Disability and...Access to Work with Jess Thom

Transcription note: Jess’s vocal tics will be noted in square brackets.

Intro
Welcome to the Disability and... podcast bringing together thoughtful discussion and debate. This month, we've a slightly longer podcast than usual, choreographer and artistic director of Cathy Waller Company, Cathy Waller chats with writer, artist and activist Jess Thom about her recent experience of claiming Access to Work. Cathy Waller Company works in partnership with disability arts online to deliver Decode, which is a vital service helping disabled creatives to navigate the Access to Work application process. This podcast contains strong language and references of a sexual nature from the outset.

Cathy Waller
Hello, and welcome to this month's episode of the Disability and... podcast [It’s about Viagra in 1994] Thank you, Jess, that is a great introduction. I'm with the lovely Jess Thom today, [Fuck it] and I'm Cathy Waller, and we're going to be chatting about Access to Work. So firstly, let me introduce you to Jess and Touretteshero. [Fuck] Founded in 2010 Touretteshero is a disabled-led multi award winning arts organisation. Their mission is to create a more inclusive and socially just society through their cultural practice, [Fuck] they help identify and remove barriers [hedgehog] that exclude disabled people wherever they occur. [leading website in the UK for goat sex] Since taking their debut show Backstage in Biscuitland [hedgehog] to Edinburgh [biscuit] Fringe in 2014 they've gained extensive global touring [biscuit] experience. Co-founder, Jess Thom [fuck it] who's with us today, who has Tourette's is a powerful and persuasive [Sausage] campaigner [No I don’t] for greater inclusion, [I've got a donkey in my anus.] Touretteshero make thought provoking, joyful work that [biscuits] inspires change within the arts sector and beyond, offering dynamic research, training and consultancy [sausage] their creative output. Jess is a writer, artist and activist. Jess Thom co-founded Touretteshero in 2010 as a creative response to her experience of living with Tourette's Syndrome. Jess campaigns [fuck] for disability rights and social justice and is on a mission to change the world one tic at a time. A multi award winning, BAFTA nominated performer, [fuck] Jess has toured the world with sell out stage shows, stand up comedy, keynote speeches and public appearances. Touretteshero is a proudly disabled-led organisation with an established reputation for creatively and making change across sectors. [sectors] Jess frequently contributes to academic papers, interviews and podcasts to remove barriers to push for greater equality. So what is Access to work? Access to Work is a resource that helps to create a more accessible work environment [glorious]. It provides grants to remove barriers that disabled people face in undertaking paid employment. Access to Work, provides support beyond a reasonable adjustment,[hedgehog] and currently provides things like travel support, support and equipment and a range of support workers like communication support and BSL interpreters.
[Stephen Tim's fiddling in the Lido, though]
So Jess,


Jess Thom
Yes, hi. Welcome to a bee, beehive, in North London. We're not in North London and we're not in a beehive.

Cathy Waller
We're in Peckham. [Peckham motherfuckers], which is lovely. So I have a first question for you, yeah, and that is [hedgehog], how has Access to Work supported you over the years? [biscuit, hedgehog] So maybe not thinking about now, yeah, but in the past years, how has it supported you?

Jess Thom
[Biscuit] So I have used Access to Work since 2010, so 15 years, [biscuit] and I was introduced Access to Work by other disabled people [Biscuit] at a point when I'd moved jobs, my tics were changing and having a bigger impact on my life, all aspects of my life, including my work [Biscuit] and I was running children's projects in South London, I had Access to Work support for a little bit, and then my tics really increased and my support requirements increased. And at that point, I wasn't sure that working was going was still an option for me, and certainly working in that the job that I loved, [biscuit] Access to Work like rescued me from my own preconceptions. And very quickly, within weeks, had increased the package of support, had organised equipment and with Access to Work was key, really, for challenging my own assumptions about what was still possible for me and demonstrating how with the right support, I was able to still do a job I loved and make a really positive contribution. And from that point on, Access to Work has been absolutely key to everything I've done within my career, whether that is the work I do with young people or with starting Touretteshero, [biscuit fuck] to touring, going to Sydney, whether that's Sydney Opera House or Scarborough, the Access to Work has facilitated my career with practical support. I need support all the time, so I have someone with me all the time, because my tics can sell suddenly intensify. I have a lot of oppositional tics, which is involuntary movements or actions that involve doing the opposite of what I would want to do in any situation that can be quite dangerous. So skilled support is important. It's essential for facilitating every part of my life [biscuit], but Access to Work has been key to helping me not only keep working, but for my career to develop, for me to be able to move jobs and roles, for me to be able to progress and for me to take up opportunities that I could never have dreamed were possible. The principle of Access to Work is absolutely glorious, and when I've been traveling internationally, it's often the thing the other disabled people in other parts of the world want to talk to me about, because it is so progressive, and it's key because it is, it is bespoke to both your job role [biscuit] and to your individual impairment and requirements and that that can when that's working well, that can follow you through different parts of your job and life.

Cathy Waller
That's interesting, because I was doing some work in Europe recently and talking with different artists around access and inclusion within the arts sector. And yes, the UK seems to be very much leading in the access support that we can currently get for people across sector, whether you're in the arts or whether you're in tech or finance or social care, whatever it might be. What have the challenges been before this year, which we'll talk about in a bit, with Access to Work, like in terms of that system running? Since you said 15 years, 15 years to work. [Fuck], what are some of the challenges that you've seen in that time?

Jess Thom
Historically, the biggest criticism [biscuit] of Access to Work used to be that not enough disabled people knew about it. I had been struggling in my workplaces for a long time before another disabled person recognised that and said, Access to Work exists and you should apply for it, and I couldn't quite believe it when I first sort of found out about it, and what, what that what that made possible. So at that point, from when I first started using it, I had a named case manager who knew me. I didn't have to repeat myself over and over again. [biscuit] During the previous Conservative government's 14 years of austerity, while Access to Work was superficially left alone for large chunks of that, several things did happen that were that did change its effectiveness. So the first thing I really remember noticing, they kept talking about it as a discretionary grant in a way that they hadn't previously, which definitely made it feel more precarious and more about you should be grateful for this. And there was that those played into that, the sort of charity model ideas. So that was the first thing I remember noticing. They sacked all of the original advisors, and sort of changed how it operated internally. None of that was sort of publicly announced, because it was all about operational delivery and tweaking how it operated. It tweaking massively how it operated inside, massively overhauling. And so it went to a more. It went to the more like the model is now, where it goes through a call centre and you can't speak directly to advisors quickly. And then there was quite a lot of changing the rules and what was required without telling you so that you would suddenly, suddenly, things would change, and claims that were had been paid would then not be paid, and you would have to try and work out, guess what they now. You know so that, and all of that feels relevant, because some of that feels like that is also being repeated again now and then the big, the big public change that happened in 2015 that had that directly impacted my support was that the Conservative government introduced a cap on Access to Work. So it was capped at the amount an individual could get per year. Was capped at one and a half times the average national salary. [biscuit]. It's worth mentioning that you know that is still lower than sort of MPs expenses at the time or anything like that. And obviously that isn't money that disabled people can use for their own benefit. It sort of pays for support. And often that is about employing people. So it is about the sort of wider workforce, which I think is often missed the cap on Access to Work, particularly impacted people with higher support requirements, or people with types of really skilled support that is likely to be more expensive. So for example, BSL users were really impacted by that, because that is a really skilled translation role. Or if, particularly if you need support that relates to a very like scientific language or, If you, like me, have quite complex requirements and need someone with you all the time, but also have quite a role that is quite demanding and requires lots of sort of international travel. So from 2015 I was capped, and what that meant was that my support, rather than being on a three year award, was renewed annually. And that has up until now that has been, you know, my awards have been renewed fairly consistently. That was always stressful. It was always about repeating the same information over and over again. It always felt like a like a waste of time, and always felt stressful. But I didn't feel anxious about whether that was going to continue until this year.

