In the last issue of Enable we shone a light on the growing mistrust in Personal Independence Payment. With understanding limited amongst assessors, the 20-metre rule faces increased disconcert. We investigate the campaign to scrap the 20-metre rule.
The move to change Disabled Living Allowance (DLA) with Personal Independence Payment (PIP) in 2013 was met with concern. It was a change promoted to save money by the government, but it has failed.
As PIP replaced DLA so did its criteria and assessment process. From consultation to implementation the new formula was seen as worrisome from charities, welfare groups and the disabled community.
The MS Society opposed the new assessment criteria, highlighting the 20-metre rule as one of the main issues. During the assessment process applicants are asked if they are able to walk 20-metres, roughly the length of two buses. The measurement is less than half of the marker for the previous DLA assessment, 50-metres.
Head of policy at the MS Society, Phillip Anderson, says: “We told the government in the consultation process that the 20-metre rule would be disastrous.”
The effect of the rule was felt instantly by applicants. Both Emma, who has multi ple sclerosis (MS), and Sajid, who has Parkinson’s, received a lower rate of PIP than they would have received on DLA.
Despite meeting assessors in person, neither Emma or Sajid were given the opportunity to demonstrate how far they could walk.
“Having someone guesstimate how far you can walk without actually measuring the distance was very frustrating,” explains Emma.
When Sajid went for his assessment he was unaware of the new rule or how it would affect him. “Without thinking I said I suspected I could walk the length of two buses, but not more than that,” remembers Sajid. “I got a letter saying that they were withdrawing my disability allowance because I can walk more than two buses.”
Overwhelmed by the negative effect of the rule, the MS Society started a campaign to scrap the PIP 20-metre rule.
More than a year aft er the campaign began, the rule is still in place, causing hardship for people who rely on the benefit to help with the cost of travel, treatments, and daily living.
“It has no relation to the amount of support people need to live independent lives,” stresses Phillip.
“There are people who can walk 21-metres who need support just as much as people who can walk 19-metres.”
Emma believes that assessors don’t have enough understanding of different conditions. This is of particular concern with fluctuating conditions like MS, she continues: “With MS you can have a better day then a really bad day, on a good day you might be able to walk 20 metres, but you definitely can’t on a bad day.”
The unfairness of the rule stretches further than the assessment itself. Being awarded a lower rate of PIP can have detrimental effects on both mental and physical health.
“People are losing support and dealing with worse isolation and a lesser quality of life overall,” explains Phillip. “People are trapped in their homes.”
Before PIP came into place Sajid was receiving a higher rate of DLA and had a Motability car, this was taken away after his PIP assessment. Without an adaptive car Sajid was unable to leave the house alone and had to rely on his daughter for support.
“I would have to ask her to take me out, she’s a young lady at just 24-years old and has a four-year-old son,” remembers Sajid “She’s a blessing in disguise for us.”
After applying for mandatory reconsideration Sajid was awarded the higher rate of PIP and given his Motability car back, he says: “At that time, it was very difficult but now it’s getting better because I have my car back.”
The pressure on Sajid’s family is not an isolated incident. After having a major relapse last year, Emma wasn’t able to afford things to help her live independently, she remembers:
“I had to borrow money from my mum that she had put aside to pay for her funeral in order to buy a mobility scooter.
“Because I didn’t get what I thought I was due I couldn’t save the money to buy the scooter myself.”
Since the campaign to scrap the 20-metre rule was launched the support has been overwhelming, but there is still a need for change.
“Unfortunately, we don’t often see change like this happen all at once,” admits Phillip. “We’re closer than we have been before.”
Until the 20-metre rule is changed or removed the assessment process is not fair or suitable, Sajid says: “It should go back to the 50-metre mark because that is more realistic, if they can’t get it to 50-metres then it should be scrapped.”
Like Sajid, the MS Society believes reverting back to a 50-metre rule is a step in the right direction, but would like to see a holistic approach to assessments.
“Rather than ‘can you walk 20-metres’ they should test how far you can walk and how that affects your life,” emphasises Phillip. “It would be a much more sensible way of looking at it.”
As the campaign to scrap the 20-metre rule matures past its first year, disabled people continue to be failed by the criteria. The MS Society, along with people affected, continue their calls for change in the welfare system.