to tell you of my experience with PIP and Autism

[needmorespace]

Following a recent thread, this isn't really an aibu but I would like many people to see it so posting here - don't really want to be flamed as bu
My autistic son had a lifetime award of DLA and I knew the day would eventually come when he would have to move over to PIP and I literally dreaded it - physical dread, anxiety/feeling sick etc as I was so sure he would lose this lifeline because of the horror stories in the press and even on mn.
That day came just before Xmas last year - I spent hours working on the claim form. I didn't have any recent evidence to provide as once my son left the education system, all ongoing support from CAMHS and Social Services fell away.
I was told that everyone has to have a face to face assessment and I tried to prepare my son for this eventuality.
Anyway, the medical assessor rang me - she was absolutely fabulous - and, after an lengthy telephone conversation, she told me that she would be recommending that no face to face would be necessary.
I today received a letter telling me that my son has been awarded PIP at the higher level for both areas for ten years. That is ten years of not dreading the envelope falling through my letterbox. Now, I know I will have to go through all of this again in ten years but I wanted to post today to give other people some hope.
I was so scared of applying based on all the horror stories in the press etc that I almost didn't bother to re-apply on his behalf. But I am so glad I did.
He is deserving of this support as are thousands of other people - it is part of the scaffolding that allows him to function day to day.

And I really hope that my experience will encourage others to apply even if they feel the process is arduous and to not be put off by all the negative press - I feel nothing but anger that people that genuinely need this support have to go through this process but there are medical assessors out there who are kind and receptive to the difficulties that those with Autism have.
I could actually cry with relief and I hope my experience will encourage others who are in need of support or supporting children to apply.

I had similar with dla I was told how hard it was to apply. I applied (filled the form in myself) sent hardly any evidence (no proffesional wrote anything on the form just a couple of paediatrician letters) and I was awarded within 3 weeks no questions asked. Middle rate dla and low rate mobility. So always worth applying.

My son got zero on the PIP assessment despite a home visit to assess if he was capable to manage his own money - it was assessed he wasn't.

He is not able to travel anywhere he doesn't know without support. He is not able to make a cooked meal, there is no way he can do this.
He still has full support in sixth form.

It's now gone to appeal. I'm still awaiting a date, five months later.

He is 16.

I wonder how many 16 year olds can travel alone to unfamiliar places? Or manage money?

Glad you’ve had a good experience OP.

I did, I worked a Saturday job saved up and travelled widely at 16. I managed my money.

I was also able to cook.

At 17 you can start driving lessons.

Plus my son was always on the low end of attendance at school due to anxiety. Now he is in Sixth Form it is easier for him. It has taken a lot of time and effort to get this far.

My son doesn't see any problems, which is what the man from HMRC assessed. He says it clear that he needs extra help.

But of course with autism it isn't always visible.

I also know someone whose son was assessed as being capable of managing his own money and he was awarded the highest level of support.

Well he is useless at managing his money and spends it all within a week of getting it. She has no control over his spending. And he gets violent with her when he runs out of money so she ends up subsidising him to keep the peace.

It's a lottery.

My mum is on DLA and will not be reassessed for PIP because of her age. The DWP have been supportive of her at all times since she first claimed 20 years ago, they even contacted her recently (some one from hospital must have referred her for review after a recent appointment) and upped her level for personal care without us applying/asking.

On the other hand, my dad was physically was much less capable than my mum, housebound attached to oxygen for the last 4 years of his life, suffered a stroke, took well over an hour to get up and dressed in the morning due to not being able to breath, needed a stairlift/wetroom/etc and never got the same level of DLA for personal care. It grated on him a bit, not for the money, but he felt his greater difficulties weren't being recognised officially.

We didn't appeal it for dad as we had enough problems to deal with and it didn't put them in any financial difficulty as they owned their own small terraced house and lived frugal lives anyway. They were also fortunate to have children close by and willing/able to practically support them. It shows that while the system probably works most of the time, people with genuine needs and no family support can either slip through or be let down by any process in place.

@PrettyLittleThing DLA is nowhere near as difficult as PIP, it's like saying DLA is swimming one width in your local pool but PIP is being in the Olympic swimming team.

