DLA and I'm not normal

As some of you know from the Ataxia UK forum I am having a battle with DWP regarding DLA. I was turned down three weeks ago and have one month to appeal. Sadly Ataxia UK were unable to help me due to sickness. I tried our local DIAL and they told me if they hadn't filled in the form for me they couldn't help. There funding for this had also been withdrawn. So after trying to get an appointment with the local CAB to no avail time was running out.Fortunately a CAB near my workplace were able to see me yesterday. Having read my form which I had photocopied they could see why I had been refused. I had been honest but not specific enough in how the condition affects

my daily life. I filled it in 3 months ago when I had just been diagnosed.When asked can you walk and how far I did not answer because I can walk but had not explained the discomfort properly.

Talking to a very helpful member of Ataxia UK she explained that my symptoms were normal to me because I've had to learn how to adapt. There is nothing normal with lurching and staggering about with stiff spastic legs or rolling around on the floor trying to get up. It seems normal to me because that's what I have to. Thgere is nothing normal about spilling food all over the floor or writing like a toddler. When we fill in the form we have to think about what is normal. I have filled in a new form with specific descriptions of my difficulties and I have backed them up with testimonials. The CAB advised me to resubmit the form asking them to look at it again in the light of my further evidence. I have sent this with proof of posting and will let you all know the outcome as it may help some of you going through this particular minefield. If you have ataxia you nbeed all the help you can get.My taxes in the past have paid for it so I don't feel guilty that after 50 years I need a bit of help now

Marie

my daily life

Replies are closed for this discussion.

Replies to This Discussion

Permalink Reply by Carol Gow on February 23, 2010 at 3:53pm

Hello Marie
I answered this subject on the Ataxia UK web-site and you seem to have done what I recommended, albeit that you have had a rough time. Always remember,it is not what you say but how you say it that counts.
Is there is DIAC (Disability Information and Advice Centre) near you? We are lucky in this neck of the woods, there are several organisations to help. Mind you my experience is the people that are there to help are usually bolshie!!!
Good luck to you, I hope all goes well.
Carol

Permalink Reply by Marie Turner on February 23, 2010 at 4:15pm

Carol Gow said:

Hello Marie
I answered this subject on the Ataxia UK web-site and you seem to have done what I recommended, albeit that you have had a rough time. Always remember,it is not what you say but how you say it that counts.
Is there is DIAC (Disability Information and Advice Centre) near you? We are lucky in this neck of the woods, there are several organisations to help. Mind you my experience is the people that are there to help are usually bolshie!!!
Good luck to you, I hope all goes well.
Carol

Permalink Reply by Marie Turner on February 23, 2010 at 4:18pm

Hi Carol
Have had my fair share of bolshie.Must be a power thing. Not sure about DIAC. Will find out.
Marie
Watch this space.

Marie Turner said:

Carol Gow said:
Hello Marie
I answered this subject on the Ataxia UK web-site and you seem to have done what I recommended, albeit that you have had a rough time. Always remember,it is not what you say but how you say it that counts.
Is there is DIAC (Disability Information and Advice Centre) near you? We are lucky in this neck of the woods, there are several organisations to help. Mind you my experience is the people that are there to help are usually bolshie!!!
Good luck to you, I hope all goes well.
Carol

Permalink Reply by Kati on February 23, 2010 at 4:32pm

Did you give them details of a neurologist who has diagnosed you or have you not been diagnosed yet?

I couldn't tell them how many yards I can walk as I have no idea how far a yard is! But i told them how many steps or how many swings on crutches from car into families house etc. I think it is getting harder to claim it cos of all fraud that now takes place so i guess they are more wary about new claims coming in from people who haven't tried to claim before.

Can you still walk everywhere without a stick or anything? Sometimes I think they don't consider that people can have quite disabling conditions who aren't yet in a wheelchair all time, unless it something like severe learning disabilities!

Good luck with appeal

Permalink Reply by HELEN on February 23, 2010 at 4:50pm

Hi Marie,
I fully understand where you are coming from, it is like getting blood from a stone getting what is rightfully yours, I sometimes wonder what we have all worked for and paid taxes.
Like yourself I have applied on Diana's behalf to get her D.L.A increased to the higher rated care component only to have it refused like yourself.
Not one to let the beaurocrats beat me I am now taking it further to an independant tribunal. It is all so time consuming and frustrating there surely must be an easier system that could be put into place.
I will get it increased for her I am certain but it is yet another battle.
I hope you can get it resolved soon Marie.
Take care
H&D

Permalink Reply by Marie Turner on February 23, 2010 at 5:24pm

Hi Katie
I sent them details of my neurologist who had diagnosed mild cerebellar ataxia. You can imagine what they would make of that. Basically I am in the early stages and am not in a wheelchair yet. Yes I can walk/lurch over some distance but even standing up means I lose my balance and wobble about. It wouldn't look so obvious in a wheelchair.Also I can't write so my husband has to fill in my forms.So much for being normal. I wish.
Marie

Kati said:

Did you give them details of a neurologist who has diagnosed you or have you not been diagnosed yet?

I couldn't tell them how many yards I can walk as I have no idea how far a yard is! But i told them how many steps or how many swings on crutches from car into families house etc. I think it is getting harder to claim it cos of all fraud that now takes place so i guess they are more wary about new claims coming in from people who haven't tried to claim before.

