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.

Also check it is not a mistake...

The Department for Work and Pensions (DWP) has been accused of “careless cruelty” after it mistakenly sent out letters to disabled claimants, telling them their disability benefits had been stopped for failing to fill in review forms.

www.disabilitynewsservice.com/dwps-pip-letter-blunder-shows-its-careless-cruelty/

Also look out for the sneaky DWP trick of demanding a reply from you "within one months of the date of their letter."

The one I received was dated over 2 weeks previously to the date I received it plus there was then a bank holiday which gave me another day less on which to post the reply to them.

They appear to give you the better part of a month, but in reality you have about a week of working days to get the info they want to them.

I used to reply 'Thank-you for your letter of 1 September which I received on the 15th,

About my pp about DWP knowing when they made this brutal decision that this child is severely disabled because they already had access to the then-existing DLA award and paperwork:

One or two pps have replied that they think DWP wouldn't have had access to it. I had read somewhere that they would and my friend understood that they would from what she had been told or read. On checking with my friend, she is fairly sure that DWP had referred to having access to it on the phone, and the situation they are in would also have been clear from the information she gave them previously on the phone that they said they had noted - the maximum DLA awards for high mobility and personal care needs, the severity of the disabilities, the need for lifelong and round the clock care, that she was the sole carer, the fact that they are having to shield, the bereavements, that she hasn't been too well and so on. This would have been available in the notes on the system for the case manager and decision maker when the decision to stop paying DLA with immediate effect and to refuse PIP was made on the grounds of a 'missing form'. One member of staff told her it could have been misassigned on receipt to the wrong person's NI number, but there was no way of knowing or finding it unless it happened to turn up in a file being worked on.

Thanks for the link to the Disability News Service. That article rings very true, in the DWP's ineptitude, callous attitude and actions, and the distress and worry caused for claimants, even if the specific situation with my friend is different.

They have a severe and lifelong range of disabilities and will always need round the clock care

Can the child’s consultant or GP apply urgently for PIP, usually in this sort of situation PIP can be granted on medical records alone or a letter from a specialist. It might speed things up.

I agree it’s awful she’s lost all funding in this way. But sadly not uncommon. Severe life long disabilities and the need for round the clock care cost are very costly to the NHS. If child has no rehab potential, the people who deal with PIP applications might not prioritise her funding the way they should. It’s very wrong and sad. But without the support and documentation from the consultant it can be a real battle to get PIP quickly.

The letter wasn't sent out in error, unfortunately, even if the decision is very wrong. DWP confirmed on the phone that the decision had been made and my friend has already received a separate letter from a different DWP department - Carers Unit? - to say her Carer's Allowance has also been stopped.

I know it's a different issue, but for my own thinking and understanding I have looked at how much my friend receives (received!) in Carers Allowance and then worked out the hourly rate she gets (got!). It is £67.25 per week. She cares for 168 hours a week, which works out at about 40p per hour. And they've even taken that off her now.

I'm really surprised the payments stopped immediately, unless she only got the form to them right on the deadline. Usually there's a few weeks of DLA continuing to be paid while a PIP claim is assessed. It only actually stops a few weeks after a PIP decision.Did she send the form in with plenty of time? If so she absolutely should flag it to her MP etc if they have stopped her DLA before the deadline.

I have passed on some of the most helpful suggestions and information from pps, thank you. She has been trying to get some help and advice, but it's proved to be very difficult, possibly because of the coronavirus situation adding to the limited time and opportunity she has. Obviously she can't go anywhere to seek advice, and has found helplines engaged for hours and on limited days and short hours or just taking messages. She has left requests for callbacks and mentioned the urgency. One carers service couldn't help at all because she was just out of area, while the one in her area couldn't help with anything other than the most basic benefits advice.

This is someone who under normal circumstances rarely gets the chance to even go to the loo in peace or have a bath and so on, so to have to deal with all this DWP/DLA/PIP nonsense, and the multiple knock on effects on top of that, must be soul destroying and back breaking. As I said in my OP, I am worried that it is and about the impact on her health and wellbeing - and this can't help but impact on the child too, despite her obvious devotion and very best efforts.

