Where can you learn about disability benefits?
Where can you find out about disability benefits? Where is it advertised, who tells you, and how are you pointed in the right direction when you start to find it harder to manage?
I am wondering where I first heard of Disability Living Allowance, the main benefit for disabled people. DLA is not means tested as it is intended to compensate for the extra living costs which are incurred by everyone who has additional needs, no matter what their background. It can be a lifeline, but nobody ever tells you that you might qualify, especially if, like me, disability has crept up on you slowly throughout your adult life.
I think I must have heard of it through my family – my brother gets DLA to help with / compensate for his learning difficulties, and I remember my mother urging me to stop being stubborn and apply for everything to which I was entitled.
At this point, I need to give you a little background. Some people are born with conditions which mean they are disabled for their whole life. Others might suddenly become disabled, for example in a car crash. I had a normal childhood, but at the age of 12 dislocated my knee. Since then things were not right, and grew worse – it’s hard to nail down, but I remember asking for a ground floor room in halls aged 18, as I was beginning to find stairs hard. I also recall boyfriends from my university years nagging me to carry a stick, as it was unfashionable but made my life easier.
By the time I received a diagnosis of Ehlers-Danlos Syndrome, a connective tissue disorder which makes my joints too loose, the horse had well and truly bolted. The stable door was irrelevant. I was already a wheelchair user and now disability was a part of my everyday life, although a diagnosis was useful in order to better understand myself.
My consultant kindly said he would write me a letter for DLA if it helped – but that was in 2008. By that time I’d been dislocating for 20 years, needed “reasonable adjustments” for 14 or so years, and had already been receiving DLA for 6 years.
I think Disability Living Allowance is a great benefit, actually. Of course it’s not enough to compensate for all my extra needs (it just about covers my cleaner dashing about with a hoover for a few hours, and a few taxi rides here and there) but it IS a recognition, and it is nice to get something which is not means-tested, acknowledging that our additional needs will have extra costs no matter how much or little we earn. I am lucky enough to have an indefinite award and the reliability of almost £400 arriving every 4 weeks is a lifeline, even though my husband and I are not borrasic. It means that whether I have been able to work or not, I still have some money to contribute to the family funds, and thus I still have my pride.
If only more people knew about DLA! Also, I am aware that I was extremely lucky to get an award that accurately reflected my needs, for an indefinite period, at first attempt. According to my disabled friends, this is very rare. Some apply but are turned down and don’t appeal, but many who do appeal will win. However, the award may be for a limited time, so the process is barely over before you have to re-apply and go through it all over again. It is shocking that disabled people, who have the least energy of anyone, have to jump through hoops and fight for their rights in this way.
Once I received DLA I still didn’t know about half the doors that had opened, even though many were automatic. After attending a focus group with other disabled people, I was inspired to create the website www.enabledpeople.co.uk, to let everyone know about other concessions and entitlements. Sure, I saw leaflets about disabled railcards when I was in a station, but I didn’t know that if I travel in my wheelchair I can get 50% off the standard fare – no railcard needed. Funnily enough this isn’t advertised. Nor is the fact that you can travel for free on London Buses in a wheelchair. Plus of course cinemas, theatres, gig venues, festivals, and museums will not go out of their way to let you know that you can get a carer in for free. Why would they? All that lost revenue! But why should I have to find the energy to ask for a discount or ring around to find out whether they can accommodate my assistant? It is incredibly frustrating!
However, I am very grateful for my DLA. It covers the cost of a cleaner and means that I feel some sense of pride in the house, because my cleaner is only doing what I would do myself, if only I was more able. I feel that I have contributed.
Disability Living Allowance is, as far as I know, the only disability benefit that is not means-tested. And although my husband earns a good salary, it is essential – it means I can justify using a taxi or hiring a cleaner, and so genuinely making my life easier.
And that, surely, is the point.
Spread the word!