Cathy Waller
Yes, [fuck] and that's really interesting, because I also have Access to Work. And what you were talking about with this thing, or idea of its, you know, the UK's best kept secret, and people didn't know about it when I first became disabled in 2012 I think I rang up when I did Access to Work twice on two separate occasions to ask if I was eligible for the grant. And both those times they said no, because they told me that the eligibility criteria was about three times higher than it actually, factually was, and they both told me different figures, which, after the second call, obviously made me look into it further and go, hold on. Why are they saying two different things? [Fuck] but yes, I think the fact that just not many people have historically known about it is a thing within itself. And yes, we all know people that have had that work in the past or now that the operational delivery of Access to Work can be a nightmare for its customers. So with that, I think we should talk about what happened when you renewed your grant this year.

Jess Thom
Yeah, and I think, I think it's for me, it's also really important to separate out [biscuit] the principle of Access to Work which is tailored support for disabled people that goes beyond reasonable adjustments so it doesn't cost extra to employ us that we're not reliant on the benevolence of or employers. What happens in lots of parts of the world is that employers are responsible for accommodations, but what that means is that either it's very hard to ask for them, it's hard to move, it's easier to sort of feel restricted in your options, rather than knowing that that theoretically can travel with you. And

Cathy Waller
And it's probably good to say that that is a fundamental, the fundamental, brilliant thing about Access to Work, on lots of levels, is that it means that disabled people can work, those disabled people who need access support. It means that we are creating more equity in society and in the workspace because disabled people will be able to do that job, they just might require some additional support.

Jess Thom
And it promotes innovation because, firstly, because it allows, it supports freelancers and self-employed people, equally to people who are in, who are in, employed and paid through PAYE. So it allows disabled people to create spaces, systems, companies, ways of doing things that work for them. Also because it's not like a sort of clinical list of equipment that has been pre-approved, which is often and where there is specific eligibility for specific types of equipment, which is often what happens in NHS services, for example, wheelchair services, it means that you can access much greater range of equipment and develop ways of doing things, many of which will then will actually be cheaper than maybe the sort of medical prescribed way of doing things. But it allows for autonomy and control within workplaces that is really powerful. What has happened is that the sort of management of it, understanding of it politically, and the way it is being delivered is chaotic. It's been chaotic for quite a long time, and it feels like it's hard not to feel like it's being sort of run into the ground, and then the whole principle of it be it is being rubbished, rather than understanding that the principle is great, the delivery, the current delivery model is the problem. If we want to look for the future of Access to Work, in my view, we should look to its past. We should look to the roots of it. We should look at what has worked really effectively, and we should invest in it, because what it does is generating, like, generate income, generate work, change lives.

Cathy Waller
Yes, absolutely correct. I think, unfortunately we don't have the data, yeah, or I personally haven't seen the data published. That really proves the economical value of Access to Work. But we know, Decode knows, from working with 1000s of people what that economic value is. Because not only are disabled people working and able to work more, therefore earn more money and pay more taxes, but they're also employing other people, and like Touretteshero, you are a company, you employ teams of people which would not exist if you weren't yeah, here working accessibly the way you can.

Jess Thom
Yeah. The thing about the data that's interesting, or feel like that I’m curious about, is it feels like that data doesn't exist, not because it couldn't exist, but because of a lack of will to find it, because I think the data on Access to Work would show that when it's working well, it is a very effective way of supporting disabled people to live fulfilling, autonomous lives and do really broad range of jobs. [biscuit hedgehog fuck], the thing that is really sad and that I find really difficult at the moment is, is knowing that if a younger disabled person experienced what I did 15 years ago, Access to Work would not step in in the same way it did for me, they would not have the same experience I had support within two or three weeks. Now, the waiting time is sort of eight to 12 months, and the idea that the sort of rhetoric, the constant rhetoric around disability and employment, and there are loads of people, loads of disabled people, who aren't able to work, and they deserve to be supported fully and completely, too, but the rhetoric about getting disabled people into work And the reality of the systems that exist don't match up. And to talk about wanting to support disabled people into work when disabled people you get a job tomorrow and you have to wait 12 months for support to be in place, it's ludicrous. And for me, running a company, I'm the director of a company. We're funded by Arts Council England and loads of other and loads of other funders. We generate income. We work nationally and internationally. I work in an industry that looks at least 18 months ahead in its planning. My support is a year at a time, and so it's really hard to build any sort of stability or consistency or sustainable working life with that precariousness. And it's not just about my work, because if I can't work that acts that impacts every area of my life, impact, if I lose this Access to Work Support, then I have to go back to NHS or social care, if that, if my support becomes more expensive because I don't have Access to Work support, I risk being asked or forced to consider residential care that can disconnect me from my home, from my family. Very quickly, disabled people's choices and autonomy are cut and assets are stripped away by choices made by people who don't understand those systems and don't understand the barriers that we [biscuit] experience in the world and in the particularly in the workplace and I you know, just disability, disability arts and culture has thrived in a large part because of Access to Work. And I think that there is just a fundamental lack of understanding about how glorious it could be, and the story that should be being told is about investing in that and extending that and opening that up to more people, rather than this idea that cutting those resources, limiting that, restricting it, making it less tailored, all of that will just make it in a much less effective, and in my view, will be a waste of money.

Cathy Waller
Yes, I agree, [fuck], and I think [hedgehog], it always comes down to and by always, I mean in the last sort of six months, because I've been working with DWP, looking at this reform, what I my brains doing now is going if, even if we put equality, which is wild for me to say this, even if we put equality to one side, even if we put thriving careers, people have one life, and how should we treat those people in society? Let's put all that to one side, the economic benefit of what you just said. So if you don't have Access to Work and couldn't work, you would need more money from the government for care. You wouldn't be paying taxes, you wouldn't be paying National Insurance. It would cost more on the system for you to do that than it would surely to get Access to Work and then you can work.

