I haven't read the full thread yet, though I will. I started a related thread in AIBU in early November, after my friend had her Carer's Allowance stopped as a result of DWP refusing PIP and stopping DLA for her severely disabled child.
When a disabled child already in receipt of DLA turns 16, an application must be made for PIP, with DLA continuing to be paid during the application process until a final decision about PIP is made. In a nutshell, the confidential, deeply emotive and highly sensitive PIP application form my already-stretched friend had spent hours completing, together with supporting similar documentation, had been lost - possibly in the post but, after reading of others' experiences, most likely by DWP. Instead of simply sending out another form to complete, DWP sent a letter refusing PIP, stopping the existing DLA and even telling her the car was instantaneously no longer taxed, having taken away the disabled class exemption. A letter from the 'Carers Unit' soon followed of course, stating that she was no longer entitled to her Carer's Allowance. Knock on effects followed with Child Tax Credits, Housing Benefit, NHS prescriptions and dental care and National Insurance credits impacting on later basic pension entitlement. My friend had had to give up her career to care devotedly and around the clock for her severely disabled child. These are therefore the safety net on which they have to depend and they were taken away with one heartless press of a DWP computer key. Life, or what was left of it, already difficult beyond the experience and comprehension of most people, started collapsing down on them like a house of cards; like a domino topple.
Caring, for someone in my friend's situation at least, is exhausting, relentless, heartbreaking, all-consuming. She has had to give up everything and after many years of round the clock sole care she is understandably severely sleep deprived and her health - physical and no doubt mental - has suffered. People bandy around terms like respite and support but this is not always available, helpful or appropriate in reality. The daily and nightly round of feeding, washing, changing, nappies, emotions, equipment, education, lifting, appointments, entertaining, wiping noses and tears, safety, responsibility and worry for the future is all down to her. The coronavirus pandemic has added a new layer of isolation, costs, work and concern. Not being on the government's very limited list of the 'extremely clinically vulnerable' for additional help, she has been left to cope with shielding her child since March completely alone.
Let us not forget then, The Loneliness of the Long Distance Carer.
There is joy, still, in her life with her precious child and love and responsibility have kept her going all these years. It would be naive though to think that the link with life has not been made tenuous and that, on top of everything else and already living in a largely uncaring and discriminatory society, the actions of DWP may well have been the straw that ultimately breaks the camel's back.
They have been left in this dire situation for about two months. With a severely disabled child, who was in receipt of DLA at the highest rate for both personal care and mobility needs, entitlement to PIP and Carers Allowance should not be in any doubt. This situation would either indicate that DWP is not fit for purpose or that there is a significant toxic and uncaring culture within it against disabled people and their carers.
Carers Allowance is meagre and paltry. My friend cares 24 hours a day, 7 days a week, for a few pence an hour until that was taken away. Can you imagine what it was like to be told she wasn't even deserving of that - and after two hours sleep?
I don't think it is a coincidence that it is the work of a woman and mother that is not being properly recognised and valued, supported and protected.
'The true measure of any society can be found in how it treats its most vulnerable members.'