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Sue & Rob's Guide to Benefits

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    Sue & Rob's Guide to Benefits

    Hi Everyone,

    Susie and Rob sent some really useful information to me earlier this week detailing their advice and experiences they thought would benefit others. It was really useful to us as feedback, and we'll hopefully be able to make use of it as an association... and they hope it may be of use to you all on the forum, too. I'm posting it on their behalf from their emailed documents to save them the job!

    __________________________________________________ ______________________________


    Much of this is covered on the website of MNDA

    Securing all the benefits we are entitled to has been most frustrating and long winded. We have qualified for 5 different benefits and it has taken 9 months to get them all in place. Nobody could tell us which ones we should get, so it was a case of applying for anything that looked likely. Each benefit has it’s own call centre, so when you phone they want 30-40 minutes for you to answer questions, at the end of which they say whether you should qualify or not. If you do they then send you forms to fill in the same questions and process your application which may take 8-12 weeks. If, on the phone, they say you don’t qualify, they have no expertise to direct elsewhere and you have to try another benefit and go through the same process and 30-40 minutes of questions again.
    We also found that sometimes we were given incorrect information, so in some cases, we have tried twice before getting a benefit. We spoke to somebody at our Council Offices about a Council Tax Rebate who assured us that we didn’t qualify. We tried again a few weeks later and after filling out forms have now received full rebate and pay no Council Tax at all.

    Disability Living Allowance

    The application for this is particulary long winded. Pages and pages of forms to fill in. As most MND sufferers progress fairly rapidly and this application can take 16 weeks to process, it is important to get these forms right. I would not advise anybody to lie on these questions, but you must describe your worst case scenario. How far can you walk, what help do you need at night, on a bad day? Also, when asked about your diagnosis, use the word ‘terminal’. By the time your application is processed, your condition will probably have deteriorated. If you don’t get on to the highest level of DLA, then appeal the decision as soon as you feel your answers have changed.

    Blue Badge

    Don’t forget to apply for this, it is SO useful
    Blue Badge parking permits let disabled drivers and passengers park nearer to where they're going - find out more about Blue Badges from your council


    There are many minor benefits once you have the Blue Badge. We have been to many events where I pay but Susie gets in free as my Carer. We pay no congestion charge when in our WAV. I have an Access for All card from the National Trust and Susie has a Cinema card for free seats for Carers. Going through Airports is brilliant once you’ve asked for special
    assistance, no queueing at Check In or Security and we’ve been upgraded to better seats several times.
    __________________________________________________ ______________________________

    More advice courtesy of Sue & Rob can be found at:

    Sue & Rob's Guide to Living Aids
    Sue & Rob's Guide to Wheelchairs, Scooters & Adapted Vehicles
    Sue & Rob's Guide to Housing
    Last edited by Guest; 17 May 2011, 10:27. Reason: adding thread links as they are created

    Thet seriously need to look at the benefits sytem regarding MND


      We have a whole host of campaigns going on looking at health and social care issues. You can see what's going on in these areas, all in one place here:

      I hope that's of interest to anyone else looking into this area.



        council tax

        hi everyone,
        Tried and failed twice to get my local council to reduce or suspend council tax. Have been told that the house needs to have major adaptations before consideration will be given. Then, if approved, we would be re banded one band lower. No chance of not having to pay at all, as Sue suggested her council does. Is this post code lottery or misinformation?



          Hi there,
          We are about to have major adaptations to our house - lift and wet room but were financially assessed and were granted council tax exemption.
          Our joint savings (me and husband) were below the threshold (dont know if this varies from council to council) and we are totally on benefits - they assess you on what income you have coming in (ie if you have a private pension etc. it may take you over the threshold).
          We were having real difficulty getting the right information and told different things all the time. However, I started attending my local hospice
          one day a week which is really brilliant and they have people there that do all the form filling for benefits and they got it sorted in a couple of days - you can get referred to your hospice via your GP or social services. My hospice provides so many benefits and has taken a huge weight off of our shoulders plus its somewhere i can go once a week and relax whilst my partner gets a break - I was unsure about going but I now look forward to it.
          Hopes this helps.
          Last edited by Guest; 29 July 2011, 13:10.


            What the council won't tell you is how to get a disabled reduction. To get the reduced disabled rate you need to have a room within your home where you store equipment i.e. wheelchair...In my case I store my wheelchair in my bedroom and get a 15% (I think) reduction.

            Check out the following links and How to check eligibility

            Most Councils have a online benefit calculator so you can check if you eligible.


              Council tax

              Many thanks, Vanessa. I will pursue that one armed with your info.
              Best wishes.


                Good stuff, Jeannie. I'm on a roll now!
                Kind regards.