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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

95 replies

Pinkmexicanskull · 18/10/2019 23:05

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?

OP posts:
Babyroobs · 19/10/2019 00:29

Sounds like you really need to appeal the decision. The whole DLA definately needed an overhaul though. I worked in an area recently where large numbers of clients were on long term awards of higher rate mobility. They could walk faster than I could.

puppyconfetti · 19/10/2019 00:30

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.

No not at all.

Why is it ridiculous to have a lifetime award for a lifetime condition?

Because the vary nature of some conditions is that they can change.

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

Are you being serious? 😡😡

Yes I am. Because I'm the example I have losing the money was worth the changed in my child's independent ability.

You know the saying if you've met one person with autism then you've met one person with autism?

Absolutely

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.

Indeed. And the OP relative is not everyone either and that was exactly my point - everyone is different.

Congratulations, your kid doesn't need DLA anymore.

I don't need congratulated fgs, I wasn't being showy, it was merely an example.

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.

I wasn't saying otherwise. I was saying that people should continue to be assessed at various stages because despite being a lifelong condition, autistic people can change and learn and grow and develop and cope better.

Yeah, god forbid we complain about losing the stability that DLA provided in our lives.

I'm not trying to take anything away from people who need it, you don't need to be so angry. I just don't agree that people should be given lifelong PIP and never seen again. That's not offensive. It's just a different way of thinking.

rainingallday · 19/10/2019 00:36

@Pinkmexicanskull

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.)

In your OP, you say this lad has a part time job and he lives alone. In the minds and opinions of many people, someone living alone and holding down a job, can't have a really bad mental health issue, or really bad physical disability.

I don't mean they can't have ANY, but just that they can clearly function relatively well, and look after themselves. This lad gets himself to work and does his job, and runs his flat... So to an outsider, he doesn't seem as bad as you're making him out to be.

Most people with bad mental health and bad physical disabilities struggle to work, and many people on DLA/PIP need care and help to function day to to day, and would not be running their own flat. (Without a carer 4 or 5 times a day.)

You said "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."

I am struggling to fathom how he can hold down a job when he needs numerous daily visits to make sure he brushes his teeth, washes himself, and hasn't set the house on fire. In fact if he is so incompetent, then why on earth is he living alone?

Just playing devil's advocate here, but it could be that the assessor thinks the same. Maybe thought some stuff didn't add up.

All that said, these assessments are harsh, and some can be cruel, and some people who deserve to be on DLA/PIP don't get it, whilst many others know how to play the system, and get it easily.

Breathlessness · 19/10/2019 00:36

PIP is based on refusing as high a % of people as possible. Private firms have the contracts to run it for the DWP and assessors receive bonuses for keeping refusals high.

‘Nationally, at least 70% of appeals against PIP decisions are successful.‘ (Guardian)

That means we’re paying through our taxes for private firms to refuse payments to people who are legally entitled to them, leaving them in poverty or debt and having to fight for months to get what they should already have.

People are being treated with contempt.

www.theguardian.com/politics/2019/apr/12/dwp-to-restore-benefits-of-disabled-woman-it-called-lying-bitch

People with mental health conditions and particularly those suffering with anxiety are less likely to Apply for PIP or to appeal a refusal because the assessment process is so hostile.

www.theguardian.com/society/2018/oct/06/former-watchdog-chief-labels-disabled-benefits-process-a-hostile-environment

This isn’t the odd example of an assessor slanting a report. There is case after case, from all over the country, of assessors flat out lying about the applicant’s health and mobility.

www.theguardian.com/commentisfree/2017/oct/30/staggering-rise-pip-complaints-rot-system-disability-benefits

rainingallday · 19/10/2019 00:37

I also know a couple of people right now, who applied for PIP some 4 months ago. (They were on DLA for 8-9 years, and were told their DLA was ending and they have to apply for PIP now.) Despite their assessments being two to two and a half months back, they have still had no decision. Cruel and mean really. The one person I know has had anxiety, sleepless nights, and eczema flare up, worrying about it since bloody late June.

The other one had to see a therapist as they were so wound up and worried about their assessment. Both of them have it at the back of their mind, and cannot move on with their lives til they know the decision, as it could mean almost £400 a month lost income.

