (PIP) - autism - case history

Posted 7th Mar 2017
I thought I would post a brief case study of my application for PIP in case it helps somebody. My son has severe autism & turned 16 two months ago - which meant he had to migrate to PIP from Disability Living Allowance. I was slightly concerned about this application as I had read that the PIP assessors were briefed to be fairly tough and that many applications were refused at first & had to go to appeal (though the majority of people win a more favourable outcome on appeal).

Here is the guide to applying from the National Autistic Society - pretty useful. I had a month to apply after my son's 16th birthday; if you miss this deadline your DLA gets stopped and you won't get PIP until you apply for it. I had previously been named as my son's authorised agent as he would otherwise be unable to apply in his own right or handle his own finances (simply not capable). The presumption is that a 16YO WILL be able to act for himself, so you get sent a form to elect yourself his/her agent & then the DWP send somebody to your home to meet both you and the one with a disability & assess whether you should indeed be given the right to act on his/her behalf; I guess that happened about October/ November & was a perfectly pleasant/ easy meeting.

So I made the phone call application as per the NAS guide above (Stage 1) and this is nothing to be worried about, just a short phone call confirming the applicant's details, his/her disability & the fact that you wish to claim PIP.

Stage 2: within a couple of weeks I was sent the claim form & you get 1 month to fill it in. My advice here would be to read the points guidance @ NAS ie top right box on
[PIP: the points-based criteria
Read the full details of the points-based criteria for Personal Independence Payment.
Download now ]

So now your task is to fill in as much relevant evidence as you can honestly use to substantiate your PIP claim. I found this a long & onerous task which took about 8 hours of thinking & writing time. But it was straightforward enough to complete the form. My tips here:
1. name at least 3 relevant people who can substantiate the disability. In our case I used our social worker, GP & the teacher at my son's special school who knows him best.
2. give more information, not less - this is a tick-box exercise to substantiate the claim - your first bit of evidence in a box may be deemed irrelevant so give a few more bits of evidence as well.
3. Provide relevant paperwork. I included the lastest EHC Plan & a letter from our GP confirming the autism diagnosis.

So I sent off the form. The next step is normally a face-to-face assessment but our claim was approved without the need for this after about 4 weeks. I don't know if the assessors contacted any of my 3 people but I guess I will find out in time. My evidence was fairly comprehensive. My son was awarded the same levels for disability & mobility as on his old DLA claim. Rather surprisingly, the claim was only approved for 12 months - a surprise because autism doesn't really improve over time particularly once the person has turned 16. (Our DLA claims were approved for 5 year terms.) So I rang up the DWP to query this and was told that virtually nobody is getting claims approved for longer than 1 or 2 years - rather unwelcome news given the time involved, not just for the autism that will be exactly the same in 12 months' time but I feel sorry for people with (say) amputated limbs or other incurable conditions. Anyway, at least it wasn't just us! So now it's a simple matter of making more copies of the claim for eg to Cloud so that the same work next year will take 25% of the time - 2 hour scanning job coming up later!

Hope it helps somebody who might be worried about the PIP claim process - it's not too awful but is IS quite time-consuming.
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A good friend has just gone through the claim process and had help from someone from the claims agency? (who she requested the forms from) to help with it all. Apparently not too bad a process considering. They also backdated it all which was good for them.
I suppose it looks complicated and has to be thorough as it is tax payers money that is being awarded and has to be fully accountable by the government.

Currently helping a friend claim for attendance allowance, bit of a slog, but all relevant information that is being asked/requested of her.

Thanks for the post, hope it encourages more claims for people who are entitled.
First things first copy everything.Then copy everything you send them ie all the forms and list all the paper work you sent them each and every time.Keep the info for ever.
I believe that they do not get any records from your doctors etc only what you send in. As this will cost them money.
They interview you and make a judgement on you, to see If you are telling the truth or not.
If your claim is unsuccessful do not give up, go to a tribunal. You will see a judge and a doctor,Who will have your records and make a fair and informed judgement. in most cases they find in your favor.
Im a carer for a friend who gets PIP.
The first step for us was to get her ESA upgraded to support group @ tribunal.
Second Claim for DLA / Now PIP.
Granted for 3 years enhanced rate as wheelchair bound etc.Plus 1 year extra as took that long for claim to be delt with.
Just reclaimed and got 3 more years.
She was very distressed and nauseous with vomiting on a daily basisas soon as the dredded brown envelope arrived on the door mat.
I though these benefits were there to help people not harm them.
Just my opinion that is.

Good luck with your claim its hard work, but will make all the differance in your sons life.
Never give up.
Fight them to the bitter end.
I also know someone who's currently in the transition from DLA to PIP - as above photocopy everything and if you're asked to submit something later on after your face to face assessment, like a letter from a doctor for example send it tracked.

The Government don't make it easy for the disabled, actually it's a disgrace when you consider the billions frittered away on foreign aid to ungrateful countries - at times it ever so slightly makes me ashamed of this country. True, you have those who abuse the system but they're in the extreme minority - as the Tories found out so they make it harder, more stressful and demoralising in the hope that the disabled don't bother claiming.

Its horrendous how complicated the claim forms are, and I have notice … Its horrendous how complicated the claim forms are, and I have notice they now wont award a claim for more than 18 months. My kids are all under 16 right now, so they are still on Disability Living Allowance but my eldest boy is almost 16 and as such I know its going to be PIP..Some advice would be to photocopy everything you have said so you can repeat it in 12 months, its unlikely the form will change you will only have to update dates etc... I understand that its been made more difficult for people to con the service, but what has in fact happened is it has made it harder for people in real need to get the right support, and people can still con it.Also very kind of you to post this, and ignore the oncoming torrent of abuse from certain members.

