Official figures show nearly three million people are entitled to receive Personal Independence Payments (PIP), a benefit designed to help people with long-term conditions or disabilities. Fewer than four in 10 claims are successful.
In his spring budget, Chancellor Jeremy Hunt introduced plans to scrap the work capability assessment, a move that has been welcomed by campaigners, to be replaced by a new voluntary employment scheme called “universal support”. But he also said that sanctions will be applied “more rigorously” to those who do not follow instructions to return to work.
It is apparent that the current disability benefits process isn’t working, so we asked the experts what a fair system would look like, and whether that could exist at all.
Ken Butler, Disability Rights UK’s welfare rights and policy officer
For Butler and the people he has worked with, the medical assessment element of applying for disability benefits presents a major problem.
“Assessment reports are carried out by non-specialists and often contain errors and misleading statements with many disabled people not trusting assessors to act fairly and independently.
“To help remedy this, more weight should be given to medical evidence and people’s own accounts of the impact of their disability or health condition, as well as assessments being undertaken by specialists.
“The DWP should also automatically issue claimants with a copy of their PIP assessment report which would increase scrutiny and so help to raise standards.
“Assessors would know that all claimants will be able to see any inaccuracies or misleading statements, which should encourage greater care and accuracy.
A former DLA assessor at an assessment centre in the south of England in 2018
One assessor, who worked in the role for just a month before quitting, told the Big Issue that it was the “most soul destroying experience” of his life.
He described how forcing people with disabilities or mental health conditions to travel to assessment centres has negative impacts on their health, and doesn’t build a picture of the reality of their experiences. He recommended that all assessments be held in people’s own homes, “because then you can see for yourself how these people get by and what conditions these people are living in.”
He also suggested there be greater flexibility over how much time is allocated to conducting an assessment, which in 2018 was 45 minutes. ”Different people need different periods of time” depending on their condition, he said. “Some people might need three hours [but] some people would be so mortified or terrified by the fact they’d have to sit there for three hours.”
The healthcare professional who conducts the assessment should also be the one who makes the decision about awarding the disability benefits, he added.
“It seems completely unfair to me that the person who does the assessment isn’t the one who makes the decision.”
Ayla Ozmen, director of policy and campaigns at Z2K, a social justice and anti-poverty charity
Z2K’s main ask is for the whole benefits system, including assessments, to be redesigned through working with people who have lived experience of disability, illness, mental health and care work. This is the first step towards both restoring trust among seriously ill and disabled people, and ensuring that the system actually works for the people subject to it.
“We know that the assessment does not reflect the realities of lived experience of seriously ill or disabled people. That has to change – the government should commit to redesigning the system in collaboration with the people who rely on it,” Ozmen, told The Big Issue.
Two thirds of people with experience of assessments told Z2K in a 2021 survey that they didn’t think the assessment report reflected what they had said. Seven in ten felt the DWP assessor didn’t understand their condition.
“This not only leads to bad decisions, but it makes people feel disbelieved and demeaned when they are asking for support,” she continued.
To improve transparency and begin to rebuild the broken trust between DWP and seriously ill and disabled people, DWP should listen to the Work and Pensions Select Committee and record all assessments by default, as well as let every claimant see a copy of their assessment report before it is sent to the decision maker.”
Rachel Charlton-Dailey, freelance journalist and disability activist
“I’ve been doing PIP and I’ve been doing ESA [assessments] for most of my adult life now and they’ve pretty much always been horrific,” said Charlton-Dailey.
First of all, she says the assessment should be undertaken by medical professionals who have specialist knowledge or understanding of the disability or condition of the person they are assessing. “I’ve been in assessments because I’ve got lupus and endometriosis. I’ve been in assessments where men don’t know what endometriosis is and where the assessor doesn’t know what lupus is,” she said.
Secondly, the process of forcing people to travel long distances to assessment centres where they must then wait for hours can be “traumatic”, she said.
“Simply by attending, or travelling by yourself or a longer distance, that’s classed against you,” she said.
Charlton-Dailey said she has spoken to a disabled person who had to take a train and a bus to get to the assessment but, due to their condition and the length of the journey, had wet themselves by the time they arrived.
They were then forced to wait for hours and later told, because they had travelled to the assessment alone, they were able to travel to a workplace. Assessments should be conducted nearer to people’s homes, in their own homes, or by video call, Charlton-Dailey stressed.
The physical assessment element of the process was particularly upsetting for Charlton-Dailey, who is a survivor of domestic violence. She says she had no choice but to be alone with a male assessor in a very small room, despite begging for her mother to be present.
Lastly, the criteria upon which a person is assessed needs to be revamped to better acknowledge the realities of having a disability, Charlton-Dailey said.
“Mobility changes day to day” for some people, she said, therefore to suggest that a person is mobile because on one particular they can walk for 10 minutes unaided is not correct.