Jess Thom
And this isn't just about disabled people's lives. It's also about the lives and careers of the people who support us, our support workers, our job aides, our the BSL interpreters and communication support. It's about like the sort of providers who do provide equipment, all of the sort of infrastructure. Around that is totally unrecognised. And while, while the government is prepared to sort of step in and bail out other like high profile industries, there is the talk, the discussion around Access to Work always talks about, fundamentally about disabled people as the communers of resources as the cost, not about the fact that this is this is about jobs. This is about workforce. This is about the work that disabled and non-disabled people are doing together to build more inclusive world and to shape a future for our communities. And I think that that that is absent from all of the conversation to talk about what happened for me this year with my renewal was that I went through that normal when I went through the normal renewal process, I had, I had applied, I put in for the renewal process because I'd had been told it had to go, it has to go through a full application each time I had put in that sort of 10 or 11 months before, because I knew About the wait times, given that my support is only a year, the idea that I almost immediately felt like I had to put in for the next year.

Cathy Waller
Let's pause there, because I worry about this, because you don't have to

Jess Thom
You don't have to do it. I know that now.

Cathy Waller
Yes, okay, so great. So let's pick that back up. So if you wouldn't mind repeating that, yeah, because it's a good example of how, yeah. How did you not like? You should have known like they should have communicated that.

Jess Thom
Well, they told me repeatedly that if I so, so my support, I'm on a capped award. And the thing about a capped award is that it's for, it's only a year, but also it's almost an acknowledgement that they're not going to meet any of all of your access costs. And so when that was introduced, the idea was that it would work a bit like personal budgets, that you would have more autonomy about how that was used. You could prioritize the types of support that were the most important. In reality, that doesn't work because there's no system for managing capped awards. And the if I want to do an in year change. So at some point last year, during mid award, my wheelchair wheels broke. I was told that I couldn't do a change of circumstances for it, or that a change of circumstances was going to take the same amount of time as a full application, and I didn't need any more money. I just needed someone to say it was okay to use a bit of the money from the taxi budget to cover the new wheelchair wheels. There's no point in me having taxis if I can't get to the cab because my wheelchair is not working, doesn't have any wheels on it. It's a fairly fundamental thing. I have to wait 10 months for them to agree that change

Cathy Waller
and your award's only for a year.

Jess Thom
My award is only for a year. And this has been a part of an increasing pattern. So those lengths of time have been getting longer and longer over the last sort of four or five years, and their approach seems to be rather than, like, trying to deal with issues as they come up quickly. Everybody needs to get in the queue, even if what you're actually asking for is something that would take five seconds for someone to logically be like, Yeah, that's fine. I had been told that for renewals that I needed to do, that needed to be a full new application, and therefore I had to be in the queue. That isn't correct. I now know that that's not correct, but I had been told that, and had been doing that for several years. Nobody at any point had told me that there was a renewal email that you could contact, that there was a separate process for renewals, and I had had that conversation countless times with Access to Work and with the complaints team, so nobody had told me that, and there were multiple opportunities to draw that to our attention.

Cathy Waller
Yes, because the normal renewal route, at the moment, it has been for quite some time now, is that you either call Access to Work to tell them you want to renew and they start that process, or you initiate it online, because there's a short form you fill out, and a case manager gets back to you. And you can do that up to 12 weeks before the end of your grant. And at the moment, in October 2025 it's quite a quick process. Case managers are getting back to people very quickly. [Fuck] That's absolutely not the information you had no so you obviously put your renewal request in 11 months, yes before?

Jess Thom
And then we had to chase it up through the complaints team, which it's also worth acknowledging that the complaint email has this week, October 2025, or in the last two weeks, has been stopped that had increasingly become the only way that I could move anything forward with Access to Work. Was making complaints Yeah, because the sort of answers that you would get at every other point was where it would just, it was just a block and they were wrong and they and the information is always inconsistent, and it's inconsistent because the people who are operating, who you speak to in the call centre, don't like fundamentally, are don't have a detailed understanding of Access to Work, and aren't or not a rooted understanding of it, no, in the way that I had experienced historically.

Cathy Waller
I do agree with that, because of the fact that, you know, I speak to multiple, multiple people all the time, and it's an array of information. I also think there must just be something happening with the operational delivery team. Where the dissemination of information is so trickled down that must be one of the reasons why so many people have different things to say, like fundamental, big things to say about access work, which are just incorrect or different from the next person you might call. Yeah, so you put in your renewal request, you finally got a case manager to talk about your renewal.

Jess Thom
We only got a case manager because we'd complained. So even to get a case manager in time for before it when, you know, in the last weeks before it was due to expire, we had to go through a complaints process. But yeah, I got a case manager allocated, and we started that renewal process. We provided all of the information in the same way [biscuit], fundamentally, nothing about my support was changing. We weren't really asking for any significant changes. The only slight change was a sort of annual increase in slight annual increase in pay for my support worker, in line with inflation. Other than that, everything was the same, and that has been pretty much the same as it has been for 15 years, I was asked to do a Support Worker Record of Tasks form, which I've done before, which I have been doing since, I think around 2017 I've done them periodically. I have job aide support as well as support worker support and I learned about the difference between job aide and support workers through being involved with the [biscuit] Disability Arts Online Access to Work Guide in 2019. Up until that point, I've never didn't know about job aides.

Cathy Waller
And that's wild that no one has explained that to you since you've had a grant. So I think it might be good to explain very quickly what the difference between those two things are. So the language has changed over the years, but the moment the wording and the policy Access to Work policy is a job aide or a job aide enabler. Now a job aide is someone that replaces you for a small amount of time, yeah, because the barriers to you doing that job task within your role are too high. Someone needs to do it, that is capped at 20% of your working hours. A job aide enabler often called a support worker. A job aide enabler is someone who enables you to complete a task. So you're directing them, you're supervising them, they're supporting you, so you ultimately finish the task at hand, and that is up to 100% of your working hours, that is the fundamental difference, which is outlined in their policy.

Jess Thom
So as an example of how that works, in my case, for example, I need, because of my pain and energy levels have changed. I can't lead on fundraising in the way that I did. I can't operate portals. I can't respond to the timeline. So I need my the job aide support I need is a specialist job aide, who has the specialist skills to be able to support me through to lead on fundraising and to write elements of fundraising bids that I then check they do that work. I check it that gets submitted, whereas my support worker, I dictate emails to them because I can't, I can't physically control my arms because of involuntary movements, and so they're like, but all the content is coming from me. I'm doing the work and they're just doing the typing.

Cathy Waller
Yes, that's a really good example of those two. Yeah. So you fill in the support worker record of tasks, which essentially is just a document that outlines exactly what your support workers will be doing for you, and then what happens?

