Disabled parking refused

[rosalinda]

My sister has been diagnosed with cerebellum attaxia. She is so wobbly she is unable to go out on her own, although she still drives. She applied for an orange badge a year ago and was refused, although she appealed. Her GP says she is definitely entitled to a badge and has put a note on her application but he didn't explain about the falling over with attaxia. The people assessing appear not to understand Attaxia! If my sister could have a permit she could do so much more with her life. Can anyone help her to make sure she gets a permit this year. She is 67.

[HarryB Administrator]

Hi rosalinda

Oh, how frustrating for you and you sister. You have my complete sympathy.

It is essential that when your sister completes the application form for a Blue Badge, that she describes her symptoms when they are at their worst/on her worst day. Even if her worst days are infrequent, she has no control over when they will happen and it is at these times she will require the most help. Describing your worst day is not an easy thing to do for a number of reasons but unfortunately it is the best and only way to communicate to decision-makers who know little or nothing about ataxia how bad it can be.

There are a number of buzz words that could be used when describing cerebellar ataxia. Again, it is not nice and can be difficult to think these words apply to you but they do accurately describe ataxia, particularly to someone who knows little about it. Unfortunate as it is and it doesn't come naturally, you have to ‘lay it on thick', of course in the boundaries of always being truthful. In my opinion, the words are

Rare

Progressive

Degenerative

Neuromuscular disorder

Affects the parts of the nervous system that control balance and co-ordination

No treatment or cure

Fluctuating on a daily basis

If it is the case that your sister gets easily fatigued after walking only a short distance which in turn would make her unsteadiness worse, increasing the likelihood of her falling over, you must say this.

I hope this helps and that your sister is successful in getting a blue badge.

Best wishes

Harriet

[Hidden in reply to HarryB]

I too sympathies with your sister Rosalinda. I cannot add anything else to what Harriet has advised. Keep fighting for your sister to get what she should be entitled to. Harriet is correct to say that you should use appropriate wording when making your claim. Ataxias are rare conditions and many people just don't understand how badly people can be affected by the so many different types. Good luck!

[february]

Dear Rosalinda, I'm truly sorry for your sister, as she certainly deserves a Blue Badge! I live in the USA, was diagnosed with ataxia eleven years ago, and when I started using a cane about five years ago (after a bad fall, where I severely injured my back), applied for a handicap card ( same as your UK "Blue Badge"). The process is different here, obviously. My neurologist had to fill out a form, which I presented to the Secretary of State's Office and I received it right away. Anyway, follow Harriet's advice, as it's excellent!!! I sincerely hope your sister is successful this time!..., ;o)

[wobelyjohn]

I would also recommended scaniñg or copying what you put on the form so at renewal you can be consistent good luck.

[wobblybee]

Hi Rosalinda

What stumped me most with the form was the question relating to how far you could

walk without having difficulty, and it referred to the length of 2 buses end to end. I had to tick a box.

I almost gave up I was so frustrated with it.

Eventually I ticked the 1st box and added that balance was compromised immediately on standing. My GP gave me a letter confirming diagnosis (SCA) .

After reading about various people having had difficulty obtaining a Blue Badge, no-one was more surprised than me when it arrived!

Best regards xB

[sheild]

Strangely, I got a Blue Badge following a telephone conversation after my form went in. I was 'allowed' a Blue Badge on the understanding that when it came up for renewal I would have a definite diagnosis, this may be where it all goes pear-shaped as I have so far not got any further after 3 years in the hospital system.

It might be worth contacting the local council and speaking with the Blue Badge disher- out and explain the situation in as much detail as possible so that they find it harder to deny.

[Hidden in reply to sheild]

A 'General' or 'Definitive' diagnosis? What difference should it make? There are many people (including myself) who have a 'General' diagnosis where the cause is unknown. Ataxia affects everyone in different ways regardless of the cause (or not) for their disability. Ataxia needs to be promoted in such a way where it can be heard and understood much better by everyone. Glad you rightly received your Blue badge Sheild.

[ianrapson in reply to Hidden]

i have cerebellar ataxia which was past on to me from my mum. I am waiting to see if i will get a blue badge and also pip only payed me for standard payment on my mobility. So as you can see know one really knows about this disease

[sheild]

The officials seem to want a box to put us in so they can decide what we may or may not be able to have, many consultants are content (like mine) to say there 'isn't a magic pill' so why bother to try and isolate the condition, which then means we can't convince an official as we have no club badge as we don't belong.

It not only affects Blue Badge applications but also PIP (I had a ghastly time fighting for that), and then the sense of belonging socially. It is terribly isolating not having fellow sufferers to compare notes with or to recommend, say, a supplement to try. At worst it means being stuck indoors months at a time (our health authority won't give wheelchairs if you can manage indoors, so it's ok to be housebound(?))

I know there is the PIP, but buying a wheelchair is a nightmare with no support, we have spent a lot of money buying the wrong wheelchairs because you end up buying what the showroom people stock and maybe not the best one for you.

Without a definitive label or badge means there are a number of people just floating the system for years at a time or even forever.

[Panda84]

Does she recieve DLA high mobility? If she is in receipt of DLA high mobility she will automatically get the badge

[rosalinda]

What is DLA high mobility? She is not in receipt of anything. Thanks to everyone who has replied. She is completing her application form for the blue badge tomorrow and all the advice is helpful.

[HarryB Administrator in reply to rosalinda]

Hi rosalinda

I hope your sister managed to complete her application form for a blue badge OK.

DLA stands for Disability Living Allowance and is a sickness benefit. There are two parts to it, mobility and care of which you were awarded a high, middle or low rate. All new applicants would not apply for DLA anymore, rather Personal Independent Payment (PIP). You may find the following link helpful-

gov.uk/pip/overview

Best wishes

Harriet

[violasrbest]

I put on my application that I could not walk one pace without the real risk of a fall (i.e.safely) and that was deemed sufficient to issue a Blue Badge. To ask, 'How far can you walk' is not the right question if you have ataxia, so I assume any such questions really mean, 'How far can you walk safety, or without difficulty'.

I would second the suggestion to scan the completed form for consistency.

[7151]

So sorry she has been refused ! I live in ,France and basicy got my handicap badge very easily ..what à great help it is ..keep trying ..i think all dépends on thé dr médical certificat

[7151]

Aww poor you i live in France and got my badge reasonably easy ( ok dr certificats ..form to fill in ! But its soo good to have has changed my life before my kids had to take me for rendez vous cause i could nt handle thé machine for paying ect ..luckily i have no problème like your sister to drive ..she must appel maybe get à neurologue certificat Good luck

[7151]

Sorry just noticed this is 8 years ago