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Daughter diagnosed with Aspergers at 13, recieved DLA until that was changed to PIP. At 16 was required to attend an assessment in the city. Needed us to coach her to get there, what to expect etc, ended up just taking her in and her mum escorting her to keep her ok. Assessment was a list of leading questions like, 'you can cook a meal can't you?' (on her worst, she'll curl up in bed, or just forget to eat, best, she'll give it a go, with constant reassurance from us). Scored 0 points and was refused PIP having been assessed along the lines of 'she looks alright to me'. We won on appeal 6 months, lots of stress and financial strain later.
Now normally for Aspergers or other lifelong conditions she'd be automatically entitled to PIP, but because we won on appeal, now she's 18 she has to re-apply.
I'm a bit nervous about it all to be honest. The prospect of being told after all the effort we need to put in to allow our girl to function the way she wants to, in the real world, that she doesn't require assistance to function is a big cloud.
Still, we did win last time, so it should make it easier, maybe :-/
Get some help from CAB or similar, they deal with this all the time
I hope all goes well - the system often seems to be fairly arbitrary when it comes to PIP and other LA support for children and young adults.
I was going to suggest the same as above.
Speak to Citizens Advice. They deal with this kind of thing a lot. My Dad is an advisor for them and has mentioned some of the cases they deal with when it comes to benefits and their input seems to often push things in the right direction for people.
I hope all goes well – the system often seems to be fairly arbitrary when it comes to PIP and other LA support for children and young adults.
It's not arbitrary. It's purposely designed so that it's almost impossible to meet the criteria.
* Personal experience of this and Universal Credit on behalf of family.
That didn’t take long.
Sorry, but it's true.
As Al says seek advice have you had a support worker in the past? They may be able to help as they deal with them.
Anyway everyone knows they’re dead easy to fill in as anyone can claim PIP.
The system just seems to have no idea at all with Aspergers/autism
i was assessed first time at zero points, 11 points awarded at tribunal, reassessed 18 months later at one point.
What seems to happen is that the HCP who does the assessment (if you turn up at the assessment and discuss your difficulties then you must be able to engage face to face appears to be their attitude) and the DM (computer says no) never bother actually reading the background notes or previous tribunal decision (always ask for a statement of reasons from your tribunal, as this stays on file)
With a bit of luck this then gets overturned at mandatory reconsideration, because at that point a grown up actually has to look at it. (I’m waiting for that at the moment)
there is case law that if you end up back at tribunal, a clear indication has to be given to explain inconsistent decisions, and in the absence of a miracle cure for a lifelong neurological condition that’s unlikely to prove easy, so hopefully your safeguard
If you were sorry you’d make a considered comment rather than the lazy stereotypical extreme views that are always trotted out regarding welfare.
It’s not arbitrary. It’s purposely designed so that it’s almost impossible to meet the criteria.
* Personal experience of this and Universal Credit on behalf of family.
Sadly, my experience of the process is very similar to this. The system is obtuse and the assessors we had outright lied.
You will almost certainly fail on a first application. You must appeal.
Speak to Citizens Advice. They deal with this kind of thing a lot. My Dad is an advisor for them and has mentioned some of the cases they deal with when it comes to benefits and their input seems to often push things in the right direction for people.
That's how we managed through the appeal process, our CAB is really helpful. The advisor pretty much takes it on as a matter of principle as he sees so much injustice in the way the assessment system is set up.
If you were sorry you’d make a considered comment rather than the lazy stereotypical extreme views that are always trotted out regarding welfare.
I see it everyday in work.
I've recently had experience of it at home.
I know people who have tried to take their own lives rather than continue with the degrading, inhuman treatment they have received.
I know highly intelligent social workers and care workers who have been driven to despair by the attitudes of those who are supposedly there to help them.
But, yes mate, you know best.
Tell us your positive experiences.