Jess Thom
Yes, and I filled it in in the same way that I've always done, which and there's no explanation on the form or anywhere online about how to fill that in, so I filled it in in the way that I always done, putting the things that I can do, like coming up with the content of emails, developing creative work, and then the things that my support worker does, help me move around in my wheelchair, help manage intensifications of my tics. We put all of that information in. I'm always supported by our executive director for the last few years, who helps me do that phone call because and helps be because of pain, energy, memory, it's and because of how stressful I find that sort of renewal process, I always have support with that. So we did the call, got all of the information in my sort of annual award expired on the 24th of April. We hadn't heard the thing. My colleague and I chased that, and I kept asking if there was a decision, because I'm now it's like, have no award in place, no idea who's what's covering that support. We have never, we've come close in previous years to the award date, but it's always been like the last two years, within 24 it's been within 24 hours of the end of my award, but it has been agreed in time. This is the first time it has actually gone over, and we've been left in this position where we don't know what. We have no awards support in place, no support in place, no agreement in place. We kept chasing, and on the 29th of April, we were told that decision hadn't been made because it's a capped award, it has to go to a sort of different panel that I started to get anxious because I saw leaked changes, about things that were changing in Access to Work, operational, delivery changes was the term that I saw in the in those leaks, and that alarms me, because I remembered what had happened. And in 2012 to 2014/2015 where there were lots of operational delivery changes that fundamentally changed how Access to Work functions and its responsiveness. So I was anxious about that. But still, I was like, Well, you know, hopefully this will so we kept pushing the changes, the leaked changes, were due to come in on the sixth of May. On the seventh of May, we got an email saying that my support had been approved. And initially I was like, phew, great. And then I looked at the detail of that, and because they didn't spell it out, they didn't that. There was no acknowledgement of the cut that that represented, but it was a 61% cut in award, big elements of what I'd asked for were completely ignored. It wasn't like other sort of government schemes, where they give you a sort of detailed breakdown of why certain things they had just been ignored. And my first response, my initial feeling, was, like, this is just too hard. I was like, I give up, I absolutely give up. I felt I felt devastated, and I sobbed and I sobbed because I knew that this was going to represent a battle and a fight, and all of the sort of plans and hope that had been put into that year was fundamentally probably about to unravel. And there was still a tiny part of me that I was like, It's 50% deliberate, 50% incompetence. At that point, I was like, there's still a tiny chance that they've just not understood, that this had this advisor hasn't understood and has made a mistake. So we went back. We were like, this is this is devastating. Like, can you explain? And so there were several changes that were really worrying. They were worrying because of how, particularly because of how they tallied with some of the leaks. So, for example, one thing that they had had said was that they were proposing a support worker rate of pay, inclusive of all on costs that was much less than we previously paid anyone, much less than the sort of minimum that our company pays as a London living wage employer, but also after on costs, was less than minimum wage. And so it's like the government has just raised the national minimum wage, but their own department, the DWP, is now is proposing a support worker, rate of pay that they're telling us is all inclusive. We'd particularly ask them, does this include all the on costs, national insurance, pension, all of the cost of employing someone? And they were like, that's an all that's all inclusive cost. And they were like, that, we've, you know, we've worked that out by looking at similar tasks online. Like, I don't think where I had been, where I was based in the country, I don't think the type of support, any, I don't think any of those things had been considered. And essentially, I think that that was a standard, that that had been an instruction of some kind, because it felt, it felt too it was like, not what we'd asked for, and it was like, but, but also it was unworkable for us. We can't pay less than minimum wage. Yeah, and the there was also a line within the letter that seemed to suggest that if you claimed against any of the award that you were essentially agreeing to it. I don't think that that is straightforwardly a legal position that they can impose, but it definitely caused huge anxiety, made it like, I just felt, we felt so at sea, and there was a period where we just did, like, it's really hard to know what to do, because it's like, fundamentally, this just makes without support, I can't work. I don't agree with this award its unworkable. It doesn't make sense. We're not getting any clear explanation. We're just being told, if you're not happy with it, do a reconsideration.

Cathy Waller
So you're essentially in a position where you run a company with multiple people you employ on multiple projects with nearly a million pound turnover around that and now, within that day, you're like, Yeah, cool. How on earth does that continue?

Jess Thom
Yeah, and a million pound turnover that comes, that comes from grant funding, that comes from, you know, some earned income that we the income that we make disabled led organisations and disabled people shouldn't cost more to employ. I need that support because, partly because of barriers in the world, and partly because of how the world and workplaces have been shaped. And if you want inclusive environments, you need to, we need to address the systemic barriers that disabled people experience.

Cathy Waller
But also Touretteshero, [fuck] have, well, I would have, or I know, but I know have put in multiple reasonable adjustments which is a legal requirement. And I think that especially not all arts organisations, but certainly a lot of arts organisations are more likely to be putting in better reasonable adjustments, or reasonable adjustments beyond a reasonable adjustments, because. Of the sector we are, yes, there's obviously huge issues, but if we compare it with other sectors, yeah, we have we do it well, yeah, better. Well, we do it better. I would say so. Touretteshero has obviously put in these, all these adjustments, which is, would be maybe arguing a court of law are beyond reason.

Jess Thom
Oh, they're beyond reason. They are beyond reasonable adjustments that we're a politicised, disabled, led organisation. We care about change, like changing ways of doing and being and working so that they so that they're more fundamentally barrier free, and so we loads of the adjustments that are made, for me, go way beyond exactly what you would expect to be considered a reasonable adjustment.

Cathy Waller
So your renewal, so after the initial, you know horror of that, we know because you’ve spoken publicly about it and getting your Access to Work back, how did that happen?

Jess Thom
So, so we were totally at sea. I think the thing that made that really difficult was, firstly, they had back dated the award. They had back dated the awards, the date of the letter to when my last award ended, even the 24th of April, even though we had only been notified it on the seventh of May. That matters, because you have four weeks to appeal the decision, and so we effectively had two. We initially thought that all we needed to say was that we disagreed with it. It was only in speaking to Decode and to you [biscuit] that we were like, Oh no, you have to get everything in which hadn't been explained to us. There was such a lack of information and a really sort of lack of resources in terms of how to go about challenging those decisions. It was other disabled people who pointed me towards Decode, other disabled artists who'd been in the same situation in the previous months. And so with your support, we wrote and submitted the reconsideration. Touretteshero has several other members of staff who were in the queue for Access to Work Support whose support costs we are already meeting in the interim. The level of my support was such that, and because there was no timeframe for how long that process could take. And you know, there were people at that point who'd been waiting six or seven months for their reconsiderations to be resolved that it wasn't financially safe. It was too much of a financial risk for Touretteshero to hold my support costs for that time, and so I had to stop working. So I had to stop doing a job. Everything that I was working on had to stop. We were lucky in some ways about the timing of that, that we weren't because of sort of health stuff and the pattern of work. We weren't in the middle of a touring or a major project. So it was not as disruptive as it might have been at other points, but it was still hugely disruptive to me and to the entire team and to my support workers and job aide, who also had to stop working, and I had to find 45 hours of support a week, informally from friends and family. And so I went from being a working, autonomous disabled person to having to negotiate with my family and friends for scraps of support and and I that I have not felt as disabled in a long time as I did in some of those in some of those moments. And it's interesting thinking back to when I first because it used to be absolutely the other way around, Access to Work, support. It was Access to Work that showed me what support could look like. And I was receiving support at work initially that I wasn't getting at home, and so, you know, there was a whole period where I couldn't take leave from work because I didn't have support at home to then be able to do anything. So Access to Work helped me understand my support requirements and what I needed in the world, and my expectations for my broader life. So to then not be able to do a job I cared about not being able to support other disabled people, not being able to lead a company. We'd had all of these plans for the year ahead. And I, you know, we're, we're a publicly fund, you know, publicly funded organisation and we weren't able to deliver on our aims for one, for the Department of Culture, Media and Sport, because of the decisions of the Department for Work and Pensions,

Cathy Waller
Yes, and if it happened to be in a period where you were in project, you had to perform, you have to facilitate and deliver. You know, the consequence of that is a lot of money and a lot of clients. You know, if you were in a profit driven commercial company, that the financial impact would have been much larger.

