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?

I got a lifetime award 6 years ago. It’s been re-assessed twice already 🙄. I’m not quite sure how a miracle cure happened so quickly.

My assessor flat out lied on the write up of my last assessment and missed out a whole chunk of what I’d said, meaning I dropped from 10-12 to 0 points on several key sections. It seems to be the case now that they only employ bullshitters, whereas in the past I’ve always found the assessors to be good at their job. Luckily on my mandatory reconsideration I was able to recover some of the points, but I still dropped from enhanced to standard daily living rate. Shame my disabilities and needs haven’t reduced by the same amount. Being told flat out I’m a liar hurts too.

Hey, totally sympathise system is a mess & nasty. I can see some potential value in a reassessment when someone becomes an adult if award is made in childhood. In some conditions/situations perhaps they might go either up or down on the level of award. But a one off and with a very different process more like - has anything major changes? Nope - ok continue.
They make adults with degenerative / progressive conditions have reassessments on PIP which I think Parkinson's UK is fighting against.

Advice for fighting it;
1.I'd 100% agree re asking for assessors report

1. Look on benefits and work website, logo is purple dog. They have lots of resources & forums. The full detailed guides are behind a paywall of £20/yr subscription but are detailed and very useful to have for mandatory review & tribunal.
2. Speak to fight back for justice - they can help you to write the land reconsider application, advice on any extra evidence and help you complete the forms. They know the case law from successful and unsuccessful tribunals and where people loose points by not knowing extactly what to include and highlight*
3. Don't expect MR to be successful but the tribunal likely will be. He will get a rebate of all the wrongly withdrawn pip from time he list it up to the tribunal (assuming successful) and so hopefully this is helpful to know.

In terms of pip forms key points when filling in:

Not just can they do it - do they use any aid (doesn't need to be a specific disability aid if it's something average person doesn't use) and supervision which sounds key here - supervision direct watching and guiding and also eg w medication prompting. You need to show not just that supervision it aids are not used but what happens without them.
"If I couldn't go to his house for a day he would forget to brush his teeth and shower." Or without prompting he showers but forgets to wash his hair or doesn't wash out shampoo. I put everything down aids a se even light-weight hair drier, electric tin opener, little step and handle to help get in & out of bath. For all ideally you need to explain why they are needed & what is risk or impact without. Getting them shown to be recommended by a professional eg a doctor (GP can mention in notes briefly even) or better still an OT (see below) supports claim but isn't necessary.

List examples of any accidents or forgetting (for things that are scored on pip) to illustrate the help aid is necessary.

When talking about cooking look at the points score - explicitly state (as per truth) eg he is unable to prepare a sandwich or a boiled egg and toast without assistance. Then elaborate as to why and what assistance he needs - If he boils watet he doesn't understand the safety risk and can burn him self or touch hot hob/forget to turn it off. Or he will eat the egg part raw and expose himself to illness.

The other key is timely fashion - less than twice the time it takes a "normal" person.
So for me, yes I can in theory walk to the nearby corner shop but 1. Impact - it causes me significant pain esp w a delay later but 2. It takes me more than double time of normal person. Then you explain why - slower pace and having to stop frequently.

For him it might be that you can say he can wash and dress and dresses independently but 1. Only if you lay out the clothes for him and 2. It still takes him twice as long to do it or basic cooking - he makes a simple meal but requires a lot of prompting and gets distracted or distressed.

As well as how long it takes, it's impact or distress caused (at time or delayed) - so if he can do his part time job with some interaction BUT in doing so he is exhausted and withdrawn for the next 2 days this is worth stating.

Remember you gave to think how long it would take if you removed ALL assistance. Could he choose the ready meal from freezer, appropriately close freezer door after, know which bit to take off or Pierce lid so it doesn't burst (!) read instructions and correctly set the time on microwave.

For finances - document the help you give but also what happens if he has free run at money?

