Paul Richardson* has just got off the phone with the Department for Work and Pensions (DWP). It was another phone call trying to check on the progress of his daughter Jennifer’s application for the new disability benefit, the Personal Independence Payment (PIP), but it was another conversation that got them nowhere.
Jennifer has borderline personality disorder and has made two suicide attempts since she left school. She’s now 22 and this year moved back to live with her parents. She finds it difficult to talk to strangers and her mum and dad have been dealing with the PIP process as much as they can on her behalf. The process has been difficult from the offset when they had their first meeting at home in November.
“The DWP person arrived and explained the form to us but didn’t have a blank copy of the form with her so we had to wait for a form to be sent,” Paul tells me. “By this time it was just before Christmas and we were told that nothing would be done with the form over the Christmas holiday period.”
When Paul called the DWP to try and update them on Jennifer’s meetings with mental health specialists, he was told they would hear nothing about their application for up to a year.
“She told us…we’d have to wait 10 months at least for any kind of decision or even for a first assessment meeting,” Paul says. “When asked why it was taking so long I was told that as this is a new benefit there have been a lot of applications. When asked if the government had made sure that there were enough people to deal with the assessments I was told ‘presumably no’.”
The Richardsons are not alone in their experience. Fewer than one in six people who apply for Personal Independence Payment have had their claim decided, DWP figures revealed this month (pdf). They are the first figures to be released since the PIP’s rollout began to replace Disability Living Allowance (DLA), the outgoing benefit to help people with mobility or care problems, and present an initial picture of widespread delays, backlogs and rejections.
Jennifer has no income of her own. Like many people with a disability or long-term health problem, extra costs continue to mount up. The family has to spend more on something as seemingly insignificant as heating.
“I have to bath a number of times each day and the bath needs to be full,” Jennifer explains. “When I’m having a bad spell I lie in bed, get up and bath, lie in bed for a few hour, another bath, back to bed and will repeat this cycle continuously.”
Paul has had to give up his job as a teacher and taken work as a lorry driver so that he can drive Jennifer to her medical appointments in the week or college when she feels well enough.
“This is all just a waiting list before an assessment,” he says. “It may take even longer for a decision to be made.”
Almost two out of three people who apply for PIP are receiving nothing at all unless they are terminally ill, the first figures show. Out of the 15.4 per cent of new claims that have received a decision, only 37 per cent were awarded some rate of PIP. This means that only 12, 654 people, out of the 220,300 who have made a new claim since its initial introduction in April 2013 have been awarded the benefit.
Amanda Jones* received her rejection letter at the start of this month. The forty-six-year-old has profound hearing loss and is unable to communicate without British Sign Language (BSL). Despite receiving DLA until the benefit expired, she was turned down for its replacement and now faces appealing the decision or having no financial support for her disability.
“Disability costs and [people] forget what the extra costs are,” Amanda writes when we talk via email. Small but costly things like having to keep her car because she can’t use a bus.
“No one goes through such a process as the DLA or PIP applications without needing it,” she says.
She tells me her PIP assessment lasted two hours with no break and she was unable to communicate at various points.
“The assessor stood behind me and talked over my head with the sun blazing through the window behind her making it impossible for me to lip-read,” she says. “The BSL interpreter was not in the room at that point.”
“I’m told by some BSL interpreters that they have been told by assessors to stop signing to deaf clients as they want to find out how much they can understand,” she adds.
She was awarded only four points; half as many as she would need to even receive the lower rate of PIP.
Unlike DLA, Personal Independence Payment is a points-based assessment, awarded on “descriptors” on a range of activities related to someone’s daily living needs and mobility, such as washing and bathing, or communicating verbally. Campaigners have long been concerned that, like the other key disability benefit, Employment Support Allowance (ESA) and its controversial Work Capability Assessment, PIP’s point-based assessment would result in poor decision-making and widespread appeals. The Government’s own figures predict that 600,000 people with disabilities will lose their entitlement to support under the new criteria.
“Many deaf people and other disabled people I know are terrified of the assessment and what will happen. It is clear that in terms of mental health, hidden disabilities where it is not obvious and especially deafness, is being completely disregarded during the assessment process,” Amanda says.
