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 There funding for this had also been withdrawn.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

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Replies to This Discussion

Permalink Reply by Kati on February 26, 2010 at 3:47am

I wonder how long the woman had worked there who you talked to. I didnt know about reconsiderations!

In about October/November (I cant remember exactly) I got send a letter saying my DLA was due to end April 2010 and had anything changed. I should return form ASAP in envelope they provided if nothing had changed to continue receiving DLA.

The only thing that was different since last time was my arms been more affected and me been given a communication device since. I just scanned a copy of the assessment from the NHS guy which also included my symptoms and details of neurologist he got medical records from.

I can write a short time in block caps with left hand which is steadier than right and used wrist weights to try and write it as well as I could although it was still unreadable in parts. It took me a few days of writing for a bit then resting then going back to do a bit more as neatly as I could, to complete it.

I included a letter that repeated in print what I had tried to write on the form and sent that also with the copy of the NHS assessment for a communication aid, including my letter to panel which had included a lot of specific detail about my daily communication difficulties and difficulties in just writing a 'quick note' to communicate, as I used to do originally.

I posted it back before xmas and to be honest forgot about it over christmas, I got reply back in January to say I would receive both higher level of care and higher level of mobility indefinitely. (previously it had given a date 3-4 years in the future when they would be sending another form).

I didn't know I was meant to ask for a 'reconsideration', hopefully when they find your form and attached paperwork they can sort it out for you.

Permalink Reply by Carol Gow on February 26, 2010 at 4:28am

Hello
Kati, yours was not a reconsideration. You acted properly, it would have been called (by DWP) a review. A reconsideration is appropriate if you have had an award turned down, like Marie. You want them to 'reconsider the facts.
Regards
Carol

Kati said:

I wonder how long the woman had worked there who you talked to. I didnt know about reconsiderations!

In about October/November (I cant remember exactly) I got send a letter saying my DLA was due to end April 2010 and had anything changed. I should return form ASAP in envelope they provided if nothing had changed to continue receiving DLA.

The only thing that was different since last time was my arms been more affected and me been given a communication device since. I just scanned a copy of the assessment from the NHS guy which also included my symptoms and details of neurologist he got medical records from.

I can write a short time in block caps with left hand which is steadier than right and used wrist weights to try and write it as well as I could although it was still unreadable in parts. It took me a few days of writing for a bit then resting then going back to do a bit more as neatly as I could, to complete it.

I included a letter that repeated in print what I had tried to write on the form and sent that also with the copy of the NHS assessment for a communication aid, including my letter to panel which had included a lot of specific detail about my daily communication difficulties and difficulties in just writing a 'quick note' to communicate, as I used to do originally.

I posted it back before xmas and to be honest forgot about it over christmas, I got reply back in January to say I would receive both higher level of care and higher level of mobility indefinitely. (previously it had given a date 3-4 years in the future when they would be sending another form).

I didn't know I was meant to ask for a 'reconsideration', hopefully when they find your form and attached paperwork they can sort it out for you.

Permalink Reply by Carol Gow on February 26, 2010 at 4:39am

Helllo Marie
Its all very well telling the man from the CAB but the person doing the telling needs to note down what she said (perhaps she did!!) It would appear the people who open the post put the claim form in for the new claims. The note that was enclosed will be found when the 'claim' is looked at.
I am sure all will be well.
Take care
Regards
Carol

Permalink Reply by Kati on February 26, 2010 at 5:44am

oh rite, I was thinking in the sense that they always say you should tell them any new information about your disability so they could decide (reconsider) whether you were still entitled to it or that amount or lower/higher depending whether your condition improves/or gets worse.

I guess in some cases like stroke/paralysis/mild head injuries the person may relearn to do things after rehab so may end up better off than they was immediately after the event.

I'm still trying to figure out that new ESA, the pdf I downloaded was complicated, I emailed to Disability Alliance but they haven't replied.