It all seems so inhumane and unnecessary.

She could ask for a new PIP claim form - and start a new claim, I think they are backdated from the date of claim.

they are a nightmare (DWP) - tell her always to keep everything and photocopy things to send to them.

the previous DLA info should also support the new claim although PIP is different

Some useful sites for your friend

pipinfo.net

gives all recent changes and is the site advisors use I think

www.benefitsandwork.co.uk

subscription site but also readable forums, useful

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

Also support sites for specific conditions may be able to help- they can even send people out to do the forms. I understand PIP can do this as well but not sure about that really. For example friend with MS had someone come and help

MP may still help, they got a home visit for example in past when Atos were not allowing it.

the previous DLA info should also support the new claim although PIP is different

PIP was specifically designed to render all and any previous DLA claims invalid. Any info will need to be reformatted and rewritten to fit the PIP template.

It was mentioned upfront by someone else but her local Citizens Advice Bureau (may be phone and post only at the moment) should be able to advise and help with making an appeal.

CAB should take a holistic approach and check she is claiming everything she and her child are entitled to.

Is the child accessing education? I'd be surprised if not, generally attempts are made for the child to remain in school or college until 18 with an EHCP. Many specialist schools have family officers who can provide advice/support with completing the forms, copying documents etc. And whilst the child is at school, she gets the window of time in which to complete the forms, make calls etc. (presuming that she is not working as she was claiming CA)

The previous DLA info may be of use as confirm diagnosis, limitations etc but would not be up to date perhaps.

Any paper evidence is useful though especially if has to go to appeal. I have won two appeals so quite experienced with PIP

I don't know if this is any help

I went to the post office recently

Only 2 people allowed inside at once

Face masks to be worn

The post office employees were all behind solid plastic screens

Payment via card

Receipt with proof of postage

Another case where DLA to PIP forms seem to have gone wrong...worrying

www.bbc.co.uk/news/uk-england-nottinghamshire-54834349

An update, and I wish it was good news, but it's not. Despite appeals for help directly to DWP, welfare rights and even the MP, my friend and her severely disabled child are still in dire straits. There has been no positive progress made for them and they are still being left without the benefits to which they are surely entitled.

The link from pp Orange makes heartbreaking reading.

I read that the suicide rate for carers is three times the average population.

My friend has had to be strong for so many years, but we all have our limits. I think, through love and devotion and as a very responsible parent, she has endured beyond what most of us could.

This makes me so angry on behalf of my friend and her little family.

Britain a caring society?! And one of the wealthiest nations too.

Shame on Britain. Shame on the DWP. Shame on the government and policymakers.

She and her severely disabled child deserve this, do they - because a form was lost by DWP or Royal Mail?! Is it a reasonable and proportionate outcome?!

I hope that at least they can get a new claim in for PIP ASAP and get assessed quickly- it can get backdated I think. Kind thoughts I agree it is a nightmare of a system

@ConcernedAboutMyFriend

An update, and I wish it was good news, but it's not. Despite appeals for help directly to DWP, welfare rights and even the MP, my friend and her severely disabled child are still in dire straits. There has been no positive progress made for them and they are still being left without the benefits to which they are surely entitled.

The link from pp Orange makes heartbreaking reading.

I read that the suicide rate for carers is three times the average population.

My friend has had to be strong for so many years, but we all have our limits. I think, through love and devotion and as a very responsible parent, she has endured beyond what most of us could.

This makes me so angry on behalf of my friend and her little family.

Britain a caring society?! And one of the wealthiest nations too.

Shame on Britain. Shame on the DWP. Shame on the government and policymakers.

She and her severely disabled child deserve this, do they - because a form was lost by DWP or Royal Mail?! Is it a reasonable and proportionate outcome?!

Remind me what stage they are at ? has a mandatory reconsideration on the PIP refusal been done?