65% of appeals against initial assessments are successful. The majority of PIP appeals find outright lies in the original assessment. There is so much more evidence that the system is intentionally broken but this is really enough.
OP, good luck to you
bearnecessities,what is your experience of this process,that is so different to every other posters ?
Apologies for ignorance but what is pip?
Apologies for ignorance but what is pip?
Ignorance is no excuse for not having read Dickens.
I wasn’t questioning people’s experiences, simply that the polarised views that people take - from ‘everyone are scroungers’ to the other side of ‘a system designed to make people fail’ help nobody and repeatedly entrench a poisonous stance on an incredibly complex topic.
The thread has some helpful advice about what can be a stressful situation at the best of times. The system can be complicated and scary for people - considering it’s their income at stake.
Talk about specifics, share experiences and make helpful suggestions for those going through the same or researching this page in the future, not make lazy, sensationalist and inaccurate statements that will only frighten those very people.
Reading the OP,I don't think that the author would be scared by some of the comments on here,he appears to have enough experience to warrant a combination of fear and cynicism,65% of appeals successful would appear to imply that the assessment process is deeply flawed,and "designed to fail" appears to be fair comment,not scare-mongering.Do you have your own agenda here?
Every year I have to contact the council to get my disabled badge reissued. This usually consists of me counting my legs and confirming that it hasn't grown back yet.
I did have a go at the DLA just to try to offset the cost of having my cars converted but I'm not disabled enough apparently.
...not make lazy, sensationalist and inaccurate statements...
Could you point out where I've done that please?
I posted about my own and my wife's experiences earlier in the year, not sure I want to go through it all again tbh.
The whole pip system is so corrupt and rouge it's laughable and deeply ashaming at the same time. Try and keep this short and simple, an uncle had a nerve cut in his spine by a surgeon. He can no longer get about and is loaded up on tablets to ease pain. He was denied because he was able to hold eye contact with the assessor. A perfectly able bodied man who is looking a little extra on the side to his cash in hand job was approved because he put on an act to the assessor who believed him. He used a cane and wet his underwear. The next week he was working on a roof with extra income coming in, taken away from someone who needs it. The whole assessment and application process needs a whole overhaul.
I've worked with a few folk going for pip. Seems like a nightmare, most have been successful on appeal, thankfully the suicide attempts were not success.
Bearnecessites I expect if you'd had my experience you would think it was ok to post up.
The next week he was working on a roof with extra income coming in, taken away from someone who needs it.
I'll just point out that PIP has nothing to do with whether you can work or not, its do help people, both working and not, cope with additional costs/needs/help that may be brought about through their disability.
ESA is the one you might be thinking about - but even that allows people to do limited amounts of work in recognition that its often good for people who might not be able to work full time.
I’ll just point out that PIP has nothing to do with whether you can work or not, its do help people, both working and not, cope with additional costs/needs/help that may be brought about through their disability
You misinterpreted my post, the person in question has absolutely nothing wrong with them yet duped the system, whereas someone who actually is in dire need of it and is going through courts to obtain it is being unsuccessful due to a woeful application and monitoring system.
This is a good site
https://www.benefitsandwork.co.uk/
costs a few quid to access their guides but it's still worth it. They are an advocacy group who regularly harass the government for change and transparency, so money well spent.
Only other advice I can give is to get as many health professionals as possible to back up your claim with written support.
Good luck
Hi
Hope you don’t mind but I’m particularly interested in this.
OH was awarded full PIP last September after a 15month fight and initially being awarded Zero points and assessment process as described above.
She has very complex mental health issues and She’ll have a review next Sept we’re told and not sure if we’ll have to go through the whole process again or will it be more straightforward?
Cheers
Steve
the other side of ‘a system designed to make people fail’ help nobody and repeatedly entrench a poisonous stance on an incredibly complex topic.
Yet, anecdotally from a sample pool of "one" my experience of the process is that it exactly this.
What's your experience?
Fatgit....
