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.

The whole process is wrong. They wanted my 17 year old disabled daughter to travel 103 bus stops on her own to an unfamiliar location for her PIP assessment. My complaint is in progress but will take 18 months due to their backlog. Luckily for us they carried on paying her PIP. Feel so cross on behalf of your friend and fingers crossed the MP or CAB can help her.

Agree on contacting MP.

addition to @HardAsSnails very good post is when completing a form do not assume that the person assessing will know about the previous DLA claim, start from scratch. That can seem strange if your child has a severe lifelong disability. This will also be true for other claims such as universal credit in future.

It can be really hard completing all the things that you/your child cannot do but you do need to focus on that. It can also be hard to remember or realise what would be usual for a 16 year old.

You may have changed your lifestyle but not realise- does your child only manage dressing themselves because they never have anything with zips or buttons and have very limited clothes? Would they need help with a coat (including being coaxed into it when it freezing?)

She must copy everything and send it only recorded delivery. The MR will hopefully overturn the first decision quickly without the need for an assessment and backdate any losses. I doubt she will get any joy from them until she has provided proof as DLA and PIP are different departments.

I agree with everyone saying contact MP and do a MR for the DLA while waiting for the PIP form. And also, agree with contacting disability charity and CAB as well. Hit them with all cylinders.

Also, advise your friend to never send anything to the DWP without copying it first and sending it recorded delivery. “Losing” forms is their specialty 😡

Tell her to send as much information about her child’s disability as possible, doctors appointments, letters, specialists, written diagnosis etc. If she can afford to, send a copy of everything she has (even if she thinks it’s too much, it’s not) in the hope that her child will be spared a face to face. It’s a despicable system and it makes me angry as hell to hear stories like this.

I am do sorry your friend is a victim of a failing system. She can fill out another form. It will be quicker as she will remember what she put before. Always photocopy any forms of this type and pay for signed delivery. That way they can't claim not to have it. Can she claim reduced council tax as only one adult on property. O can't think of anything else to suggest except when she fills out PIP form it is stronger appication if an independent person like GP or physiotherapist adds a letter confirming what you say is true.

@hardAsSnails is correct.

This has happened to me several times over the years. Almost every assessment I lose my PIP/ESA fully and have to appeal for it back. I always end up back on support group/double enhanced rate. They bank on people not bothering to appeal to save money.

I've done some appeals alone and some with help from the CAB and it's always been finished a lot faster with their help. She has one month from the date of the original denial letter to submit a mandatory reconsideration letter. It write that she believes the result to be wrong and that she wants it to be looked at again. If possible attach a letter from a doctor or other medical person involved with the daughters treatment. Do not send the letter late in order to do this - you can always send more evidence afterwards.

Often a letter is enough but if not, a tribunal may be needed. Do not attend one alone, always have support from the CAB or another organisation as things will go easier.

It horrible to go through, she does have a very high chance of success - over 70% of appeals win. Money will be backdated but I know that doesn't help much right now. Good luck to them.

Did she keep a copy of the PIP form?
Did she send it by recorded delivery?
Always do both of the above.

I advise her to contact her local Citizens Advice. If she needs to do the form again they can help and advise on it. They can also contact DWP on her behalf (with her permission) and advise on hardship funds and grants that she can apply for while she is waiting for PIP to be sorted.

Unfortunately it is very harsh in that they will stop it if they don't get the form back, which is why you must keep a copy and send it by recorded delivery. Also, if you're going to miss the deadline, you can call them to request an extension.

It sounds as if your friend could do with more support. Has she had a Carer's assessment by the council? If not she should contact them to request one. She could also contact one of the carer charities as they might be able to offer useful help too.

PS take some of the replies with a pinch of salt. A lot of people have misread the situation and assumed that the child was assessed and then turned down for PIP. This is not a matter of appealing an unsuccessful assessment, the child hasn't even been assessed yet because they didn't get (more likely lost) the claim form.

Oh that's terrible. The way carers and disabled people are treated in this country is awful. The saying "You can judge a country by how it cares for its weakest citizens" springs to mind

I know you said you aren't asking for contributions but could you set up a go fund me just as a stop gap? I'm sure she doesn't need the worry about where the next meal, or car tax is coming from as well as having the battle with the council.

It’s worth for the future ensuring everything is sent recorded delivery
Ring up and check they have received it
Photo copy everything that you send the DWP
If she has any proof of DLA that would be worth sending in as evidence of her claim
I did the forms for a friend ( renewal ) pip
She had recently had a ESA award that put her in the support group
I included the ESA award letter with the PIP renewal along with a letter from the doctor that confirmed she had a prescribed wheelchair and a copy of her prescription.
She was give 5 years award and no face to face

We got three reminders before they cut off our payments (dd refused to fill in the form and she has capacity so nothing I could do) if this is the case with your friend I'm not sure they will reinstate, but it's back dated to the application date. Most important thing is to get the form back ASAP beyond that contacting her mp might be helpful to get the dla extension

Always, always, always send info to DWP by the PO's next day Tracked system, it is over £7 each time, but it has a number you can look up on the PO's website and a photograph with time and date stamp of the signature of the person at DWP who received it.

