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.