Last spring, Notes from Below published an inquiry by two former care workers into their experiences of precarious employment in care. One of them, Connor, was previously employed as a freelance support worker through a government scheme called ‘Access to Work’. Launched in the mid-1990s, Access to Work was established to provide funding for workplace accommodations for disabled workers. This could include transportation or specialist equipment costs, or funding to cover the costs of employing support workers. Last year, more than 60,000 people received support through the scheme, with the same number again still waiting on application results. Despite notorious delays and administrative issues, many disabled workers genuinely have come to rely on the scheme for access to work.

In the last year, however, the situation has deteriorated. In February, the Minister for Social Security and Disability, Stephen Timms, announced that rising Access to Work costs were unsustainable and major reforms were incoming. Likely to be guided by the ‘Keep Britain Working’ review, early comments suggest the government will seek to use employers’ existing legal obligations to shift the cost of access requirements from the state onto them. In the meantime, leaks from the DWP have revealed that two waves of cuts have already begun. The first, launched earlier this year, has seen cuts to support packages of up to 70% and restrictions on assistive technology and specialist equipment. A second, billed for the autumn, is expected to remove entire categories of support altogether - including job aides, tech, and equipment. Ironically, at the same time that Labour have publicly committed themselves to pushing more disabled people back into work, they’re cutting the one scheme designed to make the workplace accessible.

We spoke to two workers, Rana and David, at the sharp end of these cuts. They receive funding for support workers through Access to Work and work in ‘co-production’ at Hammersmith and Fulham Council, supporting disabled residents to participate directly in the design and development of local public services.

RRana Aria

DDavid Isaac

Would you like to start by introducing yourselves and your jobs?

RMy name’s Rana Aria, I’m a co-production officer at Hammersmith and Fulham Council. I work primarily on co-producing services with disabled residents to make sure they’re accessible and local disabled people are included in decisions which affect them. I’m also the chair of Hammersmith and Fulham UNISON and I used to be the co-chair of our workplace Disability Equity Network with David before stepping down to take up the branch chair position.

DI’m David Isaac. I am a co-production coordinator at Hammersmith and Fulham. I mainly oversee a co-production team that looks at the council’s digital face. So, I work with residents, both disabled and non-disabled, to make sure that our online service is fully accessible. I’m also the disability officer for our UNISON branch.

What role do your support workers play in your work?

DSo, for me, my support worker helps me get into work, and I have a guide dog, so they look after my dog while I’m working. From a work perspective, they maintain my diary, make sure I have everything I need for meetings, translate documents or whatever I need - which is an awful lot - into accessible formats. It’s really quite an involved, personal job, you know, making sure that I haven’t dribbled my lunch down my shirt. There’re simple things like that, because I can’t see whether I’ve done that. Nowadays meetings take place online on camera and you’ve got no idea - or at least I have no idea - how I look to the person that’s speaking to me. So there’s that element of personal care as well, making sure that I haven’t got food on my face or running down my shirt. That sort of thing. To keep things on a professional level.

RMy support workers help me with a few different tasks: notetaking, palantyping,¹ proofreading, converting documents into Easy Read.² There’s a lot of jargon at the council. Part of what they do is to simplify that for me. The Nothing About Disabled People Without Disabled People report was released in Easy Read, for example. Me and my support worker read through that together, working out how the eight recommendations relate to my job and how I can incorporate them in day-to-day practice. Being deaf also means that I can miss tone or context that makes it hard to understand what people really mean. Especially at the council, there are a lot of egos, a lot of sensitivities, a lot of political context. Debriefing with my support worker then becomes pretty crucial, to say, is it just me or is this what’s really going on?

What are those relationships like? As you said, David, it’s pretty personal.

DMy current support worker is actually my wife,³ but she’s only been doing it for the last year. Before that my support workers were all absolutely - well, I say they were all excellent, but there was a teething period. I didn’t get the right fit straight away, but once I did it was fine. It’s a matter of getting someone to understand the difference between a support worker and a personal assistant, especially if they’ve come from an employment agency which isn’t specialised.⁴ You need them to understand that they’re not there to do the job for you, they’re there to enable you to do your job. The whole point of you being there is that you have something to bring to the role.

Not everyone understands that though, and some of those conversations can be hard. On a personal level people will be lovely, but they’re not there to be lovely, they’re there to help you do your best. With my first support worker I ended up feeling more frustrated with her than the inaccessibility of everything else, so that didn’t last long. People say that you spend more time at work than you do at home, and it’s very true. Your relationship with your colleagues can be good or can be bad, but that doesn’t generally stop you from doing your job. If your relationship with your support worker isn’t good, though, then that does stop you doing your job. It’s important that you get that right.