Jess Thom
I mean, it has still been huge. We have lost we, you know, in June alone, you know, 200 odd hours of companies time were used.

Cathy Waller
That's 1000s of pounds.

Jess Thom
Challenging that and trying to get to grips with that decision. We have lost what income and lost projects. Several major projects have had to stop with huge partners and new partners and the sort of wider team capacity we were our create we had to pause our entire creative program because as a co I'm one of two co artistic directors, I wasn't able to do my job. The other co artistic director was providing lots of support to me, and so ultimately, how we managed that was that we paused the creative program and allowed every other and so that part of that was so that every other aspect of Touretteheros work could carry on as best as possible, and then having to speak publicly in a way that was essentially begging for my job and felt deeply humiliating, and it felt important to speak publicly because I knew that I wasn't alone. And within, you know, within 48 hours of speaking publicly, we'd had 20 or 30 other people in exactly the same situations, and many others who were deeply worried about what was happening with their support too. And it was interesting, we had lots of partners, like, we work with really high profile, lots of really high profile organisations, and lots of people reached out to us, being like, Oh, can we, you know, can we write a statement of support and talk? And there was a lot of stuff around, you know, lovely stuff around Touretteshero’s work and why that matters. But it also, I felt really conflicted with that, because it's like, I shouldn't have to justify my value to have the support I need to do my job. I should, I shouldn't have to be able to draw on high profile partners. I should be at, you know, if I was a, you know, a teacher in a school or, well, like, you shouldn't have to be well connected and be able to sort of have the ear of like, no people who have the ear of ministers or can, who can, who can weigh in in your corner. That is not an equal system.

Cathy Waller
Yes, that's really important. Because what we've seen in Decode is that if you are high profile in your job, or you have a public presence, and you have access to go to the press, because that will be a juicy enough story, essentially, for the press to pick up. In our experience, you are much more likely to hear back from Access to Work extraordinarily quickly and to get the decision overturned, or to get the decision much more in line with the current policy. Yeah, and that was a horrific situation for you, personally and professionally, to be in. And it begs the question, What is everyone else doing without that position? Because we work with hundreds, hundreds of people who have been in exactly the same position of you as you, [fuck], who have had their grants reduced and slashed. And I think the really important thing to say about this is there is no public policy or information about the reductions. And secondly, there is, I am really not seeing across the board mitigations for those decisions. I'm seeing bartering on hours, on support work hours, which is done instantly with no thought. So you say, I need 20 hours. They go, have eight, have seven, have nine. The mitigations we're seeing when they are written down do not make sense. You know, I could show it to anyone and go, could you just give me a little summary of what you think that means, and there just isn't it there. The occasional answer will make sense, but we're just not seeing mitigations that make sense and are just not to the policy.

Jess Thom
Yeah, it was absolutely like I knew the policy and I'd been receiving support for 15 years. Nothing about my job had changed, nothing about my impairment had changed. Something had to have changed about Access to Work that could have been the only thing once we'd ruled out, this isn't this isn't incompetence. This isn't just a bad set of decisions. This is a systematic slashing of support, targeted slashing of support that is totally not in line with policy and totally not explained, and where there is a denial that that's happening, it's like disabled people, over and over again, are having these experiences, and it felt really gaslighty. It felt like it's like the policy hasn't changed. Must have changed, because what like? Because I know what the policy is, and this isn't in line with it. I know what the rates of pay can be, and this isn't in line with it. I know. I know the types of support, this isn't in line with it. You haven't, you've just ignored certain requests. None of it made sense, and it was, I think it's also worth acknowledging [biscuit] that that was happening at the same time as the government was making loads of other policy changes, trying to make loads of other policy changes that related to other areas of disability support, so particularly Personal Independence Payment, the cut to the health rate cost element of Universal Credit, cuts to SEND education and so all of those things were happening simultaneously, which did make it really hard for the I think the press stories around it were quite confused, because it was all happening at the same time. And it's hard not to feel that I was strategic, and it was hard not to experience that as an attack on disabled people and disability culture. Why, I think at that time, it felt really important to me to speak about Access to Work. Specifically, was because it what was happening with me, and Access to Work also gave rise to the lie about what was happening with PIP, because Personal Independence Payments, which means the extra cost to self of being a disabled person, let's get in an often non accessible world, the sort of living costs outside of your working life. They were proposing huge slashes to that, huge changes in eligibility criteria. And they were saying that that was all going to be fine because they were going to disable people will be supported into work. The first thing to say is those extra costs don't change whether in your work, whether you're in work or not, anyway, and PIP is not an out of work benefit [biscuit], but it felt, it felt really important that at a time when the government said, we're saying we're going to support disabled people into work, there were 60,000 disabled people waiting for support to work and waiting for months and months, and those when they were getting to the front of the Access to Work queue and having assessments, their support was being slashed over and over again. And so if you can't support disabled people who are already working, you can't begin to think about how you change that and address the barriers for people who aren't yet in that position. And there was loads of other stuff around disability and age and the idea that somehow, particularly, you know, particularly young people, sort of 18 to sort of 20/22/25 they seem to be going like these. It felt like there was a particular focus on the number of young people with impairments or with health related conditions. And it was like taking support from that group is exactly the opposite of what you want to be doing. My experience with Access to Work shows that if you invest in that moment, if you give support, full support, tailored support, the right support, that's what changed lives. That's what changes lives. That could have been the moment 15 years ago where my life was stuck, ended, stopped in terms of my career and progress, it was Access to Work that showed me there was a way through, and it wasn't an easy way through, but with the right support, it was possible.

Cathy Waller
I don't know why it's so hard for people to remember this Personal Independence Payment and Access to Work, which are two very separate entities and do two very different things. I still feel today that there is an air of disabled people just wanting this money or this these benefits, but it's just so crucial that Access to Work doesn't even go to the disabled person that is for paying other people or for paying for support and equipment and Personal Independence Payment its also good to say that that is not a magical pot of money that gives you 1000s of 1000s of pounds a year. It's just not how it works, and I don't quite understand isn't the right word. I'm still livid about the fact that we still sort of sit in in this society where it's kind of being propped up by our current government. [Fuck] that disabled people are still sort of scrambling and wanting all this money, and there's sort of a full stop after that. No, it's just the right to work equally next to a non-disabled person? Yeah, and there may be not all disabled people, but some disabled people just need some extra support to make that happen.