Permalink Reply by Carol Gow on February 26, 2010 at 6:53am

Hello Kati
You are right, in that any change in circumstances should be declared.
You are also right in that short-term illnesses do not attract DLA. I would think that stroke victims attract the lower rate after they have been rehab'd, because they are bound to have some lasting damage, most remain to a degree semi- mobile.
The new ESA is supposed to make things fairer, it's a nightmare!!!
Regards
Carol

Permalink Reply by louise on February 27, 2010 at 5:49pm

When asking Dla to reconsider a claim you can also do it verbally over the phone if you are able too. I thought this might be worth knowing for those who have very little time to get their requests in for a reconsideration!

I wasn't happy with their reasoning last year when they awarded my daughter middle rate care. They told me if my ataxic daughter wore a continence pad all night we wouldn't have to help her with toileting needs throughout the night!

As a result of this I asked them to look again at their decision. I gave my reasons over the phone Which was to essentially say that I didn't think it acceptable to say a 12 year old should be expected to wear a wet pad throughout the night as you wouldn't expect an adult too.

The lady on the phone noted down exactly what I said and read it back to me. This was passed to a second decision maker who read through the notes and my opinion on their original decision and needless to say they agreed with my reasoning! He changed her award to higher rate, this was then backdated to the date of their original decision. It's only valid for a year though then I have to reapply for her.

When they do reconsider awards, it is always looked at by a different decision maker so there is no chance it will be handed to the person who made the original decision.

I really hope you get the help you need Marie to get what you should be entitled too.

Permalink Reply by Carol Gow on February 28, 2010 at 2:11am

Hello Louise
The fact the reconsideration was done per telephone is somewhat of a surprise to me. I thought it always had to be in writing. I would advise people to check when they telephone that confirmation is not needed in writing. Yours may have been a one-off, unless the system has changed. Anyway I am glad things worked out for you.
Regards
Carol

louise said:

When asking Dla to reconsider a claim you can also do it verbally over the phone if you are able too. I thought this might be worth knowing for those who have very little time to get their requests in for a reconsideration!

I wasn't happy with their reasoning last year when they awarded my daughter middle rate care. They told me if my ataxic daughter wore a continence pad all night we wouldn't have to help her with toileting needs throughout the night!

As a result of this I asked them to look again at their decision. I gave my reasons over the phone Which was to essentially say that I didn't think it acceptable to say a 12 year old should be expected to wear a wet pad throughout the night as you wouldn't expect an adult too.

The lady on the phone noted down exactly what I said and read it back to me. This was passed to a second decision maker who read through the notes and my opinion on their original decision and needless to say they agreed with my reasoning! He changed her award to higher rate, this was then backdated to the date of their original decision. It's only valid for a year though then I have to reapply for her.

When they do reconsider awards, it is always looked at by a different decision maker so there is no chance it will be handed to the person who made the original decision.

I really hope you get the help you need Marie to get what you should be entitled too.

Permalink Reply by Marie Turner on March 16, 2010 at 5:19pm

Hi All
At last something nice from the govt in a brown envelope. Yes I got DLA at last;higher rate mobility and low rate care which is what I needed.It is worth fighting to get. Thanks to alll of you who encouraged and supported me and gave m e advice.
Marie

Permalink Reply by Alan Thomas on March 17, 2010 at 6:14am

Thats, WONDERFUL news, so glad for you.

Alan
Ataxia South Wales chairman
Ataxia UK Trustee

Permalink Reply by louise on March 17, 2010 at 2:35pm

Congratulations Marie, I'm so pleased for you. Take care love louise

Permalink Reply by Carol Gow on March 18, 2010 at 2:33am

Hello Marie
I am very pleased for you.
Regards
Carol

Marie Turner said:

Hi All
At last something nice from the govt in a brown envelope. Yes I got DLA at last;higher rate mobility and low rate care which is what I needed.It is worth fighting to get. Thanks to alll of you who encouraged and supported me and gave m e advice.
Marie