The other thing is to make sure you and others submit supporting evidence, which might be in the form of a diary of 1 week of what you did for him, any incidences/accidents/nearmissed in the last 6 months. With his permission you might ask his work supervisor or colleague if appropriate to write a brief piece on any adjustments they make for him or support they give him. You can decide if it's useful to include.

Professional evidence - if you can get an Occupational therapist to do an assessment the aim usually is to find ways to help with and if they recommend aids for any daily living activities it helps the cases and him as a bonus, plus the report will state his safety and ability to kitchen, dressing etc. Ask your GP for an assessment.

**For anyone with MH conditions note they used to ask for gp records and you submit hospital letters. But they don't ask for psych notes - if these would be useful, which often they are more than GP, so not just the MH letters you get but full notes made on the system by your consultant, then request from your MH provider via GDPR. ## looks like you might now need to also request your own gp notes for tribunals from a news article I saw.

Good luck and hope this helps you and others.

I’m dreading my PIP renewal next year tbh. I’m amazed I got it this time actually as I have a hidden condition where a lot of the time i’m Ok but when i’m ill i’m Really bad ☹️ I need a lot of supervision too to take my meds which people don’t always pick up on unless they’re my close family. And as for your question @Pinkmexicanskull I do think it’s disgusting. Look on the CAB website and it will tell you question by question what they are looking for when you answer. Hopefully this will help with the MR.

Some people are so stupid . I used to work with people with learning disabilities in a supported living house. About 1/3 of them had small part time jobs (cleaning, kitchen help, admin). Some had support workers to support them at work. The one who needed the most support with daily tasks had the highest paid, most hours job. My uncle has a LD, and needs support but he worked full time for many years. It is perfectly plausible that someone can need support with personal care/cooking etc and work.

It sounds like your family member is entitled to PIP...at the very least due to his need for support with his personal care. Its terrible that it has been stopped. Get a copy of the report, fill out the mandatory reconsideration once you’ve read it, and get help from Citizens Advice if you can. The system is horrible.

I think there are fewer long DLA awards being given out now. Many of my friend's children with asd and sld who are similar to mine but 10 years older had highest rate care and mobility from about age 6 through to adulthood.
I don't know anyone with a child my age who doesn't have to reapply at least every 3 or 4 years. The high rates are also less likely to be given with ridiculous arguments as to why they shouldn't. eg if you can't give examples of where your teenager has hurt a member of the public, they don't have challenging behaviour ( because the parent always makes sure they are nearest and are the one getting punched or bitten).

Lifetime awards should never have been given because DLA/PIP is about needs and unless someone is paralysed, or suffering from an inevitable progressive illness, nobody, not even health professional say that the same needs will be required for their entire life.

In the OP situation, it's a case of whether he needs care that means that otherwise, he wouldn't be able to adequately feed, care for, look after himself, or that he can, but additional support is provided as nice thing to do.

If the former, than the assessment failed to pick up the level of need and an appeal is called for. If the latter, then it was the correct assessment.

Sadly, some family members can at times assume that their children/family members are less capable than what they really are. I've seen this working in care, where residents which support from the staff have become gradually much more independent but their family refuses to acknowledge it, as if they wish them to remain dependent on them.

Not saying it is the case in the OP, but at the same time, it might be so. No-one online could realistically say whether the assessment was correct or wrong.

@dangermouseisace I have done those type of jobs. I can totally see you can do those types of jobs and not be able to manage your finances or be able to do that type of job in an atypical employer e.g. a friends adult child with LDs works in an admin job for Mencap and they are very supportive. But I don't see how you would be capable of those type of jobs and have LDs, and not be capable of dressing yourself or putting a ready meal in the microwave. The types of tasks under PIP are pretty basic.

@jennymanara

This line in your post really reads like some of the F2F Assessors' assumptions. But I don't see how you would be capable of those type of jobs and have LDs, and not be capable of dressing yourself or putting a ready meal in the microwave

It's assumptions like those made by assessors who "can't see" that lead to people scoring 0 points when they aren't even relevant to the actual PIP questions.

putting a ready meal in the microwave

Ability to reheat ready meals is specifically not part of the PIP criteria.