You will be sent a simpler form basically asking if there has been any change. On first appearance it seems your sending it back after only ticking a few boxes.
Again I would advise sending any supporting documentation from health professionals to prove this and fill in what you see fit to support your claim.
Best of luck OP. PIP, particularly PIP assessment is evil. I have my fingers crossed for you.
Its part of Mrs TJs job to deal with PIP assessments for folk. It is a system designed to make you fail. Get professional help.
The Carers Federation were brilliant when my brother had a really bad time a few years ago. Congenital heart defect, diabetes and some other problems which ultimately killed him last year at the age of 54 were dismissed as sleep apnoea.
Thanks all for your comments.
We're making an appointment with CAB from the start this time, should make it a bit more straight forward.
Got home last night and both my daughter and wife were very flat. The forms falling through the door have pushed my daughter into a spiral. One admittedly she was on the edge of due to college work initially, but this really hasn't helped.
The normal coping mechnaisms didn't work, so we had an evening of her micro analysing every aspect of her life so far to pick at the negatives and smudge the positives.
These are the effects that nobody sees. it's no wonder people decide to take their own lives, you can see how the spiral keeps getting deeper.
Thankfully my daughter has told us that she's not suicidal. She's very honest about that after a pretty hard time several years ago, which came to light after she decided she no longer needed the 'suicide pack', consisting of razor blades, matches, tape (taping the blades separated with matchsticks apparently makes it more difficult to stitch the wounds) and a written note she'd been keeping hidden for the previous 3 years.
anyway, we need to look out the information we provided previously, diagnosis, CAHMS assessment, school evaluations, occupational health assessment...
This always hits the OH hard, as we're reminded of all the difficulties that she has and that she masks, and the coping mechanisms we all put in place to help her exist without being questioned too much, or being called stupid, or worse.
All we can do is move forward.
Last year after our son's DLA claim was approved, the letter said we didn't have to do another until 6 years rather than the 3 it has been. The relief at that was short lived when it dawned that we'd be looking at PIP
What is galling is that the process is outsourced. If 65% of appeals are upheld, the taxpayer has paid for dodgy service.
What is galling is that the process is outsourced. If 65% of appeals are upheld, the taxpayer has paid for dodgy service.
It seems that way.
there were 'targets' talked about, to remove people from recieving what they needed way back when ATOS started with the PIP assessments, more recently it's been admitted that there were, I believe. Maybe not dodgy service, but unethical practices to meet the demands of the DWP?
Was on the radio this morning, in some regions 75% of appeals favour the applicant!
They probably look at it as a success as 25% to 35% of claims disappear.
I've had a few relatives go through it, like others say get advice. If you have an mp/msp/mla thats anti tory go to them as their staff might help you with it and will also be good back up.
Get letters/statements from everyone that comes in contact with your daughter. Go to a local charity for her disability and see if they have anyone that is working with the PIP scum bags, get them aware of your case as they'll also be useful back up.
It's a horrible thing people are going through but sadly most of the public dont care
"Was on the radio this morning, in some regions 75% of appeals favour the applicant!"
And you have to bear in mind that one of the reasons it's not higher is that some people die before they can complete an appeal.
The other thing is that the appeals are essentially blame-free, even when an initial assessment is outright deceitful there's not a built in process to feed that back let alone censure the offender. There are disciplinary/quality processes in place but they operate separately.
Update. Assessment forms filled in with the help of CAB. It was really bare minimum in there.
last friday was her assessment. In the city. At 9am.
Oh and of course, her bus card, the one she uses to get into town, so she can just get on the same bus every day, not have to speak to anyone about where she's going or the right change, or anything that may add to her uncertainties. That was stopped earlier in the week, as she's being re-assessed.
I take the day off work. Wife is stressed out her box about the assessment. Daughter is anxious.
Get there, wait. half an hour later than our appointment, daughter is on the edge. I don't know if she's going to burst into tears or start throwing things (chairs and people, mostly) around.
