DLA could make a huge difference to the care of your child living with vascular EDS. The highest rate is £82.30 a week.
Qualifying for DLA might also enable your family to qualify for other benefits, such as the disabled element of child tax credit.
Unfortunately, the rules are very complicated and the application form is an exercise in persistence which can feel depressing. It might be the first time your child has been described as ‘disabled’. We strongly advise you contact the Citizens Advice before attempting to complete the form as every area is different.
The benefit is split into two parts: care - for children who need more looking after than is usual - and mobility - for children who have trouble getting around more than is usual.
The two components are covered by the same application form. You can apply for both.
DLA can be claimed by anyone under 65 years who has personal care and/or mobility needs as a result of a mental or physical disability. You might not consider your child ‘disabled’ but if they have a long-term illness such as vascular EDS then they might still be eligible.
You can claim the care part of DLA for your child from three months of age and can claim higher rate mobility from the age of three and lower rate mobility from five years old. It is tax free and is not means-tested. If your child is awarded the benefit they might be reassessed in the future.
DLA for adults will be phased out between 2013 and 2016 and replaced by a Personal Independence Payment. DLA will remain for eligible children under 16 until further notice.
|Care component||Weekly rates|
|Mobility component||Weekly rate|
The worst aspect of answering the 65 questions the DLA application form asks is having to repeatedly paint the bleakest picture of your child’s needs.
Rather than hailing their achievements you have to describe in detail what they can’t do and how that affects your family. This goes against every instinct as a parent but consider this: someone behind a desk is making a decision about your child, someone they don’t know.
You are the best person to describe to them your child’s difficulties and the repercussions they have on the rest of your family.
You can’t afford to omit any details. Describing the worst aspects might make the difference not only between receiving DLA or not but also the rate your child receives.