THOSE with a disability want to work — and do work if they can. But mounting disability-related costs, such as care costs, as well as hostile environments for those who do get jobs, mean there are lots of barriers to entering the workplace and remaining in work.

A Labour government making it harder to apply for Personal Independence Payments (PIP) or renew claims for PIP will be another barrier for those who are trying to access the workplace.

With the reports of those with disabilities languishing at home and not wanting to work, it’s important to get two points clear from the start. Nobody wants a disability, and nobody wants to be stuck at home all day.

When I sustained my spinal cord injuries at the age of 18, I was keen to study and get to work. It was only decades later when my leg was amputated and I’d been diagnosed with the secondary conditions connected with my disability — osteoporosis, kyphosis and serious pressure sores — that I was forced out of paid work. I did work as a non-executive board member in a voluntary capacity until my physical condition deteriorated further.

My story is like those of most people with disabilities in that we do want to get out there and work for as long as we can. We’re not “reluctant” or as some right-wing reporters say “feckless.”

What helped me take that step into work and remain in work for so long was PIP (formerly Disability Living Allowance). This is paid whether someone is working or not, as it’s to help with the additional disability-related costs.

But since my day, these costs have been rising exponentially. This is a huge barrier to employment, as it’s often difficult to find work that pays enough to cover them.

The charity, Scope, which campaigns to transform attitudes to disability, tackle injustice and inspire action, calls these costs the “disability price-tag” and in its 2024 report found that on average, disabled households need an additional £1,010 a month to have the same standard of living as non-disabled households, and on average the extra cost of disability is equivalent to 67 per cent of household income, after housing costs.

Scope says: “The financial struggle with extra costs is ongoing. And has a detrimental impact on the health and wellbeing of disabled people. At the very worst, this can be life-threatening.”

Such figures are familiar to Sarah, who works with disabled children and young people. Sarah has autism and other serious and long-term conditions.

Sarah told me: “My monthly take-home pay is £1,050. But I have to pay £1,030 just the on the care costs to help me with tasks around the home.”

With these disability-related costs rising each year, making PIP harder to claim could be catastrophic.

Sarah said: “Without PIP or my amount of PIP decreased, I wouldn’t be able to work. I’m at breaking point at the moment. I would in effect be paying to go to work as I can’t stop paying for the help at home.”

Catherine works at a university. She has neurodevelopmental and learning disabilities as well as other long-term conditions.

I asked her what impact changes to her PIP entitlement could have. She said: “It would lead to the loss of assistive software helping me to do my studying/job as well as the medications that enable me to focus and deal with pain.

“My transport costs would increase, and I would lose the subscriptions to services which enable me to work and the analytics software the university doesn’t provide.

“Then it’s the loss of things that keep me sane from time to time, losing any kind of small social life, things that keep me going.”

Changes to PIP such as making it harder to get or reapply for could mean difficult decisions for Sarah and Catherine as to whether they can afford to go to work. But there’s a further risk, as this might mean they’re no longer able to remain independent at home.

This is the case for Frank, who worked as a school caretaker and has a mental health and learning disability. He explained to me how he had to give up work last year due to a serious accident. He’s now facing mounting care costs.

Frank said: “A key word in the title of PIP is ‘independence.’ If I lost my PIP, I might have to go into a care home. I’ve been fighting for years to stay independent and for this not to happen.”

The cost of accessible housing in comparison to homes for those who are able-bodied can contribute to this battle to remain independent.

Simone, who’s currently not working due to mental illness said to me: “I don’t think many people realise that PIP ends up being swallowed up by such high rents. I often have to ask my friend to help me pay for the healthcare costs that aren’t covered by my prescription. If my PIP award changed and I lost any money, then I don’t know what would happen in relation to my housing.”

Such high disability-related costs can be a huge barrier to employment. Making PIP even harder to obtain could mean people with disabilities don’t get this crucial benefit. This might mean the difference in taking up a post or remaining in employment.

Of course, it’s not just cost barriers that disabled people face regarding the workplace. Getting the equipment required using Access to Work can be problematic. In an article last year, I wrote about Glyn Hayes who has a spinal cord injury and needed a wheelchair adaptation for work.

Instead of the expected 12 weeks, delays and delays pushed this to 12 months. Hayes was lucky in that his employer was “disability friendly.” But many employers are not so patient.

Daisy’s main area of work is data input and data analysis. She has autism as well as other physical disabilities. She told me: “Despite legislation banning such discrimination, I’ve often been called for an interview after submitting my CV and application but as soon as they see my wheelchair that’s it, I don’t get the post.”

This is something Catherine has also witnessed. She said: “Barriers for disabled individuals can start early and seem insurmountable, such as when an employer chooses not to interview a candidate who discloses their disability in a cover letter, or who rejects them when they discover the truth during the hiring process.”

Daisy has also mentioned just how hostile workplaces can be if employees manage to get a job. She said: “Most jobs I have faced constructive dismissal from. I’ve been fired from two jobs, one for being stalked by a colleague, and another after I was physically attacked by a contractor, who did not get a job he wanted after he arrived late to work. I was the one deemed a problem. In another case, I was fired by withholding hours after a new manager came in and decided that I was an ‘insurance risk’.”

Catherine also knows how stressful and tense workplaces can be for those with a disability. She said: “The perceptions of co-workers can translate into behaviour towards that disabled person which can negatively impact a disabled person’s work. Stereotypes (or uncomfortable realities) about disability can lead to marginalisation within the workplace, influencing everything from job performance to professional relationships.”

The demonisation of disabled people by the government filters down creating what already is an uncomfortable environment even worse.

Catherine said: “Every ‘disability benefits scrounger’ story is another potential reason for someone to put a target on our backs.

“If you’re lucky, you might end up as ‘one of the good ones who deserve help,’ but if your co-workers see you to be ‘playing the system,’ then you’re not just in danger of people creating a hostile environment towards you, but disability hate crimes and workplace discrimination, too.”

For those with disabilities, Labour has not just broken our trust, they’ve also managed to recreate the fear of the David Cameron, George Osbourne period, with actions that appear incomprehensible and cruel.

That’s because if the intention is to encourage more disabled people into work, then Labour should be looking at the barriers people with disabilities face when trying to access the workplace, such as the housing and care costs, plus the disability markup on essential products.

And, as a matter of urgency, Labour should be addressing the hostile workplaces and discrimination those with a disability still face at work, and when applying for jobs.

Making PIP even harder to obtain or reapply for will simply create another barrier. If Labour wants to change the culture around disability and work, then a more “sustainable” way will be by removing such obstacles.

Ruth F Hunt is a columnist, freelance journalist and author.

Some names have been changed to protect confidentiality.