To think a lifetime award for DLA should be for life?

[Pinkmexicanskull]

A close family member has Aspergers and as a child was awarded a lifetime for DLA. He was starved of oxygen at birth and had a tough first few years. He was “statemented” as autistic when he was 5 (back in the late 80’s.)

He struggles with a lot of basic everyday tasks but has a small part time job, and lives independently with numerous daily visits from me and other family members to ensure he has washed/cooked/brushed his teeth/not set the house on fire. Most meals are supervised. Money is and always has been tight but he muddles along on a mix of income from his part time job and benefits. He rents a small house close of which I’m the guarantor and financially he gets by.

He was called for a PIP assessment 2 months ago which I attended with him. He completed the assessment honestly and fully. Today we received a letter to state he scored zero and his PIP of around £105 per week was being removed.

I’m shocked that a small assessment can essentially decided he is “cured” of his autism and is, in the eyes of the government no longer disabled. We are of course going to appeal but I’m shocked and horrified that so many other people with DLA are going through this experience. It’s such a disgrace when people were awarded a lifetime benefit that it can be taken away. The financial impact this will have on him is huge- family members will now need to contribute to keep him independent, or he’ll need to move.

So, AIBU to think that if you’re given a lifetime award for a disability that it should mean just that- lifetime?

Does that mean I believe in lifelong awards fir changeable conditions? No. I think it's important that people are seen.

Really? You think it's important that people are seen to check they still have a lifelong developmental disorder? You think it's important to answer the same set of questions every four years? Autism isn't a changeable condition, is it? It doesn't get worse or better.

And for some people with autism they aren't able to reach the stage where they can gain coping skills or learn to manage their daily lives. And I mean those are "high functioning" as well, not just those with learning disabilities. Those people should have a lifetime award. They shouldn't have to face pointless repeated face to face reassessments from lying morons who know fuck all about their condition. They and their families shouldn't have to repeatedly be put through the stress of losing DLA/PIP and carer's allowance in one fell swoop. No-one ever talks about that, how parents of disabled children are screwed over when their adult child loses DLA, and they lose carer's allowance - despite their child's needs not having changed.

Do you have any idea of the stress these assessments cause autistic people? The effect they have on our mental health? Mine sent me into a depressive spiral that ended in me trying to kill myself. It's funny, I was terrified of the prospect of a tribunal but that turned out to be the fairest and least stressful part of the process.

I do think it's unfair in some ways, but I think the reassessments from DLA to PIP, have been to sort the wheat from the chaff so to speak... There were many people on it for YEARS, who no longer deserved to be on it. So they had to split the people who genuinely deserve to be on DLA/PIP (and deserved to be on it for a long time,) from those who aren't as badly affected as first thought, (or who have got better since their original claim.)

You are talking utter bullshit, people could be and were re-assessed on DLA. Contrary to what the government would have you believe short term awards existed under DLA. People did not get lifetime awards for "having a bad back" as some people would have you believe.

It's not as IDS said where people were "languishing for years and years" on disability benefits. "Languishing" - nice way to describe those of us with developmental disorders and learning disabilities isn't it? Because they made up the bulk of long term claimants you know.
PIP exists for the sole purpose of kicking people off the system. With the bonus of providing a nice juicy contract for their friends at Atos and Capita.

Hey hey..

I live independently (with my partner who is my carer.. although he is autistic and I am HIS carer..)...

I run my own business..

This does not mean I am not seriously disabled and chronically ill, it means we find ways around stuff, yeah it costs more, yes its more effort, its more tiring, no we don't bring in nearly as much income as someone else could...

My PIP 'runs out' ie, I need to be reassessed in 2021, I have ehlers danlos, I have dilated cardiomyopathy, my heart function (ejection fraction) is at 16% now...

None of that is going to get BETTER in the next 2 years, it is only going to get worse. I will not get MORE money when it does so.. why am I being reassessed (And it wont be in two years it will be next year htat I start getting harrassed for details and forms etc).

