Less of an AIBU, more of a DWP HAVE BU: DLA suddenly stopped & PIP refused - what can be done for my friend & her severely disabled child?!

[ConcernedAboutMyFriend]

NC. I am very worried about my friend and her little family. Can anyone in the know advise me urgently how to help her or what should be done please? Just to be clear from the outset, I am not seeking PMs or offers of financial help.

The background & circumstances: My lovely old friend lives in England, sadly geographically distant from me. She is the only parent and carer for her severely disabled child and has no extended family support at all. She has provided devoted care 24/7 for over 16 years at great cost to herself in terms of her health, having to give up her career and pretty much any sleep, social life or 'me time'. Recently her health is of particular concern and she has experienced 3 bereavements of people close to her. The need to shield her child on the advice of the medics since March and ongoing well into next year has added a new layer of worry and isolation.

Her child having turned 16, and being in receipt of DLA at the highest rates for both mobility and personal care, she was required - with much trepidation given the negative reports about it - to apply for transfer to PIP. This process was then put on hold before it really got started because of Covid-19. It was then restarted, and my friend eventually managed to send off the PIP application form having had to go without any sleep at all for 2 days to complete it while her child slept. So far so good, sort of.

The immediate problem: My friend has received a letter to say that DLA is stopping immediately and PIP has been refused. This has the knock on effect of stopping Carer's Allowance, severe disability premiums on Child Tax Credit and Housing Benefit including the 'spare bedroom tax' exemption and so on, upon which they have to entirely rely. This is even to the extent that the family car - an essential for a severely disabled child in a rural area who can't access public transport and needs to be taken to hospital and for calming drives - has suddenly lost the disabled exemption and is therefore no longer taxed. When she rang to find out why, DWP said they had not received the PIP form back, meaning it has been lost in their system or the post! While they have registered it for a 'reconsideration by a decision-maker', they warned that there are no guarantees DLA will be reinstated, and if so when, and could give no indication how long a decision would take. Every phone call has meant her being on hold for over an hour - difficult in itself as a sole carer - and even then getting no firm answers or even just getting cut off!

In the meantime, my friend and her little family have had the rug very suddenly, very comprehensively and very firmly pulled out from under their feet, and at an already very difficult time. This is through no fault of their own. My friend did everything right. DWP just needed to send another form and give her time to complete it, while continuing to pay DLA in the meantime so the family did not suffer. That would have surely been the humane response?!

I'm worried about my friend, that this extra and unfair layer of unkindness, of uncaring struggle, will prove too much for her. I'm not sure what I hope for from this thread. At least to raise awareness that this is what can happen to innocent people and this is how some of our most vulnerable and deserving are being treated on the quiet. If anyone has knowledge and experience in this area, or any bright ideas, I would welcome them.

it is good advice to photocopy forms and evidence and send signed for. My friend would usually do this, or at least get proof of postage, under normal circumstances

take photos with a camera. I would really try to get to a post office to send it recorded or ask a neighbour to post it for her. It's really important with these things.

This time round, does she have a camera phone? I took photos of my form etc as I couldn't get to a scanner.

While that helps, the best thing is to make it clear to the assessors (Capita/ATOS) that you can send as many copies as they can lose, if at all possible.

bear in mind the entire system was designed from the ground up to ensure you can't use assistive and adaptive technology to complete the forms and process. Look at the provision for able-bodied people for interacting with government departments, and compare them with the total lack of provision for the disabled for claiming these benefits.

Then come to a conclusion.

The car is just an old, high mileage car, not motability. It gets them from A to B. They don't go far, just to hospital, for calming drives and to get out of four walls and so on; they have been no further than the immediately surrounding counties for all these childhood years. Now they haven't got that as the disability tax exemption has stopped immediately with DLA. The post office is inaccessible because she can't leave her son, let alone go in with shielding him.

@DGRossetti

This time round, does she have a camera phone? I took photos of my form etc as I couldn't get to a scanner.

