Sarah’s story: #UniversalCredit cost us £2,500 immediately

Sarah Spoor

Sarah Spoor is a London-based full-time carer and disability activist. She appeared on Channel 5 on Wednesday and this morning will appear on the BBC’s Victoria Derbyshire programme to talk about her experience with the government’s Universal Credit system, which has been widely condemned as damaging and ill-conceived.

It cost Sarah and her family £2,500 as soon as they were put onto it.

She told the SKWAWKBOX her story – here it is in her own words:

I have two disabled sons aged 17 & 20 years. Our Child Tax credits and Child benefit stopped in October last yr when my oldest turned 20 yrs.

I immediately lost of £690 per month = £8280 per year. This was tax credits of £7204.

We had no money at all for 8 plus weeks.

Then we started to receive payment of £250 per month 8 weeks later – so shortfall of £440 a month.

Then we had to complete Universal Credit (UC) Work Capability Assessment form.

Months passed whilst I tried, as a full time carer working 168 hours a week caring for my disabled children, to complete this form and gather medical reports.

UC wanted to interview my disabled son – that would have made him medically unwell . Many letters later from me and from medical professionals, Maximus finally backed down and did a paper based assessment – my son was awarded disability component of Universal Credit.

HOWEVER this disability component is not paid for first 12 weeks. That money is NEVER EVER paid . My son has been disabled since age 3 – the DWP has known he is disabled since aged 3. His DLA (Disability Living Allowance) has been paid since age 3 years . SO WHY no acknowledgement of his disability for the first 12 weeks of Universal Credit.

This angle of Universal Credit story has not been discussed in the press – as I don’t think anyone is aware its happening.

So the net result is I am £2,500 pounds down per year. I am still expected to be a carer paid 37p an hour caring 168 hours a week caring for 2 young adult children.

I live in West London. The breakdown of my tax credits is as follows:

Child 2780, disabled child 3149 plus high-level disability 1275 = £7204
Child benefit loss £1076
Universal credit for a 20 yr old is basic £251.77

Finally when the DWP agreed my 20yr old cannot work, they started paying additional £315.60 per month

That makes a yearly total of £6808.44

7204 – 6888 = £1472 loss per yr

PLUS the 12 weeks where the DWP does not recognise the young person as having a disability at all – despite the DWP knowing that for the last 17 years he has had a disability

So by my way of thinking the DWP cannot pretend that that there was no disability for 12 weeks. This should not be ignored.

Therefore I feel that I am owed 3 x 315.60 = £946.80
Total 1472 + 946 = £2418 LOSS for this year, then a recurring yearly loss of £1472

Both my children have Polyglandular Autoimmune Syndrome Type Two which is an umbrella name for a number of autoimmune conditions

Under that umbrella, they have:-

  • Type One Diabetes (insulin Dependent)
  • Hashimoto’s Disease (Thyroid Failure)
  • Addison’s disease (Adrenal Failure)
  • Pernicious Anaemia.

They wear 2 medical pumps (they are the only children in the world on two medical pumps).

I care for them for 168 hrs a week for 37p an hour.

I have been in a 4-year fight with Social Services to get any help. The Universal Credit application process has been humiliating & traumaticIt has pushed me to the edge.

I am hanging on to tax credits for myself and my younger son – and I do not want to change to Universal credit until forced to.

Re finances – I have had to transfer cash from my savings account every month so now I have barely any savings. I am terrified if anything breaks down – I already have repairs need doing that I can’t afford to do.

I feel emotionally broken by this addition to all the other stresses I am under.

The government is trying to destroy the disabled and their carers – its not just logistical, it runs much deeper. Disability hate crime is up 50 % and it is because disabled people are portrayed as scroungers .

God knows how the less eloquent and able manage to fight through the system.

You can see Sarah on the BBC News channel’s Victoria Derbyshire programme on Thursday 19 Oct. The programme begins at 9am.

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  1. The hideous Tories just LIE LIE LIE about anything to do with ‘benefits’ or ‘welfare’ – hideous words they purposely chose to try and turn the wider population against those needing to claim SOCIAL SECURITY, the correct original term which sounds so much kinder and more appropriate to people in need after they have paid into the national insurance pot.

    They say Universal Credit is an ‘improvement’ and it ‘helps’ people get into work. It is nothing of the sort. It is simply yet another Tory device to prune back the costs of public services to achieve a smaller state so their rich donors and dinner party friends can pay less tax.

    Don’t forget, they always lump more regressive direct taxes onto the populace (like raising VAT) which affect poorer households most whilst they trumpet any shavings off income tax, inheritance tax, capital gains tax, corporation tax, ALL of which benefit the richest in society more.

    The exact same dishonesty has been applied by the rotten lying Tories to the change over from DLA to PIP:
    “it’s to replace an outdated benefit that wasn’t accurately targeted and left claimants TO ROT for years, undisturbed by the DSS/DWP; the new benefit better supports those with greater needs by being better targeted” – is the kind of crap IDS would come out with, before vile Grayling was sent out to spout the same bull.

    This is utter bollocks. As well as working full time, I have been caring for a friend on the highest rates of DLA for 25 years who has experienced nothing but denigration, obstructionism, dishonesty in every contact with the DSS/DWP, and now this year loss of essential income of £1200pa.

    You have to fight and fight to teach them the correct rules and make them apply them. They are not there to ‘help’ whatsoever.

    On top of all that, they now harass the disabled with repeated demands to fill in 30 page forms with dozens and dozens of questions and explanatory notes every few years, even where there is no change of circumstance and people are suffering terminal progressive illness.

