Congenital heart disease: Changes to Disability Living Allowance for children from 1 February 2017
If you received a Disability Living Allowance (DLA) decision for your child between February 2017 and October 2020 and your child has congenital heart disease, you could be entitled to a review.
The eligibility for Disability Living Allowance (DLA) for children looks at what additional support a child with a disability or health condition needs. The assessment considers if a child has difficulties walking or needs much more looking after than a child of the same age who does not have a health condition or disability.
The Department for Work and Pension (DWP) has specially trained case managers. They will look at what additional support your child needs for mobility and care.
In February 2017, medical guidance was created to support those case managers to make DLA awards for children with congenital heart disease (CHD). This guidance was updated in October 2020 and has been in use ever since.
Who may be affected
You might be affected if you received a DLA decision for your child between February 2017 and October 2020 and your child has congenital heart disease.
You are not affected if:
- you were awarded the maximum rate available (the mobility component is not available to children under age 3)
- the decision was taken to tribunal
What will happen next
The department will review DWP decisions made between 1 February 2017 and 13 October 2020. The review will use the 2020 CHD guidance to see if your child should have a different award.
The department wants to make sure children with CHD receive the DLA benefit they were entitled to.
Changes to your child’s DLA award
If your child’s award increases during the review, they will receive a back payment.
A DLA award will not decrease because of this review.
What people should do if they think they’re affected
Due to data protection and personal information retention rules, the department has not been able to identify or contact everyone who may be affected by this change.
You can contact DWP and request a review.
Who can request a review
You can request a review, if you believe you are affected by this change and are:
- the parent or guardian of a child who is still under 16
- an appointee for a child if they are now over 16
- now over 16, able to manage your own affairs and do not need someone to act for you
How to request a review
Contact Disability Living Allowance for children and ask for a review. Explain your claim could be affected by the DLA CHD administrative exercise.
You’ll need your child’s reference number or National Insurance number. You can find this on any letters DLA have sent you.
By phone:
DLA Congenital Heart Disease helpline
Telephone: 0800 904 7413
Textphone: 0800 121 4523
Relay UK (if you cannot hear or speak on the phone): 18001 then 0800 169 0310
British Sign Language (BSL) video relay service if you’re on a computer - find out how to use the service on mobile or tablet
Monday to Friday, 10am to 3pm
Find out about call charges
By post, send a letter to:
Freepost DWP DLA Child
Do not write anything except the freepost address on the envelope. You do not need a postcode or a stamp.
You should quote ‘DLA CHD administrative exercise’ and you must include:
- your child’s reference number or National Insurance number on each page you send us
- your child’s name and date of birth
- your name and address
- a contact telephone number
- copies of any information you have about the claim you want us to review, including any letters you have from DWP
What happens after you’ve requested a review
The DWP will contact you if they need more information.
They will let you know if your claim is eligible for a review and there has been a change to your child’s award. If they’re eligible for a back payment, this will be sent by bank transfer.
If you apply for a review by post, and have not received a response after 4 weeks, contact the DLA Congenital Heart Disease helpline.