Sorry, DWP, not HMRC.

I agree with BlankTimes

IME, it's the assessor's and DWP staff's (OP's excluded!) non-understanding of invisible disabilities that causes the problem.

That and all the erroneous assumptions that because the person can do A then it's A FACT they are also capable of doing BCDEF and halfway to Z.

Then there's the physical assessment. Because my relative could on that one day and once only could touch the skull behind the ears with fingertips, they were assessed as being perfectly capable of washing their own hair.

Then there's trying to explain variable conditions.

Then there's the assessor "misunderstanding" saying the person said one thing when they absolutely did not.

If anyone's got a face to face coming up, please have it recorded, that way the "misunderstandings" don't happen.

I'm delighted for you OP, that's the way it should be, assessors who know their stuff.

However, when they don't it's a real problem and for people who cannot advocate for themselves, it's very difficult to find help.

I had the same result OP. DS is autistic, in special school, and he was given an indefinite award of DLA (HRC, LRM) at age 4. When he was 18 he was transferred to PIP and got enhanced rate for both daily living and mobility, with a ten year award. He never needed a face to face assessment. We did have a lot of reports though, as he got recent ones for his EHCP transfer. And I wrote lots of supporting evidence on his forms.

TBH most of the other students at his school have had no issues with the PIP transfer - obviously they are already in the more severe category to need a special school, and being in the education system means they have lots of written evidence to back up their claims.

Congratulations!

I was in a similar position 2 years ago dreading the transfer from DLA to PIP and took many hours of completing the forms and evidence of my sons disability he was getting middle rate DLA and low rate mobility so when the letter arrived stating he was awarded high rate PIP for both components and for 10 years I was ecstatic and actually cried as I felt that who ever read the forms I had completed really understood how hard life is for him and us.

I did my brothers who had severe learning disability and likely undiagnosed ASD as he cannot communicate with people, about 6 months ago, I kept on putting it off as wasn't sure if I would do it right. I didn't put in medical evidence just answered the questions honestly and spent hours filling out the forms, managed to get a sore wrist for ages after.

I stated that if evidence was required that they contact his key worker at care centre or gp. Four weeks letter he was awarded PIP. I really didn't have much hope after reading many a scare story online but glad it worked out for him as he has no other source of income.

My son has written evidence from his primary school and secondary school. He transferred successfully from from a full statement of SEN to a full EHCP. He would not have been able to be in either mainstream or special school without either.

Yet he still got zero.

Not all those with autism have SLD. In fact very few have.

I would be completely aghast if someone diagnosed with SLD was not given full PIP.

I was utterly terrified when I got the letter. Long term mental health problems and congenital heart condition. I have been recieving DLA for about 10 years. I did have to have an assessment but was awarded PIP enhanced care and standard mobility.

I think reading the stories makes you scared.

Unfortunately it depends very much on who you get handling your claim. A reasonable person = an experience like OPs. A knuckle dragger = stories of people being declared fit for work in the intensive care ward.

It's nice to read of some good experiences with PIP. Our 8yo son has a lifetime award of HRC & HRM DLA, and it is already a concern to me that he'll have to switch to the 'dreaded' PIP when he turns 16. I do hope we have similar fortune to be assessed by somebody sensible at that time.

My ASD Ds(21) had a lifetime DLA award of middle care/low mobility. I filled in the PIP forms and emphasised that travelling independently was a huge issue and couldn't be done without planning and rehearsal etc. We had to attend for assessment. I fully expected to get no care award and jsut retain the lower mobility rate, which would have been a fairly large drop in total award. Surprisingly, he kept the standard care allowance, but got no mobility award at all. I'm not sure how much clearer I could have been about the mobility challenges, yet he got nothing?

The kicker is that I wanted to appeal, but a large issue with him is dealing with strangers so he wasn't prepared to sit in front of an appeal panel - Not a great system for people with ASD.

@Elendon

Appeal. If you are out of time, start again.
Mandatory Reconsideration without adding anything extra in the way of evidence is unlikely to be successful (it is for some) but Tribunal is very fair and impartial.

