My previous experience as an adviser with Citizens Advice has been so useful, and I’d recommend anyone in the UK with questions about the benefit entitlements to look on the Citizens Advice website in the first instance, and then to get in contact with their local service for more detailed information or support if required. Citizens Advice provides a service that is independent, impartial, confidential and free:
https://www.citizensadvice.org.uk
There are many other sources of information about applicable benefits and the MND Association covers the subject too. There are two main types of benefit that someone with MND may be entitled to receive:
Income replacement benefits provide support to people who are unable to work, for instance as a result of illness or disability and include ‘New Style’ Employment Support Allowance (which may be means tested depending on circumstances and recent work history). To claim ESA you must be aged 16 or over, be under State Pension age, and live in England, Wales or Scotland. People under State Pension age may also qualify for Universal Credit and a reduction in Council Tax.
Disability benefits are not means tested. People diagnosed with MND who are under State Pension age should be entitled to receive Personal Independence Payment. This goes some way to compensate for the extra costs associated of being disabled. There are two elements to PIP to take account of Daily Living and Mobility needs. Once someone is in receipt of PIP it continues to be paid beyond state pension age. People who are over state pension age cannot apply for PIP; instead they’ll be directed to claim for Attendance Allowance with is paid either at a higher or a lower rate depending on circumstances.
It’s worth noting that people who receive the Mobility element of PIP can ‘trade’ it in through the Motability scheme to gain access to mobility scooters, power wheelchairs, adapted vehicles and wheelchair accessible vehicles etc. Sadly, the Motability scheme is not available for people who receive Attendance Allowance, so an application for PIP while below state pension age can be highly beneficial.
Applications for PIP and Attendance Allowance can be fast-tracked based on ‘special rules’ if a doctor or specialist centre completes a DS1500 report. To receive benefits under the special rules, you must meet the DWP definition of terminal illness which is that death could be ‘reasonably expected’ within six months (shortly to be changed to twelve months). The completed DS1500 means the DWP will fast track the application (usually at enhanced rates automatically)and it’s not necessary to complete the long and complicated application forms. If an application isn’t successful via the special rules, PIP and Attendance Allowance can be applied for in the normal, slower way; in which case I’d strongly advise getting assistance to complete the form from Citizens Advice.
If someone receives PIP or Attendance Allowance, a person providing care for 35 hours or more per week will be entitled to receive Carer’s Allowance. However, it’s worth noting that if the carer receives income from other sources, or State Pension of more than £67.25 per week, then they won’t be eligible. There are other criteria to be aware of so it’s really important to check the details.
Other benefits may be ‘passported’ to people who receive PIP or Attendance Allowance. These include a Blue Badge for easier parking, free vehicle tax via the DVLA, and exemption from the London Congestion Charge. A reduction in Council Tax may be triggered once certain home adaptations have taken place.
I haven’t really explored financial assistance available under the Disabled Facilities Grant scheme as I know our income and savings exceed the threshold. Therefore, we are having to fund all the alterations to our home including those to enable me to continue to use the bathroom and access a bedroom via a through the floor lift (if and when required). People who do qualify however, can expect to receive up to £30,000 towards the cost of home adaptations. It sounds a lot, but it doesn’t really go too far if you are considering having to extend a home to provide new facilities downstairs.
The MND Association provides some non-means tested assistance, and it’s really worthwhile exploring this locally.