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?

[GrumpyHoonMain]

It should be but the government seems to want people to fight for money they are legally entitled to, so you need to appeal. Who did his application? It needs to be based on his worst day not the best so you need to often be very detailed about the negatives.

[Groovee]

DLA was based on diagnosis where as PIP is based on how it affects you.

I'd recommend a mandatory reconsideration and if not tribunal with help from fightback or another helping agency like them.

[PumpkinP]

Apparently it’s no longer advised to base it on the worse day as that is fraud. That’s what I’ve been told anyway.

Im amazed anyone gets life time awards tbh, my severely autistic daughter only gets 2 years so we have to renew every 2 years.

[HelenaDove]

Hmm Hypothetical question. If he is deemed to no longer need PIP because he is cured surely it would also follow that he no longer needs the care provided.

So you and other family members could not be prosecuted for neglect if you withdrew that care.


Obvs you wouldnt. Im just pointing out that they want it both ways.

[BlockedandDeleted]

You need to appeal. Apparently a lot of the appeals are granted. You also need to get a CAB adviser or similar to help you fill in the forms - they need very specific language.

[JanMeyer]

You're not wrong, but no doubt the usual suspects will soon be along to tell you about the "hundreds of thousands on lifetime awards of DLA" who didn't really need them. Ignoring the fact that most people with lifetime awards have lifelong disabilities of course.

I have Aspergers and I too was magically cured when I went through the process of transferring from DLA to PIP. Got zero points, had a report full of lies from the assessor and backed up by an equally lying decision maker. Went through pointless mandatory reconsideration, which basically consisted of the DWP denying the assessor lied and them denying they were ignoring medical evidence.
If it wasn't so serious I'd find it hilarious that I have a written "report" from a so called medical professional that says "subject has no social-communication" difficulties. Yeah, right, and if that was true how do I have a diagnosis of Aspergers then? 😡

Did you request a copy of the assessor's report? If you haven't you really should. Then you can see everything the assessor wrote about the person, see why they decided to award no points and see where they've ignored any evidence you provided. Basically go through it point by point, looking for where they've contradicted themselves and outright lied.
Oh and be prepared for them to have lied about really stupid stuff, and to have recorded answers to questions they didn't even ask. My assessor wrote down that I liked beans on toast and used that as proof I could cook a meal. A question they didn't ask, and funnily enough I don't even like beans on toast. It was just one more thing that made them look like absolute prats at the tribunal.
I did win the tribunal by the way, as do most people who appeal. Downside is the award is only for four years, apparently I'm going to magically get better in 2021 😡
Sorry for the rant, it's just so frustrating that they're still doing this to other autistic people.

[JanMeyer]

DLA was based on diagnosis where as PIP is based on how it affects you.

That's not true, that was never true. Do you think people could just declare they had autism and get DLA?
No, you filled out a form detailing how your disability affected you and what support you needed, providing relevant evidence to back up your claims. Bit like PIP isn't it? Well except for the stupid points criteria, lying assessors, decision makers who deliberately ignore medical evidence and the removal of lifetime awards.
Some people with autism get DLA and others don't, based on their care needs and how their disability affects them. I'm so sick of people trotting out the old "DLA was based on diagnosis" crap.

[Fantie]

DLA was based on diagnosis where as PIP is based on how it affects you

That’s not true. DLA is not based on diagnosis, it’s based on how a disability affects you.

@PumpkinP - I don’t know why your amazed people get awards for life. My 6 year old who has severe autism has been awarded indefinitely and so he should.

[PumpkinP]

You’be taken what I said completely out of context. I said because my daughter only ever gets 2 years, and we have to renew it every 2 years so I don’t know how they decide that some get life time awards and some only 2 years. 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. Not that people shouldn’t.

[batvixen123]

It's complete bullshit. My DSis used to get DLA due to having broken her spine in an accident when she was younger. Transferred to PIP. Lost it. Because apparently spines can magically mend these days. Assessor wrote a load of dishonest bollocks, and it got overturned on appeal but the whole thing was super stressful and she has to be reassessed in a few years in case she's no longer paraplegic. And this will cost the DWP money to do the assessment and her insane amounts of stress. I have no idea what the point is of it all.

[Fantie]

@PumpkinP - it’s all about how well you fill the form in and how much Relevant evidence you can provide.

My son gets HRC & HRM indefinitely.

[Madein1995]

Hi op. The advice I would give, before progressing with any appeal, is to read the report thoroughly. If they've said things which aren't true eg 'x can walk x miles' and that's untrue, by all means continue. However, if he can walk x miles for eg, you just disagree with the decision in general, then an appeal is not worth it. Only appeal If you feel they've said he can do things he cannot etc. It's unfortunately all based on new guidelines. How fit for purpose those are is debatable, however they are the guidelines in place.

Incidentally pip doesn't say they've cured the disability or they no longer have x. Pip is entirely based on what people score on different everyday activities eg planning a journey. Rather than dla, which was mainly prognosis based, pip is on how it affects your daily life.

And possibly in recent years dla was assessed properly. But my old manager recalls dla first coming in, and a (then Labour, he thinks) government instructing that because they were piled under with work and there were long waits, to rush cases through. He said you had people with a broken leg for eg getting awarded 5year awards etc. Obviously his word isn't gospel and not indicative of the entire benefit. But there is a difference between pip and dla. Not a nice one, but they are different benefits. It can be hard for people to process particularly if they've recirved dla for a long time, however a dla award does not guarantee a pip award.