He's currently suspended, safe for now ;).
I've just done the transition from dla to pip for my 18 year old. It went through very smoothly without an interview or any bother at all. Then again I have filled in numerous similar forms so I guess I know how to word it these days. Don't be daunted by the forms, they aren't that bad. Include every bit of supporting evidence you can think of
phew! - scanned in 20 documents earlier & sent them to the cloud just in case I lose the photocopies etc - took about an hour so not too bad & I got some useful exercise going up & down stairs changing the pages
I know how you feel, luvsadealdealdeal.
There is always a worry between submitting the relevant claim form and actually receiving the benefits.
Maybe you haven't filled it in, or not put the right info on it, that kind of thing.
We recently applied for DLA for our 7yr old son, who has moderate ADHD and started some medication late last year.
Took 18months in the CAMHS system before anybody told ys we should try to claim DLA & Carers Allowance.
People don't realise how difficult it is on a day to day basis, the struggle to try and keep from harm, to himself or others, the breakneck speed of his movements inside or out, to try appear "normal" to other people, school kids & their parents, who just think he's an unruly noisy naughty boy.
He's the sweetest, loveliest, brightest kid you could wish for.
It's quite heartbreaking to wonder what people think. You try not to but, in the end, it shouldn't matter, but you can't help but worry about it! Worry about his future, his friends, his life after us.
Im glad you got the benefits changed over.
I know how it helps with the things you need to help you lad. The little things & the big things all need paying for.
Take care.
Edited by: "TruffRuffian2020" 3rd Apr 2017
I have ASD and applied for PIP at the beginning of May,just received a letter from DWP last week(20th June) to say they have all the information they require to make a decision,even though i haven't been for a F2F assesment.Had anyone else had this experience and if so,how long does the decision take? Thanks in advance.x

I have ASD and applied for PIP at the beginning of May,just received a … I have ASD and applied for PIP at the beginning of May,just received a letter from DWP last week(20th June) to say they have all the information they require to make a decision,even though i haven't been for a F2F assesment.Had anyone else had this experience and if so,how long does the decision take? Thanks in advance.x

As per my post, no interview was needed in my son's case as the evidence was fairly substantial.
Was strange as i was at my GP today and he said he'd just received a letter from ATOS,this is after i'd received the letter from DWP.Strange.I gave a detailed application and gave my GP and psychologists details,hopefully that is enough.
1 they are not there to help you, they are there to save the gov money
2 they get paid a bonus if they reject your claim or reduce the payment
3 you must use the correct language about your condition
4 they are saying they look at how your condition affects you so think about that in answers
5 they will look for loop holes in what you say, so if you say sometimes they will calculate that as not an issue
6 most times will be seen at an excuse to down grade because you get good days

Be careful who you get to help you, they must have experience, one woman with mild learning difficulties, can not work due to arthritis but her form was filled in incorrectly she go no points, Dr has given her sick notes for last 8 months but she is still on job seekers, because the nice lady at the job center told her not to go on sick as she would loose all benefit for 6 weeks till they sorted out sick pay!!!!. They then found her 2 jobs, no interview was needed she just got them (some work program ?) both times sent home after a few hours, both employer say she is not fit to work, due to learning difficulties and inability to do physical work
Lorna.Tracey50 m ago

I have just attended a face to face interview for my son on the 4th of …I have just attended a face to face interview for my son on the 4th of October. He suffers from High Functioning Autism. I was so nervous from the time I received that appointment letter, until the interview was over with. I am his appointee, so was able to help further explain things for him, when he was asked a direct question. I must say, that the interview wasn't as bad as I'd thought it would be. Obviously we won't know the outcome until we get that brown envelope through the post. I know that a lot of people are worried about these face to face appointments, but it all depends on who does your interview, I guess. My friend's daughter had her interview a month ago and got her decision 16 days later. She turned in a substantial amount of evidence and she was still worried because her daughter is High functioning, with a school IEP but not an EHCP. Her daughter was on High rate Care and lower rate mobility while on DLA. She's now been given Middle rate care and no mobility but it last until 2027. She just about made 10 points. She's happy and won't be appealing the decision.I'm not too sure what to make of my son's interview though as the lady was very nice to him and sympathetic towards him. She even dimmed the lights for him, after I told her about his sensitivity towards bright lights. I'll keep everyone posted when I get the decision. Please go to your appointments and try not to over think the situation. A little test that she gave my son at the end, I think it was a trick test though. She asked him to take 100-7 then that number -7 then that number -7 about four times. she asked him to spell WORLD backwards. She gave him 3 three letter words and asked him if he remembered them and to repeat them to her. Then she gave him a sheet of paper and asked him to fold it three times . What this means? I don't know but it probably means that he's not Autistic enough. The maths is something that a 4 year old could figure out, so not sure what that's about. Keep the faith people and remember that no two cases are alike.

Good luck. Don't worry about those 'tests' at the end though - they are certainly not standard or recognised tests of autism. If anybody tried to say that, you could appeal it - most appeals win.
The stories in this thread should serve as a reminder of what a conservative government brings to those that are not very wealthy.

Good luck to everyone who is going through the pain of these applications and assessments.
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