‘I was left homeless and without a wheelchair after my disability benefits were halved’: Woman, 28, had to stay in a homeless hostel because she couldn’t afford rent Arran Mara hasn’t had a permanent place to live since losing £220 a month when her benefits were changed over

Arran Mara can’t stand without crutches, needs a wheelchair to get to the shops, and is unable to cook for herself. She has daily carers to help her wash, clothe and feed herself and complete household chores.

Arran is one of around 1.5 million people in the country living with a long-term condition called fibromyalgia, which causes pain all over the body and muscle stiffness. But despite being registered as disabled since she was a child, the amount she once received in disability benefits since was cut by almost half.

With rising rent costs it left Arran unable to find a home she could afford. She spent months sleeping on friends’ sofas and eventually ended up at a homeless hostel, unable to keep her wheelchair there for lack of space.

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“It’s awful that anyone with a disability should be put in that kind of situation,” Atran told i. “It’s hard enough for me to manage with my condition on a day-today basis without the worry of trying to find a permanent home.

“Since my benefits were cut, I haven’t been able to afford to rent anywhere suitable and the stress is making my health much worse.”

Arran was diagnosed with fibromyalgia when she 12 years old.

“It started with extreme fatigue and then muscle weakness and back pain,” she recalled. “I struggled to walk to school or concentrate on anything so, eventually, I was only able to go part-time.”

Read more about Fybromyalgia: What is fibromyalgia, the condition that caused Desert Island Discs’ Kirsty Young to step back

In and out of hospital during her teenage years, Arran also had a tutor to help her catch up with missed school work and had to use a wheelchair to get around from time to time when the pain and weakness in her legs got too much.

Missed teen years

“It wasn’t much fun living that way as a teenager,” she admitted. “While all of my peers were going off to concerts, discos and the cinema, I had to stay at home in bed. And if I did want to go out somewhere I had to pack lots of medicine, make sure there was someone available to push my wheelchair, places nearby for me to rest if I needed to, ramps and other things. It would take so much organisation it often wasn’t worth it.

“I did manage to get to a Bob Dylan concert once when I was 15. I had to pad my wheelchair with pillows to make it comfortable enough to sit on for a long time and take painkillers but it was worth it.”

When Arran was 18 she started working on the reception desk at a theatre. By then her condition, which “went up and down in terms of severity” had improved a little and she was able to walk using crutches and sit behind the desk.

At the age of 20 she decided to move out of her mother’s home in London, where she lived with her sister, because they weren’t getting on.

“I had developed OCD around food too,” she explained. “I would have recurring thoughts about the food I ate being contaminated in some way and my mum would struggle to get me to eat. The constant tension with my sister was making my condition worse and I also wanted a little more independence.”

Arran moved into a rented flat and, after giving up work once her fibromyalgia flared up again, she received housing benefit to cover £500 of her £600 monthly rent as well as £400 Employment Support Allowance (ESA) and £400 a month Disability Living Allowance (DLA).

“I wasn’t exactly well off but I had enough to live on and never had to go without the basics,” Arran said. “If I’d had the choice I would have loved to be able to go back to work but, unable to walk properly and in constant pain, I didn’t have any other option.”

From the age of 23 Arran’s condition continued to deteriorate.

“After needing a wheelchair until I was 17, I’d had a good few years in my late teens and early 20s but then I went from walking with a stick to crutches again and from crutches back to needing a wheelchair. The muscle weakness got worse and there was a constant deep throbbing in my legs and back.”

Needing help from carers which she paid for herself out of her disability allowance, Arran began finding it difficult to manage financially.

“I’d met someone by then and we were both fed up of the rising costs of living in London so decided to move to Edinburgh where rents were cheaper. I had friends there too,” she said.

But two years after the move in 2015, the couple broke up and Arran was left to cover the cost of rent and bills in their shared flat alone. She managed until getting a letter “out of the blue” from the Department for Work and Pensions (DWP) which stated that her DLA was being switched over to the new Personal Independence Payment (PIP) system.

Shock reduction

“I was told that, under the new scheme, I had been reassessed and my status had been changed from middle rate mobility to standard rate care, with no mobility component at all,” Arran said. “It was as though they were saying I was suddenly more mobile when, in actual fact, I was less.”

Read more about benefits struggles: Mum with cancer on Universal Credit forced to wait months to bury son after she was £900 short for funeral

It meant Arran would be getting £220 a month in PIP instead of £400 a month DLA.

“It might not seem like much money to most people but to me it meant the difference between being able to pay my rent, bills and carers fees or being out on the street,” she said.

Although she applied for funds to help pay the £60 weekly costs for her carers, it took a long time to process and, in the meantime, Arran ended up £1,600 in debt.

On top of that she was told her ESA had been overpaid and she would have £50 taken out of those payments each month to clear the debt.

Forced to move

In 2016, she was forced to move out of her flat and find somewhere else to live.

“But everywhere I looked either didn’t accept people on benefits, or wasn’t suitable because there were lots of stairs I couldn’t climb up,” Arran said. “The majority of them I just couldn’t afford.

“People just closed the door on me because I was disabled.”

Left homeless, for months she had to ask friends to let her sleep on their sofas and moved into a hostel for a while.

“I felt so vulnerable – like I had no stability in my life at all,” she said. “The people at the hostel were great but all I had was a bed so I had to put my wheelchair into storage which meant I had no way of getting around. I felt so isolated and alone and frightened of the future.”

Worried about situation

Arran was eventually placed in temporary housing four months ago by the local authority while she continues to look for a permanent home. But she worries about what might happen if she can’t find one.

“It’s a horrible situation to be in – not knowing whether you are going to have a roof over your head in a month’s time or not. I keep looking but with the money I now get I can’t afford anything.

“It’s appalling that people like me are ending up in this state. Of course I’m grateful for any help but it should be enough for people to actually live on.

“It is like there is this draconian punishment of people with disabilities. The Government are trying to get rid of us by pushing us into the corner and hoping we don’t survive and it needs to stop.”

A DWP spokesperson said: “PIP is designed to pay towards the additional costs someone may face due to a disability or health condition, over and above usual living or housing costs – there are other benefits which act as a replacement for income such as Employment Support Allowance.

“PIP assessments are carried out by qualified healthcare professionals and take a much wider look at the way an individual’s health condition or disability impacts them on a daily basis. Under PIP 31 per cent of people receive the highest possible award, compared with 15 per cent under the previous benefit DLA.”