A couple of days ago the renewal form for my Disability Living Allowance (DLA) arrived in the post. I was relieved to see they were for DLA because it meant I wasn’t yet on the list to be assessed for the controversial new Personal Independence Payment (PIP).
When my ‘ticcing fits’ started in 2011 my DLA entitlement was reviewed and an award was made which would last until January 2015. That seemed like ages away at the time and I was sure that the intensity of the difficulties I was experiencing would’ve reduced by then. But tic-wise things haven’t changed a great deal, though what has radically improved is my ability to understand my own needs and explain them.
This evening I sat down with Sophie, my overnight support worker, and started to fill in the form. She scribed for me and I dictated. The questions are straightforward and clearly phrased. For example:
• How many minutes can you walk before you feel severe discomfort?
• How long can you be safely left for at a time?
Assuming that crashing to the floor counts as ‘severe discomfort’ and by safely they mean not at risk of suffocation, head injuries or carpet burns, the answer to both questions for me is zero minutes. I found it strangely confronting, measuring my difficulties in such stark terms.
Another question that was tricky for me was:
• How often do you fall or stumble? Tell us roughly how many times you have fallen or stumbled in the last month
I fall every few steps, even when someone is supporting me. This means I fall many, many times every day even though I use my wheelchair a lot of the time and I almost always have somebody with me. I estimate that I probably fall about twenty times a day, so the answer to the question is 600 times a month.
Seeing this written down was shocking, and recognising that things hadn’t improved in the way I’d hoped felt depressing.
But I’m glad the form is so detailed, and I know it’s important that the people assessing my claim get a clear idea of the difficulties my tics present. Filling it in may have been hard work and upsetting at times, but I’m very aware of the vital and life-changing support the DLA provides. It enables me to live a safer and more independent life, and for that I’ll always be thankful. Without its help I’d find it impossible to meet the additional costs my disability entails, and my life choices would be greatly restricted as a result.
I’ll have to wait and see what the outcome of my application is, but as my needs haven’t changed I very much hope my award continues at the current level. I hope, though, by the next time I have to fill in the form the answers I’ll give will feel less bleak.