New disability benefits system is ‘full of holes’ says woman with cerebral palsy whose payments dropped from £450 to £80 a month. ‘It felt like in the eyes of society I had miraculously been cured. I have had my disability for a lifetime but in the eyes of the government it had gone’
A woman with cerebral palsy has called for a radical overhaul in a new disability benefit system after claiming it leaves people to fall through the cracks. Lucy Fisher, of Top Valley, was born with the condition and spent a lot of time in children’s wards at Queen’s Medical Centre in the 1990s.
The 33-year-old, who works as an office administrator at Nottingham Community and Voluntary Service, underwent five operations as a youngster to help straighten her legs and feet, and visited the hospital for regular check-ups, splints and physiotherapy. Cerebral palsy is an incurable condition affecting muscle control and movement, and can only be treated by therapy.
At the age of five she was awarded disability living allowance (DLA) to help pay for extra costs associated with her condition – including transport costs and private physiotherapy sessions. In 2013, the government changed the old DLA system and renamed it personal independence payment (PIP). Under the old system, Lucy was able to receive both carer and mobility payments – which gave her the use of a car, and at the age of 21 she was awarded DLA for life.
“Life was good, and everything was fine,” said Lucy. “But then in 2013 the change was announced and I was instantly worried about it. I even joked with friends ‘knowing my luck they will take everything away from me’. “And lo and behold in October last year my letter for reassessment came through and it had changed completely.
“I used to meet with a doctor who would ask questions about how my disability affects me – it was a more personal approach. This form I received was a very limited set of questions with tick box answers.”
Lucy filled out the form and submitted “every bit of medical evidence” she had to support her application.
A few weeks later, an assessor came to her house and asked her to perform three tasks: to squat, stand on one leg, and stand on her tiptoes. But Lucy claims this was not a thorough medical examination and “was not in a medical environment”. It is then assessed and a certain number of points must be achieved to be eligible for the benefit.
“The decision then came in January and said I was no longer eligible for the carer’s element of benefit and was moved onto the lower rate of mobility allowance,” added Lucy. “It meant I was dropping from £450 a month to just £80, and I would have to either buy my car for £10,000 or send it back by April.
“I felt like a criminal on trial with all the questions I had to keep answering. The new system should be similar to the old one. It’s full of holes.
“It felt like in the eyes of society I had miraculously been cured. I have had my disability for a lifetime but in the eyes of the government it had gone.”
On January 31, the Department for Work and Pensions (DWP) said “in light of new information” Lucy would be awarded the higher rate of mobility allowance – meaning she could keep her car. A spokesman for the DWP said: “Decisions for PIP are made using all evidence available at the time of the application, including the claimant’s own personal declaration of mobility.
“In light of new information we’ve reviewed Miss Fisher’s claim, and have decided to upgrade her entitlement. “This is not just a tick box exercise. We take fully into account the information the claimant provides along with any evidence they have to hand. Then there is an assessment by a health care professional.”
Lucy said: “It was such a big relief, but what an extreme method to have to go through. “My car is my lifeline. I find using public transport extremely difficult, and as I’ve just started my new job it’s a necessity for getting me to work, and physiotherapy appointments. “Lots of people are out there in the same position as me. The new method of assessment is very admin-based. If anything it felt like a tick box process.”
Services manager at Disability Direct Charlotte Throssel, which offers advice and helps complete benefit forms, said it had seen a rise in the number of people it had been helping with benefits since the change came in. She said: “Since the new system, client cases have risen extremely high challenging their decisions.
“Previously we used to be a filling in a form service, now 70 percent of our work is appealing benefit decisions. “The wording in the forms, particularly around the mobility sections, is questionable and unclear. “Welfare reform did need to happen, but now under this new system to get a higher rate payment it seems people must be virtually unable to walk at all. It’s unfair on so many people.
“If Lucy’s decision hadn’t been turned around so quickly she said she would have struggled to have a life. “The process is too harsh, slow to get through, and is a painful exercise. It instead needs to be a personal one. “We don’t want to ask to stop it completely, just to re-look at the criteria, and clarify wording as each assessor sees it differently.”
Lucy raised her case with her local Labour MP Vernon Coaker – who highlighted the “appalling public policy” in Parliament again yesterday (February 8).
He said: “Lucy was going to lose a substantial amount of money and it is brilliant it’s been reinstated but she shouldn’t have been losing it anyway. “The question is how many others are there out there just as equally deserving? The new PIP system has been raised in Parliament time and time again. “This new system is unfairly impacting people and I will be calling for it to be reviewed. It is not good enough.”
Chief executive at disability charity Scope, Mark Atkinson, said: “PIP is a lifeline for many disabled people, covering some of the extra costs that they face on a daily basis. “The vital benefit supports disabled people to live independently, visit friends and family and be part of their community. “But many disabled people are denied the right level of support.
“The assessment needs a radical overhaul to iron out the mistrust, lack of transparency and routine inaccuracies which disabled people report on a weekly basis.” Lucy is now calling for “gaps in the system to be closed”.
She added: “I’m lucky my decision was reversed in a matter of hours. “If people don’t question it they are left with lengthy battles to get the help they need. “I want to highlight the problems in this new system and hope it gives others the strength to contest their situation. “It is a biased and unfair process leaving people to fall through the cracks.
“I have won a reprieve for now, but I will have to go through all this again in three years time. I just see it now as an opportunity for them to take it off me. Every three years it will be a fight.”