THE DELICATE, COMPLEX BALANCE OF KINSHIP VARE & SURVIVAL , THAT I HAD HELD TOGETHER AGAINST TERRIBLE ODDS FOR FOURTEEN & A HALF YEARS, FOR MY GRANDSON DD, WAS TRAMPLED OVER & WIPED OUT OVERNIGHT BY SAVAGE WELFARE REFORMS.
Dearest Dd turned 20 on 10th December 2017. Of course, this coming of age changed nothing. He remains forever a young child in a big man’s skin. He was born with Fragile X – full mutation, Autism, severe learning disabilities & a rare & severe & complex form of life-threatening epilepsy. Dd has communication impairments, no capacity for processing anything but known & basic verbal & pictorial information & no capacity at all for processing written information. He cannot read or write. He has no capacity for work or any form of independence. Dd needs 24/7 care, support & supervision, nevertheless, there is much potential for meaningful enjoyment of life within a support framework, if, the appropriate support is facilitated for him. He’s a captivating, loveable & complex character.
Due to lack of specialist support, that might have brought balance & quality to both our lives, I had to abandon my career immediately & have not been able to return to work since June 2004, when Dd came into my care as a result of my daughter’s (Dd’s mum’s) sudden death. We were entirely reliant on benefits since then. In December 2017 Welfare reforms meant I had no choice but to make a Universal Credit claim for Dd on the turn of his 20th birthday.
The first thing that struck me was that the pre-existing DWP records of Dd’s entitlement to severe disability element support, including higher rate mobility & care components for DLA/PIP were not relevant to the UC assessment process.
Dd’s full statement of special educational needs has been in place since he was 6 years old. His statementing application was finally successful, six months after his mum’s death as a result of her strenuous efforts to acquire all his diagnosis’s in the 3 years previous. Dd has been in Special Needs schools & college ever since. His statement was transferred to an EHCP in July 2017, further legal reinforcement of Dd’s extensive & complex special care, health & education support needs, but again, not awarded without an arduous fight for it. I was also registered by the DWP in 2016 (when Dd turned 18) as Dd’s Appointee. Appointeeship is a tacit acknowledgement by the DWP that a claimant has no capacity to manage their affairs or benefit claims for themselves. Two days after I started Dd UC claim, via the UC online portal on 6th December 2017, the Appointeeship certificate and all the other necessary evidence of Dd’s incapacity for work was submitted, in person by me, to Purley Jobcentre, at the first verification interview. Despite the evidence & identification for us both that I submitted, I was not received well. The ‘first contact’ interviewer was rude & demeaning. I was interrogated extensively by him and his colleagues as to why Dd hadn’t attended. I was made to feel that Dd was not in genuine need & I had no business making his claim for him.
Dd has been under the care of specialist educational, psychological, neurological & epilepsy teams since he was 2 years old. Between us, Dd & I have also had 3 professional & highly respected, specialist advocacies supporting us, mediating for us & gathering evidence of needs for the last 14 years that Dd has been in my care. You can imagine the wealth of historical, & current, professional & specialist evidence of risk factors, specialist care & support needs & incapacity I presented to the DWP, on Dd’s behalf, to support his claim for lifelong UC benefit payment.
You could not imagine, however, that I was forced into attending 5 DWP verification interviews in the first two weeks of the claim, having to constantly reiterate, & resubmit the same evidence i.e. that Dd is unable to comprehend, attend or comply with the UC process & why I must manage the UC claim for him. No-one was listening, in the jobcentre & at the case centre, I was told over & over again that Dd must attend all interviews & assessments. I just kept repeating that he didn’t have capacity & kept re-submitting the evidence; waving it under their noses, referencing it online & badgering the case centre, anything to make them read the evidence & listen. The threat from the jobcentre to close the claim down came in the first couple of days, then the threat of sanctions if Dd didn’t submit to interviews & compliance.
It was exhausting, frightening & stressful & it left me in complete despair. I was in shock & horrified to discover that were no longer statutory DWP safeguarding processes in place to ensure that the most vulnerable & impoverished people don’t fall foul of processes they are incapable of complying with. Every single claimant is forced through this punishing process with impunity by the DWP only to endure a statutory seven week wait for validation of just the basic (£49 a week) claim, & thus, first payment of it. Within two weeks of the claim being opened, jobcentre staff were conceding that they were powerlessness to offer any help to struggling claimants.
