Wednesday, Jan 26, 2022

Waiting To Work

Tomorrow is Christmas Eve. I’ve got this week off, but I can’t relax quite yet because there’s a load of disability-related admin I need to complete. ..

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Tomorrow is Christmas Eve. I’ve got this week off, but I can’t relax quite yet because there’s a load of disability-related admin I need to complete. This includes doing the monitoring for my personal budget, emailing the occupational therapy team about a review, and calling Access to Work about some new equipment I need.

This morning I tackled the last task on this list – Access to Work.

Access to Work is a scheme that provides the practical support that working disabled people need to do their jobs. It’s a vital equalising measure without which I wouldn’t be able to do the job I love.

Access to Work covers the cost of my support worker, my job aide and the extra costs associated with travel for work. In addition to these costs, Access to Work can also cover specialised equipment. For me, this has included a lightweight wheelchair, and computer equipment.

Support used to be based purely on requirement, but back in 2015 the Conservative Government decided to cap the amount of support people could claim each year. This disproportionately impacted those like me who have more complex or specialised support requirements.

We were due to move into new offices last May, but this was delayed by COVID. Just last week though, Leftwing Idiot was busy setting everything up, ready for us to move in, in the New Year. He was doing the finishing touches on the day the Prime Minister issued a new ‘work from home’ order.

As someone identified as Clinically Extremely Vulnerable to COVID-19, I’ve had to accept that it’s very unlikely I’ll be able to move back to in-person working any time soon. But if I’m going to keep working from home, I urgently need some additional equipment, otherwise both my health and wellbeing will be compromised.

We have a super-busy start to next year working on some major projects that will involve a lot of online meetings. The timings are all very tight and I’ll need to be able to concentrate to get everything done. Doing this all online creates some access issues for me. Sitting in one position exacerbates my pain and I get fatigued very quickly – particularly if my body isn’t being supported effectively. During in-person meetings, when I’m in pain I can change position by, for example, lying on the ground, out of my chair. But it’s much harder to do this during online meetings because I need stay on camera and close to the microphone.

At the moment, meetings have to be short, and I can only really manage one a day. I often have to use strong medications to manage the pain and this impacts on other aspects of my work and home life.

Leftwing Idiot’s come up with a nifty solution to the problem. It means working from my hospital-style, profiling bed, where I can control and change my position much more easily and independently. But to make this possible I need a webcam that clamps to one end of my bed and a microphone that clamps to the other. It’s essential that this setup is wireless, so that my involuntary movements don’t damage the equipment, and so my support worker can help me quickly if I have a ‘tic attack’. This set-up would mean I’m able to manage the busy schedule of meetings next year without exacerbating my pain.

So, even though I’m technically not working this week, I wanted to start the process of getting this equipment. I don’t need any more funding from Access To Work – I just need them to agree that some of the money that would normally have been spent on accessible travel to meetings can be used to fund this equipment instead.

I figured this would be simple given that circumstances have changed because of the pandemic, the new variant, and the Government’s instruction to work from home.

I spent an hour and ten minutes on the phone to someone at their call centre. Even though they answered quickly, it took a long time to explain the situation and for the representative to seek advice on what I should do and advise on how long it will take. The person I spoke to was friendly and helpful, but ultimately what he had to tell me was upsetting and frustrating.

He said I’d need to submit a whole new application just to make this simple request, even though I only need permission to use my existing funding in a different way. Doing everything from scratch seems like a waste of time and energy, both for me and for the Access to Work team. The real kicker is that I was told this process will take at least three months!

My heart sank when I was told this, and I felt upset and angry, for what it meant for me and what it means for so many other working disabled people. I asked the representative what I should do during the three month wait. Should I:

Keep working in a way that causes me additional pain?
Stop working because I don’t have what I need to do my job?
Or ask my employer to cover the costs – again! They already cover a lot of the support that Access to Work won’t.

Unsurprisingly he didn’t have a clear answer for me.


A digital drawing by Touretteshero of her point of view from her profiling bed. The bed has midnight blue covers with yellow twinkly stars printed on them. In the foreground of the image is Jess’s hand holding the remote controls for the bed. Next to this is a tray with a wireless computer keyboard and mouse controlling the screen of the TV which is connected to her computer and is casting an image of white text on a red background that reads ‘Waiting to Work’ A webcam is connected to the end of the bed and pointing at Jess with a continuous green light. A grey hanging rail hangs above the webcam where it is fixed to the bed frame. Monkey, a black and white cat is curled up in a ball at the end of the bed at Jess’s feet. The left of the drawing contains part of a commode and some framed pictures on the wall behind it.

We’re two years into a fast moving and volatile pandemic, new barriers can emerge overnight, but rather than becoming more responsive so that disabled workers get the support they require as quickly as possible, the system is slower and clunkier than ever before.

Of course there needs to be a process, but this one is unnecessarily complicated. A key issue is that the cap was introduced over five years ago, but the system has never been updated. As the director of a company I’m used to making strategic decisions, but when it comes to my own support I’m at the mercy of rigid systems. There are practical implications to this but it takes a huge emotional toll as well.

Access to Work rightly exists to remove the barriers to employment that disabled people face, but if it takes three months and involves starting from scratch to address each barrier, it’s clearly far from equal.

Ultimately, I’m fortunate to work for an inclusive and supportive company, and to be confident enough to ask them to pay for the equipment I need, but I’m acutely aware that there will be many people who aren’t in that position and who’ll be losing work or compromising their wellbeing because the system isn’t fit for purpose.

Now I’ve got that off my chest I’m going to focus on the festivities of the next few days – wishing you all much joy and laughter.


Did you miss our previous article...
https://learningdisorders.solutions/tourette/the-school-psychologists-guide-to-tourette-syndrome-and-other-cooccurring-conditions