Can you still walk everywhere without a stick or anything? Sometimes I think they don't consider that people can have quite disabling conditions who aren't yet in a wheelchair all time, unless it something like severe learning disabilities!

Good luck with appeal

Permalink Reply by Marie Turner on February 23, 2010 at 5:31pm

Hi Helen

It is all very time consuming but the majority of people who use this forum seem to get there in the end.We are fighting ignorance. Thank goodness we have ataxia uk to stand up for us and make our condition known. Good luck with the tribunal.
Marie
HELEN said:

Hi Marie,
I fully understand where you are coming from, it is like getting blood from a stone getting what is rightfully yours, I sometimes wonder what we have all worked for and paid taxes.
Like yourself I have applied on Diana's behalf to get her D.L.A increased to the higher rated care component only to have it refused like yourself.
Not one to let the beaurocrats beat me I am now taking it further to an independant tribunal. It is all so time consuming and frustrating there surely must be an easier system that could be put into place.
I will get it increased for her I am certain but it is yet another battle.
I hope you can get it resolved soon Marie.
Take care
H&D

Permalink Reply by Jeannette Hill on February 24, 2010 at 5:06am

I know exactly what you're saying - I am fortunate that I'm not in a wheelchair, but sometimes even I feel that I'm not properly disabled and tend to trivialise my issues. You do get used to things and forget that it is not 'normal' to say have your head spinning most of the time!

Kati said:

Did you give them details of a neurologist who has diagnosed you or have you not been diagnosed yet?

I couldn't tell them how many yards I can walk as I have no idea how far a yard is! But i told them how many steps or how many swings on crutches from car into families house etc. I think it is getting harder to claim it cos of all fraud that now takes place so i guess they are more wary about new claims coming in from people who haven't tried to claim before.

Can you still walk everywhere without a stick or anything? Sometimes I think they don't consider that people can have quite disabling conditions who aren't yet in a wheelchair all time, unless it something like severe learning disabilities!

Good luck with appeal

Permalink Reply by Alanj on February 24, 2010 at 9:35am

hello Marie
when i applied for DLA in Feb 09 while filling in the section about walking how far and aided, I wrote that walking wasnt my issue it was stumbling and falling over! Then at the end of the questions it asks about falling over. I was diagnosed with CA in feb and awarded Higher Rate DLA and Middle rate cares allowance in May after they wrote to my GP. You have to put down worst case senario in these forms as your illness is progresive. I hope that this is of help to you
Alanj

Permalink Reply by Marie Turner on February 25, 2010 at 5:16pm

The saga continues. Phoned the DWP office to check my paperwork had arrived in good timeand got told it would be considered a new claim and it was too late anyway.I said the CAB had told me exactly what do do and had given me the form and instructions to ask them to look at it again. I spent ages telling her that it was not a new claim but an extension of the old one. Did it matter if I had written it on a form. It wass accompanied by a letter explaining everything including the words can you look at this AGAIN. If I made myself clear on a piece of toilet roll rthat should be enough.Was told I had been given bad advice. When I said Ataxia Uk had given me the same advice the lady said that had been incorrect also. I said I felt as if I had been badly let down and what would she advise. She suggested I asked for a reconsideration and I said that is what I had done but was merely checking to see if it had arrived.She said she would phone Bristol and after I had listened to the Four Seasons for the third timeI was told that if it was a reconsideration it hadn't arrived and it was too late. I asked if I was going nutty but I didn't think it was the 2nd of March today. I had proof of posting and it was sent on the 23rd of feb. The deadline was the 2nd of March. I was going roundd in circles. Then she had a little think and said it was probably in another office.By then I was tearing my hair out. I feel very let down. I keep being told different things.If it wasn't so important I would laugh. It is becoming a farce.

Permalink Reply by Carol Gow on February 26, 2010 at 2:00am

Hello Marie
If your 'request' was on a form that would be incorrrect. A reconsiderstion, which is what you want, should be done on a sheet of paper. Your request should have been headed reconsideration required, at the very least an accompanying letter should have been with it. The CAB were wrong to give you a DLA form.
If a form is sent to the DWP they would automatically assume (rightly or wrongly) it was a new claim and it would be sent to the new claims department. The new claims are dealt with in strict date order, so it would be sometime before 'any mistake' is rectified. (Their clock starts ticking from the date of receipt). Don't lose heart, any reconsideration can be done on a form, (once the department knows)
Hopefully now everthing is fine and things will work out for you.
Regards
Caro;

Permalink Reply by Marie Turner on February 26, 2010 at 3:28am

Hello Carol
The man from the CAB phoned the appropriate office and this is what they told him to advise. The form was accompanied by a letter explaining that it was a request for a reconsideration not a new claim, I can't believe they would throw away all the accompanying paperwork. I feel like piggy in the middle.
Regards
Marie

Carol Gow said:

Hello Marie
If your 'request' was on a form that would be incorrrect. A reconsiderstion, which is what you want, should be done on a sheet of paper. Your request should have been headed reconsideration required, at the very least an accompanying letter should have been with it. The CAB were wrong to give you a DLA form.
If a form is sent to the DWP they would automatically assume (rightly or wrongly) it was a new claim and it would be sent to the new claims department. The new claims are dealt with in strict date order, so it would be sometime before 'any mistake' is rectified. (Their clock starts ticking from the date of receipt). Don't lose heart, any reconsideration can be done on a form, (once the department knows)
Hopefully now everthing is fine and things will work out for you.
Regards
Caro;