I admit to being floored literally. The delicate, complex balance of kinship care & survival for Dd had been literally yanked from under our feet by the Welfare Reforms. The sense that we lived in a country whose democratic parliament enshrined its responsibility to society’s most vulnerable & disadvantaged people evaporated instantly. Depression that has stalked me for the last 14 years took on a new blackness & depth. It engulfed me. Foodbank, fuel & food poverty, threat of eviction, debt & arrears, & the attendant ill health induced by such unwarranted stress, were the future for families like ours. All because democracy had been so trampled that parliamentary opposition had been rendered powerless to oppose such a such a Dickensian travesty being made lawful in the 21st century UK.
In the four weeks since I opened the UC claim, work commitments & interview attendance demands were continually made on Dd, via the online UC claim portal. I protested often to the work coach & case manager, via the phone when I could get through, & via the online journal, that Dd cannot possibly meet or be forced to meet any of the commitments required in return for £49 a week. Every hurdle I jumped (hurdles that Dd or any claimant is expected to jump) was immediately followed by an even higher, insurmountable one. The unequivocal statements from medical & educational professionals as to how significant Dd’s dependency on others for all aspects of care & survival & his incapacity are, were not suffice for DWP (& the independent contractor who the DWP outsourced Capacity for Work assessments to) to accept Dd’s inherent entitlement to safeguards against incurring harm from statutory processes such as the UC claim process.
What a soul-destroying experience this has been, capped three weeks later by an ever-higher hurdle to jump which arrived in the post in the form of a 40-page Capability for Work Assessment Questionnaire. This form turned up during the statutory seven weeks wait, for the first basic jobseekers £49 a week payment. It is a sinister document, it’s arrival timed to have maximum psychological impact. It interrogates the recipient, incessantly & intimately about every bodily & mental function. It’s thirty or more questions are intrusive. I felt I was humiliating Dd by answering them, imagine having to answer them for yourself? The questions are so designed to quantify immeasurable human challenges. They make any answer self-defeating for claimants who come to this process already crushed by personal challenges. I wept. I was haunted by the thought that if Dd had mastered even a little reading & writing, he would have been judged fit by jobcentre staff to endure such a process. I had to answer the questions for Dd one by one, taking long breaks in between. I answered one or two questions a day for three weeks, I couldn’t cope with any more.
Imagine if bereavement or some other unforeseen catastrophe has left you homeless/unsupported/ jobless/penniless, or you are battling a terminal illness such as cancer, or if you have recently succumbed to homelessness or mental illness? Or, if you are a single parent with young children who’s lost their job, or, if you have been confined to a wheelchair & dependency & incapacity for life? Just imagine, you’ve got all those self-defeating hurdles to jump. Humiliating, self-defeating interviews & the Capacity for Work questionnaire, enforced job searches & job interviews (even though you can’t pay rent, or buy food, heat & light, provide your kids basic needs, let alone bus fare to interviews?) Imagine, if & when you even manage to jump these punitive & endless hurdles, you must wait seven weeks before first payment? Many children will have been forced into care or homelessness, many claimants will have already died from extreme mental & physical distress, starvation or hypothermia by then.
Surely, if UC was introduced with the intention of positive benefit reform, then shouldn’t legacy benefits be permitted to continue seamlessly during the verification & assessment period, then cease on completion & transfer to UC entitlement where it applies? Not many people are aware that the first seven days of the seven-week waiting period for settlement of UC claim, are void of entitlement. The government has clawed back one week’s irretrievable benefit by stealth from every single UC claimant to date. How can it be right in this day & age for any person to be denied a week’s entitlement whilst being forced by the state to wait a full seven weeks without recourse to funds & only one food voucher offered in any 3-month period? Bizarrely the jobcentres dole out foodbank vouchers in collaboration with local charities.
Then there are the sanctions (financial penalties) waiting at every hurdle that you fail to jump & fail you undoubtedly will, the DWP has made sure of it. Miss a DWP call anytime between 8am & 8pm Mon-Sat, turn up late for a work or jobcentre interview or miss one because of emergency hospitalisation? You are sanctioned & have a further extended zero income situation, often for weeks, even years.
Seven weeks of overnight & complete deprivation passed in our household. There was no recourse to any financial support (except a repayable £120 DWP advance payment) to bridge the cumulative financial shortfall during the statutory seven weeks wait for first payment. Don’t expect any explanations of processes or setting of expectations, the DWP remains unaccountable for its decisions, errors & processes throughout. Claimants are not even offered the courtesy of being informed of the deadlines with which the DWP’s own processes should be compliant.
