Disabled woman forced to quit job she loves after DWP support slashed: 'I can't make it make sense'

Jess Thom owes “basically everything” to the Access to Work payment from the Department for Work and Pensions’ (DWP).

“Everything I’ve achieved is thanks to that,” she tells Big Issue. “When it works, it’s absolutely amazing.”

The celebrated British comedian, writer and disability rights advocate has performed at the Sydney Opera house, hosted events at the Barbican in London, and made a BAFTA-nominated sitcom pilot. She also runs Touretteshero, an arts organisation dedicated to transforming misperceptions of the condition.

These successes would not have been possible, Thom says, without Access to Work grants.

But brutal DWP cost-cutting drives might force her – and thousands of other disabled people – to give it all up.

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Last month, Thom was informed that her Access to Work Payment would be cut by 61%.

“Nothing about my impairment has changed. Nothing about my work has changed,” she tells Big Issue. “The only thing that can have changed, the only thing that’s different this year to the last 15, is that something has changed within Access to Work’s decision making.

“My initial response was one of despair. I sobbed.”

Under the Access to Work scheme, companies and employees can apply for grants to assist disabled people in the workplace. The scheme provides support beyond “reasonable adjustments” an employer is required to make by law.

It’s intended to save disabled people from extra costs, and to prevent employers from discriminating against applicants who need costly workplace accommodations.

The complex requirements of Thom’s condition necessitate “round the clock support” – and for more than a decade, Access to Work has funded this at work.

“In 2011, I started experiencing intensification of tics, and tics that affected my mobility, so involuntary movements that compromised my walking,” Thom explains. “I’m a wheelchair user, I have these periods where I completely lose control of my voice and body.

“When that [intensification] happened, it was a huge shock. Access to Work rescued me. It showed me that with the right support, a working life and a full career was possible for me.”

In 2023/24, some 61,630 people received an Access to Work payment. Total expenditure on the programme was £257.8 million.

But Access to Work is under pressure. Disabled workers face delays of more than six months before their applications are even assessed; as of last October, there were 55,000 outstanding applications. Thom’s renewal took a staggering ten months.

How is the DWP changing Access to Work?

In February, Stephen Timms – minister for social security and disability – hinted at dramatic changes to the programme.

“What we will need to do… is make some fairly significant reforms to Access to Work, look at whether employers can do more,” he said. “There is quite a big issue here and the current style of Access to Work is unlikely to be sustainable in the long term,” he said. 

“We have to come up with something better and more effective, given the current very high level of demand.”

But advocates are apprehensive about what ‘better and more effective’ will mean in practice.

Alarming reports are circulating. Earlier this month, disability consultant and Access to Work adviser Alice Hastie revealed planned changes to the scheme’s “operational delivery”.

These changes – leaked to Hastie by a DWP worker – included harder limits on hourly rates for support workers and stricter rules for awarding support workers in the first place.

“Overall, in my opinion, these changes will directly undermine the government’s stated aims of getting more disabled people working and off disability benefits,” Hastie posted on LinkedIn.

A DWP spokesperson said that the welfare system should “support people into work and out of poverty“.

“We are consulting on Access to Work as we want to find the right balance between helping people access employment and helping them stay in work while also supporting employers to provide reasonable adjustments as part of their legal duties,” they added.

“We encourage people to have their views and voices heard on how they think the programme and the welfare system could be improved as part of our Plan for Change.”

The consultation on such alterations is officially ongoing, though Amnesty International have described the process as “sham-like.”

Experiences like Thom’s suggest that cost-cutting is already embedded within approvals procedures.

“Even though they’re seemingly consulting on it, it feels like some of these changes are already being implemented,” she said. “My case is not an isolated one. We’ve been contacted by 20 people since Friday in almost exactly the same situation.

“I’m obviously in a privileged position… I work in a disability-led organisation, and I have an established career. I am particularly concerned for younger disabled people, for disabled people in more hostile or less inclusive working environments, for people who are newly disabled, for freelancers and the self-employed.”

But even for Thom, the practical implications are immediate. With her new allowance, Thom could only afford to pay her support worker around £11 per hour – less than minimum wage and well below living wage in London, where Touretteshero is based.

With the help of her colleagues and Decode, a consultancy working to help people navigate the Access to Work process, Thom has submitted an appeal to the decision. But in the meantime will step back as co-artistic director of the organisation.

“Keir Starmer says Labour is ‘the party of work’, she says. “So if this is true, I ask, why is it that for the first time in 15 years I’m being forced out of doing a job I love because of a decision made by the DWP under his watch?”

Economically, this cost-cutting could backfire, Thom adds: “It’s not just my job that’s on the line, it’s my support worker’s. And we are both taxpayers.”

According to disability charity Scope, every £1 spent on Access to Work “provides a saving of £1.88 to the treasury”. Disabled people forced out of work by the withdrawal of the payment will still require support – they’ll just have to get it from NHS and social care.

For the people behind the numbers, the decisions are “life-altering” – and it’s hard not to read them as “an attack on disabled people”.

“This is about whether everything I’ve worked for within my career can continue or not,” Thom says. “It’s about my independence, my financial independence. It’s my livelihood. It’s about everything my life is built on, the things I care about, and obviously on the income that work generates.

“To be in a position where all of that is at risk, not because of anything I have done, not because of anything my employer has done, but because of a changing decision – it doesn’t make sense. I can’t make it make sense.”

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