She manages to stay calm enough and we're called in. Wife accompanies her, as we're only allowed one carer.
I go for a wander for an hour, spend some vouchers and browse bike shops.
I get back, they're out.
By this time I'm a bit nervous. After the last assessment my daughter took the line of questioning and how she'd done by denying she was ever diagnosed, then anger/frustration at the whole process and reason it was being questioned, then spiralled into depression.
That was a long 6 months of my wife and I appealing, twice, then back and forth to CAB until the tribunal.
This time was very different.
Being met with 'yeah that was OK' was such a sense of relief.
The assessor was very compassionate, focussed mostly on how she is on her bad days as a basis for evaluation. And while it was very hard for the past to be dug up and for my wife to hear my daughter talk abut how she was suicidal while she was depressed, how she feels on a day to day basis and the difficulties she has doing normal things, like filling the dishwasher, planning journeys, keeping friends and generally being as independent as an 18 year old should be, it was honest and needed.
I'm hoping this goes better this time.
Fingers crossed for you man! Sounds positive at least...
cheers.
Thankfully her college course is finished, uni doesn't start until september, so the bus card isn't much of a problem, unless she shuts down and can't get home...:-s
still, looking up anyway.
🙂
Glad there's some progress. Fingers crossed.
Worth trying the Fred Foundation for help / advice? http://www.thefredfoundation.org/about/
Hope it goes well for you and your daughter.
We have just started the PIP process this week. Someone from the DWP came to our house with my daughter's CPN and went through it all and filled in all the forms, they are liasing with her medical people without us having to be involved, it was all pretty stress free. Mind you we haven't had a decision or money yet, but everyone involved seemed to think it would go through ok. I'll update this when we hear back from them.
Fingers crossed. We had lower rate DLA for my son, but scored Zero on PIP and only a couple more points on appeal. We gave up as most Type 1 teens don't get the help, despite the fact they can't look after themselves (being a teen with a life threatening illness)and need extra help from others.
bearnecessities
I HAD a friend in the welsh universal welfare call/assesment centre who boasted that she and her colleagues got a kick out of denying people benefits.
Wish I taped it to send it to Panorama, so I believe Rusty on this.
Breaking news:
and the results are in......
Nil Points.
quite how, I don't know yet, I've not seen the report.
still, at least we know the process of appeal well enough.
:-/
And that, Mr Anderson, is the sound of inevitability.
Good luck with the appeal.
Indeed.
Not told daughter yet. We'll wait until later on and deal with the outfall then.
Yep corrupt , manipulated system. welcome to tory rule.
Pm me if you want help
Mrs To does this for a living (appeals)
Bummer. That can't have gone down well with your daughter.
Oh, and if you were avoiding TJs offer because of his quirks on here, think again. He's a very nice man in real life.
Thanks TJ, I think we've got it sorted. CAB are helping again. 🙂
Daughter has a day planned tomorrow, so we're waiting until after that to tell her.
Crossing everything for you wookie.
That post of yours Cougar is good news for me & the wife, years ago she was given a lifetime DLA award Mid-Care & Higher-Mobility she has secondary progressive MS, sadly now quite advanced she cant even feed herself now.
So when we got the PIP forms I nearly ground my teeth away while filling them in 🙁 the questions are so loaded that there is no option to fill the correct answer in for someone who cant do anything for themself.
Example: Preparing a meal, do you use adapted utensils.
1. No
2. Sometimes
3. Always
Strange there is no "I can't prepare a meal"
I ended up writing some pretty sarcastic stuff in the right hand boxes, we then had the home visit by a "health professional" To be fair to her she looked really embarrassed when she saw my wife's condition & said sorry to me as she left.
We then received a letter saying they were considering her case! At this time I had taken her for an appointment to see one of her consultants who was furious when she found out what was going on, 2 days later a letter arrived I was copied in on she had sent one to the PIP panel!