RYeah, echoing David, I find that support workers who understand the Social Model of Disability⁵ just get it, so you don’t face this element of them trying to do everything for you. I did have teething issues though too. I initially kept getting notes in shorthand, which I couldn’t understand. I would explain that I needed them verbatim, and with full names instead of initials, but because the company would send lots of different notetakers and they were all trained in the same way it would keep defaulting back to shorthand. For the first couple of months I couldn’t properly follow up on actions from meetings because the notes weren’t accessible to me. Eventually they did get used to me though and adapted to my needs. The organisation and the workers all have a good attitude to their role, it just took a bit of time.

DThere are an awful lot of good people out there and in the end I don’t know of anyone who doesn’t have a good relationship with their support worker. You rely on them for so much. If you don’t have a good relationship with them it’s just not going to last, because you rely on each other for a smooth working day.

Notes from Below have previously published writing about freelance support work. How does it work at the council? Do you employ your support workers directly? Is the council involved? How much of the formal employment are you responsible for?

DI’m responsible for everything. I employ her, I pay her, I employ a bookkeeping firm to do the national insurance and tax and everything else, and then I submit invoices to Access to Work. As many people will know, getting them to pay on time is an ongoing issue so I’m always out of pocket - but it is what it is. I wouldn’t be able to work without it so I have to put up with it. It’s a flawed system.

When I first started, I had tried to see whether the council would be willing to employ someone directly themselves and then claim the money back through Access to Work, but they just weren’t willing to do it.

RI secure my support from several different organisations so I’ve never had to manage any of the payroll. They send their support workers and then I submit a claim form with their help.

I got my grant back in 2023 and I’ve maintained it since then, but unfortunately there’s now been a massive cut in funding. When I renewed in 2024 it was very straightforward. This year though they decided that I didn’t need certain services any more and removed them, while cutting the rates on the ones that remained. My disability hasn’t changed. I was born deaf. How does it make sense for them to slash my support? I’ve reported no change in circumstances.

I’ve read through the new guidelines and they’re now quoting £45 an hour for British Sign Language (BSL) interpretation. You can’t find that for £45 anywhere in the UK. But that’s what they’ve written. It was updated in April 2025 and I had my assessment in May. Previously they’d ask you for quotes from your local area. Now they’ve decided they don’t need quotes and they’re going to set the rates. It was such a different experience to what I’d had in 2023 and 2024. They didn’t listen to any of my concerns. They just decided I was no longer eligible for things and then they were gone overnight. It’s really regressed back to the Medical Model.⁶ Their attitude was so dismissive.

It’s going to have a big impact. We have a colleague at work, a qualified social worker, who’s deaf and relies completely on BSL interpretation to do her job. Her renewal this year put all of that in question because of the reduction in rates. Fortunately we’ve managed to negotiate an agreement with the council where they’ll now cover the costs upfront and she can claim them back through Access to Work. I’ve negotiated the same agreement with them since my support has been cut down to less than half of what it was. Am I supposed to just tell my support workers “oh, by the way, your payments are getting cut by more than half”? No. They have their rates. And I can’t just shop around. I’ve built a relationship with them, it took time for them to understand me and my needs.

We’ve heard of other workplaces who have similar agreements. It’s shifting the cost from the government onto local councils, who obviously don’t want to pay, but they’re afraid of getting pulled into discrimination cases. We had a high profile case in Hammersmith and Fulham recently, around disability, that cost the council £4.6 million. So they do tread carefully. They know they have a duty to make sure employees’ access needs are met and that goes beyond just laptops and AI or whatever. But at the moment my agreement with the council is still the exception, not the norm. But we’re trying to make it the norm. We’re campaigning for everyone at the council to be able to make that kind of arrangement if they need to.

Could you say more about what impact access support cuts are having on disabled workers at work?

RThe first thing to say is that many people use PIP for mobility, so that’s already having an impact on people’s ability to get to work in the first place. People are having to shoulder more of the cost themselves, which can quickly become unsustainable and drive people out of work.

Another thing we’ve noticed is that as Access to Work gets cut and the council absorbs more of the costs, disabled workers end up feeling much more vulnerable during restructures.That’s something we’ve heard from multiple disabled colleagues, that whenever management talk about cost-cutting and savings, they feel conscious of how much more expensive it is to employ them than a non-disabled person. That has a horrible psychological impact and puts disabled people at a disadvantage, even though legally - in theory - they shouldn’t be disadvantaged in that way due to their access needs.

You’re both active trade unionists. I’d be interested to hear about how your access needs are met in that context. What role do your support workers play in your trade union work?

DI’m not fully accredited as a rep and haven’t taken on any cases yet, so still haven’t faced any situations where I would need a support worker. I do wonder whether GDPR would be an issue, though, although I wouldn’t expect it to be any different to dealing with any other confidential matter at work. I also wonder about dealing with union business outside of work hours, since my support worker has limits to her contracted hours. If it came to helping someone outside work, unless it was just talking, I’m not sure I could do that.