While that helps, the best thing is to make it clear to the assessors (Capita/ATOS) that you can send as many copies as they can lose, if at all possible.

bear in mind the entire system was designed from the ground up to ensure you can't use assistive and adaptive technology to complete the forms and process. Look at the provision for able-bodied people for interacting with government departments, and compare them with the total lack of provision for the disabled for claiming these benefits.

Then come to a conclusion.

I wouldn't normally go along with conspiracy theories but I find myself nodding in complete agreement here.

It's important to have a copy to provide them with though, whether it's electronically stored, a photocopy or a photo (I was planning to just handwrite it again if they lost it).

If you let them know in advance that they have a copy to start with, they tend not to "lose" it. Saves a few weeks. Same with numbering pages to ensure they don't "lose" any and assess an "incomplete form".

The bottom line is you are playing a game. You aren't told the rules, but you know the outcome each side wants to reach, so you need to work out what the other side might do to get to their finish point, and head them off to go where you want them to go.

Sorry if that seems too cynical and bleak, but it seems to work. But it is a fairly good introduction to how the disabled are treated in 2020 (which may have been the point all along, I don't know) - like shit and getting worse.

@Babyroobs

Did you send all the medical evidence with the PIP form? Get help with the MR. PIP is a different benefit with different criteria but if the child is severely disabled then they should still qualify. Has your friend seen the assessors report ? What were the reasons for refusing the PIP?

Why do people post responses without reading the original post?

It's been a demoralising, exhausting process and usually detrimental to their health.

Good thing you posted that. If too many people started posting how easy it was, or how it didn't dehumanise them and make them feel ashamed to be alive the Tories would think the system had broken and rush to fix it. Generally I think the aim of the system is "out of sight, out of mind". With the exception of the BBC "isn't it wonderful being disabled ?" programmes every so often making it seem like a lifestyle choice.

I thought that in covid times they were meant to be a bit more flexible and helpful.

Some building societies & (if they are open!) Libraries will scan or photocopy & CAB as her dc is so disabled ...
Whatever form of disability her dc has I would suggest she contacts
that support group often they know of local organisations who might be able to help with things like forms, coping & posting - The local carers groups might be able to get some help or have local links
I could make further suggestions regarding form filling - nb make notes on front of form saying what is attached
I titles my forms by letters & put page numbers on them ie form A p1 & referred to specific issue & what you should do on your answers on form is to refer to specific experience that dc had & what has been said in report.
What I did find is the letters were sent to local delivery office which is used near to the DWP & the time & date of arrival is to there rather than the DWP but that is still evidence it arrived (being a truly awkward blighter I contacted the PO to check what the initial meant on my form)

@Orangeblossom7777

I thought that in covid times they were meant to be a bit more flexible and helpful.

Not really.

By the way some charities do have on-line help how to fill in PIP & other forms (will do a search late) basically fill in everything do not leave gaps & repeat same things if they are relevant - if the individual needs help for assessment state this on the form & you can ask for a recording at the time but the recorder has to conform to their (blinking difficult) specs

@Orangeblossom7777 meant to be more helpful??? what planet are you living on - this is the DWP - I mean really??? pretty obvious you have never had any dealings with them!
I asked for help & my relevant charity gave me enormous help but this form is a nightmare especially when the person concerned disability is centred more on Mental Health Learning Disability ASD or any Neurological or Emotional issue or disability or any intermittent or pain based one as that does not conform to the way the form is shaped

if the individual needs help for assessment state this on the form

For PIP the assessor doesn't have, nor has seen (nor is allowed to take) a copy of the form. When DWs assessor asked if DW had a certificate of visual impairment, I said "Yes, it was page of the submission". Only they hadn't seen the submission. I then offered a copy of the certificate to take away, but they aren't allowed. In the end she just made a note she'd seen it after I said I'd resend the whole lot to whatever address is needed for them to get it.

