Often when I write these posts I’m doing it with a wide audience in mind, but this one is slightly different. While everyone’s welcome to read it, it’s particularly aimed at funding bodies, grant administrators and leaders across the arts and cultural sector, and it’s an urgent message.

Disabled artists, leaders and staff are facing an existential threat because Access to Work seems to be being gutted from the inside. For organisations like Touretteshero this is having a huge impact on our planning, development and fundraising, and for the funders themselves, unexpected cuts to access will throw their grant making strategies into chaos.

Before saying more about this, there are a few things you should know for context:

Individual Staff Access Costs – As disabled-led company, most of our staff team have some individual access requirements. For about half of us these go beyond the ‘reasonable adjustments’ all employers are expected to make under UK law. For example, I need a support worker with me 24 hours a day, including while I’m at work. Other access costs include accessible transport or the specialist equipment someone might need to do their job. Individual access costs are specific to a person’s impairment, how it impacts them, and what their job is.

Since 1996, Access to Work (AtW) has funded the practical support that working disabled people in the UK need to do our jobs. It helps ensure that disabled people don’t cost companies more to employ than our non-disabled peers. From 2015 the maximum amount any individual can get has been capped at twice the average national wage. This cap impacts those of us with more specialised support requirements.

Organisational Access Costs – For disabled-led organisations there are additional collective access costs – for example, if several staff are wheelchair users, we need larger office space than other organisations of a similar size. Costs like this can be harder to explain and are not covered by AtW.

We have other access costs too, ones that relate to making our work and programmes accessible to our communities, but for this post I’m focusing on staff access.

Without AtW the art we create and the services we provide would be much more expensive than equivalent non-disabled-led organisations. I’m certain that the existence of AtW is a big reason why the UK has enjoyed a thriving disability arts scene for the time that is has.

While being disabled-led increases costs it also brings many benefits and opportunities. It means we’re part of the communities we work with, have deep knowledge and understanding of disability culture and practice, and recognise disability as a generative force that leads to innovative new ways of making, doing and being. This is also reflected in the increasing focus of many funding bodies on disabled leadership.

What’s Happening Now

Over the last few years there have been increasing issues with AtW, including long delays for new applications (which are currently taking 9-12 months), lack of flexibility with grants, and huge cuts to support. Last year my support was cut, out of the blue, by 61%, forcing me to stop working for three months, with serious personal and organisational impacts.

Eventually my support was reinstated but only for nine months, which means I have to renew it again in April – a long, exhausting and intrusive process. I’m not alone – data from Decode shows that in 2024-25, 89.5% of grant renewals were cut. This is causing huge disruption to working disabled people and the organisations we run or work for.

We know that the government is reforming AtW, but what we don’t know is what this will look like in practice or what the timeline is. For the last 15 years I’ve known exactly how to budget for access costs, but how do I do this in the current context? This uncertainty is impacting our planning, development and fundraising.

This is particularly relevant to multi-year bids – do I budget for all our staff access costs, making us appear much more costly to fund? Or do we budget as usual and risk not being able to deliver activity because we don’t have the access support if it gets cut?

In order to safeguard disability culture, thinking and leadership, we need funding bodies to urgently engage with these issues. We need understanding and guidance on how to budget and plan for access when the future of AtW is so uncertain.

I’ve written this post specifically for funders because so far the only people I’ve heard talking about it are disabled, and because some grant making bodies we’ve reached out to haven’t been aware of the situation at all.

If you’re committed to vibrant, inclusive communities and to supporting disabled-led organisations, you need to engage with this issue now or risk undoing decades of knowledge, skill and investment.

To find out more about what’s happening with AtW, check out this podcast and follow coverage from the Disability News Service. If you’re a funder and would like to discuss this with us further please get in touch.