Made by a PURA parent in the UK. Information only, not medical advice. Read our disclaimer.

Benefits, grants & funding

Applying for DLA for a child with PURA syndrome: a practical guide

How Disability Living Allowance for children works in England and Wales: who can claim, how to describe your child's needs, when payments start, and what to do if you disagree.

By PURA Family Directory team · published

Information only, not medical advice. Every child with PURA syndrome is different. Please talk to your child's own doctors and therapists before making decisions about their care. In an emergency call 999; for urgent advice call NHS 111. Our disclaimer.

What DLA is

Disability Living Allowance (DLA) for children is a tax-free benefit that helps with the extra costs of looking after a disabled child. It has two parts: a care component and a mobility component (GOV.UK rates). Contact explains that it is not means-tested, so your income and savings don't matter. You don't need a formal diagnosis to claim. The decision is based on how your child's condition affects their day-to-day life.

Who can get it

According to GOV.UK, your child must be under 16 and living in England or Wales. They must need much more looking after than a child of the same age without a disability, or have difficulty getting about. They must usually have had these needs for at least three months and be expected to have them for at least six more. Contact notes that the care component can usually start from three months old and the mobility component from age three.

In Scotland, apply for Child Disability Payment instead. In Northern Ireland, see nidirect.

How to claim

In England and Wales, you can print the claim form or ask for one by phoning the DLA helpline on 0800 121 4600 (GOV.UK). Tip: GOV.UK says DLA can't be backdated. But if you phone for a form and return it within six weeks, your claim starts from the date you called. Calling first can protect a few weeks of payments while you fill it in.

Describing your child's needs

The form asks about care and supervision day and night, so be specific and honest about a typical day. Families of children with complex needs often mention:

feeding: how long it takes, tube feeds, reflux, choking risk;

seizures and the supervision they need, including at night;

moving, positioning, lifting and equipment;

communication: how your child tells you they are in pain or need something;

sleep, medicines and appointments.

Contact advises getting specialist help with the form, especially for babies. Its free helpline can support you. Include copies of supporting letters, such as your child's diagnosis letter or therapy reports, rather than originals.

After you apply

GOV.UK says you should get a letter within three weeks confirming your application, and then a decision letter. If you disagree with the decision, you can ask for a mandatory reconsideration. Getting DLA can also open other help. For example, GOV.UK says you might qualify for Carer's Allowance if you care for at least 35 hours a week for a child who gets the middle or highest care rate.

Questions families ask

How much is DLA?

It depends on the level of care and mobility help your child needs, and rates change each year. See the current figures on GOV.UK's DLA rates page.

Does having PURA syndrome mean my child automatically qualifies?

No. DLA is based on your child's needs, not the name of their condition. A diagnosis letter and clear descriptions of their care can help.

Sources

Checked 1 November 2026. Rules, rates and services change, so always check the latest version.

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