I have to say she didn't pull any punches as what she thought of the situation & the utter cruelty of the system including some words you don't often hear used in official communication!!!
As a result of this my wife's care component was upped to the higher rating, so in the end a result but degrading for my wife & bad for my teeth.
Glad you got the outcome there MrOvershoot, but very crap that you had to go through it at all.
CAB were mighty annoyed. Point made that DWP have essentially gone against the previous tribunal outcome for a lifelong condition where there will be little to no change.
The new scottish social security bill didn't come in until the 21st June, so just after the forms came through. I'd hope that the new bill means we don't have to go through it all again.
mandatory reconsideration in.
I fully expect this to go as far as tribunal again.
Jeez, that's rough. Fingers crossed for you
Envelope dropped this morning. Standard rate of daily living support, standard rate of mobility support. To be reviewed July 2020.
We don't need the money for household bills, otherwise we might push for higher rate, but if having regular money from outside prompts her to start making decisions for herself, that would be fantastic.
Bloody hell, writing that last sentence has made this screen dusty.
Mandatory decision notice came through last week. nil points, still.
That's after they lost the appplication and our MP got involved.
Mrs Wookie had a meeting with CAB this morning to initiate the tribunal process.
hey ho....
I'd like to say that during the period of lack of PIP we've incurred no additional costs or stress, but I'd be lying.
Thankfully daughter has now got funding from Uni to get a taxi from the house to the train station and to the uni the other end. They seem to have things tied up a little better, one on one specialist meetings as often as she needs too.
still, Mrs Wookie has had to hold off on work for the time being as daughter needs daily support doing her assignments. The PIP would help with external support, and mean that my wife would have access to carers allowance and more importantly respite etc.
Good luck. Part of the design of the system is to make folk give up claiming.
I know it is not like a national newspaper, but have you considered writing in to Private Eye about this? MD is heavily critical of the system and it might get you more visibility.
no willard, I've not. It was a new thing to us to have the local MP involved. we tend to just deal with things as best we can, with the advice and support from CAB, who are great.
The tribunal worked for us last time, there's no reason to think that it wouldn't be the same. it's just the amuont of time it takes.
In theory at least, the next time, the PIP will be under scottish control, so the process should be slightly different.
Think we are on the second appeal for my wife, her care team are very good at dealing with it as it seems an all to common part of their workload now. I've seen the response her nurse sent, it is very harsh, but a reflection of the worst days. Quite hard reading as you don't realise what you do day to day. Not read the consultants response, even harder reading apparently. Not fully rejected so far, but basic payment is a long way off previous DLA and they appear to have not read any of the supporting notes with the first appeal which included calling out plain lies from the assessor at the meeting.
It's frustrating because not only does it cause the applicant and their families a lot of stress, but takes healthcare professionals away from patients.
Hi
My OH won at tribunal last year and got full award after being given zero points at assessment. we’ve just been through the review process. We had lots of medical evidence and supporting letters from consultants etc and went for another assessment.
To be fair the assessor was very thorough and fair and we just got the decision letter yesterday which renewed her award for a further 3 years.
Just stick in, put your case together and fight them all of the way and it is possible to be successful.
It shouldn’t have to be this way but we can blame the fakers for ruining it for the genuine people.
You have my sympathies and well wishes.
Cheers
Steve
Got a call from Mrs wookie earlier, daughter has had a wadge of cash put into her account. could be PIP, they were both hopeful, but nervous as we'd not heard anything since my last update and were expecting a tribunal date.
She called to see if it was anything to do with them to be told that there should have been a letter last week and that we were reassigned a new case officer, who'd reviewed and disagreed with the original assessment (and appeal result) and had reinstated her PIP for 4 years.
Awesome news as this takes her right through uni and certainly takes the pressure off financially for us and her. To not have to think about budgets when she's not able and have the funds for those extra bits of support, reminder apps like brain in hand, that sort of stuff is great.