We lost £150 a week child tax credits, Dd’s £37 portion of the housing benefit (since his 20th birthday Dd is classed as a non-dependant person under benefit rules despite his obvious, absolute dependency) & £37 a week child benefit & guardianship allowance, as of Dd’s 20th birthday, all in one fell swoop. I was assured by the work coach & case manager that all previous entitlement will be restored & Dd will not receive any less after the seven weeks waiting period expires & payments start. This was not true.
Dd was allowed just one foodbank voucher which was expected to feed him for a 3-month period. I complained bitterly & frequently in the online journal & by phone to jobcentre staff & claim manager about the sheer cruelty of the claim process. I constantly reiterated the extent of Dd’s care needs, his expensive special dietary & clothing requirements, equipment & supplies requirements etc that I could no longer meet. I reiterated also that our sudden desperate & unnecessary financial hardship, was placing the fragile kinship caring arrangement at grave risk. I didn’t leave them in any doubt as the harm that was being inflicted by the UC process. My complaints were to no avail. For seven weeks we lived on just my £46 a week income support & £64 a week carers allowance. We were stripped of all other benefits, but housing & council tax benefit, but £37 a week was also deducted from this because Dd was now classed as a non-dependant.
No-one at the jobcentre or UC case centre could tell me how long the Capacity for Work assessment period would last, although such a process should surely be governed by timelines & deadlines to complete it. The work coach assured me that if & when incapacity is verified, Dd’s incapacity (ESA?) element would be backdated to the start of the UC claim. This also turned out to be untrue.
Our troubles were mounting further when Dd received his first basic monthly allowance of £230 on the 19th of January this year. This is when it became clear that there was indeed going to be increased hardship. There was no backdating of entitlement for the full 7 weeks waiting period either. Dd received four weeks backdated. The disability entitlement element (ESA) was yet to be assessed & awarded. The household was now receiving £180 a week less, than before the start of the UC claim, despite the work coach’s promises otherwise. By this time, I had racked up more than £1100 of debts to pay for fuel, food, household bills, essentials for meeting Dd’s special care needs, & rent shortfall.
At least my arduous, circular battle to prove that Dd had no capacity for compliance with UC work commitments & assessments was over. The work coach & case manager finally had no choice but to accept the overwhelming evidence & to also ensure that the UC online system registered it & stopped badgering him for compliance. I have no idea how they achieved the latter because they kept telling me they couldn’t make such changes.
On April 19th 2018, Dd’s incapacity assessment period had officially ended, although I was refused any prior notification of when that date would come. Dd first payment to include his disability entitlement (ESA) was paid on that date. The new monthly payment was £580, revealing yet another untruth from the work coach. There was no backdated disability element (ESA) entitlement & there was no explanation of the decision. I wasn’t given a time-frame for my appeal to against payment amount to be answered either. When I did get the mandatory re-consideration decision two weeks later, I was informed that the disability element (ESA) of UC was only payable four weeks in arears from the date that the incapacity for work award decision was made. So, although the UC claim & capacity for work assessment were opened on 6th December & 17th December 2017 respectively, entitlement to disability element was only paid from the 19th March 2018.
There was no redress for me to retrieve the £80 a week disability element shortfall of the four months prior to the assessment decision. I now couldn’t pay off the household debts incurred as a result of the UC claim process. Not only was backdated entitlement denied, the household was now receiving £67 a week less than before the UC claim, not including the ceased £37 child benefit & guardians’ allowance. These are benefits which always come to end on the date that a young person is classed as non-dependant for benefits claim purposes. In Dd’s case this was 20. The loss of these two benefits is one change we endured that has nothing to do with the Welfare Reform Act. So, if you include these two young person dependency benefits, the overall household income reduction amounts to a total of £107 a week with the turn of Dd’s 20th birthday.
I have observed & experienced for myself that great psychological & physical harm towards the most vulnerable individuals & families, at their times of greatest need, is purposefully encrypted into the Universal Credit claim process. This is 21st century Britain. Given my dreadful experience with Dd’s UC claim, it’s not too dramatic for me to say that my experience is that the DWP is as cruel as medieval Europe in its attitude to the poor & incapacitated, at the least, & as sinister in its destructive intent, to the disadvantaged groups it targets, as mid-20th century Nazi Germany, at the worst.
How on earth did such an assault, by a government on its neediest citizens, become acceptable in this country? It’s an assault that meets the fragility of human existence with cold contempt in the guise of the Welfare Reform Bill 2012. How did it ever pass through our parliament with such ease? Parliament was warned of the consequences of passing this bill by a host of experts from diverse professional fields. This advice was ignored at great peril to our parliament’s integrity & the lives of millions of UK citizens, in & out of work.
#universalcredit #austeritykills #idanielBlake #disabilityrights #humanrights