I also think when they want to take people off it, that there should be more of a period of grace to help them find suitable work, (or more hours at work if they already have a job,) to replace the lost money. Maybe a 3 to 6 month period...

jennymanara · 19/10/2019 00:39

I am amazed that anyone was awarded lifetime DLA at 5 for autism. At 5 you have no idea really how he was going to develop.
However if he does need those daily visits then he is entitled to PIP. What they may query is whether he really needs those daily visits.

jennymanara · 19/10/2019 00:40

And 70% of appeals are successful, but many people never appeal.

wowthatscrazyman · 19/10/2019 00:43

Yeah, it was decided that I was “cured” when I changed from sixth form to university. (PIP is treated as a “gateway” benefit for ESA whereby students can only receive ESA if they receive PIP. But the points system for PIP is completely shit and at odds with the eligibility criteria for ESA. Yes I can use the toilet unaided and put a meal in a microwave, but it doesn’t follow that I would be able to cope with a job. Disingenuous fuckers.)

If it’s “officially” because I’m expected to take out more loans in order to cover living costs - nah, that can fuck off. Other students have the option of working part-time; I don’t. Why should I undertake even more debt than the already disgustingly high tuition fees I’ll have to repay, because I’m trying to gain a degree despite facing significant adversity?

jennymanara · 19/10/2019 00:44

Most people with bad mental health and bad physical disabilities struggle to work

This is not true. Many many people with controlled bipolar and schizophrenia do work. I am not denying that some people cannot work, but you do everyone with serious mental health problems a disservice of you claim most struggle to work.

jennymanara · 19/10/2019 00:45

@wowthatscrazyman Maybe you should be getting benefits. But no one is saying you are cured. Many many people with chronic illnesses and disabilities work.

Madein1995 · 19/10/2019 00:46

According to numerous former colleagues, most of whom worked very closely in dla for years, it was generally accepted that the bar was lower for DLA and that a prognosis was in fact one of the major requirements, at least asr at one period of time.

Pip IS about measuring people's ability to complete everyday tasks. Whether the descriptors are fair is another issue, but it is about ability to complete everyday tasks.

I'm fully aware his word isn't gospel. I'm also aware that dla came in in the early 90s and lasted until around 2013 for new claims? And there was a labour government in between. I presume over that almost 20yr period, that processes and other things change. Perhaps his recollection isn't entirely correct - however given the cases in the news of historic benefit fraud, the fact that he worked there for 20yrs, and the fact that I personally knew someone who drank for two days straight and spat on Dr's hand and got dla (my auntie, nothing wrong with her, fully boasted to anyone who'd listen of her marvellous plan to get money), I'm inclined to believe that processes weren't always so stringent.

And each case should be dealt with on its own basis. I do agree that lifetime awards be given sparingly and reviewed, for all but the worst cases. Again, a PIP five year award for eg does not mean that they expect the condition to have gone away in 5yrs! It simply means that resources change, there are new developments all the time, and quite frankly peoples ability to deal with things can differ. Look at the poster who's sons condition changed for example. That doesn't mean her son no longer has autism! Pip isn't about 'you have a disability'. It's about how you manage certain tasks. No one is disputing they have the condition. It is ridiculous to say a person's ability to complete certain tasks will remain the same forever, considering all the different possibilities.

I worked on Pip as admkn and before anyone jumps on me, I helped people. I often helped vulnerable people, DV victims and signposted them, I called people back to check they had got home OK, I gave tips and advice, I raised issues no one else seemed bothered with, I helped people access substance misuse charities, among other things.

The number of people who would call up having been disallowed Pip, wanting a reconsideration without even reading the scores, was shocking. For many people, they thought their condition hadn't changed so they should be receiving the same Pip. While that would be nice, the benefits are completely different and while the condition hasn't changed, the guidelines now have changed. I always advised people to read the scores first before asking to reconsider - advising that if they disagreed with content then OK, but if the content was fine they disagreed with the benefit, that's a matter to raise with their mp and a reconsideration would be highly unlikely to change that.

Some people did that, and actually read the scores. Some people got angry and demanded we put a reconsideration on, despite the content being accurate. I'd often hear things le 'I can walk to the shops and dress myself, I'm still disabled.' however hard I tried, however many times I explained, many could simply not grasp that we were not saying they weren't disabled. No one was disputing that. They didn't fit the criteria, as they say themselves, which means they were not suitable for Pip. It was quite shocking how few people actually read the criteria, how for some a first response was to ring up.

Op, the first step is asking for the report. I would reiterate reading, highlighting and finding evidence. Request by phone a d letter as letters take weeks to be processed. If the assessors comments were derogatory or unprofessional, you can ask dwp to give you number for assessors complaint line. I'm more than willing to give advice if you decide content is wrong and you go forward - feel free to pm me

JanMeyer · 19/10/2019 00:46

I also think when they want to take people off it, that there should be more of a period of grace to help them find suitable work, (or more hours at work if they already have a job,) to replace the lost money.