I appreciate that PIP and DLA before it, were based not simply on your diagnosis but how it affected you, thats common sense... but it is also common sense to look at the conditions people have, and realise some of them won't be getting better, only worse.

Those with autism who have been assessed as adults, they are not going to stop being autistic, they MIGHT learn how to navigate autism in a way that allows them to work or live indepently or simply 'be less weird in front of normals'... but that comes at a price, it doesn't stop them being autistic and it doesn't make life easier for them...

SO whilst I DON'T think we should be giving lifetime awards for fluctuating conditions in children... we SHOULD be giving them for degenerative or conditions which don't go away, in adults.

Really? You think it's important that people are seen to check they still have a lifelong developmental disorder?

No. Because obviously a lifelong 'disorder' is lifelong. I think it's important to reassess how the condition is affecting the person, because over a lifetime that can vary.

You think it's important to answer the same set of questions every four years?

I think assessments are important. It's not down to me that they use the same set of questions though.

Autism isn't a changeable condition, is it? It doesn't get worse or better.

Except the way people cope and what they can manage actually can change over time. My earlier example of a child awarded DLA at 10 but didn't qualify by 14 because his limitations due to his autism had changed. Autism may not be 'changeable' but people are.

Not you again JanMayer, swearing at people and thinking only you know everything.

Swearing is allowed on here. Or are you such a delicate little flower you expect people not to swear because you don't like it?
And I don't know everything, nor do I think I do. But I know bullshit when I see it, and won't hesitate to call it out. Or do you too believe people got a five year award of DLA for a broken leg?
Do you actually have anything constructive to add, or are you just here to criticise autistic people for communicating in a way you don't approve of? Who died and made you the thread police? You have no right to dictate who can post about what topics.
And it's Meyer, not Mayer.

I have a letter from the DWP in the 90s saying my son had it for life but it does mean nothing. He has cerebral palsy and learning disabilities but we have to keep filing forms in every so often.

Hi pink all is not lost yes you can appeal the the decission and if the DWP still say no you can take it to court but I know from experience from my ex girlfriend she was DLA before it was swapped to pip when it she was called in for a renewal when she heard back she was awarded zero points but after getting advice after they turned down the mandatory appeal rather than wait for months for a court date she was told to forget about appealing and that it would be far more faster applying for pip again but this time I filled out the forms and also sent in spare copy's of her repeat prescription forms Aswel as writing down all her medical information. and medication after waiting to get first face to face appointment to try and get pip again when the letter arrived she was awarded the highest rate what's over £400 a month so have a think about it also seek advice about it what I've told you and it's a well known fact that these assessment get a bonus for every single person they fail. just like the fit for work assesments the DWP also do so don't give up.

And for some people with autism they aren't able to reach the stage where they can gain coping skills or learn to manage their daily lives.

I know. That's kind of my point. 'Autism' on a form can't simply mean lifelong award of PIP. It had to be assessed, and more than once.

Do you have any idea of the stress these assessments cause autistic people?

I do: I absolutely do. Maybe you missed it, but yes, I do. Maybe you were to busy simply picking them parts of my posts that suited. But yes, I do.

janmeyer ODFOD. Purely on personal experience with my auntie, yes that WAS true. I am not saying PIP is perfect - far from it, it's processes, waiting times and actual guidelines, as well as bureaucracy, fail to help vulnerable people.

However, you cannot deny that there were more long term DLA awards than there are PIP. You cannot deny DLA was an 'easier' system with more relaxed guidelines, than PIP. PIP and DLA are two different benefits. The guidelines are different. Which means that someone on dla is not automatically entitled to Pip. That is common sense, surely

www.benefitsandwork.co.uk/ this site was a great source of info for me, access to the indepth guides isn't free but they do a discount membership code when send newsletter. I think scope site also had some free guides.

The forum was useful, chap is very experienced if have any specific questions & just reading makes you realise your not alone.