They said I'd not sent something back to them within their timeframe, then went very quiet when I produced a copy of the signature and time and date stamp.

This will have been crystal clear from the existing DLA paperwork they already had
HardAsSnails is spot-on. DWP PIP won't look at it unless you shove it under their nose.
IIRC, there was a box on the PIP form asking if they could access the DLA records but I sent a photocopy of it all anyway. they ask permission to look at medical records, but there's no guarantee they actually will.

There's another PIP thread running, some of the advice on it may help your friend,
www.mumsnet.com/Talk/_chat/a4067746-Pip-assessment-report?msgid=101413974

There is little point in going to MPs, Papers etc ( well not yet), as there is a process that needs to be followed. She needs to immediately contact her local Welfare Rights Officer in Local Council or CAB. A mandatory Reconsideration needs to be submitted asap. She can either do that herself on the phone stating why she disagrees with the decision and ask for it to be looked at again. Have a look at the descriptors of PIP and state why her son cannot do these tasks. It is currently taking 10 weeks for Mandatory Reconsiderations to be looked at, so quicker the better.
If the MR is refused, she can submit an appeal. It's a really high success rate for appeals at moment, especially for PIP. She should get representation from Welfare Rights.

Apologies, I see they lost the PIP form. Contact Welfare Rights and her MP to see if DLA can continue to be paid whilst waiting for a PIP decision.

Sadly too late for the OP, but for anyone else claiming PIP/ESA it's critical to complete the forms electronically so that you can print off a second copy when they "lose" the first.

If you want to avoid the first being "lost" you need to make it crystal clear you can knock out as many copies as it takes. The best way is to print the whole pack with a header with the Name and NI of the claiming plus "Page X of Y" as a footer which guards against "lost" pages too.

If you can, add all the medical letters, notes and results as a numbered appendix and include references in the main form.

Have a few copies to hand for the assessment, as the assessors never have one (they aren't allowed to) and you can offer to give them a copy (they can't accept) to take away with them.

Also send a copy to the decision maker as well as the assessment centre.

The trick is to let them know that you aren't a pushover and they're better of shitting on the next claimant. It's not nice, but since it's what people repeatedly voted for, you can't really grumble.

I’d advise her to contact her local CAB, not only can they help with the benefits side of things, but they will know what grants or emergency help is available, locally or nationally.

I always type responses to the question, then stick them in on the form. That way, I can say as much as I want to. I then save those responses and scan the whole form into my PC.

I always send the form next day delivery, so that someone has to sign that they have received it.

DD1 has had DLA since she was 3. DD2 was refused at first application at 11. I put in a mandatory reconsideration request and quoted every response I'd given that contradicted their 'assessment' and told them that I failed to see how anyone who had actually read the form could conclude that she didn't qualify. They awarded it on reconsideration.

I would contact the local welfare office and MP if useful (some aren't). Can you tell what the needs of the child are? The issue is, the DLA criteria is very different from the PIP criteria. I hope your friend geta it sorted. I have a DD with severe autism and severe learning difficulties still on DLA. We will have to switch over in a couple of years and these kind of stories scare me to death.

I put in a mandatory reconsideration request and quoted every response I'd given that contradicted their 'assessment' and told them that I failed to see how anyone who had actually read the form could conclude that she didn't qualify.

I had to do this when we first applied for my nonverbal severely autistic 3 year old. I really think they don't read it esp when you apply and ask for an MR. Only a tribunal appeal gets someone to really check it out.

All done on purpose because most will not fight until the tribunal.

Always send by special delivery, and copy everything that is written in the forms by photo or photocopying them it will make it easier if forms are lost.
Get your friend to contact local MP to see if they can help speed things up, I really feel for her such an awful thing to happen to people that are the most vulnerable in society.
Hope it gets sorted quickly for them.

Agree @dairyfairies, my severely Autistic non verbal ten year old son has been getting DLA since he was three he got MRC and LRM from 5 I did a change of circumstances last year as I knew he qualified under SMI rules ,I had to go to the tribunal though where they awarded him HRC and HRM straight away .

I'll try to respond to as many points as possible, thank you:

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. Unfortunately shielding her child had made it impossible on this occasion. She has not been to a shop, post office or pretty much anywhere except hospital in an emergency since mid-March, relying on a weekly online grocery delivery and so on, or going without. She felt she had to take the risk and post the form in the prepaid envelope into the nearest postbox. Even then she hurried there and back while her child slept and before anyone was up and about. She also felt that she had no option but to send original evidence as she has no photocopier or scanner at home. She is understandably devastated and beyond worried, not just about the stoppage of DLA, refusal of PIP and the knock on effect upon everything else, but also about the loss of this highly sensitive and confidential personal information about her extremely vulnerable child. While those of us who get reasonable sleep and time to think, have tech at home or work or people on hand to help us, or live less stressful lives think we would have done things differently, I can see exactly why she had no choice but to do it this way. Rather than just simply sending out another form immediately, DWP have flapped their wings and left my friend floundering to deal with the resulting chaos.

It can't even be good for their own workload or for the mental health of any staff who actually do care about the job they do and the people they deal with.