Life on Universal Credit: I’m a carer for my son who has severe disabilities and had to wait 20 weeks for his full payment Sarah Spoor says she is struggling financially to care for her son and does not know where she can cut back

In a new series, i reveals how the controversial Universal Credit system is affecting the lives of people up and down the UK through emotional and financial stress.

Sarah Spoor believes Universal Credit is particularly punitive towards people with severe disabilities like her son.

So concerned is she that his benefit could be taken away, she fears the 22-year-old, who has a rare autoimmune disorder, going outdoors. She worries people might see him, perceive him to not have disabilities and inform the Department for Work and Pensions (DWP).

The i newsletter latest news and analysis Email address is invalid Email address is invalid Thank you for subscribing! Sorry, there was a problem with your subscription.

“Oh my goodness someone might see him. Someone might see him and think he looks normal. But people don’t see him collapsed on the floor,” Sarah, 56, tells i.

“I think in the disabled community, you feel like you can’t go out because then you might be seen and then you might lose your benefits.” Sarah Spoor

“I think it’s just awful. I think definitely in the disabled community, you feel like you can’t go out because then you might be seen and then you might lose your benefits. That’s exactly how people with disabilities feel.”

Her concerns are understandable. From the moment her son, who wishes to remain anonymous, had to switch to the new benefits system from child tax credits at the age of 20, Sarah, from west London, has encountered problems with Universal Credit.

‘Shocking’ experience

Signing on at the Jobcentre, which Sarah did on her son’s behalf as his power of attorney, was a “shocking” experience. Then she had to struggle financially for a total of 20 weeks for his full Universal Credit payment amount to come through, some of which was not backdated. And as he is no longer a child, his annual benefits income has substantially dropped despite the fact his care needs remain the same.

As a single parent, she spends 168 hours a week caring for her son and his younger brother, who also has severe disabilities, and only receives the state carer’s allowance.

“If you keep taking the money [Universal Credit] away and reducing it, we’re not going to be able to keep caring. If we start dumping all the people we care for, it’s going to lead to the critical meltdown of the NHS and social services. We don’t feel valued at all.”

Sarah believes Universal Credit has been designed “to make it more difficult” for people to receive benefits.

‘Scary prospect’

For years she has relied on much-needed benefits to look after and pay for her sons. Sarah received tax credits for both children but when her elder son, who wishes to not be named, turned 20 two years ago they were stopped. Consequently he had to move to Universal Credit, which replaces six benefits with one monthly payment.

Having seen negative stories in the press, Sarah says signing on to Universal Credit in 2016 was a “scary” prospect.

Along with a disability benefits adviser, she went to the Jobcenter. She describes the experience as humiliating and shocking.

‘It was like I, Daniel Blake’

“It was very much like [the film] I, Daniel Blake. We were sitting in this draughty entrance hall where [there was] loads of security. There were about eight computers. There were people… whose first language wasn’t English and people [who] had never used a computer before. We all had to keep putting our hands up and someone would come. You would start doing something and [the online application] would time out.

“We decided, because I was getting quite stressed, to abandon ship, regroup and think about it again. I managed to get it sorted out online at home.”

Like many other Universal Credit claimants, her son had to wait weeks for his first payment – eight, to be exact.

When Sarah got it, she realised the money did not fully acknowledge her son’s disabilities. To get what he was entitled to required another form of about 27,000 words in which she painstakingly explained his condition, Polyglandular Autoimmune Syndrome Type Two, and the symptoms.

More delays followed as Sarah refused to allow her son to have a face-to-face assessment which she says would make him medically unwell. The DWP eventually agreed to a paper assessment but the family still had to wait a further 12 weeks for the disability component. During these three months, she was £1,000 out of pocket. The payment was never backdated.

‘I don’t understand’

“For the purposes of the DWP and Universal Credit, they assume you don’t have a disability for those 12 weeks. The DWP knew that from age three he’s had disabilities. It would be miraculous if he had gotten better for 12 weeks. I don’t understand. There just shouldn’t have been a gap. It all should have been backdated from the beginning.”

“We were just about managing and I’m now having to worry about whether I have the heating on. I cook everything from scratch anyway so I’m worried as to what I can cut back on.” Sarah Spoor

The family was getting by on the old-style benefits but since her elder son moved to the new system, she has estimated she is short nearly £1,430 a year.

Her elder son is no longer considered a child so his benefits entitlement has changed. But Sarah maintains his care needs have not.

“I get paid 37 pence an hour, what the Government is paying to be a carer. I’ve always said I won’t do it in poverty but I’m being pushed closer and closer to that.

“Nothing changes from one day to the next. The care needs are the same. In fact as [my sons are] getting older, they cost more. With my children, they’re not so attached to my apron strings. They’re wanting to go out into the world so that means they have to have the carer go with them. Everything you go to is more expensive. They’re eating more.

“We were just about managing and I’m now having to worry about whether I have the heating on. I cook everything from scratch anyway so I’m worried as to what I can cut back on.

“Do we just not have any TV. Then I think, ‘Can I not even watch TV occasionally?’ I barely watch it as it is, working every day caring for my sons, but I occasionally use it to de-stress.”

Minesh Patel, policy manager at disability equality charity Scope: “This shines a light on the damaging impact Universal Credit will have on the lives of many disabled people unless we see drastic changes. “We regularly hear from disabled people who have difficulty making a claim, and from those who have lost benefits when they switch to Universal Credit. “This only makes life much harder than it needs to be for disabled people, and will not help the Government meet its commitment to support one million more disabled people in to work. “The Government was right in this week’s Budget to recognise the need for funding to help people move on to Universal Credit. But the devil will be in the detail, and they must make the transition process work for disabled people.”

A DWP spokesperson said: “Universal Credit targets support to the people who need it most. Around 1 million disabled people will receive £110 more a month on average under Universal Credit.

“The vast majority of claimants are paid in full and on time, and are comfortable managing their money, while budgeting support is available for anyone who needs extra help.”

If you would like to share your experience about life on Universal Credit, email serina.sandhu@inews.co.uk

Read more in our Life On Universal Credit series.