SPRING is meant to be a time of optimism, but for those with physical and mental health disabilities, any cheerfulness ended abruptly when Chancellor Rachel Reeves announced the cuts and changes in the green paper and the Spring Statement — particularly focused on the disability benefit personal independence payment, known as PIP.

Hitting the severely disabled with cuts is highly controversial, especially from a Labour government where the savings are linked to increased defence spending. 

It can be difficult to explain how the disabled face extra costs, but on one episode of Dragons Den a few years ago, it was made clear when an entrepreneur was showing the “dragons” a wheelchair cushion she had made. When asked the price of the cushion for the customer and how much the landed price cost her, the dragons winced. She was asked why it was so expensive for the customer, when it cost so little to make. She fumbled around for an answer before saying the price would indicate “quality.”

This is called the “disability mark-up” where equipment for those with a disability has an inflated, excessive price.

Hospital, council and wheelchair services can only supply so much. Everything else must be self-funded from specialist cushions, to care costs and even the home you may be living in. All, including housing costs, will have this excessive disability mark-up. 

This leaves those with serious conditions, such as a spinal cord injury (SCI), reliant on the state, when they’re working and when they’re not, because of these excessive costs related to having a disability.

Elaine, who has an incomplete SCI, said: “When I look at the receipt for my online shopping order, I can see that nearly half it is for my disability such as incontinence pads (I can’t use the ones the council gave me) creme, and dressings for vulnerable areas like my hips. That’s just costs that I have with a job or not.”

To help Elaine with some of the financial barriers, PIP is a benefit to help mitigate these disability-related costs.

But PIP is one of the most arduous benefits to apply for with a self-assessment form, medical evidence needed from consultants and others involved in the care of the person claiming, plus a face-to-face assessment. There are strict eligibility rules as to who will qualify and if so at what rate. Not everyone with a disability will qualify for this benefit or choose to apply for it.

But it isn’t just arduous in terms of what you must do to apply for this benefit. It’s also mentally challenging, as you must focus on what you can no longer do physically, what challenges you might be facing psychologically and what care you might need. Mentally this takes a massive toll on a person’s wellbeing. 

The government is now planning to make the eligibility criteria for PIP tighter. Where it will hit people is on the “daily living” questions. This will mean even more people won’t qualify for PIP, and that might include people with SCI. 

Why this is important? Sustaining an SCI can be costly in many ways. 

Financial price tags can mount up quickly, and this can add a barrier into finding work with it being extremely difficult finding a salary that can cover or even go near to covering such costs. 

But trying to find such work can be challenging for other reasons. Another patient with an SCI Daniel says: “I am navigating a health and care system that doesn’t work for people with SCI. So, how can I be expected to hold down a job when I am going to have to take time off because I am struggling to access the appropriate care or missing out and falling into cycles of ill health?”

That’s a good question, because finding decent employers where there is an understanding of the needs of someone with a disability, like an SCI and a salary that can cover the level of disability-related costs, can be a difficult task. If PIP was cut it would create another barrier to getting such employment.

As a mental health columnist who also has a spinal cord injury, along with secondary conditions, I know the government proposals in terms of PIP will cause a lot of anxiety and distress, especially as many of those with an SCI also have mental health challenges. 

During the austerity years of the previous government, the mental health of those facing cuts deteriorated not only because of cuts, but a depiction by the then-chancellor George Osborne of “strivers and shirkers” — the neighbours who haven’t opened their curtains first thing in the morning. Such language and imagery was gobbled up by the press and splurged across front pages.

I see this now, with the “usual suspects” both online and in the printed press demonising those who because of a disability or disabilities need to claim PIP. 

Many commentators were getting the facts completely wrong, with outlandish claims and airing old complaints about those with disabilities supposedly getting free cars and blue badges (even though these schemes are separate from PIP).

Such negative, derogatory and demeaning headlines and stories about those with disabilities can be highly damaging.

Applying for benefits like PIP can be extremely difficult, no matter what the disability. But for those with SCI, fresh data from the latest What Matters report from the Spinal Injuries Association (SIA) shows that when almost 934 with SCI were questioned in January and February this year 70 per cent of respondents with SCI faced challenges/difficulties accessing benefits.
 
Difficulties in accessing vital benefits in a timely manner was something Dot experienced when she sustained serious spinal cord injuries and was on a ventilator. Costs were mounting and one thing that needed to be done was to claim PIP so that these costs could be more manageable. Dot couldn’t tackle the forms, but luckily her close friend Andrea stepped in. 

Andrea recalled her numerous conversations with the PIP office, during which she was repeatedly asked to put Dot on the phone, despite explaining that Dot could not speak due to being on a ventilator.

She was also told that Dot needed to sign various paperwork, although she could not move her hands and she was told to get Dot to email PIP directly, even though Dot was at that time incapable. It was only when Andrea was finally able to escalate the case to a manager that they sent someone to the hospital for a face-to-face meeting.

Andrea said: “Ringing PIP and getting them to understand the severity of the situation, it’s like they’re not geared up for somebody who was in a coma or who has a critical injury. Like Dot, you’re in a very stressful critical situation, but you feel like you’re against a brick wall. The government departments are just not set up for this serious level of injury and at a time when you really need that support.”

Teresa Skinner, support line co-ordinator at the SIA, said: “Calls regarding benefits, particularly PIP, are a daily enquiry now, mainly because their benefit has stopped. No face-to-face assessments is a big problem: health conditions cannot be assessed over the phone properly. It causes severe hardship, not being able to get out because of loss of cars, not being able to have personal care and help around the home, the list can go on.”

Skinner said it was important assessors need to have better understanding of SCI and the impact on life. Without this understanding, Skinner said, “it is causing severe hardship and further mental health problems.”

Dot has said: “Amazingly, with the patience of good friends and perseverance and a bit of attitude, they’ve managed to get it sorted. They really fought hard for me and spent lots of time doing things, making it possible for me to go home, which is what I really want to do.”

The Chancellor already knows people with disabilities face challenges financially with the disability mark-up making it costly even with PIP, to manage day-to-day expenses. Tightening eligibility will add further costs to an already disadvantaged group and create a further barrier to obtaining work.

RF Hunt is a columnist, freelance journalist and author.