Q3 Preparing and cooking a meal
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/3-prepare-and-cook-meal/

It also takes into account the time that preparing that meal can take, the organisational skills needed and whether the person is safe to do so unsupervised or without prompting.

Q4 Eating and drinking
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/4-eating-and-drinking/

Someone should also be able to do those tasks "reliably, repeatedly, safely, and in a timely manner"

not be capable of dressing yourself
Q8 dressing and Undressing
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/8-dressing-and-undressing/

Many physical or neurodevelopmental conditions can be a bar to this, organisational skills for a start, try reading about deficits in executive function.

Again the criteria for doing those tasks "reliably, repeatedly, safely, and in a timely manner" are part of the answers.

Just because you "can't see" how someone couldn't have a problem with doing a certain task does not make that a fact that they have no problem with it. Rather it's your non-understanding of their individual disabilities that is the problem.

It's the problem with a lot of the assessors too.

A good friend of mine has cerebral palsy and had a lifetime DLA award. You only need to watch him walk for two seconds to understand exactly what his level of needs are.

He no longer gets anything, and losing it means he also lost his motability car and his blue badge.

Unfortunately this has been happening for years and people only tend to realise when it impacts on someone they know. The moves made against disabled people in this country over the last decade are absolutely horrifying.

DLA was based on diagnosis

No it's not. it's how the disability you have impacts on you. Many without dx get DLA. Likewise, not everyone with a dx qualifies for DLA.

I amcurrentlty in the middle of appeal I have a life long condition that never changes yet an assesor decided I wasn't disabled enough for pip.do appeal it whatever anybody says.

Go through the form line by line and highlight every single inaccuracy.
Ask for a MR
Go to Tribunal if that is bit successful.

Over 70% of these decisions are overturned and the courts are spitting nails as the evidence from the DWP is often appalling and fails at the first hurdle.

This happened to my friends son at 16....zero points.
By the time it got towards Tribunal the DWP looked again and he now gets Enhanced rate Care and Mobility as does my son.

My son is nearly 17, cannot plan or carry out a journey by himself, still requires supervision in most skills and would do even if he lived alone.

Obviously I cannot say what will happen over the next 10 years. I hope he will progress enough not to require enhanced rate but time will tell.

There is now talk of “light touch reviews” for those who are unlikely to make progress in their condition and quite right too. Too many terminally ill people having benefits stopped for living too long etc.

Sadly I think it does have to be for a limited period only and renewable, as horrible as the whole process is. There can't be different rules for different people, and yes things change, some people lie or exaggerate to get more money, etc etc so it should be assessed at intervals.

Sadly I think it does have to be for a limited period only and renewable, as horrible as the whole process is. There can't be different rules for different people, and yes things change, some people lie or exaggerate to get more money, etc etc so it should be assessed at intervals.

Of course there can be different rules for different people where medical issues are concerned. Someone debilitated by joint issues who receives a hip replacement may then no longer need PIP. An adult with ASD isn’t going to improve. An adult with CP or paralysis or a missing limb isn’t going to have fewer care needs as time goes on.

Lifetime awards should never have been given because DLA/PIP is about needs and unless someone is paralysed, or suffering from an inevitable progressive illness, nobody, not even health professional say that the same needs will be required for their entire life.

Autism and learning disabilities aren't changeable conditions, they affect a person their entire life. Why shouldn't autistic people have a lifetime award of DLA? They'll never not be autistic, developing coping strategies doesn't miraculously make you non-disabled. To use your own logic against you, you could argue a paralysed person in a wheelchair shouldn't get a lifetime award either. I mean, once they adapt to being in a wheelchair and can get around they aren't that "disabled" anymore, right?
Think that's stupid? That's because it is. But entirely in keeping with your logic.

