Stretching Disability Living Allowance to its Limit

Stretching Disability Living Allowance to its Limit

Yesterday I had an assessment by Social Services for Direct Payments.  I’d been waiting about seven months for it after being assessed as ‘Urgent’.  The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.

What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not.  From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.

As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all.  It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there.  So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?

But, back to my main point, I thought it was interesting how far she expected DLA to stretch.  I currently use my DLA for an adapted car that has a hoist for my wheelchair.  Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price).   Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.

Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.

Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work.  So DLA may also help towards rent, bills and normal day-to-day living costs.

When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work.  The assessors response was that I should be using it on a wheelchair.  I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that?  She had no answer.  It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.

But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit.  Exactly how far do they expect DLA to go?

wheelchair push

Applying for Disability Living Allowance – part 1

Applying for Disability Living Allowance – part 1

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.

Credit to Jason Morrison at

Credit to Jason Morrison at

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.