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!
Robyn
__________________________________________________ ______________________________
Benefits
Much of this is covered on the website of MNDA http://www.mndassociation.org/life_w...nce/index.html
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
Other
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
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!
Robyn
__________________________________________________ ______________________________
Benefits
Much of this is covered on the website of MNDA http://www.mndassociation.org/life_w...nce/index.html
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
Other
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
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