Jennifer has similar feelings when I ask her about her experience. “The PIP form [that I had to fill in before the face-to-face assessment] isn’t geared to mental illness, more physical issues,” she says.
Her dad agrees.
“On a bad day [Jennifer] is totally incapacitated. There are as many bad days as good days. On a bad day she won’t be able to physically do anything and yet there are no physical problems at all,” Paul adds.
The assessment process itself, and the multiple, often testing stages of which it consists, is feared to be unsuited to people with mental health problems. Jennifer tells me her condition means she finds it impossible to talk on the phone or communicate with many strangers.
“My parents have to make all appointments and try and sort out things for me,” she says. “But very often people won’t speak to them about me and that can be frustrating.”
In my conversations with people experiencing these first assessments for PIP, in addition to six, eight or ten month delays, “frustrating” as well as “worrying” and “circular” were common themes.
Amanda tells me Capita – the private company who along with Atos were awarded the PIP contracts by the Government – have been forced to apologise twice to her during her assessment process for basic errors.
“The last time was when they kept ringing me despite telling them I was deaf,” she says.
She waited five months to be assessed but at one point was sent two different dates for her appointment. “They ignored my emails,” she says
“My MP had to intervene to get them to sort out [it out].”
Having someone to turn to is not a guarantee, of course, whether that’s a local politician, family member, or the increasingly pressed services assisting people affected by social security changes.
Jay Henderson, 49, suffered a stroke last summer and was left with severely restricted speech and mobility. She now uses a wheelchair and needs a carer to help her with basic needs such as washing and preparing food.
Her ex-partner, Ken, has given up work to help with Jay’s care and has been trying to access her benefits for her for seven months.
“I've tried so hard since her stroke last June…but not having the right information from the beginning from all the different agencies has made it very difficult and it's beginning to take it's toll on me,” Ken, 49, says. “I try to remain positive but it seems like we are fighting a losing battle.”
Jay applied for PIP a month after her stroke and over half a year later has heard nothing. It is not the only benefit delay affecting her. PIP, of course, does not exist in a vacuum but is often part of a wider set of benefit needs, each reliant on the same system. With Ken’s help, Jay applied for the out of work sickness benefit, ESA, at the same time as PIP but has had no response since being put on the assessment rate (a lower rate than she would receive once she has been assessed). This period should last no more than thirteen weeks but, for Jay, has been seven months.
“I’m at my wits end,” Ken says.
He tells me he’s been providing medical evidence for months but all he finds is dead ends.
“I contacted DWP and they say contact Atos even though they are the employer's of Atos. What are you supposed to do?”
The delay with both PIP and ESA mean money is now too short to pay for even the basic things Jay needs. She’s had to rely on food parcels from her local food bank to eat. Tins of powdered custard and jelly.
“They were appreciated but not very practical,” Ken says. “Sufficient to live on…nothing really matched up to make a meal. Plus Jay wouldn’t have been able to prepare any of it or even open it [if I wasn’t here].”
“You’re only supposed to receive three parcels,” he adds. “They did get them extended to two weeks as there wasn't enough money coming in for Jay to live on.”
The phone was due to be cut off but, worried what would happen if Jay had a fall and needed to call the hospital, Ken managed to delay payment until the end of this month. The electricity is in arrears and the bills are starting to mount.
“How long will these people wait, who knows?” Ken asks. “How long will benefits take, who knows?”
“The system just isn't working. No one’s following the rules or their own guidance. DWP blame Atos, Atos blame DWP, legal aid cuts mean people can’t challenge the system…you end up going round in circles.”
Paul, meanwhile, is waiting for another letter from the DWP. The phone call ended when he was told him he needed security information before he could talk about Jennifer’s claim. The computer wouldn’t tell him what that information was, he was told, but it would be posted to him.
“We’ll cope with or without government help, but this system is so poor it needs someone to expose it for what it is,” Paul says.
“If my daughter had no family support I reckon she'd be dead by now,” he adds.
*Names have been changed