Disability Living Allowance is a grant that may be paid every four weeks, on application, by the Department for Work and Pensions (DWP), to help families achieve the extra care that children with complex conditions require to ensure that they fulfil their potential.
The allowance does not depend on how much the family earns (i.e. it is not means tested), it is paid where the needs of a child are over and above the normal needs of a child of the same age.
Your child’s heart condition does not make them automatically eligible for support, instead the DWP look at how their condition affects how they live their life. This means that you are not automatically entitled to this benefit; you have to prove how your child’s care or mobility needs are different to those of another child of their age, and how their diagnosis affects them on a day-to-day basis.
Little Hearts Matter has been asked to help with these claims by parents and members of the cardiac teams that look after the children, as the questions can be complex and daunting.
We hope to offer help to all those who have to complete these complex forms. Included in the information are some sample answers and points to consider when thinking about a child with a single ventricle heart condition. Anyone applying needs to be prepared to take time when completing the form and be in the appropriate frame of mind. It can be stressful and upsetting filling in the details of your child’s restrictions so be kind to yourself and take it slowly. Remember that you can always contact the Little Hearts Matter office on 0121 455 8982 if you would like help at any stage of the process.
It is important to remember when completing DLA forms that each child with single ventricle heart disease is different. The following suggestions of information to include in your application are only general rules and ideas. Some children will have a better quality of life, some a more difficult one.