When I was 17 (in 1999) my dad applied for DLA for me on my behalf. At the time I was at college and enjoying being around my peers. So at the time I didn't want to think about the fact that I had incurable disease or categorise myself as disabled (although be it on paper). I remember vaguely going for a medical assessment and not passing the criteria because I at the time I was able to carry out all the actions the Doctor/Medical Professional requested me to perform.
By 2004/2005 I suffered a severe fare-up in which I was hospitalised for 5 months. During this time I was awarded DLA for 3 years. Then in 2007 I was awarded it for 2 years. My renewal is up and my current run is due to end at the end of April 2012.
The DWP sent me the renewal forms in Dec 2011. As I have been so unwell I was unable to return the form until Feb 2012; due to a severe case of discord lupus all over my body in which I was severely debilitated and unable to use my hands. I believe that as I felt so ill at the time of this particular renewal, I was able to paint an exact image of how terrible our condition can be and this strengthened my application.
I have now been awarded the Highest Rate Care and Mobility indefinite. I am aware there will be changes to DLA in 2014 so I don't know if this will affect me, but I am relieved I am receiving the extra support and assistance I so desperately need.
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charm81
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That's brilliant for the award and you. But the flip side of the coin you have been so poorly. I hope all starts to get better for you soon and you start to feel better! Lulabelle x
Well done for fighting for the DLA i think the more people they see having flares means they might realise that this illness is unpridictable and everyones future can vary. I hope the future improves for you.
Hi i had lupus from 2001 when i was very ill that year i just had to get my self through it, i was off work for a year. Then over the years i had small flare ups but just dealt with it as i did not know there was help out there. Until 2010 when i collapsed at home and was in coma for 2 weeks my children thought i was not going to pull through, but thnk god i did i was very ill and in hosiotal for 5 months, when i came home i was not able to do anything for my self. Then a dear friend told me about DLA i did not want to apply for it as i was keen to go back to work i have never had benfits i have always worked. But my family filled the forms in which took 2-3 days to do as they ask so many things, and after 3 months i was awarded the high rate for indefintely, so i dont if i have to fill in forms again or not but i was surpraised that i got it, now i do get good days and bad days but the DLA dont understand that they only look at u when you have good days and say that you are not to get the benfits. Life is tough i want to go back to work part time, but scared that i will lose my benfits, as i do get bad days, with good days sometimes, i wish they would understand our illness alittle better as there is so many people in the same situation as i am in. So i wish you good luck and hope it goes well for you as i have read you have been thruogh so much
Thank you for your kind words. I'm in the same boat as you regarding work. I was forced to resign from my job in 2009 following diagnosis of renal failure and haven't stepped foot in a classroom since (I'm a teacher). Are you aware that DLA is not a means tested benefit and you can receive it if you are employed. However you would have to let the DWP know you have returned to work so your care needs can be adjusted where necessary.
You can work full-time with DLA as long as the information you give to the DWP explains how the tasks you will be expected to perform at work do not make a nonsense of your stated levels of functional disability. You are under a legal obligation to provide this information, especially when it is a change of circumstance from the time you claim. Explain fully what assistance is given to you in the workplace and you can even keep the care component. You also have a duty to your employer to fully disclose what support you need. You might need someone delegated to help you out of the building in case of fire, for example. Your employer might provide you with a parking space right outside the entrance. You need to explain those things to the DWP.
And by the way, even though it is difficult to explain ups and downs in a claim, they are allowed to take those into account - the test is what you are able to accomplish repeatedly, reliably, and safely, for the majority (i.e. at least 51%) of the time. They are not supposed to assess you just on your good days, any more than you should only tell them what you are like on your bad days. If they later see that you able to achieve more than you say on a claim form, you lay yourself open to a charge of fraud. Explain the whole spectrum, and the frequency, and then you are safe.
I'm a welfare rights adviser, and my best advice is to get help to complete a claim if you find it too much.
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