RI’m a rep and use my notetaker when I meet with members and represent them in meetings. HR have actually questioned me several times about why my support worker is present. They say that they can just turn on transcripts and they’ll provide me with notes. But I always shut that down. I tell them that my notetaker needs to be there and I need my notes in a very specific way, so my notetaker will be there, taking notes on exactly what you say, to make sure my member gets the right representation from me. So even if there was initially a bit of resistance, my support worker now comes with me everywhere. To branch meetings, branch committee meetings, meetings with members. And I really rely on those notes, especially when I go into grievances, because management’s notes are not always available - or reliable. So my support worker is really important for me in that context.

Another thing I’d highlight is that I need time to prepare for cases. I need time to talk to the member, I need time to read up on the policy, I need time to seek advice from other active reps. That back and forth takes time, but it’s necessary to ensure the member is fully supported and we’re doing our job well. I’m quite firm on the number of cases I do accept, and if that means we need to recruit more reps, then that’s what we do.

Getting involved in industrial campaigns beyond casework is more challenging though, in terms of access. I get very fatigued in meetings and everything is so time-sensitive. If you’ve missed it, you’ve missed it. But I think fundamentally, for me, I’ve realised that organising is mainly about the bond you have as members. If the employer can see that you have those one-to-one relationships and the members are willing to go into dispute, willing to go on strike, then that’s much more effective than sitting around in all these other meetings, where in theory they support action but the higher up you go the more employer-aligned it feels and less supportive it is. I find other active branches a lot more supportive than regional officers. I’ll always turn to them first.

Could you expand a bit more on that? I’d be interested to hear more about your experiences as disabled workers in the wider trade union movement.

DWell, I put forward two motions to UNISON’s last Disabled Members Conference. One was really personal to me and to disabled people within our workplace, although I’m sure it’s not just us that face this. Our council has trigger points for sickness leave and they count disability-related leave within them. That obviously makes the situation unfair for disabled staff. I wanted to put through a motion arguing that we should work to ensure that disability-related absences don’t contribute towards trigger points, but it was just dismissed out of hand. I couldn’t understand that, especially with something that’s so important to disabled people. I know of people in my council who’ve hit trigger points because they have MS. That’s not something they can control. It’s something they had when they started the job, so how can they be penalised for it? It’s just wrong. But the reaction I got from the union, as a disabled person, felt like the kind of reaction I’d expect from a non-disabled person, and considering it was the Disabled Members Conference that rejection hit much harder.

RThose experiences feel like a betrayal. You’re already marginalised in society anyway, in terms of employment and education and so on. You’re excluded, discriminated against, in some cases exploited, maybe because of learning difficulties or hidden disabilities. It’s not nice when non-disabled people do that, but when it comes from a disabled-people’s organisation or a trade union, something that’s supposed to be a champion for you, then it feels like more of a betrayal. It’s difficult enough as it is without being dismissed from the places that we turn to for collaboration and support and solidarity.

But the other thing I’d like to highlight is that as council officers we have to tread very carefully in terms of what we say and do in an official capacity, but organising in a trade union capacity does free us up to do a lot more. We’re really excited at the moment because Disabled People Against the Cuts (DPAC) are forming a Hammersmith and Fulham branch. Both of our MPs voted for the cuts and now DPAC are going to be campaigning around that locally. Part of the reason that’s so exciting for me is because of the opportunity to learn from them and bring that learning back into the workplace. They’re obviously going to focus mainly on PIP and things like that, and we can work with them on that, but then we can also bring that struggle back into the council around access needs at work.

Because we’re not waiting to be saved. We’ve all got a brain, we all face the same challenges, let’s get in a room and discuss what the solutions should look like. Growing up I’ve found that if you’re not in the room negotiating - you’re on the menu. We’re willing to work with the decision makers but they need to know that if they shut us down we’ll be on the streets. And at least at the council they’ve learned by now that we’re not going away. Disabled residents have taken them to the Supreme Court twice already. We lost both times, but we keep coming back, and the council doesn’t want to deal with it. We have a history there, and a set of tactics, and a culture that says that even if you lose in the short term, you just keep fighting. That changes how the council relate to you, because they’d rather not deal with the hassle if they can.

What do you think about the campaign for a National Care Service. What do you think our priorities should be in the struggle for a better care sector?

DI think money plays too big a part in care; the fact that the level of care people actually receive is determined by financial factors. Maybe I’m looking at the world with rose-tinted glasses, but for a lot of people - elderly people, disabled people - the financial aspect of care isn’t something they should have to face.

RI don’t know how many people are aware of this, but disabled residents of Hammersmith and Fulham actually won a campaign to end charges for home care, and ten years on we’re still the only borough in the country that doesn’t charge disabled people for care. It comes back to people’s human right to access. You have that right in school, in education, in healthcare, in all these other public services, so why should disabled people have to pay for their care? A National Care Service is obviously much needed, because you can’t provide quality care on zero-hour contracts, without the training, the security, the stability. It’s something that should have been implemented from day dot.

DIt should work like the NHS, it really should. Well, maybe better than the NHS, because the NHS doesn’t work very well at the moment, but the theory is there.