Aspergers and PIP

[onefootinthegrave]

My son is 19 and in college. He has a number of health problems from birth (premature) which have left him with motor skills problems. He has aspergers, a stammer, OCD and anxiety. I don't know if he'll ever live independently.

He started getting DLA when he was just 3, and when he turned 16 he transferred over to PIP. They awarded him PIP on his medical evidence at the time, and he was meant to be reassessed next April. Except the DWP brought this forward and he was called for an assessment which I went to with him.

Now, the DWP have taken all of his PIP away, because they've said that he doesn't need it anymore. This is based on an hours assessment with ATOS who have written things like he accepted a cp of water to drink and didn't spill it so his motor skills are ok... he wasn't sweating, shaking or agitated... he had a good pincer grip and co-ordination because he took his bank card out of his shorts pocket, gave it to the assessor and put it back in his shorts... He 'only stammered a few times' (not true!) I'm shocked at the inaccuracy of his report and I'm asking for a mandatory consideration and will go to a tribunal if necessary because I know that DS still needs extra help.

The problem I have is, when he was a child he had physiotherapy, occupational therapy, a pre school teacher, a speech and language therapist. Although he wasn't statemented and went to a mainstream school he had IEP's and was on school action plus. He was seeing a physchologist at CAHMS between 16-18, and has been referred to adult mental health service but is still waiting for an assessment with them, one year on. I don't know what medical evidence I can provide because we've really been left to get on with it. He had SPLT until he was 15, and now can't get anymore because our borough doesn't offer it for over 18's.

I'm going to ask his college if they can write confirming he has an IEP (the assessor actually wrote that my son has never had any form of help from nursery-college, unbelievable!) I hope they'll also include that they still need to tie his shoelaces if they come undone, and has problems with writing). I'm also going to ask his old secondary school to confirm the amount of support he got, and see if CAMHS will write something supportive. Does anyone know if my GP surgery will be able to write something based on his medical notes?

I just feel like when you get to a certain age with aspergers/autism/motor skills problems there are no support services available, so what kind of evidence can you provide for PIP?

If anyone has had similar experience, I'd be really grateful for some advice.

Thanks in advance

Have a read here, it tells you exactly how the face to face assessors work.
www.mumsnet.com/Talk/am_i_being_unreasonable/3404180-To-ask-for-some-advice-on-DHs-PIP-meeting-tomorrow?pg=1

I just feel like when you get to a certain age with aspergers/autism/motor skills problems there are no support services available, so what kind of evidence can you provide for PIP?

I sent in a full copy of every assessment and every letter where a medical professional had mentioned a condition, date-ordered them and did an index with the main points underneath each one like :-
[birth] brief details of lack of oxygen etc.
[date] NHS OT report 2nd centile fine motor skills, needs help with xyz. Sensory profile conclusions. School to implement abc Exercises to improve abcde
[date] private SLT report deficits in communucation, 3rd centile processing speed.
[date] Letter from Paed tested for abc, results xyz
[date] CT Scan on [date] showed [findings]
[date] IEP, show main deficits and interventions school have to make. If that's in place until he is 25, say so.
[date] assessment for extra time/scribe/reader in exams.
etc.
It's a laborious task, but it builds up a picture of his deficits throughout his childhood and years in education. It gives a much better bigger picture overview.

Then I cross-referenced the reports to individual questions on the form.
Then go through again and look at what the assessor has said he can do, then explain where relevant and with reference to your evidence that he is not able to do that task reliably, repeatedly, safely and in a timely manner

Don't be surprised if he's knocked back at MR, the DWP seem to think their assessor's comments are the Word of God, they even say 'the medical expert' when referring to their assessor and backing them up every time.

Be prepared to go to Tribunal. We went earlier this year and the Judge said he and the other 2 panel members had looked at all our medical evidence and had all independently decided that our case should have never come to Tribunal, we should have been awarded the highest rates of both components at our initial application and had DWP bothered to turn up for the hearing he'd have made them apologise to us.
He said we could accept that or if we wanted to we could have the full hearing. We just accepted. I'd gone there to fight our case and dispute everything the assessor had assumed, so I was pleasantly surprised and shocked to hear the judge say that. When we received the judgement, it said 'it is inappropriate to fix a term' which means DWP cannot ask for a review before 10 years from the Tribunal date.

You or he can apply for your son's full GP records, I had to write a letter stating why they were needed and paid around £70ish for ours last year, but someone has said they are now free under the new Data thing, GDPR? Ask at your GP surgery for their 'how to' and any costs.