Like I said, you're not supposed to "win". And much like thermodynamics, Breaking even is tricky too.

Currently you can ask for pip phone assessments to be recorded; this need to be requested well in advance and the DWP will organise for a copy of the recording to be sent.

I would strongly advise you discreetly make your own copy too.

I think you have had some good responses here re PIP. What worries me is your friend appears to have absolutely no support, caring for an individual with significant needs is exhausting and can lead to social isolation and depression. She really needs to contact a local carer’s organisation, who could advocate on her behalf with the local authority to get her some respite, even just a few hours. She also needs an Emergency Care Plan, what happens if she becomes ill and is unable to care for her child?

In face to face times, you still need to ask to record in advance, but the onus is on you to do the recording.

The trick is to get them to come to you, which we did. You do this by waiting for the appointment (absolutely no point in trying to do anything before this) and then contacting them to ask for a home visit. (I don't know if they've run out of inaccessible buildings yet) which involves a bit of a scary wait of having to miss the designated appointment before they agree. Even then, our first home visit never happened. (I have a delightful pair of recordings of a nice lady from ATOS telling me they are sorry they had to cancel, while at the same time there was another nice man from ATOS telling DW that they hadn't received the request ... luckily I never needed to use them).

The final fun bit was that DS worked next door to the building they had arranged the appointment in (in Birmingham City Centre) and told us that it was never occupied - which he checked for us when he went into work. So had we actually turned up at 8:00 am (which was when they sent us the appointment) it would have been a fools errand anyway.

I can't afford the luxury of anger - it's too draining when you need to look after loved ones. But sometimes I do get a teensy bit miffed.

Yes, I have claimed PIP so I know that they are like.

i am referring to some guidance they had for dealing with claims during the pandemic. Will try and find it.

See here under

Health assessments for benefit claims

publications.parliament.uk/pa/cm5801/cmselect/cmworpen/732/73202.htm

they should take a proportionate and flexible approach to evidence, which demonstrates the appropriate level of trust in claimants, recognising how difficult it may be for claimants to access medical evidence and appropriate support. We recommend that the Department collaborates with the NHS and relevant professional bodies to ensure that healthcare staff can provide claimants with the evidence they need, while ensuring this does not put undue strain on medical professionals. (Paragraph 118)

16.We recommend that the Department investigate reports of significant delays faced by people whose claims began before the coronavirus outbreak, and publish its findings. It should also monitor and publish data on the time taken to process these claims, on an ongoing basis. (Paragraph 122).

17.We recommend that the Department assesses the impact that the coronavirus outbreak has had on the length of time taken by the Mandatory Reconsideration and appeals processes. In light of the evidence of increased delays, we recommend that the Department pay people who are appealing a PIP decision an assessment rate, as they do for ESA claimants. (Paragraph 134).

18.We encourage Ministers to continue to engage with support organisations to ensure that, in practice, people are not facing difficulties in having their PIP awards extended. (Paragraph 137).

19.We recommend that the Department investigate why the number of claims for PIP has fallen so dramatically, and take steps to identify and address any barriers to claiming. (Paragraph 141).

20.We recommend that the Department work with its contractors as a matter of urgency to offer audio-recording of assessments by default, subject to the claimant’s consent, no later than September 2020. (Paragraph 147).

21.We recommend that the Department set out, in response to this report, the steps it has taken—and any future plans it has, with dates by which it expects work to be complete—to ensure that its communications with disabled people take account of their communication needs. (Paragraph 152).

22.We recommend that DWP considers whether any of the changes made to the assessment process in response to coronavirus could usefully be made permanent, for some or all claimants. (Paragraph 156).

I would email the MP and quote that

they should take a proportionate and flexible approach to evidence, which demonstrates the appropriate level of trust in claimants, recognising how difficult it may be for claimants to access medical evidence and appropriate support

mentioning the specific problems

My MP was really helpful- they seem to have contacts in DWP