In 2010 I cofounded an organisation called Touretteshero, the aim of which is to celebrate the creativity and humour of Tourettes Syndrome and share it with as wide an audience as possible. Tourettes is an often-misunderstood neurological condition, which I myself have. We use creative and playful approaches to increase understanding and encourage people to appreciate difference. Most recently we’ve done this through my stage show Backstage In Biscuit Land. In the same year that Touretteshero began I also started working at a children’s play provision in London, where I help run three popular inclusive projects for local children and young people.
On Friday afternoon I sat in our sunny playground and cried. My colleagues were all busy doing their work in the office, but I couldn’t do mine – I was stuck on the phone to the Department of Work and Pensions (DWP), pleading with them to pay money owed to my employer for the cost of my support at work.
The scheme that funds this is Access to Work (ATW) which provides practical support for disabled people in employment. With tears running down my face I explained my predicament to yet another helpdesk advisor. In April this year I’d cut down my project coordinator hours for the children’s organisation, going down from five days a week to four. I did this because it’d become possible for me to start getting paid one day a week for running Touretteshero. ATW cover the cost of the support workers I need to help me do my work safely and effectively. Without them I wouldn’t be able to work at all.
My support workers help me type when I can’t rely on my own hands, get about in my wheelchair, and keep me safe when I have ‘ticcing fits.’ Until now ATW have always been quick and efficient. Their support enabled me to keep working when my tics first intensified and when my mobility and independence suddenly deteriorated three years ago. So when I asked them to transfer one day’s worth of support from one organisation to another other I didn’t expect any difficulties, especially as I wasn’t asking for any increase in hours.
But what I didn’t know was that ATW was undergoing changes that would make the experience drastically different. And cause me to be crying with frustration on a Friday afternoon. To be clear, ATW aren’t refusing to help me – they’ve agreed to pay my support costs for both organisations. The problem’s been with the process of claiming the funding.
The system works like this: each organisation pays the support worker and then claims the money back from ATW. But now it seems that ATW are making it very difficult for organisations to get back the money that’s due to them.
Here’s a summary of what’s happened to me so far:
• Since my original request in April I’ve had at least three different advisors processing the claim
• ATW agreed the funding in April but provided nothing in writing until July
• Despite repeated requests it took ATW five months to provide the necessary claim forms. When they finally arrived there were no instructions and none of the additional forms it turns out I needed too
• ATW changed their postal address without informing anyone, meaning claim forms were going to the wrong address for weeks
• ATW changed their claiming procedures without announcement and that’s meant that forms have been returned without payment because they didn’t include everything needed for the new procedures.
The result of all this is that:
• Two non-profit organisations have been left carrying the cost of my support – now running into thousands of pounds
• I’ve been left terrified by the financial burden this has placed on them, and what it means for their cash flow while they continue to pay my support workers
• I’m spending hours of work and spare time trying to resolve this situation.
Sadly, the difficulties I’m describing are not isolated. They appear to be deliberate and systematic. In addition to making it a harder and much slower process to access support, ATW are also actually cutting the support they provide for deaf, deaf blind and hard-of-hearing people, many of whom now find themselves without the qualified interpreters they need for their work. For example, Jenny Sealey, artistic director of the disabled-led theatre company Graeae and co-director of the 2012 London Paralympics opening ceremony, is having to fight to retain the skilled interpreters she needs to do her job. For deaf people the frustration will be compounded by the fact that ATW applications can now be made only by telephone.
Around 37,000 people per year use ATW. If anyone were to suggest that all this support must place a financial burden on the taxpayer they’d be wrong. Widely accepted figures show that for every £1 spent on ATW, the Treasury gets back £1.48 in taxes paid and lower benefit claims. The way ATW, after years of quietly and efficiently enabling disabled people to work on equal terms with their non-disabled colleagues, is being undermined is an issue for us all. Disability can affect anyone at any time.
Five years ago when I started in my current role it wouldn’t have crossed my mind that I’d ever need constant support. Just as everything changed for me, so it can for anyone else. ATW has meant that I’ve been able to continue doing the job I love, continue to support myself financially, and continue to pay tax and contribute to my local community and economy. But for people who find themselves in need of ATW as of now, I’m not at all confident they’d get the necessary support to keep working. Over 6,000 people have already signed the online petition demanding that changes to ATW be stopped: please add your signature if you haven’t already done so. I’ll continue to document the difficulties I’m having as I pursue the payments that are owed. Rather than levelling the playing field for disabled workers, ATW seem to be creating obstacles for us that my non- disabled colleagues would never have to tackle.
A version of this piece was originally published on Jess Thom’s Touretteshero blog.
Interview: Tourettes, Tics, and The Seat of Creativity
Natasha Lewis on the campaign to save the Independent Living Fund.
Amelia Cavallo on the impact of the cuts to Access to Work.