Benefits – Introduction

There can be 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. To help with these costs there are benefits you may be able to claim. Little Hearts Matter has a booklet called ‘Benefits: a guide for parents’ which gives more information.

To download or order this booklet click here.

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.

Disability Living Allowance (DLA)

DLA consists of two components, personal care and mobility. To claim this benefit, you need to demonstrate that your baby/child’s needs are different to a child of their age. This is done through a long and detailed application form showing how their diagnosis affects them. Contact the Benefits Enquiry Line (telephone 0800 88 22 00) to get a claim form.

Download our DLA Pack below

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 child sample form here. You can also contact the office for assistance with your application.

DLA Personal Care

Can be claimed when your baby is three months old

Three different levels of award, depending on the care your baby/child needs during the day and night.

DLA Mobility

The higher rate of Mobility allowance can be claimed when you child is three years old, if your child is “unable or virtually unable to walk”.

Carer’s Allowance

If you look after a disabled person and are unable to work, or only have low income, you may be able to claim Carer’s Allowance. Your baby/child must be getting the DLA Personal Care component at the middle or highest rate, and your earnings must be less that £100 per week after certain deductions have been made (rate correct at April 2010).

Child Tax Credit

An extra amount is added to your CTC calculation for each child who receives DLA. You will need to tell HM Revenue and Customs about your child’s DLA entitlement and the rate you get.

Other Funding

There are other funds which may be available. Contact us, your cardiac liaison nurse or your hospital social worker to discuss your needs. 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.

To open a printable PDF version of this information, click here.

Page updated: Sept 2011