Ataxia UK
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Registered disabled

Hi all,

I know this will sound a bit random, but can anyone advise on the process of being registered disabled ? I am just trying to prepare for any possible future outcome.

At present I still work (well attend anyway ☺) and plan to continue for as long as possible. My employer has been brilliant and do all they can to make things easier for me. They are currently trying to find me more office/computer based tasks, to take away the more manual side of the job.

My balance seems to be getting worse quite rapidly and I got to thinking, if we get to a stage where my employer feels they can do no more, and that I'm just an accident waiting to happen, what happens next ? I guess they would have to offer me some type of medical retirement. But then what ? As I'm not registered disabled, would I just go on 'job seekers' ? With the best will in the world, as a 58 year old, with Cerebellar ataxia, I'm not going to have prospective employers fighting over me.

I hope to go on working for as long as possible, but as I say, want to be prepared for any outcome. Any advice would be appreciated. Thanks.

8 Replies

Hi KennyH,

To be registered disabled, I had to apply to my county council and I found the details on their website. I also applied for a free bus pass as I can longer drive. Some people don't like being registered disabled as it gives them a label but in my case, the council sent me a little card which I carry round and entitles me to concession rates at lots of places.

In terms of finishing work, my employer was brilliant in terms of equipment and tasks however, I was a senior manager in an emergency services dispatch centre and as you can imagine someone of my specific new skill set would not fare well. I luckily had a local government pension and via my Union applied for ill health retirement. This is something that you can instigate, you don't need to wait for your employer to offer it.

Fortunately, my pension together with my Personal Independence Payment (which you should apply for and can get even if you are till working) means that I am no worse of. In my pension, because I qualified for ill health retirement, my employer paid contributions as if I had retired at 65.

If you do not have a pension, Job Seekers Allowance probaly isn't the best as it assumes you can work and are actively seeking work. If you are no longer able to work there will be no point in looking for work so you'll need to to apply for Employment Support Allowance instead.

The website is a great source of information on disability and benefits. Also, do some internet research on ill health retirement. If you are in a union, speak to your rep.

Hope this has been of some help to you. Finishing work is hard and can be a minefield. If I can help anymore, please ask!


Cheers Jay,

I think i need to do some more research, thanks for pointing me in the right direction, i had never heard of things like PIP. That's a great help thanks.


Hi Kenny jays advice was brilliant. The only thing I would add is you need to contact your adult social care team at the local council. Ask them for an social care assessment and to send you an application for a blue badge send a copy of any letters about your CA that might be helpful for someone who may not know how your condition affects if you have difficulty walking due to fatigue or poor balance. All the best


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Hi, I was diagnosed with Cerebellar Ataxia about 12 months ago and so far have just been in touch with our doctor who in turn put me on to physio and OT who provided me with a walker and some other equipment. So far I haven't applied for a blue badge or anything "official" as yet so I'll be very interested in how you go on. I'm retired though so PIP isn't available for me. I think I need to get on to the Citizen's Advice.

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Hi KennyH, Your employer is required to make 'reasonable adaptations' to enable you to carry on working with your disability. What counts as 'reasonable' will vary according to what business your employer runs and the possibilities that there are to make adaptions. E.g. if your place of work is on an upper floor and there's no lift, they wouldn't be required to install one or move their office to a building with a lift. But if they have an office available on the ground floor, or if it's possible for you to work from home, this should be considered.

Are you a member of a Trades Union? We have found that they can be very helpful to people with ataxia - though you will first of all have to explain what it is!

In terms of 'medical retirement', how you will fare, will depend on the company pension scheme and whether there are any provisions for pensions to be paid early in the event of medical retirement. If not you would need to make an application for Personal Independence Payments (PIP) as mentioned above. There's lots of information on the Turn2Us website, including a benefits calculator benefits-calculator.turn2us...

If you want to talk to anybody about this just call or email the Ataxia UK Helpline 0845 644 0606. Best wishes Sue


Thanks for all the replies people, some very interesting stuff. As i said, i wan't to continue working as long as possible, but the PIP (which i had never heard of) and the blue badge (which i hadn't given a thought) are something worth investigating further, now. Thanks again, you've all been very helpful.


Also Apply for SMI simple mortgage interest payments. After 3 months of ESA, DWP will pay when you are eligible.

ESA have two groups which they hassle. Group one looking for work, group two don't bother this group as no longer able to work. PIP got me into group two, I think.

With PIP you get reduced car tax RFL or help with a lease car. PIP interview is done by a 3rd party. Ham it up. Be the worse you can be.

Look at Council tax relief for low incomes. You may be already eligible. I was whilst working.

As yet have not found anyone offering to "Register Disabled". Is it a collective thing? When OT, GP and others all agree you need help, perhaps you gain that status.

Blue Badge opens many doors, figuratively.

My council do a Facilities Grant, where they pay for major adaptions to your home. Ask through your OT. Local council also do a quick home repair job offer. They fitted grab handles and changed a troublesome external bulb.

AgeUK offered an financial audit which missed SMI, which is most of the above.

Apply for all these while you can.

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Hi Nick..... I am registered Disabled and was medically retired by my GP back in 2003..... I live in Kent, so applied for my blue badge to Kent County Council. You need to apply to your county town council for a blue badge, it used to be free but I think there is a £10 charge now.

Regards Don.

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