Jess Thom
And it's about the systematic neglect of other systems that we rely on. It's about failings in social care. It's about failings in the NHS. It's about, you know, grassroots support Access to Work is one of the few things that was holding on and providing some level of equality of opportunity.

Cathy Waller
Yes, and it begs the question, what do Access to Work think happens when that support is reduced, because there hasn't been mass change or investment into society being more accessible for disabled people. We can't just click our fingers, and then there's a huge attitude change across the entire world and country. So it does beg the question, why, why and how have Access to Work been allowed to make these reductions? Yeah, with nothing else in place, because the NHS hasn't been hasn't been overhauled, and suddenly we can access more service and quicker services. The transport system hasn't changed. I mean, Access to Work can't be reduced 50% for you, Jess, and then there's no, where's that 50% coming from, elsewhere? Where's the like, Oh, it's okay, because I can now do this and this and this, because that doesn't exist for you.

Jess Thom
No, and for you know And then for me, it was also, it's like, a fundamental issue of safety. It's like my, you know, that support is withdrawn with no thought about what that then the implications for me in terms of not just like my work and my job, but my practical safety and existence in the world. And I think the other thing that was really interesting to me is at the same moment where I was experiencing all of that renewal stuff I remember reading about, you know, Minister people in their sort of in the sort of in Parliament and the House of Lords, disabled people in the few disabled people in Parliament and the House of Lords who were not also not getting the support they needed to be able to do their jobs. And it's like and the DWP has a terrible track record for making adjustments for working disabled people. So for the government to talk about reasonable adjustments, and it feels like their current magic solution is that somehow, if employers make reasonable adjustments, that somehow that that is going to reduce the need for Access to Work to exist. Access to Work is always about what is beyond reasonable adjustments. What is beyond reasonable also the government's own infrastructure doesn't make those adjustments effectively. How can you lecture other employers about making adjustments when you're not when your own house is not in order?

Cathy Waller
And also, how many disabled people are working within the DWP who are making these decisions or making these offerings of changes to schemes. I mean, I don't know for fact, but from the people I work with, it doesn't feel like there's a huge pool of disabled workers that are supporting those decisions. So wheres the lived experience in that? and I know that they are reaching out, and they've had these recent collaboration committees, but it is not the same as people fundamentally working in the system.

Jess Thom
yeah, but the collaboration committees had no information about how access support would be funded for those committees. For the stuff that I saw, it was no there was no information then about how people were being paid for that time. And I think that there is a huge history and legacy of the assumption [biscuit] the disabled people's expertise and knowledge, that we should give that freely and relentlessly over and over again, just for the sake of trying to make things slightly better. And it's like the truth is, we have huge knowledge within our communities. We have the solutions, to say, like the if you looked at if you really want to create meaningful change and you want to do the things that they were, if this wasn't about just about cuts and resources, if this was really about increasing opportunity, if this was really about thinking about how you support and invest in disabled young People. Disabled people have that knowledge we have, expertise we want, we're not viewed as leaders. I think the imagination for what our jobs are is really is, is really low. I think there's a real lack of imagination, lack of understanding about what our lives look like, lack of understanding about the reality of the barriers we experience. Don't get to keep talking about 2012 and how things have got much better for disabled people because of, because, you know, 15 years ago, however 12 years ago, however long ago, there was a, you know, we did a big event. It's like the reality and the reality now, in my experience for disabled people, is that it is much worse than it was previously, and lots of that is because of austerity, lots of that is because of the undermining of public services, but the idea that a Labor government was attacking disabled people and our and our support and services and viewing us as the problem, rather than listening to us or asking us for solutions, just it felt like just, I felt the stripping away of any hope. I think my hope was quite low, but I it felt desolate, and that feeling of wanting to give up. It's like I have a really established career, I have loads of opportunity within that, and I'm able to advocate for myself and for others in lots of situations. It just felt too hard, and my instinct was to give up, and I knew that if that happened earlier in my career, if that hadn't happened in 2010 and 2011 I would just I would just have dropped I would have dropped out of work, and I would have dropped out of the system. The system, and my every aspect of my life would have been very different as a result.

Cathy Waller
Yeah, and I hear that from multiple people. I think that is multiple people's experiences. So [fuck] it's hard because I want there to be I want to sort of end this podcast on right. Here's all the call to action. This is what we can do. And at the moment, I think there are some things we can do, but it's important to know that what we know is that Access to Work are reforming the scheme. The scheme may well look very different than it looks now. One bone of contention I have is that, yes, we need to reform Access to Work because it doesn't work how it's working now we both know that people that are listening, who've had the experience will know that what I'm worried about is that that reform doesn't come from a place from everything we've spoken about today, no, and that reform is actually not going to benefit disabled people, because obviously we also forget that without supporting disabled people, society doesn't have that experience and is worse for it, and then we know that.

Jess Thom
And the direction of travel, from my reading of what I've seen from the government is that it's going in a in a less tailored, less bespoke way that there was a wild proposition to fund job coaches and interpreters, but not fund support workers, which just why it feels ripe for discrimination cases, because why would you fund communication support but not mobility support? All of that, it all comes from this idea that disabled people are we are perceived as a problem, and Access to Work is perceived as a problem, rather than understanding that those problems have been created by previous decisions, by lack of investment, by not utilising this like the fundamentally for support to work well, it needs to be responsive to what people require, both their circumstances, their job role, the where they are, within their career and their life. Their lives and their impairments, and

Cathy Waller
it should be celebrated. And it should be celebrated such an amazing achievement.

Jess Thom
The thing is, it is it is it is brought it is glorious. And I can't overstate the difference it's made in my life. And that's really why speaking out about it and fighting for it is something we have to do. It's important to be like it doesn't work at the moment, but it doesn't work at the moment because it has been made not to work and because it is because it is chaotically managed and not disabled led and disabled disability affirming. There is a culture of hostility and suspicion that exists has existed in lots of areas of government, it's rife within Access to Work. And the thing that I would say is that is that there's as well as talking about the problems of Access to Work, it feels important to me to talk about the successes and the differences made we have to protect and hold on to the things that do work, and while they while how it is run, needs to change, reforming it in ways that just that that make it about contractual It's increasingly become about sort of contracts and contracted support, and it's increasingly about it needs to be responsive to disabled people's requirements and not to the agendas of politicians. Yes and it, and it needs, and it needs to continue to support self employed disabled people, freelance disabled people and working disabled people at every stage of their working lives. What advice Cathy would you have for someone navigating Access to Work now? [Fuck]

