A leading disabled artist has been forced to stop working by “devastating” and “destructive” cuts to the Labour government’s Access to Work disability employment programme.
Jess Thom (pictured this week) has had to halt her work with Touretteshero after AtW cut her support package by 61 per cent, a decision she received while recovering from major heart surgery to replace a pacemaker.
Since 2011, ATW has funded a full-time support worker to assist her with her mobility and manage her daily seizure-like episodes.
Without this support, she cannot run the organisation she founded – she is co-artistic director – which has become a multi-award-winning, disabled-led creative arts company with an international reputation and an annual turnover of nearly £1 million.
Because of the “huge” AtW backlogs (see separate story), she submitted a renewal application last July, even though her award was not due to expire until late last month.
But when she finally received notification from AtW on 7 May that her award had been approved, she realised her package had been cut by nearly two-thirds, that the hourly rate for her support worker meant she would have to pay them less than the minimum wage, and that AtW had ignored key parts of her request.
Because of her impairment, she cannot work without a support worker.
Her immediate reaction to the notification from AtW had been to burst into tears, as she knew it put her career, and everything she has built at Touretteshero, at risk.
She told DNS: “Without support, I can’t work. It’s as fundamental as that. I need someone with me. It’s way beyond what is a reasonable adjustment.
“Touretteshero makes huge reasonable adjustments for me, but beyond that I need skilled support to do my job.”
She has appealed the decision, with support from consultancy Decode, and has taken legal advice, but it could take 17 weeks until AtW responds to her appeal through the “reconsideration” process.
She said the decision on her claim appears to confirm a DNS report earlier this month which revealed that the government had launched a new AtW cost-cutting drive, aimed at making it significantly harder for disabled people to secure support.
The cuts come as Labour ministers continue to insist that their Pathways to Work green paper – and its billions of pounds of cuts to disability benefits – is focused on helping disabled people find work and stay in employment.
But the consultation on the green paper, including possible Access to Work reforms, does not close until 30 June.
Thom said: “It’s hard not to feel like they are starting to implement something that they haven’t finished consulting on, which then makes it really hard to take that consultation seriously.”
Thom – who posted a blog about the cuts to her support last week – said the government’s AtW policy made no sense.
She said: “The cuts are preventing people who have been successful from working as disabled people.
“I don’t understand how Keir Starmer can hold the position that they are the party of work while also preventing disabled people working by cutting Access to Work.
“It’s hard not to read it as an attack on disabled people and it just doesn’t make sense.
“The planned cuts would be so destructive to the working lives of disabled people.
“It does feel like it’s ideologically driven, but it’s not an ideology that I recognise.”
But many other disabled people are in the same situation as Thom.
Since posting her blog, she has been contacted by 17 other disabled people who have reported cuts of a similar scale to their own AtW packages, which are affecting their working lives.
Some of them have reported cuts that were even bigger than the ones made to Thom’s package, with cuts of between 45 and 80 per cent, although not all in the last few months.
A similar number of “terrified” disabled people who are waiting for decisions on their AtW packages have also contacted her.
Asked yesterday (Wednesday) what guidelines had been used to justify the cuts to the AtW packages of Jess Thom and other disabled people, and how the cuts aligned with its disability employment strategy, a DWP spokesperson said: “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.
“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 cuts to Thom’s package now threaten the work Touretteshero has been funded to do by Arts Council England as one of its National Portfolio Organisations.
She is due to meet ACE this week to discuss the AtW situation, but ACE has already expressed its concern and support for disabled artists affected by AtW struggles (see separate story).
Thom stressed the importance that AtW had played in her career since her impairments “changed suddenly” 15 years ago.
She said: “I didn’t think that work and a working life was something that I could continue. It felt that everything was falling apart around me.
“Within two weeks, Access to Work had intensified my support and Access to Work was key in showing me that a working life was still possible.
“Everything Touretteshero has achieved in the last 15 years has been built on me having the skilled support funded by Access to Work.
“It’s absolutely that important, and as soon as it stops, I stop.”
She said: “To have worked to grow an organisation like Touretteshero, and then to have to be forced to not do a job that I’m very capable of doing and to have to back out of projects because of a DWP decision made under Keir Starmer’s watch, is just devastating.”
She said she was even more concerned about what the cuts will mean for other working disabled people, and particularly younger disabled people and those with newly-acquired impairments.
Thom said: “It was Access to Work that showed me what good support looked like.
“I had an independent life at work before I had an independent life at home.
“If you want to support young disabled people, you need to invest in Access to Work, you need to broaden it, you need to make sure it is personalised, and you need to make sure it is quick and it is responsive.”
She added: “If Access to Work is not providing [support for disabled people] then either we will lose disabled people from public life, and from creative life, and we will lose disability arts and culture, or that funding will have to be replaced from somewhere and disabled people’s support will have to come from somewhere.”
A note from the editor:
Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations.
Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009.
Thank you for anything you can do to support the work of DNS…