    You don’t get any ‘enhanced’ service or benefit from them, just the extra stress and anxiety of uncertainty and insecurity.

    Only IDS in his psychopathic head could describe this as ‘enhanced service provision’.

    None of this is an ‘improvement’ unless you are so cruel and sociopathic that you enjoy starving the poor, sick and disabled and driving them to an early death.

    1. You have to fight and fight to teach them the correct rules and make them apply them. They are not there to ‘help’ whatsoever.

      Correct, they’re NOT there to ‘help’.

      They are there to make money by denying those ENTITLED to theirs.

      This is THE most blatant conflict of interest I know of. How DWP staff can receive bonuses for stopping people’s money for the most spurious of reasons, without being charged -or even investigated- under S.2 Fraud Act is completely beyond all comprehension.

      Essentially, they’ve been given a licence to plunder from society’s weakest.

      It’s GOT to stop; and reparation/legal redress given.

      1. And the National Fraud Prevention phone line is free to call!
        Oh the irony!

  2. The same happened to me I lost £2132.00 a year as I was getting £63 per week SDP this was reduced to £32 a week once changed over to UVC ,

  3. Its like a re-run of every benefits headlining story about cruelty and poverty and punishment built into the Tory system. UC is rotten to the core, Tax Credits and housing benefit cuts, the OBC, all evidence of a visceral hatred of the working class and the Welfare State. BUT…..

    Yet again the sick and disabled and their carers, the core group who have repeated slashes to their tiny benefits, the removal of any “social security” appear as footnotes to the other stories. The ESA and PIP helplines are still going to be 55p a minute, the WCA remains as a humiliating and harmful centre piece. UC is yet another cut to meagre and inadequate benefits. Carers (mainly women) are treated worse than bonded serfs to the state.

    I will campaign against UC and other cruelties in the system, but I’m still waiting for the violence against the vulnerable to be moved centre stage, and for the population including all on the left, to show they care enough to be angry. After 7 years of propaganda about the “gold plated lifestyle choice” of scroungers pretending to be ill I wonder if it is not too late? Does anyone care at all, apart from a few like Steve here, or Corbyn or McDonnell, who have been tireless in their support of the disabled and sick ?

    After attending Labour conference our Youth Delegate posted 20+ selfies with all the “names” in the party – Corbyn, McDonnell, all of them on the CLP FB page, at all the socials andvfringe events. On the thread I posted a picture of a queue of disabled also at conference who were unable to access the one lift that was needed to leave the conference floor, showing just one episode where disabled comrades were having problems. Some of these meant we couldn’t get to the WC or get lunch or even leave the hall. I was told that was “inappropriate”. On what level is a thread by delegates about their conference experience is mentioning the poor experience by the disabled delegate “inappropriate”? I suggest if anyone is actually reading this posting you may have already understood. I just wish everyone in the Labour party were so enlightened. It is really frightening to think we not only have to fight the Tories, but also for the support of the left, too.

    1. Certainly the failure of arrangements for disabled people in Brighton was a disgrace to the party. One person raised it from the platform but it doesn’t look like much was done.

      With a new CAC composition and chair I hope things will be better going forward but I’ll try to find out what concrete steps have been taken to make sure there’s no repeat/

  4. So much for a caring government for all! The Conservatives should hang their heads in shame. Yet another farcical policy which was not thought through to consider how everyone would be impacted.

  5. It goes on and on, the Tories the Liers, their party have done the worst disservice to our country than any other party in HISTORY, that includes Thatcher, Cameron, along with the Liberals, then May, along with all their policies, made to attack us and give to the RICH!
    All those Tory VOTERS made this happen!
    I can only imagine, they don’t have a conscience and completely bereft of any compassion!
    They need a complete overhaul in the way they think, or maybe, they will find their compassion and do a 360-degree turnaround and vote Labour!

  6. Thank you sooo much for covering my sister’s story. She is an incredibly storng woman who has fought and continues to fight for her children to have the care they need to stay alive on a moment by moment basis. But she shouldn’t have to ‘fight’ at all. I wonder if we even live in a civilised society any more? If our representatives & our civil servants who we empower to work on our behalf for our own common good are dismantling systems of care estsblished to protect and help those most needy of care can we call ourselves civilised? Seems barbaric to me.

    1. I really get what you mean about the society we seem to live in today. I do wonder thought, how much is really down to people not caring, and how much is down to the herd effect? I mean that when papers publish some propaganda, there are many who are not really engaged with issues and politics who take go along with what they believe to be the majority position, rather than risk being seen as out of step (or “stupid”)? I think this is where there is a disconnect between the apparent silent majority, and the more in-depth responses on policies that show huge numbers actually support Labour’s policies. I hope so. I know that when out canvassing many on the doorstep will volunteer their views about the government and it’s failures, where as before GE17 it was often difficult to get people to speak about these. The success of the Labour party has now shown many that they are right to hold these views, and to support Labour. Sarah is a remarkable woman, and brave too. We need a govt where people like her, and the rest of us, are no longer used as the whipping post for a discredited and failing ideology, and we don’t have to fight, fight, fight beyond exhaustion just to survive another day.

  7. So me time ago when Cameron was prime minister he said there were people who lived on the fringes of society. He also said they should not be allowed to vote as they did not contribute and were not citizens. Regarding his own disabled son who has since died he was bothered that people just saw the wheelchair. I hope they are out of government very soon. As a disabled person now it is all about money and going without because it’s a constant worry. Blood tests showing up deficenceys is it the condition you have or the fact not eating. Very much.

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