DLA and PIP are not out of work benefits, they have nothing to do with whether a person has a job or not. ESA is what people claim when they are unable to work. And you are naive if you think a disabled person could simply work more hours to replace the shortfall in their income caused by losing DLA. For a lot of people DLA is what enables them to work. And for people who can only work part time, well they're screwed aren't they?

I have a better idea, how about the government gets rid of the absurd points based criteria which is deliberately designed to exclude people? Or how about they get actually qualified professionals to carry out the assessments? And stop giving the contract for those assessments to companies like Atos and Capita? Or how about there being real consequences for the so called professionals who lie in their reports?

Madein1995 · 19/10/2019 00:49

Also Pip is not an out of work benefit. People can a d do work and receive Pip. Pip does not mean you can't work. I didn't work esa so I'm not sure of the link, however I agree it doesn't sounds fkar. Things seldom are within dwp! I was under the impression esa was a different assessment and criteria though?

The only way working would go against your Pip is if it contradicted itself. Eg someone has severe arthritis and cannot walk 40metres, however states they work as a carer in a nursing home doing hoists etc.

jennymanara · 19/10/2019 00:51

But I can see that if someone is doing a job and yet you are saying they need close supervision to get them to eat and brush their teeth, that may look contradictory. It might be helpful to have a letter from the employer saying they need close supervision at work - if they do,

BillHadersNewWife · 19/10/2019 00:55

It's a fucking nightmare is what it is.

Incredibly vulnerable people being ROBBED of a hundred measly quid. While politicians buy multiple properties and get fat.

It's horrifying. We will see people absolutely on their arses with this sort of thing going on.

OP appeal and appeal again. SHOUT about it.

Breathlessness · 19/10/2019 00:56

This needs highlighting again

PIP is paid to working people

wowthatscrazyman · 19/10/2019 00:59

PIP is indeed not an out-of-work benefit. But the fact that it can be used as a gateway benefit for eg ESA for eg students is a probem

JanMeyer · 19/10/2019 01:00

It's a fucking nightmare is what it is. Incredibly vulnerable people being ROBBED of a hundred measly quid. While politicians buy multiple properties and get fat. It's horrifying. We will see people absolutely on their arses with this sort of thing going on.

Yep, but apparently it has to be done because there's people on DLA getting five year awards for a broken leg, or for being a drunk or something.... 😡 Oh and it must be true because they worked for the DWP and we all know they don't ever lie, do they now?

puppyconfetti · 19/10/2019 01:04

@BillHadersNewWife

The problem is every applicant isn't the vulnerable person you describe.

Don't get me wrong I think OP relative should appeal; I think everyone should appeal. The DWP are utter cunts in my eyes for what they do to people. Does that mean I believe in lifelong awards fir changeable conditions? No. I think it's important that people are seen.

Mannamulearoo · 19/10/2019 01:14

The independence of his job & flat are very dependent it seems on various people currently giving assistance & he could appear very different if all that stopped. PIP is supposed to help disabled live independently & supports work (in assessment they'll likely use as reason why they can cope).

You do have to fill the forms in the right way & provide enough evidence, but even doing all that right many claims are refused with PIP assessments . I'm sure in hope that claiments just give up & government can save money.

The mandatory reconsideration was a fairly pointless process it didn't change anything in my case, but you have to do it to be able to go to appeal.
It can take some time to tribunal as so many are being turned down at assessment stage but something like 70% appeals are won against DWP so although its stressful it is worthwhile taking further. Getting a welfare adviser's help makes it much easier to deal with.

I scored zero points at assessment and awarded 4yrs on appeal, however took nearly 2yrs from start of claim which caused me huge stress & financial difficulties, along the way (£73 a week isn't fair for long term sick) but if awarded it will get backdated.

Breathlessness · 19/10/2019 01:18

I wonder how many people give up or die before their appeal actually goes through? It’s obscene.

user1486131602 · 19/10/2019 01:20

Go here for advice and help with a mandatory reconsideration for cla, probably be given PIP now, but can be for more!
Fightback4justcie.co.uk

Gingerkittykat · 19/10/2019 01:27

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

He doesn't live independently though, he has a lot of care from family members on a daily basis. If that care disappeared would he be able to care for himself or hold a part time job?

JenniferM1989 · 19/10/2019 01:28

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

puppyconfetti · 19/10/2019 01:30

@Gingerkittykat

Probably not, no. But that isn't changing the facts as they stand.

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