Benefits & Grants

Benefits and Grants

When you first receive the diagnosis of Wolfram Syndrome it may seem that your whole world collapses in on itself and you have no idea of where to go for help or the professionals involved with your child’s care have limited knowledge of what support and benefits are on offer to you.

Hopefully the information on this page will help you. It isn’t an exhaustive list and you may come across some information that we don’t know about that we can share and will be of use to others. Some benefits come from the Government, some from your local council and some from your utility providers. It varies from area to area for some and also on the severity of the impairment.

The information and links here should be able to start you off.

PIP – Personal Independence Payment


‘How Your Disability Affects you’ form – Sense

Get support in work if you have a disability or health condition

Get help at work, including an Access to Work grant, if you have a disability or health condition – eligibility, how to apply.

TV Licence– If someone in the household is registered as severely vision impaired then you can apply for a half price TV Licence

Look on your local council’s website to see if you qualify for Council Tax Benefit. Many council sites will have a benefits calculator to see what you could be eligible for

Gov.UK has lots of information for parents of a child with a disability to adults. The benefits page includes things like Disabled Facilities Grant to help make adaptations to your home. More information can be found on the Carers and Disability Benefits page on the  Gov.UK website

Working Tax Credit and Children’s Tax Credit

RNIB have lots of information and a benefits calculator to guide you through the maze on their website. The calculators are very useful as you put in the information they request and it will tell you what benefits you can apply for. You can find out more by going to their web page here

Some utility companies offer discounts or capped rates depending on what benefits you receive.

Watersure Scheme – Water companies have schemes that will cap metered bills if you have a condition that means you use more than the usual amount of water for your household. Have a look and see if they offer this scheme for your area.  

  • Contact are a good organisation to get in touch with as they can also help to advise you regarding financial support via benefits or grants.
  • Family Fund The UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people.                                                                NOTE: Existing claimants please be aware the renewals are now every 24 months in England and Wales
  • Carers UKCarers UK is very easy to navigate, easy to understand language and seems to be kept up to date as its a national organisation
  • 31 money saving tips and discounts for people with disabilities from Martin Lewis Moneysaving expert
  • Thomas Pocklington TrustThomas Pocklington Trust (TPT) provides grants for a broad range of projects that support the delivery of positive outcomes for blind and partially sighted people around our key funding themes across the UK.

Benefits and Grants Webinar – 11th December 2020