Cathy Waller
I think the main thing to say is yes, it can be really difficult, and it's not you. You are not the problem in that at the moment, it's just an incredibly difficult system. Yes, some people are going through Access to Work processes and getting exactly what they want, and it's been a kind empathetic process we are just seeing that actually, that is the lesser experience at the moment, but what can you do now? So we have a guide to Access to Work for the arts and culture sector that is a free guide, and it sits on Disability Arts Online's website. There are videos with you Jess in, yay, [Biscuit] there are audio guides, there's easy reads, please have a look at that. And there's also now an update page where we update you with the things that are happening now, like the leaks, like the complaints email stopping, and lots of things like that. So please do have a look at that. I think my main advice, especially if you're renewing your grant, because I know that that is a super anxious time. What can you do? I think some crucial things you can do is, please look at the rates of pay on the Access to Work staff Guide, which is their policy. We've also got it as a resource in our guide. The reason I'm saying to check those rates of pay is because that was a legitimate change by Access to Work in October 2023 I do believe, have a look at what your rates of pay are for your support workers, and have a look at their rates, just so you're prepared that they could be shifted. Yes, there is a policy line in the Access to Work guide that says, if that doesn't work for you, for a mitigating reason, you can give quotes, but it's better to know that those pay rates might change. The second thing I would say is just being really clear for yourself what category your support workers are in that's so important. So we talked earlier about the differences between job aide and job aide enabling support. It's important because if you aren't clear, then Access to Work, in my experience, will try, for the majority, to funnel that into job aide, because it is a capped support that is our experience across the board, unfortunately, because it's capped at 20% because it's kept that certain aspect, certain element of support worker, called a job aide, is capped at 20% I just think the clearer you can be about your support and how that fits in, the better. So please do have a look at the guide, or go back in this podcast to hear what we were saying about it. I'm a strong believer, and also been told multiple times by Access to Work with people higher up in the operational delivery team that you shouldn't always make a complaint if something has gone wrong. However, the complaint email has been stopped. You now have to call them up to complain or write a letter, which I implore people to do. Please try and do that. I know that those two methods are not going to be the most accessible things for everyone. Please do complain if you can, because it's the only way to let them know when things are going wrong

Jess Thom
and where, where are we, If you're writing by post, where are you writing to?

Cathy Waller
You are writing to Access to Work Service Team. I do believe we will have that address on our guide, and perhaps we'll also put it in with some copy on this podcast as well, so people can know and just be really clear in that letter that it is a complaint, capital letters, put that in bold, just so it's really, really easy for them to understand and make sure you tell them what you want from that complaint, like, what are the actions you want them to do? How can they make a resolution?

Jess Thom
And do they have a written complaints policy that people can access.

Cathy Waller
I'm going to say no, I think there isn't a nuanced understanding or publicised document that really shows what that process is. However, it's a public service. You make a complaint, you need an answer. That answer used to come to you within 48 hours, it's now it could take 20 weeks, 25 weeks, but they do need to get back to you if your complaint has not been resolved, if you've made a reconsideration, which is essentially an appeal to get your grant decision changed, you can take a complaint further to ICE, which is the independent case examiner. You can do that through the government website, and that is to hold government departments to account, and it's an independent person examining why the resolution hasn't been what you want and investigating what happened in the complaint that won't change the decision of your grant. Crucially, they say that they don't get involved in that. What they do get involved in in is in the operational delivery it's in was their delivery of the service to you appropriate and in line with their policy. You can do that. It obviously does take a long time to do it, but that is the thing that you can do. You can write to your MP and tell them what's happened. Also to be really realistic with people. It's start to have a little think about what a reduction in your grant looks like for you, and that is a really horrific thing. I hoped when we started decode those words would never come out of my mouth, but I think we're at a stage now where we do need to prepare ourselves for less access. For some people, that's going to mean lots of jobs and loss of income. And for the rest of the people, that's going to just mean struggle again and more struggle, because Access to Work is brilliant. I doubt it. I doubt it takes away all struggle from disabled people, even with a capped grant, because society is still the way society is. It's so hard to feel isolated, worried, stressed, anxious about it. I feel like that about my own grant. I worry for all the people we work with. Just please do check the guide on Disability Arts Online’s website, because when we know something, we put it on there for everyone, and we'll put very clear actions and clear details about what is happening. I know there's loads of loads of chat about Access to Work on LinkedIn and Twitter and Facebook and all the social media things. And I think some of that is really useful, but it can also really scare people. Yeah, so please do check the updates. If something's not on there, it's because we don't have certified information yet, or we are putting it up. I think also with renewing your Access to Work or talking to Access to Work about anything, it's really, I've always said this for years, but it's really come a time now where we need to get things in writing, because I'm seeing more and more often that a case manager on the phone or the call centre will tell you some really important information, and it will just not be correct [fuck]. So please ask for written evidence, whether that's just an email confirming the conversation, so that at least you have something in writing, if that goes wrong,

Jess Thom
And do you need to ask for that as a reasonable adjustment? Or if you just asked for that in writing, should they provide that?

Cathy Waller
I think it can be and should be both of those things. I wouldn't expect a case manager to not know the inconsistency with information. I think it is appropriate for a government department to give you something in writing, over email, if you've discussed something on the phone,

Jess Thom
And if someone is being asked to fill in a support worker record of tasks form. Do you have any advice for someone in that position? Because it feels like they are being used as fundamental evidence to cut or grant support?

Cathy Waller
Yeah, it's really difficult, because Access to Work customers, disabled people, shouldn't have to know the ins and outs of language within a grant system in order to be eligible or get what they need. Unfortunately, there are certain things that Access to Work do pick up on in the support worker record of tasks. However, it's completely dependent on the case manager of what they'll pick up. So for instance, I think that the most important thing on your support worker record of tasks form is to be very, very clear about the tasks that someone is enabling you to complete, like your example, Jess you're dictating someone's typing, or whether it's someone replacing you wholly so actually, instead of you dictating Jess, it's someone going away on their own accord and writing, with instructions, most likely, but to write that email that the words and the contents are coming from that other person, I think that is the number one thing to think about for that form, because If you are unclear, or you mesh them together. Access to Work would, and also should, in terms of their policy, separate those out, and then it might be really wishy washy about how many hours. So please look at the tasks that a support worker is doing for you so that you can finish a task. Which could be things like you instructing them to move equipment around the room. It could be like you're dictating. It could be they are interpreting you, which could be BSL or just communication support. It could be them physically supporting you in space or in the workplace, anything where you are completing the individual tasks, but they are just enabling you to do that, versus someone doing it for you. So I think that's just just to be really, really clear. I think also the adding up of hours is something that you find really confusing, and that everyone finds really confusing, and that if on that form, you are just talking about the hours you do independently, and the hours you support for those hours should add up to your total working hours per week. The only time that is doesn't happen is if you are talking about things like getting from home to work, that's normally additional hours for people in their working week. Yeah. So it's just that the tasks you do independently and the tasks you need support for should add up to your working hours.

Jess Thom
And the information I was given [biscuit] was that that because, because the first part of the form asks what you can do for yourself, so I put all of the things that I can do for myself, but because I always have someone in the room with me, because I always need to have someone with me, Access to Work, said that I should just put that I zero for that and that I should put I need someone with me at all times,

Cathy Waller
yes, and the answer to that is they're not wrong. But also, another case manager would have said, You're right, yeah, because unfortunately, that form particularly isn't clear, yeah. And I've been in multiple situations where people, where we have to say, actually the questions you ask in this form won't give you the actual [fuck] situation here, because it just at that form doesn't work for everyone.