6 months of stress and uncertainty, my daughters self doubt on the validity of her difficulties. Guess we got there in the end though.
Brilliant news, sorry the system put you and your daughter through so much pain
I thought if you failed to attend you were denied, and if you did attend you were well enough not to qualify.
Good news op, what a stress that's been.
fatgit
It shouldn’t have to be this way but we can blame the fakers for ruining it for the genuine people.
I don't agree with you there.
I know 3 people that have gone through the pip process. 2 of which went all the way to tribunal and won their case. Up until that point they were no more than "fakers" as far as the DWP were concerned.
The "fakers" are not to blame for pip and all the pain it causes as pip is designed to assume that EVERYONE is a faker till proven otherwise.
It's a heartless system, rotten to the core and imposed by an equally malignant government.
The fault lies with them. No one else.
I thought if you failed to attend you were denied, and if you did attend you were well enough not to qualify.
Ahhh, Catch-22, the greatest catch of them all.
That's great news Wookie. It gives me a glimmer of hope that there are some humans in the PIP assessment system.
Boy2 received his PIP forms just before Christmas. He's 16 and still at school. He has moderate but complex autism. The Wife completed the forms as his advocate, he's in no way able to do that, and he had his interview / assessment on the 9th January.
The medical centre where his assessment took place was in Worcester, we're in Hereford, 25 miles away, at 5pm. Luckily we were both able to take and support him, but asking someone to travel by taxi, train, taxi, at busy times, when he struggles to cross a road without help is just cruel and unnecessary. The added stress to what is already a stressful procedure just shows that the whole PIP process is designed to remove as many people from the help they need. Whilst humiliating them in the process.
We are now playing the waiting game.
I wish you all the best blackshed. Tenacity pays off if the initial outcome is not as hoped. That said I hope you get good news right from the off.
Blackshed, all the best in yours.
The PIP response this time was quite different, lots of 'as would be expected with someone with that condition' written into the evaluation.
Travelling must've been a nightmare. Difficult to believe there's nothing in Hereford. the idea of getting a bus/taxi to the train station in the hope that you've got on the train the doesn't just blast through foregate st and dump you at shrub hill is one thing, then taxi/bus the other end, then questions/misinterpretations, confusion, (accusations) and then coordinate enough to be able to get back.
That's a definite nope.
Hope it all goes well for you, let us all know here.
Hi wookie,
Great news about the PIP.
You mentioned that your daughter is going to uni, just making you aware (assuming you're not already) that she would be eligible for Disabled Student Allowance.
It's nowhere near as traumatic as PIP to claim, just a few forms and a needs assessment (from a third party). It will pay for things like Brain in hand and other assistive technology as well as study support and mentoring. It can even help with things like extra time in exams and extensions for coursework.
Thanks fin.
DSA has been got, which was some relief, specific funding to make life a bit easier. Uni's can be a bit slow so we had to push hard to get them rolling otherise we'd have been a couple of terms in and no support. They're on board and she now (as of this term) has an additional needs officer and single point assistance which is great as she requires quite a lot of clarifications after lectures and the lecturer isn't often about to ask specifically. The assistance she does have seems to do OK, as it's mostly interpreting questions and objectives that can be a struggle.
it's great what services are available now.
The “fakers” are not to blame for pip and all the pain it causes as pip is designed to assume that EVERYONE is a faker till proven otherwise.
It's designed to exclude as many legitimate people as possible, relying on the fact that most won't or can't make it through the appeals process. Morally bancrupt; but that's the Tories for you.
If too many people successfully appeal, they'll just make it harder again to keep the numbers down.
Quick update.
Boy2s PIP review came through today. He's been assessed at enhanced level for both PIP and mobility allowance, both increased from his DLA.
I could argue with some of his assessment scores, but it wouldn't make any difference to the award level. So we'll save that fight for later.
It's a weight off our minds, I'll tell thee.
Good news.
Good news! Gladit's sorta kinda not really but slightly working for you