I discovered there are also Hospital Records, some of which have different info to the GP records, lots of documentation re the birth etc. so I got those as well and included anything I thought was relevant.

I just feel like when you get to a certain age with aspergers/autism/motor skills problems there are no support services available, so what kind of evidence can you provide for PIP?

In our situation, it was a case of proving that the already diagnosed and documented deficits were still current.

I'm going to ask his college if they can write confirming he has an IEP (the assessor actually wrote that my son has never had any form of help from nursery-college, unbelievable!) I hope they'll also include that they still need to tie his shoelaces if they come undone, and has problems with writing). I'm also going to ask his old secondary school to confirm the amount of support he got, and see if CAMHS will write something supportive. Does anyone know if my GP surgery will be able to write something based on his medical notes?

When you ask them to write in support, please emphasise that they need to stress the amount of support he needed, schools etc. do tend to write letters saying how good the pupils are and how they are co-operative and try hard and make them sound as though they don't actually need as much support as they do. You need the plain truth.
Definitely get them to describe or list everything they help with which is different to his peer group.
Get them to send the letters to you so you can query anything before you submit it with your evidence bundle.

Also send everything to DWP by 'tracked' next-day signed for, it's about £7, but when they accuse you of sending your info in late so they can make you start again from scratch, which they persistently did with me, you will have a screenshot showing who signed for it at their office, the time and the date. In all instances I'd beat their deadline by several days.

That was so long I pressed 'send' as I thought if I hadn't it could have well evaporated into the ether.

I do wish to add a well meant 'Good Luck' because not only is it an onerous task in itself, the emotional toll of doing it is very high on you, don't underestimate that. The DWP's "threats" of saying you can challenge their decision but anything they've already awarded you may then be removed isn't helpful and many people feel intimidated.

Fortunately, the Judge and the other panel members at Tribunal are impartial and are well aware of the way the DWP operate.

My mantra throughout the process was I can do this and I will.

Thank you so much - your replies have got such useful information in them. I will do what you've said, and I'll come back and let you know what happens.

I'm really glad you got yours resinstated at tribunal. And I will remember what you've said about the emotional toll - I feel it now. It's having to say, in front of your child, all the things that they struggle with, it makes my son feel really low, because he's well aware of how different he is and hates it. I remember him saying to me once (after some particularly nasty bullying at secondary school) 'Why did I have to be born like this?' and it still hurts now remembering it. And you have to go through it all again with the DWP. It's really demoralising.

Thanks again - this has helped me so much

Like so many other parents of neurodiverse kids, I've had to deal with the aftermath of bullying too, it's vile, I'd not like to repeat what I'd like to do to the ones who caused my child so much pain and loss of self-esteem and to all the teachers who "didn't see" any difficulties therefore would not support any strategies in school or any referrals.

It's having to say, in front of your child, all the things that they struggle with, it makes my son feel really low, because he's well aware of how different he is and hates it

Can you stress to him that firstly all these forms, assessments and other medical things only ever concentrate on identifying the differences which are unfortunately often termed deficits.
No-one makes an appointment with a medic to breeze in and tell them how wonderful they feel and how they are achieving all sorts of things, so all of the good things about him are missing from all of the assessments, reports, letters etc. They only show a part of him, the part that the DWP need to know about so he can have funds to help him.

Secondly when all of the differences for that individual have been identified, they form a pathway to intervention and help. That's why they are done, not to point out faults or to say the person is deficient or is somehow 'wrong' and needs to be 'put right'

Can you do some work with him about how having a diagnosis or diagnoses does not mean there's something wrong that needs to be fixed, it's about identifying differences and implementing help.
Is he interested in reading about people like himself online, there are a lot of blogs now by people with Asperger's, he may find something there that will make him feel better about himself. If necessary, have a look yourself first and find some that may give him a boost.
Rebecca Burgess' cartoon gives a much better understanding of the autistic spectrum
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Does he have any sensory issues,
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

How self-aware is he about his differences? Here, if someone suggested being able to carry out any activity, there would be agreement and enthusiasm to have a go whereas it's patently obvious to everyone else who understands how their conditions impact them on a day-to-day basis that their capability to carry out the activity is negligible. It's important to stress that, our assessor made a lot of wrong assumptions and then extrapolated those into 'is capable of doing' statements which were erroneous.

You're very welcome to the advice, our Tribunal was a few months ago. Do also google for advice for PIP appeals, there may be something that will help.