Jess Thom
My advice now, if I was going into that form, even though I've completed that form numerous times before, is that I would ask my Case manager who's reviewing that, how do you want me to fill in this form?

Cathy Waller
Great advice

Jess Thom
Because I think get and get it in writing.

Cathy Waller
Yes, get it in writing. And also, if you get given that form, which lots of people are without any information, it's just fill this in.

Jess Thom
Yes, and they have no information. There's no, I've looked for it. There's no information on their website. There's no there's certainly no accessible information, no easy read guide to how to do it. I mean,

Cathy Waller
Exactly I would ask your case manager questions. Don't feel you need to fill that in without understanding how to fill it in. You know, there's also, unfortunately, no access provision for that. What if you had there's a barrier to you filling it in. Not a lot of that gets talked about. But please do ask your case manager if you have questions about how to fill it in, and they'll answer it.
If you could speak to Stephen Tims, he's the Minister for disabled people who has recently, in the last couple of weeks, thanks to John Pring at Disability News Service, you know, recently said that he actually, actually did know about the leaks, which have now been buried by the government. What would you say to Stephen Timms, if you could ask him a question?

Jess Thom
If I could ask him a question, I would ask him why he is not utilising the knowledge of disabled people effectively, why he is why they have such little faith in our expertise that they don't let us form the solutions ourselves.

Cathy Waller
And if you could say anything to Stephen Timms or send him a message, what would it be?

Jess Thom
Tell me how many jobs are at risk before you make any decision, tell me what this workforce is worth. That wouldn't be the question that I would necessarily want to ask for me, but I think that is the I think that that is a question that speaks to people invested in capitalist systems. I would generally say, even if something isn't working. You have to understand why it's not working before you start faffing with it. They are faffing with it and changing it based, in my view, on assumptions and right wing talking points rather than what is really in the in the best interest of individuals, communities and our country, Access to Work could be world leading.

Cathy Waller
Yeah, absolutely.

Jess Thom
Why I would want Stephen Timms, why are we not shouting about and making it a really world leading system that we can be proud of?

Cathy Waller
And let's, you know, let's Stephen let's get some more data. Let's start doing some more studies. Let's really understand the value of Access to Work, because we know it anecdotally. We know it from other people and other organisations that are collecting the data, like Decode, like the Access to Work Collective, like lots of other disabled led charities, where's the data show us why you need to know why it's so good and why we should celebrate it, and it should be something that the UK is really proud of, I guess, from my experience and from your experience, people that are listening to this might feel empowered and have the energy to do something. What can they do? Is the question that we're always asked. I mean writing, I will say that there has never been a time when so many people have written to their MPs around Access to Work, yeah, and that has been heard and felt in government. So if it's something you feel passionate about, please write to your MP about what is happening, what you know is happening and to help protect it going forward, because we know these reform decisions are being made at the moment, the other thing I would do is, if you are an artist or you work in an organisation or in a funding body, is to really encourage the cultural sector to explore funding models around this, I would be lying if I didn't think there would be some sort of fundamental cut to Access to Work the overall budget going forwards. I think we really need to look into other cultural partnership approaches to funding access for artists and for staff members in arts organisations. So I just think we need to be having these conversations internally, with friends, with family, with staff members, with our bosses, with the people we line manage, with other artists. We need to be talking about the fact that Access to Work currently is not working, and what happens if that is underfunded going forward, and if people just can't access the support going forward, because it is going to fundamentally change the way in which not only the arts and culture sector works, but all working people and companies and whole structure of work within the UK. I believe we will just see less disabled people being employed, less disabled people being able to maintain jobs, and also less disabled people being able to grow in their careers.

Jess Thom
And I also think that's a real risk that what will happen is that that impairments that require less systemic change, it will be less about creating new ways of working, innovating and doing and being in disabled led ways, and it will more be about tokenistic disabled people who can fit into existing structures. And that is damaging for all of us, because it means that we don't imagine new ways of being, and it also means that disabled people in some of those roles will be under supported. My other big concern is that we is about memory, and it's about you how quickly we can lose memory for what support, collective memory for what support has existed in the past. It's like, I think about the Independent Living fund that previously existed and was cut by the Tories in and paused in 2010 and closed in 2015 I think, and it's that is like it, almost like it barely registers now, as nobody remembers it, and I'm worried that something similar will happen to Access to Work. One of the things that helped me not give up, and I think it's so it takes so much energy to fight and battle and to navigate these systems. And sometimes it's like that can feel like, oh God, like, is it worth it? Or particularly, I know I have no choice, in a way, because I can't work at all without support. But I know that there might be other disabled people who'll be like, well, they've given me something, so I'm just going to hold on to this. What I would or disabled people who need support and aren't applying for it because they know it's a nightmare I do for me, reframing utilising these systems and navigating these systems and making sure policy is applied is an act of resistance that is not just about meeting my immediate requirements. It is about our share, about trying to keep making sure that this continues to exist. And for me, reframing that and understanding that as an act of power and a decision that I was taking was really useful, because it is emotionally hard to navigate if you are navigating that system, keep records, record when you've had communication, record when you put in applications. We've had an experience recently with a colleague who's been waiting for sort of 10 months and put, had put in two applications and Access to Work and now saying they have no record of any of their applications and they need to start again. So it's like keep records of everything, and keep records of communication and utilise the expertise of other disabled people. You know, we're really lucky in the arts sector to have support like Decode. It's noticeable that actually lots of other areas that there isn't similar support for people at, you know, for people outside of the creative sector. But there are, there are sort of peer support platforms on social media, on Facebook and things like that, groups that are really useful sources of information, solidarity and advice, and always be thoughtful about how, because the advice people get is very different. The other thing I would say is, if it doesn't make sense question, it be ready to question. Be ready to challenge. Be ready to ask why. The number of times we were told this is how it is, or that you can't have this, and then when we asked why, magically that was suddenly possible.


Cathy Waller
Thank you. Jess, thank you so much. I feel like we could talk about this all day, but we won't, because people will fall asleep or get very angry, yeah, both of which are fine.

Jess Thom
Yeah, I really, I really hope we can. I really hope we get to a position where we can stop talking about the challenges of it and start again talking about the difference that it makes in our lives.

Cathy Waller
And I genuinely hope that Access to Work continues to support us all to work more inclusively. [sausage], lovely, thanks Jess.

Jess Thom
[Stephen Timms has a Veruca]

Outro
Thank you for listening. We do hope you've enjoyed this episode of Disability and... information contained in this podcast can be found at either the Disability Arts Online website, disabilityarts.online, or the DWP government web page at www.gov.uk/dwp, and find the link for disabled people. Further episodes of Disability and… can be found on the Disability Arts Online website.