If you wish to go on with the appeal, because the information in the report (not the guidelines) are incorrect, I would ask for a reconsideration first. Ring up as well as request by letter, to make sure that happens. Get a copy of the report, go through and highlight any bits you disagree with and then send in more evidence to back it up. Your opinion etc is fine and by all means include it, but they need hard evidence to go off. As much evidence as possible including prescriptions etc. If in doubt, send it anyway

[Cryalot2]

I was on lifetime, but that changed as the system is different. Dla is no longer and replaced by pip.
I use a rollator yet lost mobility. It is caused by so many cheating the system that the genuine suffer.
It is humiliating.

[PumpkinP]

I’m not very good with forms so I will get some help filling it out when the dreaded renewal is due.

[raffle]

On a similar note, our local authority has a gym/pool type facility for which you can become a member. Discount given for those in receipt of DLA. Every year it needs renewal where we need to provide proof of DLA.

I had both boys with me, obviously autistic, when we arrived to use the pool. The membership cards had run out but you can renew on the spot. I had no proof of DLA, and the receptionist was unwilling to renew the cards without it. Luckily the manager was hovering and she said “Hang on let me look it up...no luck with the boys growing out of their autism yet? Of course not. Don’t worry about DLA proof, I’ll renew them now”

Occasionally you get someone who gets it!

[JanMeyer]

He said you had people with a broken leg for eg getting awarded 5year awards etc. Obviously his word isn't gospel and not indicative of the entire benefit.

No, you're right, his word isn't gospel. In fact it's absolute bullshit. You couldn't get an award of DLA for a broken leg for fucks sake, let alone a five year award. It's for people with long term conditions, not short term injuries. Oh and it was under a Conservative government that DLA was introduced.

[JanMeyer]

It is caused by so many cheating the system that the genuine suffer.

No, it's caused by the government deciding that the DLA caseload needed to be reduced by 20%, regardless of whether those people are actually eligible or not. It's caused by assessors who know they have free reign to lie and face no consequences for it. And decision makers who brazenly ignore medical evidence and instead go by the pack of lies the assessor wrote. They know it's lies, they just don't give a damn. But sure, go on believing that there were legions of people faking it and that's why disabled people are being screwed over. Tell me, how does these mythical fakers explain the fact that the biggest problem with PIP is assessors who lie through their teeth?

[Fantie]

@PumpkinP - get as much help as you can with them. I spent about a week on mine. Adding in extra facts. Literally commenting on everything.
Giving examples.
I sent in an extra 8 pages of examples of his behaviour.

[Mandatorymongoose]

The advice from Madein is good. They are different benefits. A lack of award doesn't mean people are cured or don't have a condition, just that at the time of the assessment they don't score enough points overall to be awarded. For example a person with autism (obviously not everyone with autism) might be capable of following routines, cooking safely, taking meds, keeping clean and tidy, reading and paying bills so get 0 points for those. They might get points still for engaging and communicating if they struggle with those but that wouldn't be enough points for an award. It doesn't mean their difficulties aren't real or don't affect them.
Citizens advice can help with forms but be careful because some advisers write very generic responses to every question or try and throw every possible issue in when it doesn't make sense, like saying "my broken leg makes me not be able to read as I can't concentrate due to pain". When I've helped people write reconsideration letters I cringe a lot when I see that sort of thing.
Forms should reflect both good and bad days and ideally how those are split.

[MyDcAreMarvel]

DLA was based on diagnosis where as PIP is based on how it affects you.
That’s completely false, dla was based on how things affect you. Pip is meeting very specific points based criteria.

[RubbingHimSourly]

Contact fightback, they have a group on Facebook. It's a charity that was set up by a solicitor a few years ago. Theyll do the form for you and will attend any tribunals........there is a small fee. I think it's £50 that you pay when you win but as they have such a high success rate which often means an increase in award it's definitely worth it. They've helped so many people I know (( in a carer )) they're an amazing group.

[puppyconfetti]

People can and do change though so I don't believe it should be lifetime award for all, particularly in the case of autism actually.

You are talking about someone who lives independently and holds down a job.

I'm sorry that you feel autism should equal automatic DLA/PIP forever but I think that's a ridiculous idea. People should be assessed and awarded or not accordingly.

I'm sorry about your family member; but your gripe at that one person can't mean lifetime awards would be right for all.

My DS lost his DLA at 14 because he had changed, grown and learned to cope with day to day things so much better then when he was awarded that at 10. I was over the moon because it really showed how far he had come developmentally and I was so bloody proud that the child who used to need a taxi and escort to get to primary school was now walking independent to high school (even if it is just 7 mins)

Sometimes losing a disability benefit isn't a bad thing, other than financially.

[puppyconfetti]

I'm autistic and i would never qualify btw. I struggle, but I manage.

[WeArnottamused]

Another recommendation that you appeal, expect them to reject it, & go for tribunal. I have two ASD dc one whom has a learning disability, both of who got life time awards in DLA - one got a life time award for PIP to be reassessed in 10 years, one who got it for 12 months!

[JanMeyer]

People can and do change though so I don't believe it should be lifetime award for all, particularly in the case of autism actually. You are talking about someone who lives independently and holds down a job. I'm sorry that you feel autism should equal automatic DLA/PIP forever but I think that's a ridiculous idea. People should be assessed and awarded or not accordingly.

Did you deliberately skip over the part in the OP where it says he has a "small part time job" and has daily visits from family members to help him? So he's living independently with support.
Why is it ridiculous to have a lifetime award for a lifetime condition?

Sometimes losing a disability benefit isn't a bad thing, other than financially.

Are you being serious? 😡😡 You know the saying if you've met one person with autism then you've met one person with autism? Well your son is one person, he's the not the OP's relative and he's not the rest of us with autism either. Congratulations, your kid doesn't need DLA anymore. Well that doesn't change the fact that autism is a lifelong disability and that some of us will always need support with daily living. Yeah, god forbid we complain about losing the stability that DLA provided in our lives.