Sunday, 15 January 2012

DLA, My Story

As the Welfare Reform Bill debate with regards to DLA is happening this week I thought I'd share my DLA story.

I became disabled at the start of 2009 and applied for DLA about 7 months afterwards. The delay was simply because I was having trouble coming to terms with the reality that my condition wasn't ever going to improve - something most people who become disabled tell me they've gone through at one point or another. I didn't start receiving DLA until mid 2011.

The delay was not because I wasn't disabled, not because I didn't send in all of the necessary letters but because I had had a blundered ATOS assessment for ESA. You see, between sending in my application and the DWP making a decision I received the results of my ESA work capability test. ATOS had decided I was fine. Naturally I appealed and eventually (Sep 2010) won my appeal at a tribunal. In the rejection letter sent by the DWP with regards to my application I was told that they had decided to take the word of one ATOS assessment over that of all my GP, consultants, psychiatrist and other health care professionals with a intimate knowledge of my case. We lodged an appeal and in 2011 it was heard. We won and were granted both higher rate mobility & care components indefinitely.



Of course, between 2009 and mid 2011 the costs related to my disability didn't magically disappear so I became totally dependant on my loved ones. I found that as I can walk a little in my house (it hurts, but the exercise is worth it) I was only eligible for a manual wheelchair from the NHS. Sadly my house is surrounded by hills as well as steps which stopped me being able to go anywhere under my own steam. I needed someone to be with me every time I wanted to wash, I needed someone to be there to cook meals for me or I wasn't able to eat (as we couldn't afford ready meals or pre-prepared snack food). As a result of the stress placed on me by fighting multiple appeals, having no money, not being able to see my friends as well as coming to terms with my physical disability and living with PTSD I attempted suicide on a number of occasions.  I was so very miserable, everyday was empty. All that happened was I would wake up, be in pain, try to keep myself sane then go to bed in the evening. People were full of ideas, they were sure that I could get a free electric wheelchair from a charity or that some body would pay for me to have a social life. Surely if I just explained I was registered disabled then I'd get lots of extra help? One thing I quickly discovered is that many people don't understand is that there is no 'national register of disabled people'. You don't get sent a card that 'proves' you are seriously disabled in the post, you need DLA to prove that you are. Without it we couldn't get a bus pass, a disabled persons rail card or carers allowance and local things like getting a blue badge or onto the disabled persons housing register were made extremely hard. My life revolved around waiting for the appeal and trying my hardest to fight my mental health problems to stay alive.

As you may well imagine, when my DLA came through my life turned around. Suddenly I was eligible for a bus pass which meant I could afford to go places. I was able to afford a new mattress to reduce the pain my old one was causing at night. I was able to go to the swimming pool and start getting involved in local community groups. My partner was suddenly eligible for carers allowance and was finally receiving the financial support he required to keep on preforming that role. We even managed to get an electric wheelchair so that I could travel from a-b without needing to be pushed.

Even now as life has started to settle down I can't imagine living without my DLA. It pays for taxis so I can go visit friends or leave the house quickly if the need arises, something I need to have planned a few days in advance to be able to do otherwise. It covers the cost of buying in pre-prepared meals for when my partner isn't able to cook. I pays for mobility aids when they are required and helps cover the gap between our tiny amount of housing benefit and the amount our private landlord charges to live somewhere big enough for my mobility equipment. It's also the only independent income I have, so on a more serious note I know that if I am ever being abused (as statistically I am likely to be as a dependant disabled woman who will likely spend her life in poverty) I will have a little money to escape with. I will always be able to have a little financial control over my life which is something I appreciate more and more every day.


I wish the story ended there. Sadly if the PIP is introduced (as the government says it will be) I will probably loose this life line. Currently I receive higher rate mobility support because I am 'virtually unable to walk'. These criteria are changing. Now they are looking at peoples ability to 'mobilise'. Because I can do the following; once a day I can push myself 200m on a flat level surface in my wheelchair - I will be deemed as being able to mobilise enough to not need support. It won't change the fact that I can't get 50 out of 200m towards my local bus stop in my manual chair alone. It won't change the fact I can't drive so need taxis (which don't come cheap). It won't change the fact my local ring and ride service now charge for the privilege of using them (even if you have a free bus pass). Getting from A-B will always be much more expensive for me than it would be for someone without mobility issues. I just won't be getting any money to help balance the cost. I will probably have my care component downgraded too as the PIP criteria doesn't appear to be particularly friendly to mental illness, especially things like PTSD where the effects vary wildly from day to day, hour to hour and are often reactionary in nature.

A cut to this income will not only destroy my ability to participate in society and volunteer in the local community, it will actively damage my health. I will no longer be able to afford to exercise at my local pool. I will loose touch with friends and family as I stop having money to leave the house and partake in social activities. The depression, anxiety and stress associated with my PTSD will get worse as I become more dependant on the goodwill of others and start to once more loose all personal agency. Eventually I may return to the state of misery that made me feel that I would be better of being dead than living a half-life full of pain and completely dependant on unpaid, overworked others.

This is why I'm fighting the proposals and why I think you should too.

Edited to add: You can read other stories like mine at Spartacus Stories

2 comments:

  1. I feel for you I really do. My sister is in a similar position as you with her MS. I fear she will be on more than a daily Prozac before the Tories have finished with her. Keep fighting. I'm retweeting this on Twitter :)

    ReplyDelete
    Replies
    1. Thank you so much! The more voices we raise to shout for change the harder time they'll have ignoring us.

      Delete