I don't have an issue with cases being reassessed over reasonable time, but its the way it is being done. Its not like can just send in up to date evidence from medical professional & job done, the forms alone take load of time & effort.

Yes DLA was a much easier system with lots of people awarded benefits who do not meet the criteria of PIP. PIP was developed to reduce the amount of people getting disability benefits.

@madein So your statement that people with severe mental health illnesses can not usually work was based on one person. As someone who cares for a relative with schizophrenia I have had lots of contact with many people locally with bipolar and schizophrenia. Many do work, and in responsible jobs that would surprise you. Except lots tell no one except people they trust. I also know some people are unlikely to ever work.

It usually takes time to get someone stable on medication, and for them to learn to identify triggers so they can manage their condition. In particular I have met various professionals with bipolar including GP, teacher, mental health worker, all living local to me.

You can not judge based on the diagnosis whether people are capable of working. So I also know someone with terminal cancer still working. It all depends on how the condition affects that person.

Although of course PIP is not an employment related benefit. It is basically a benefit to help pay for basic care. And it is far too low for that.

However, you cannot deny that there were more long term DLA awards than there are PIP.

Yes, because the government wanted it that way. Me and all the autistic people I know had a lifetime award of DLA. You know, what with it being a lifelong developmental disorder and all.
And that was awarded when I was an adult by the way, it's not from childhood.
Under PIP none of us got the maximum of ten years. Despite the fact most of us aren't independent adults, who can't work, drive or leave the house alone for the most part. I got four years, which means I have about a year before I have to run the gauntlet of their lies again.
Top tips for next time, don't say you like history because that's proof you don't have short term memory and processing issues. Don't say you like to read because that's proof you can cook apparently. Oh, and don't know anything about your own condition because that's proof you don't have it.
All examples from the report written by the assessor I got stuck with.
And you wonder why I'm angry and bitter about the matter in question?

Pinkmexicanskull First thing you need to do is get a copy of the F2F report, then you know what you're dealing with.

Have a look at the Benefits and Work website for their specific guides on appealing PIP, you have to join their site for a year to do it, www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-appeals

CAB also have good free advice on their website too www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/apply-to-tribunal/

Do keep a diary of a typical week to illustrate how much help your family member with AS needs, it's important to stress their need for help and prompting and the consequences of you not prompting him to take action over daily living situations.

Write everything with the presumption that whoever is reading it knows nothing at all about autism (that's very likely anyway) and explain everything in those terms. e.g. Saying Can't use the phone because of diagnosed communication difficulties and referencing his diagnostic report isn't enough it also needs a description of how he reacts when the phone rings. Things like his processing speed, anxiety level, ability to understand the person on the phone's speech, ability to assimilate what the caller is asking, ability to judge whether that caller is genuine or a scam caller, ability to extrapolate the right information from what the caller has asked for, ability to give the correct information not go off on 20 tangents and still miss it, his reactions after the call, that sort of thing if it is an issue for him.
Same for answering the door, is he okay dealing with anyone knocking or does he have difficulties and if so you need to detail them.
Same for any occurrence where his reaction is markedly different to what would be seen as ordinary daily living by the NT population.

Dd had a lifetime DLA award and a Blue Badge for mobility issues. That was downgraded on transfer from DLA to PIP to 18 months PIP for care only at the Face to Face assessment. I took dd's case to Tribunal and won, she has enhanced rate of both components of PIP and the Judge ruled 'It is inappropriate to fix a term' which means she has the full maximum term PIP of 10 years and any subsequent review should be a light-touch only. That won't be for another 7- 8 years, so no idea how that works in practise. The cynical part of me wonders if they will tighten up the points criteria by then so she'll not automatically qualify, but there's nothing I can do about it until much nearer the time. Latest on that AFAIK www.disabilityrightsuk.org/news/2018/june/ten-year-pip-reviews-people-most-severe-health-conditions

The fraud rate for DLA was under 1%, as JanMyers says, PIP was introduced to reduce the DLA caseload by 20%.

