The assessment process for disability benefits is not fit for purpose, especially for medical conditions where symptoms fluctuate, according to health experts.
Assessments for personal independence payments (PIP) have come under scrutiny as the Government looks set to overhaul them as part of welfare reforms.
The controversial welfare bill was approved by MPs last week, but only once planned changes to disability benefits were put on hold until after there has been a major review of the assessment system.
The Government had been planning to tighten the criteria for getting PIP.
But under pressure from backbench MPs, the changes were paused until work and pensions minister Sir Stephen Timms has carried out a review of PIP assessments, which is due by autumn next year.
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“The review will examine the PIP assessment criteria… to consider whether these effectively capture the impact of long-term health conditions and disability in the modern world,” Timms has said.
PIP assessments have long been criticised by disability campaigners for being unfair and failing to recognise the impact of certain medical conditions.
Former assessors have also claimed that the system is target-driven and that there is pressure to downgrade the number of points needed to qualify for PIP.
How does the system currently work and what are the problems?
PIP benefits are designed to help people with the extra costs of living that come from being disabled, for instance transport costs or buying special equipment or food.
They are separate to, and come on top of, any universal credit payments, which replace income for people who are out of work, too ill to work or in low-paid employment.
Claiming PIP involves filling in an online form, followed by an interview with an assessor, usually a contractor for the Department for Work and Pensions.
There are two parts to PIP, the daily living component and mobility component. Claimants answer 12 questions on different activities, like how well they can wash, make meals or how far they can walk.
For each question, they get more points if they are less able to do the activity. Depending on how many points are reached, they may get PIP at the standard rate or the enhanced rate.
What are the problems with PIP assessments?
The process is complicated and people often need help, said Mikey Erhardt of Disability Rights UK. “We generally recommend people don’t go through it on their own, that they get help from a friend, a family member or a legal advocate.”
A key problem arises for people whose condition gets better or worse from day to day. For instance, people score points if they are unable to do a task more than half the time. But in someone who has that level of disability for slightly less than half of the time, it could still have a major impact on their life and raise their living costs.
Mental health conditions like anxiety, depression and schizophrenia are the most common reason for claiming PIP and these can vary from day to day, said Dr Sharon Stevelink, an occupational health expert at King’s College London. “One day you are fine, the next you can’t get yourself out of bed.”
The assessment process seems to have been designed more with physical conditions in mind. “If they want to reform the PIP assessment process, they may have to come up with mental health-specific ‘indicators,'” said Dr Stevelink.
It is telling that if people who are turned down for PIP appeal with the Ministry of Justice, seven in 10 are successful, said Dr Stevelink. “That says the assessment process is not fit for purpose.”
Some physical conditions can also be unpredictable, like epilepsy or certain other neurological disorders, said Professor Jon Stone, a neurologist at the University of Edinburgh. “They can be suddenly incapacitating and can make it hard to reliably plan work or social activities.”
Another condition that can fluctuate is multiple sclerosis (MS). With some forms there are remission periods, where people are much better, which can last from weeks to years. “You can be able to do certain tasks on certain days, but if that assessor came on another day, then the symptoms could be completely different,” said Ross Barrett, policy manager at the MS Society. “That is not something that is really reflected within the process.”
The MS Society would like to see PIP assessments change so they use more graduated scales rather than hard cut-offs, for instance in how far someone can walk. “If people can just walk one step over 20 meters, then they won’t receive the highest rate of mobility support,” said Barrett.
One of the most contested proposals from the Government was the “four points rule”. At the moment, people qualify for the standard rate of daily living PIP if they reach eight points.
The Government planned to change this so that, as well as needing eight points in total, someone would need a minimum of four points on at least one of the questions, which campaigners said was too high a bar.
In fact, Disability Rights UK said under the current system, nine out of 10 people currently getting standard-rate PIP would lose it under the four point rule.
After pushback from MPs, though, the Government first said the four point rule would apply only to new claimants from 2026, then said there would be no such change until after the Timms review.
But that still gives leeway for the four point rule to make a return, said Erhardt. “There’s the looming threat that there’s this arbitrary criteria that’s going to come in.”
What will happen next?
Everything hinges on the Timms review. Ministers have said that disability rights groups will be “coproducers” of the report, so that it takes account of the views of claimants.
But Timms has a difficult task. As well as reviewing PIP, his review also has to merge the PIP assessment with a separate assessment for the health element of universal credit, for people who are too ill to work.
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A single assessment for anything to do with health and benefits payments may sound sensible on the face of it, but PIP and universal credit are for different purposes, said Erhardt. PIP is supposed to help disabled people cope with their higher cost of living whether they are in work or not. “The idea of a test that measures extra costs somehow now measuring your ability to work – it’s very difficult for us to understand how that might work.”
And despite the review’s supposed purpose of making PIP more fair, its own terms of reference suggest it is at least partly motivated by the growing benefits bill.
That document says that the number of people claiming PIP has grown from two million working age people in 2019 to three million by 2024, and is set to reach four million by 2030.
The review needs to ensure the benefits system’s “sustainability”, it says. “There have been greater increases in the prevalence of disability among young people and a rise in mental health conditions.”
A DWP spokesperson said: “We’re reforming the welfare system so people are genuinely supported into work, while putting it on a sustainable footing.
“We are putting disabled people at the heart of a ministerial review of the PIP assessment to make sure it is fit and fair for the future, and we will work with them and key organisations representing them, to consider how best to do this.”
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