So scared at thought of DLA assessment - how do I get help?

[Mandy2003]

I have been reading a lot about the Government's plans to assess everyone who currently receives DLA.

I suffer from Type 1 diabetes, diabetic retinopathy, walking problems from a badly set leg (fractured in 5 places), Fibromyalgia with CFS and anxiety.

But the conditions I have which will make getting out of the house to any sort of assessment centre and speaking to a stranger so frightening is Post Traumatic Stress Disorder and Aphasia (which means I frequently can't make myself understood verbally). Due to cognitive difficulties it took me over 3 months to fill out my original DLA form 8 years ago.

Some of the effects of these conditions are intermittent, but on a bad day I cannot get out of bed.

Does anyone know what arrangements could be made for me regarding any assessment? How can I make myself understood to a stranger? The PTSD makes me break down in tears if I'm spoken to sharply or asked to do anything I'm not comfortable with. If I was asked to bend to the side I would fall over - could I say this or would they just want to watch me fail?

Help, I am really worried about this!

I really don't know, but I also have been diagnosed with CFS/ME, and have been house and bed bound now for months - I understand the speech problem thing, as it's recently started to become an issue for me - I'm really much better at expressing myself, but when I talk to my CBT counsellor, my OT, or for any length of time, my brain buzzes and my speech starts to slip. I'm in the process of applying for DLA myself and I'm bricking it at the thought of having to 'prove' this illness. Just the thought and logistics of getting to the charity office who're helping us with our application is a nightmare, let alone getting to the ATOS office and getting through the test.
I'm also intrigued as to how they ascertain your capabilities without forcing you to the limit - they can't seriously make you stand until you fall over, surely?

Try Citizens Advice Bureau in the first instance as they can help. Did you go through the ATOS assessment before or is this the first time? I didn't because I got an indefinite DLA award back in the days when you were assessed by a GP. At the time I was rejected twice on the basis of the forms I filled in myself, then a social worker friend filled it in for me, which led to the assessment, which led to the DLA award. So if you have access to a social worker that might help as well.

There is a forum called Ouch Too, which you should be able to find via google, where a lot of disabled people hang out and discuss questions like this. It's a huge issue for a lot of people. From my experience, I have a complex condition which is very hard to explain in a form, but very easy for a doctor to assess that I can't walk very far without putting myself at risk. The problem with the current system is that ATOS are not doctors, so unless you go in there missing limbs it's not going to be easy. I'm just hoping that the government find an alternative to ATOS for the assessment stage, or there's a change of policy before this all happens.

Thanks for your replies, and to you Rollersara for your information. I have not been called up for assessment by ATOS. I got an indefinite DLA award back in the day too. But I was under the impression that the word indefinite would not matter during this process. A bit like driving licences which say valid till so-and-so on the paper ones then they try to tell you that anything except a photo licence is unacceptable

Do you think that us indefinite guys will not have to be assessed? I had thought that if I got the call up then I would go to the CAB, yes. Also my local association for disabled people have an advocate service that I will probably be in touch with.

No, I think we will all be assessed in 2013, my only hope is that it won't be ATOS carrying out the assessments. :(

Hopefully under the pressure of all the appeals they will realise there's a problem with ATOS (weren't they banned from doing this sort of "work" in certain countries already?).

Depends how much of a backhander ATOS gave the government I suppose!

Yes, the statistics on appeals don't look good for ATOS, I think I read something like 80% of appeals are successful...

Sorry, that should be 40% according to the Guardian.