You need to be careful filling out the forms, there are plenty guides online which show you how to get your description of someone's needs across in a way that's very clear and meets the DWP's criteria. Sometimes just that can make the difference between having an award or not.

Because of that, some agencies are so overloaded with people needing help that they cannot help until it's a Tribunal. Similarly, many HCPs are now not writing letters of support because they are unlikely to have seen the claimant in many of the situations mentioned in the forms. e.g. the preparing a meal question, none of our HCPs could comment on that because they've never seen how their patient copes or not in that situation.

@dottodot, All the following questions are rhetorical, please don't answer here, but have a think to see if you could present his case in a better way, then either appeal or start again. I'm guessing he had a face to face and that he gave some responses to the assessor? In DWP's eyes, that means he's already seen the assessor who would be a stranger, so they will have absolutely ignored and dismissed all your evidence about him not being able to approach and communicate with a stranger.

Are you down on the forms as his advocate, or did you complete them as if he'd done it himself? Did he speak to DWP on the phone and could he understand and answer appropriately? That makes a big difference to DWP when it comes to demonstrating his inability to communicate, to them he'd have demonstrated he has no problems but the reality is more likely to be you being in the background prompting, or having prepared for days just so he could say his name and address.

Please do think about appealing, Tribunal Panels are impartial. Could you prep him to sit in front of three people (four if DWP turn up) so they can see how uncomfortable he is and how he struggles to communicate? There are large tables in between the panel and the claimant/advocate, so they are not close to you at all and they are not intimidating.

It isn't easy but it's not impossible.

DS1 did not have a face to face when transferring from DLA to PIP. He has been out of school since 14 ('HF' autism) and has barely left the house. The assessor just spoke to his OT.

From posts I have seen on here and FB the issue is when DC attend school or college - even if specialist and with large amounts of support.

We are at tribunal stage. He is HF and he didn't answer the mobility question. It was filled in for him, wrongly. Hence he got a zero. He never said what was filled in.

I kid you not!

I've had 14 years experience of filling in his DLA forms. He seems suave and sophisticated and he answered the three questions to assess his cognitive ability - three words to be spelled backwards.

Have you got any reports with his cognitive ability, receptive language, language comprehension etc. outlined, a SALT or Ed Psych assessment, his scores on DISCO or anything else?

If not, could you get a private assessment done whilst you're waiting for Tribunal? Ring the Clerk to the Court and ask how long it's likely to be, if imminent and he wants to go ahead with the assessment, then you can ask for the hearing date to be postponed until the report's done. You can submit new evidence right up to the day which could cause a postponement, but they prefer a good fortnight's notice if possible.

"he didn't answer the mobility question. It was filled in for him, wrongly. Hence he got a zero"

Write and explain that because of his communication difficulties, the form was wrongly filled in and that part needs to be reviewed.

Add anything else that could affect his ability to 'plan and follow' some of the co-morbids can be used as evidence, if applicable in his case. Good Luck

“I wonder how many 16 year olds can travel alone to unfamiliar places? Or manage money?“

My neurotypical 14 is terrible at both these things.

My autistic 12 year old could plan a rail holiday around Europe for a family of 5, incorporating stops in Paris, Stuttgart and Vienna, with a range of discounts for all and a list of what platforms to be on and what station amenities to expect along the way.

—trainspottersRus—

Ds with autism had a lifetime award for DLA,high rate care and mobility. On transfer to PIP he was awarded 4 points. At Tribunal the judge said to call it a day and stopped going through the questions when they had got to 33 points entitling high rate daily living and mobility.
DWP had no evidence to support their medical report from ATOS,we had provided 300 pages of medical evidence from professionals that had known ds for 20 years. DWP didn't know why they had awarded a lifetime award only two years before the PIP assessment.
The only question they asked at Tribunal was had ds ever been to a football match
The whole process was a farce, medical reports from paediatricians, psychologists, OT's and SALTs going back years were ignored in favour of a thirty minute assessment and a cut and paste report by a nurse who had never met ds before. It took 1 year and 3 days from DLA being stopped to PIP award.