PumpkinP She’s severely autistic and won’t be improving (in fact she’s getting worse) so I don’t see why we only get low awards and some get life
I don't know if lifetime awards are still given for DLA, I see from the SN boards here that the criteria for DLA have been tightened. Again, use the advice that's available online re filling out your forms initially, the Cerebra guide was always recommended for DLA. cerebra.org.uk/download/disability-living-allowance-dla-guide/
Get help to complete the forms if you need it.

If you have medical evidence that your dd's condition is worsening, that's a change of circumstances and the DWP should be informed.

PIP was originally brought in based on the claims that it would cut benefit fraud (which some seem to believe is rife on here).

However, it’s been proven that disability benefit fraud is the lowest of all the benefits with the estimated number claiming fraudulently being around 0.5%.

However, the DWP know that it is people with disabilities e.g. the most vulnerable in society who are less likely to want to go through the appeals process if they are rejected, and society supports the view that they’re all claiming for a bad back or a broken leg and have been living “on the sick” for a lifetime.

Imagine if similar checks and balances were put in place for other benefits? Housing/income support etc? There would be outcry because people who claim those benefits are a part of our wider society. Many people claim them and everyone believes that if they’re down on their luck they can claim them. Whereas most people have a “it would never happen to me” attitude when it comes to talking about disability, so the disabled are fair game even though the rest are far more likely to be claiming fraudulently.

I bet we all know someone who isn’t living with a partner because it would “affect my benefits” but feel this is justified, and yet if someone has a genuine disability they should be made to prove it....

I have a visual impairment and was awarded lifetime DLA about 25 years ago. Since then I have been diagnosed with a serious, life limiting heart condition. When it came to my PIP assessment I mentioned this on there but it wasn’t the basis for my claim. However, I had a nurse call me who was incredibly aggressive and questioning how I could claim I became breathless when I couldn’t state how long that was for on every occasion. How I couldn’t claim I struggled to get out because of my heart condition when I seem to actually manage to leave the house... my VI wasn’t in the picture at all, she was purely on a power trip.

Fortunately she put me forward for an assessment which was done at home and I was awarded full rate. But it could easily have been different.

I know people who have had their award cut because they’ve been able to get to the assessment independently.

Someone else who had no notice of an assessment and the assessor turned up unannounced on her doorstep at 11:00 on a Sunday morning and told her if she refused to see her her claim would be rejected. She had a terminal illness which is supposed to be an automatic award.

Those who believe that everyone on these benefits is on the make clearly don’t have an awful lot of experience.

No-one would put themselves through this claim process if they didn’t have to.

I thought a terminal illness is only an automatic award if it is thought you have less than 6 months to live?

I had a lifetime DLA award, I was born with dislocated hips, have ME & Fibromyalgia, along with anxiety, depression PTSD & have just been diagnosed with Autism. As a result of being born with dislocated hips, I have chronic arthritis in all of my joints & in the near future will need surgery, some of it will be joint replacements, some removing damaged bone surface & realignment of bones. I got awarded PIP for 18 months initially & then on reassessment was dropped a level which meant I lost my mobility car, I did a mandatory reconsideration as the nurse who had done my assessment had lied that she had seen me walk 22 metres unaided, that I walked normally & at a normal speed, she also made statements about my mental health, general demeanor, my appearance & dress, none of which were true. I have never walked normally in my life, I limp badly, as my joints have worn out my legs are no longer straight & I am in constant pain, I have to stop every few metres to rest before carrying on, I walk very slowly & frequently hold on to walls or furniture to help me balance. My mandatory reconsideration was refused & my lovely MP wrote a letter of support & complained to both the DWP & assessment company onmy behalf, the replies she got back were so bad that she refused to let me read them as she thought they would affect my mental health even more. I put in an application to appeal & at that stage the DWP have a month to go through everything again before sending it to the tribunal service, they then put my award back to the level it had been before the reassessment & awarded it for what they call an "ongoing period" which means that I won't be reassessed for at least 10 years. This means that I now have a car again which is a lifeline to me, I can afford to pay for a cleaner, I can buy things that help me to be fairly independent, to be able to bathe & shower by myself, aids to help me to be able to prepare food, pay for extra heating during the winter, my shopping to be delivered & enable me to go to social groups run by my local ME Group who most of the time are the only social contact I have other than ds & my mum. Without this I would be permanently housebound in a cold home & would struggle to carry out the simplest everyday things.

