Terminal Illness

Unfortunately, sometimes children are diagnosed with conditions which are terminal or life-limiting. This is obviously a very difficult time and thoughts of benefits may be the last thing on your mind right now. Unfortunately, the costs associated with a sick or disabled child can be higher than expected which is why it is important to ensure your child receives what they are entitled to.

Eligiblity

If your child has a terminal illness and is not expected to live for more than 12-months there is an expedited application process for DLA. This is sometimes referred to as the “Special Rules” and the aim is to enable claimants to get the benefits they are entitled to quicker, at the enhanced rates and without assessments.

HOW TO CLAIM

How to Claim

You should start the DLA claim in the same way as any other DLA claim.
You can claim DLA in two different ways – by phone and then returning the form to the DWP or by downloading the form and sending it to the DWP.

We would advise that you start your child’s claim by phone instead of downloading the form. This is because when you phone the DWP that day counts as the start date for the claim. If you download the form yourself and send it back, the start date for the claim is the day the DWP receive and process the form. This could mean your child misses out on a few extra weeks of DLA payment and you could miss out on other benefits or benefit top ups if their claim is successful.
For example, if you phone the DWP on the 23 May, that date is the start date of the DLA claim even though you may not return the form until June.
If you download the form on 23 May and send it to the DWP after taking some time to complete the form and they receive it on the 14 June, the 14 June will be the start date of the claim.

If you want to start your child’s DLA claim by phone you can call the DLA helpline on:
0800 121 4600 (telephone) or 0800 121 4523 (textphone)
You can also use Relay UK with an app or textphone if you can’t hear or speak. You can type what you want to say then 18001 then 0800 121 4600. You can find out more about Relay UK here.
The phone lines are open Monday to Friday 9am to 5pm, except Bank Holidays and calls are free from both landlines and mobile phones.

If you want to download the form online, you can do so here.
You can also look at the form using the link above to find out what type of questions are asked so you are familiar with the information you will need to provide once it arrives.
Once your child’s form arrives you will be given a date to return it by. This is usually about 6 weeks.

You should be given an envelope to return the DLA form in but if you do not receive one or misplace it the address to return the completed form is:
Disability Benefit Centre 4
Post Handling Site B
Wolverhampton
WV99 1BY

The SR1 Form

In order for the DWP to assess your child’s DLA claim under the Special Rules you will need to send a copy of a form called an SR1. It used to be called a DS1500. The form must be completed by:

a GP
a consultant
a specialty doctor
a hospice doctor, or
a senior specialist nurse (such as a clinical nurse specialist, advanced nurse practitioner or similar)

Completing the SR1 form

There is no cost for getting the SR1 form completed. You cannot download an SR1 form. Your GP, hospital or hospice should have the forms available and should be able to complete it and return it to the relevant department through email, post or via the NHS Spine Portal.
Remember, if your child is terminally ill they do not need to have lived in the UK for 104 out of the last 156 weeks (2 out of 3 years) but you will need to show that England, Scotland or Wales is where they usually live, also known as being habitually resident.

How much?

Your child should be awarded the higher rate of care for DLA which is £101.75 per week.
Depending on how your child is able to get around they may also be entitled to the mobility component of DLA which is either £26.90 or £71 per week. Your child still needs to be over the age of 3 to be awarded the mobility component of DLA.

How long?

Once the DWP have both the DLA form and the SR1 form they should make a decision within 2 weeks.
If it has been more than 2 weeks, you can contact the DLA Helpline Monday-Friday 9am-5pm:
Telephone: 0800 121 4600
Textphone: 0800 121 4523
Relay UK – if you can’t hear or speak on the phone, you can type what you want to say: 18001 then 0800 121 4600

The Decision

You should be sent a decision letter telling you how much DLA will be paid and for how long.
If you disagree with the decision, you can challenge it. For more information see our page here (will need to link to the page about Challenging Decisions).