This a tough one, and one I’ve been avoiding. Just the words ‘Disability Living Allowance’ makes my stomach turn into a big knot, and a nauseous feeling to pass over me.
There is a perception that disabled benefits are easy to get, and that most are fraudulent so I just wanted to talk about my experiences so far.
For a start – the basics of Disability Living Allowance (DLA). It’s a benefit for the under 65s (over 65s get Attendance Allowance unless you’re already in receipt of DLA when you turn 65). It has two components to it – mobility, and care. The idea is that they aren’t really meant to worry what’s wrong with you, but how it affects you. So a person can get either one component, or both. The care part is then split into three – low rate, middle rate and high rate. The mobility has just two parts – low rate and high. Low rate mobility is meant to look more at the non-physical side of mobility (bear with me here!). This is usually around someone not being safe to walk without supervision i.e. they have a condition that means they struggle to understand danger, or perhaps they regularly get dizzy and may end up in the road, or may sometimes refuse to walk at all due to a condition such as Autism. The high rate is meant for people that (usually physically) can’t walk at all, or is “virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk.” It can also be awarded for sensory conditions.
If someone is awarded High Rate Mobility, they can join the Motability Scheme and swap their money for a car, or wheelchair or scooter. A car can be adapted to your needs either for free, by a grant or by self-funding.
I’ve tried to summarise it simply, because it’s actually a very complex benefit with pages and pages of rules and laws, that they frequently completely ignore. Okay, my bias is showing already!
One other important point – the benefit is for the additional costs of being disabled. You can work full time with it and still quality.
I first applied some years ago. I was at university when I did so, which didn’t help in hindsight. A lot of the things I had a problem with at the time I found easier at university. At home my bathroom is downstairs, my bedroom is upstairs. At university my bedroom was downstairs along with the bathroom, and it was right next door. My bath is a pain in the bum to get into, but at university it had an actual shower with a low step. My care needs were no where near what they are now, but my mobility was fast going down hill, and I was struggling on by the skin of my teeth.
I was immediately turned down and so I appealed and went to tribunal. By the time it got to tribunal I’d finished university and was back living at home.
The tribunal was interesting. They started out seemingly pleasant, but soon got down the business. A tribunal is made up of three people – a judge, someone with medical knowledge (usually a GP), and someone termed a ‘disability specialist’ – at that time someone who works with disabled people.
First of all the GP argued with my diagnosis – despite not being a rheumatologist or specialist in any way. Without examining me, he decided I couldn’t possibly be hypermobile.
The disability specialist was rude, and ignorant. She asked silly questions like why my car wasn’t adapted (because I need high rate mobility to get it adapted, or thousands of pounds?)
The form for DLA is very long. It tends to work by starting with tick boxes – for example – do you struggle with walking yes/no. It will then ask in what way – i.e. do you limp, walk slowly, etc and then finally has a box for you to explain. (These aren’t the actual questions, by the way.) It asks the same questions in slightly different ways over and over, and there are multiple tick boxes on each page.
At one point the judge asked if I needed help during the day. I said yes. He asked me to turn to a certain page of my claim form. There was a hush while everyone thumbed through the form. He asked the question again and pointed to a single tick box on the form that I’d left blank. I hadn’t said I didn’t need help, or that I did. It was blank. However every other box on the page was filled in, and there was a list of ways I needed help in the text box, so it was clear it simply hadn’t been ticked in error. He then asked me to turn to the final page where the declaration is. He slowly read it out – that to the best of my knowledge everything was truthful in the claim form. Did I agree? Yes, I said. But you haven’t ticked the yes box, he said gravely. So it’s false. I felt like I’d just committed a crime.
At another point he began questioning me about distances. I explained to him I have dyscalculia, so distances mean nothing to me, so could he use time instead. (I.e. can you walk for 30 seconds, or whatever, because that I can understand) Instead he angrily kept repeating the same question using distances. My mum saw I was getting upset and tried to help me by explaining the distance, but he snapped at her to be quiet and ‘not to help me’.
The questions about how I coped at university kept coming up. I tried to explain the above – the ways I’d managed, the support from friends – but it was just rejected. The questions continued in the same vein, until they asked me to leave for a few minutes, and then called me back in to turn me down. I can’t say I was surprised. I decided I would apply again, as my condition had continued to go downhill anyway.
My experiences with my second claim can be found here.