Don't use Fightback, I'm in a group on Facebook who support members with ME to claim benefits, the lady who started fight back has been causing a lot of problems for anyone who disagreed with what was put on forms or asked for advice within the group, she got very unpleasant & started to threaten legal proceedings on anyone who had used Fightback & then chose to get their advice somewhere else. The best advice I can give anyone is to look for a benefits advice worker through a support group for your condition, they know the things that the assessors look for when looking at application & how best to complete the forms, they will often accompany you to assessments & support you through a mandatory reconsideration & appeal if you need it, they do this for free. What I did was give a donation towards the charity once I got my award.

My adult son with autism also had lifetime award on DLA and last month was assessed for pip and scored zero points and report was full of lies which I'm currently going through capita complaint procedure and I will keep going until I get to the top with it, anyway I sat and write out a mandatiry reconsideration of about 12 pages long detailing all his struggles and sent it off. 2 weeks later a dwp decision maker called me and said "well what can I say, the assessor report has a lot of discrepancies compared to your actual Evudence" I said I know, she then asked me a few questions about his struggles then said I'm changing his award to enhanced daily living and standard mobility and for an indefinite period with a minimum of 10 years before reassessment.. Wow what a result. He went from zero points to 25 so please challenge the decision with as much information and scenarios as you can. I also agree with the other person suck of people banging in about DLA was on diagnosis and pip is how it affects you. DLA was NEVER about the diagnosis it was always about how it affects you in fact te questions are more or less identical. I shoukd know I have been filling them in for 22 years so I wish people would stop telling others false information. Good luck to everyone trying to claim pip, it's a brutal System but you know your own body best or your child's so prove it to them..

My husband was awarded dla for life too and the same thing happened the mandatory reconsideration was a waste of time we then waited a year for a tribunal hearing. At the hearing they wouldn’t let me speak only my husband I was told to keep quiet. They had all the evidence a letter from his gp he’s had schizophrenia for over 20 years the doctor still scored him a big fat 0 and wasn’t very understanding quite mocking actually anyhow the man from dwp scored him some points so he got basic daily living he used to get high rate daily living and some mobility. My advice is to you to get a support worker or social worker the ppl that have a team around them are the ones that do better in the tribunal appeals. We thought we’d be ok and they would realise their mistake they just don’t care. His first face to face assessment was a nurse she asked him questions then you have no idea what she’s typing into her computer it all proved to be a load of lies and the opposite to everything he told her. I do know how you feel don’t know how they can get away with it.

Thank you everyone for your replies- so many of you have and this same issue and it really makes me sad and shocked. I totally agree with the comment though that PIP is designed to sort the “wheat from the chaff” as if were but I’m almost certain my relative should not have scored 0 points.

So although my relative does hold down a small part time job (10 hours a week) it was facilitated by Remploy and is with a very well-known UK supermarket brand who really invest in giving very basic jobs to disabled people. He has a supervisor who is with him all day when he is working and does not work on the tills for example- it’s all stock/warehouse. It’s not permanent.

He lives alone because we wanted to TRY and improve his independence and day to day life skills. He lives 5 minutes walk from his parents in a specially adapted flat. He does not drive and is taken to and from work each day. He has no concept of time or money. He doesn’t understand emotions and cannot “read” situations. If left unattended he wouldn’t go to bed or make himself dinner- we have rota between us where we help with hot meals and help him with cleaning. All finances are dealt with by us.