My brother has autism and a moderate learning disability. They aren't "progressive" conditions but I could have told you 100% that the support he needed as a child would be required the rest of his life. You know why that is? Because autism doesn't magically get better, that's why 😡😡😡😡😡😡😡😡
By your logic a person with severe autism shouldn't get a lifetime award because "it might change", right?

But I don't see how you would be capable of those type of jobs and have LDs, and not be capable of dressing yourself or putting a ready meal in the microwave.

It's not just about being capable of dressing yourself, it's about being able to pick appropriate clothes for the temperature/weather conditions, knowing when to change your clothes, not wearing the same shirt all week because you like the feel of it for example. I have Aspergers, I'm supposed to be "high functioning." Yet under PIP I got the maxiumum points in the cooking criteria and the dressing and undressing one.
I have an above average IQ, I also have sensory issues, processing issues and a notoriously short attention span. Which is why I got the points for those two questions.
I can physically dress myself, I can't be relied upon to have clean clothes though, or to change them when appropriate, or wear suitable clothes for when it's cold because I don't feel temperature changes like other people do. I could live in the same clothes all week once I've found something I can tolerate on my skin, and probably would if my mother didn't intervene. Yeah, not just about being able to dress yourself is it?

There can't be different rules for different people

Ummm, you do know there are different rules for different people already right?
People judged to have severe or non-changing conditions get an ongoing award, what's called the light-touch approach. And they won't be assessed again for at least ten years.
What a stupid thing to say, you know there's a special rule for terminally ill people with less than six months to live? Tell me, do you disagree with that too? Seeing as how you think everyone has to be treated the same.

What point do you see in reassessing people with autism and learning disabilities? Or those who are visually impaired? Do you think blind people are going to magically regain their sight at some point in the future? And as SinkGirl pointed out a person with cerebral palsy isn't going to have fewer care needs as they get older. But you think they should be reviewed every few years. Because????????

get advise on filling in form & fill in every bit - every question - do not leave anything out. You CANNOT write too much - refer back to everything & everybody who has helped in anyway (especially official people be they public workers charities or what ever) put list in the front with the names & contact details of these people. refer to individual issues/incidents that the person has had that have caused them problems. send copies of assessments (no matter how old) nb many people who have asd do not get follow hospitals treatment BUT social help/education should be mentioned as it is a type of treatment for ASD form of social disability. If they/you have issues with hoarding or OSD type issues & it causes problems state this. & be prepared to repeat issues for different answers because issues often affect different parts of the individuals life. The point is this - try getting into work - particularly full time work & going through interviews with ASD no matter what training/courses/or education you may have? people may get interviews but even when companies ( & public organisations) state that they are disabled friendly it is dependent on luck as to whether the company or individual interview is open to adapting the way they interview - & the stats (NAS) show how difficult it really is (gets off soap box...)

cont - sorry may not be clear - basically you don't get offered job, or cant work at job, because of disabling affect of asd, but you cant get support for it - it is twisted

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?

Assessors' reports are audited, and sent back to be revised time and time again, to make them less favourable to the applicant. A friend who trained to be an assessor walked out 6 weeks after completing her initial training, because the system was so bloody dishonest. Time and again, the government has denied that there are quotas, but I can't think of any other plausible explanation.

I'd encourage anyone to appeal, and to get advice from a welfare benefits specialist. This increases the chance of an appeal succeeding quite considerably.

I've done so many appeals I couldn't even guess at a figure, and it's not at all unusual for someone awarded 0 points at assessment to get the higher rate of both elements at tribunal.

If you live in Dorset a charity called Diverse Abilities will help you fill in the PIP form for £45 donation, they can't attend the assessment with you but will attend any appeals.

I'm waiting for my decision on PIP for epilepsy, depression & schizoaffective disorder which affect my activities of daily living. I work part time but it's a struggle & I explained why to the assessor.
I had the assessment on September 18th.
I've been on low rate DLA lifetime award.
I don't know if I will get PIP but if I do I would expect to have re-assessments in the future as that's just what they do now.
If they're going to turn me down I wish they'd hurry up & decide.