Some of the obstacles are sneaky like DWP's deadline being a month from the date of their letter which sounds reasonable, but it only arrives 2 weeks after that date which gives you 2 weeks to reply, then you need to post it a few days before their deadline signed for so they can't argue it's late, then you realise within those few days there's also a Bank holiday. It sounds as though you have a month to respond but in reality sometimes that can only be a few days. Be aware and be prepared.

I'll keep my fingers crossed for you, I did it, you can and you will

Blank gives excellent advice - particularly on using every report you have - however old as evidence. My DS is 24 (ASD, anxiety) and like yours had no recent evidence (bar his EHCP which he got aged 23) of his difficulties. I submitted all his reports from diagnosis(at 14) onwards. Ours was a transfer from DLA to PIP and just found out DS got standard daily living needs and mobility- equivalent to his DLA award.

His award is for 2 years though as the DWP say his needs might change - can’t see it myself.

It's this that makes me so cross. Does anyone have the figures for benefit fraud they are trying to eliminate by changing to PIP? it was somewhere in the ).) something percentages, but I don't know the actual monetary figures.
These costs for PIP seem to surely outweigh that.

The following is from the Benefits and Work site.
www.benefitsandwork.co.uk/news/3822-astonishing-fourfold-rise-in-cost-of-benefits-assessments-over-450-million-a-year-now-paid-to-private-companies?

The annual cost of assessments for benefits by private sector companies, Atos, Capita and Maximus now stands at £449 million a year. This represents a fourfold rise in costs.

Figures given to MPs by Sarah Newton, minister for disabled people, show that the rise in costs began in 2014/15 and appears to coincide with the replacement of Atos by Maximus and with the rollout of PIP to existing DLA claimants.

The figures are as follows:

2010/11 £112.8 million

2011/12 £112.4 million

2012/13 £114.3 million

2013/14 £80.7 million

2014/15 £280.4 million

2015/16 £367.8 million

2016/17 £443.8 million

2017/18 £449.3 million

The figures show who has really benefitted from welfare reform. They also explain why any attempt to take assessments back in-house, as is planned in Scotland, is likely to be ferociously resisted in the rest of the UK.

Thanks both of you. I'm sorry I haven't been back before, I have almost been too scared to face it, which isn't usually like me. Normally I'll face things head on and challenge them with everything I can think of. But I've been too scared to think of how we will manage if it isn't reinstated.

But, thanks to both your advice I went through DS's folder of all things medical and pulled out some of the most in-depth reports from when he was first diagnosed. His old councellor who we still keep in touch with has also written a report, and his old SPLT is currently giving him some intensive therapy and is just today finishing what looks like is a very indepth report on his whole history. So I'm sending it all off either today or tomorrow, depending on when she emails it and I can print it off.

I'm fully prepared that they won't overturn on the mandatory reconsideration (although I'm praying for a miracle so we don't have to go to tribunal) but I am expecting we will have to. And I will, and it's down to friends IRL that say keep fighting, and people like yourselves that have been through it and say, you can do this too! So thank you, so much.

I will come back as soon as I hear anything although I know it could be months. And if this is successful I will do for others what you've done for me, and hopefully it will help them too.

to you both!

I will keep everything crossed for you. It was a good few months between MR and Tribunal for us.

I know how soul-destroying the whole process is, somehow it seems so much more difficult to deal with PIP than many other onerous tasks we have to do.

Hang in there, remember, you can and you will

It is fairly well known that assessors lie on reports. Gather together everything and anything you can that directly proves any/all inaccuracies in the report. I had letters from my gp, dentist and even my daughters school just anyone who could dispute the assessors claims. Also PIP doesn't have to access your medical records but they do have to at appeals stage. I also had a private OT do a report for me Ot cost £150 but I was due to loose 5 times that per month so it's well worth doing if you can.

I hate DLA too. I spent most of today filling out the forms for DLA for my son. Definitely worth appealing the decision. Keep us posted. I have included a bunch of reports and letters that are from his team. I also wrote a lot about his disability and diagnosis on the form. Every question I answered I politely told them about how much our lives are impacted.
My son’s social worker also helped me fill out the paperwork. Hang in there.

I don't have any advice but I understand. 2 of my boys have gone from middle rate care and high rate mobility dla to no dla at all this year. Both are part time wheelchair users. 10 year old uses his a lot and frequently gets sent home from school because he is crying with pain and exhaustion. Local playscheme wouldn't let him come unless I stayed with him which means either he misses out, I pay someone to go with him or dh takes the week off work to look after toddler while I'm with ds at the playscheme. 5 year old has learning difficulties and is similar to a 3 year old in his learning. But according to the dwp, my 5 year old is fine and my 10 year old is "making a conscious decision" to be awkward.