He did not attend mainstream school and went to a special school where he did courses on life skills so we really wanted to push and improve him where possible but the reality is- if we stopped coming to his house to help him, he would starve. I know it seems mad to people he lives independently but the logic behind it was to give him some independence to build and learn on.

We will definitely appeal the decision and we are anticipating some reduction in PIP but not for it simply to be removed all together. So frustrating. But thank you for all your help and information.

We have just had the same situation. 3 renewals of DLA at higher rate care....and apparently after 15yrs he is now cured according to PIP.

My husband has DLA lifetime award. I am dreading getting the letter to say he has to go over to PIP.

It's so unfair now.

Not much to add but I'll echo the PPs saying ask for a mandatory reconsideration then when that inevitably comes back still at 0 points then go for tribunal.

The key is to go through the PIP descriptors and evidence why he should receive how ever many points in each category. That's all they care about, not the background, not anyone's feelings etc. I always think it's bizarre when they score zero when it's clear a person gets at least some points even if not enough.

I had similar with a family member's ESA recently. Zero points. This was with a physical disability and for example she can't walk more than a few metres without severe pain but they gave zero points as they stated while she couldn't walk the distance, she could use a wheelchair to do it.... whilst also noting that she can't sit in one position longer than a few minutes due to pain!! They stopped everything, mandatory reconsideration also came back zero. Got to the DAY of the tribunal hearing and they phoned her in the morning to cancel it and said it should never have got to that point and they were reinstating everything and backdating it. I honestly think they just try it with everyone, enough people probably give up to make it worthwhile and then the government's records that as successfully getting people off disability benefits. It's a farce.

It's abysmal. Totally.
My friends ds came up zero points post interview. Mandatory consideration put him back where he should be.

What are there so many lies from assessors? How is it in their interests to be making stuff up? It’s not like the funding comes from their wages. Are they under some sort of pressure to keep awards down?

I totally agree with the comment though that PIP is designed to sort the “wheat from the chaff” as if were but I’m almost certain my relative should not have scored 0 points.

It really wasn't designed to do that at all, not unless you think adults with autism and other lifelong disabilities are the "chaff." Because as you've experienced people with actual lifelong disabilities who need support are being turned down for PIP. All because the government decided the DLA bill had to be reduced by 20%. Now they don't care how that's achieved, whether it's disabled adults in need of support who are removed or anybody else. All they care is whether there's less claimants or not. Whether those claimants are genuine or not, "wheat or chaff" makes absolutely no difference to them.
Your relative most definitely should not have scored zero points, as a lot of other people shouldn't have. But then this system shouldn't exist in the first place, and that's never going to change, not when even people who have disabled relatives fall for the idea that PIP was created to sort claimants into the deserving and undeserving.

What are there so many lies from assessors? How is it in their interests to be making stuff up? It’s not like the funding comes from their wages. Are they under some sort of pressure to keep awards down?

Yes, they have targets to fail a certain number of people, essentially assessors who write too many reports favouring the claimant are pressured to change them, aka lie. Because that's what happens when you contract out such a thing to a third party company whose only goal is take money. They get rewarded for removing people from the benefit. The fact this whole process costs the government more money because of appeals (that are succesful at least 70% of the time) is irrelevant to them.
Though some assessors seemingly need no incentive to lie, they do it all on their own. I'm curious about the health professionals who carry out these assessments. I wonder if they consider lying about sick and disabled people to be a contradiction to their purpose as a health care professional.
Given how rude some of them are to disabled people I think some of the assesors simply don't like disabled people very much. I struggle to see what other motive there would be to accuse a vulnerable adult with a learning disability of lying about their condition.

A previous poster commented there's less long term awards under PIP, this is exactly why, money. They make money from reassessing people. It's in their benefit for adults with lifelong disabilities to be assessed every four years, no-one else's.
Atos were notorious for such stunts when they did ESA assessments, people who had just won a tribunal were then called for another face to face assessment, less than a year after the first. Why? Money.