Benefits – Introduction

There can be many extra expenses involved when you are looking after a child with a single ventricle heart condition, for example with feeding, warm clothes for winter and frequent hospital trips.

Little Hearts Matter has a Benefits booklet, available by contacting us on the Little Hearts Matter helpline 0121 455 8982, email us at info@lhm.org.uk or you can download it here. We hope that this information will help to point you in the right direction of some of the sources of funding which may be available to help families with disabled children.

We can’t guarantee that you’ll be eligible for everything listed in our booklet, so please contact the relevant organisation directly to explain your circumstances and make sure that it is worth your while to apply, and to make sure the information we have given is still correct as many of these things change regularly.

When your child reaches the age of 16, they are entitled to claim certain benefits in their own name. However, it is very important that you seek proper advice about whether they should get benefits in their own right, or whether you will be better off as a family if you continue to claim on their behalf if they are still in full-time education.

If you would like to discuss benefits and entitlements in general, you can contact Little Hearts Matter, your Cardiac Liaison Nurse or hospital Social Worker. Other general sources of information are your local Citizens Advice Bureau, Social Services, your child’s community nurse, a specialist health visitor or the nurses and health care assistants on hospital wards. It can be worth chatting to these people to find out whether they have any ideas or experience. Two useful websites for general searching are the government website www.direct.gov.uk and the Citizens Advice Bureau (CAB) website www.adviceguide.org.uk (the CAB site has separate sections for England, Wales, Scotland and Northern Ireland).

Another general information point is Contact A Family, a charity supporting families with disabled children. They have a helpline called ‘pounds for parents’, which is to ensure that families with disabled children claim the benefits and tax credits they are due. The helpline can be contacted Monday to Friday 10am - 4pm, and Monday evenings 5.30 - 7.30pm. Tel: 0808 808 3555 (freephone) or email helpline@cafamily.org.uk. To find out more, visit this page or this page of the Contact A Family website.

Disability Living Allowance

This is a benefit which consists of two components - personal care and mobility.

The Personal Care component relates to whether a baby or child needs more care than a non-disabled child of their age. It is paid at three different levels, depending on the amount of extra care needed during the day and night, and can be claimed from the age of 3 months.

The Mobility component is for children who are unable or virtually unable to walk at age three, or who need guidance or supervision when walking out of doors at age five.

This is a very worthwhile benefit, but the application process is complex and time-consuming.

Please visit our Useful Links page for further information about this benefit and download our updated DLA Guide here, our Top Tips here and our sample form here. You can also contact the office for assistance with your application.