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Disability Living Allowance (DLA)

Little boy with ED  sat on the floor not directly looking at the camera but head turned looking to the distance

Any child who has a disability or illness might qualify for Disability Living Allowance (DLA). 

You don’t need to wait for a formal diagnosis to make a claim. It is sufficient that they have some form of disability.

However, you will need to show that your child needs substantially more care or supervision than other children of the same age who don’t have a disability or health condition. Any decision to award DLA will be based on how your child’s condition impacts on their day-to-day life.

Families we have helped describe getting this benefit as ‘life-changing’.

DLA is a tax-free benefit made of 2 components (parts) ‘the care component’ and ‘the mobility component’. You may be entitled to receive one component or both.

You can claim DLA for a child from the age of three months if they need more help or supervision than other children of the same age, or from birth if your child has a terminal illness.

You can get DLA for your child regardless of whether you are working or not. It isn’t means-tested, so it does not matter what income or savings you have.

To be eligible for DLA you must need help for 3 months prior to making a claim, and are likely to need it for at least another 6 months.  It is not necessary to wait for the three month qualifying period to be completed before making the claim.

The rate of DLA received depends on the amount of attention needed and the sort of help or supervision needed.  For example, someone to keep an eye on them, help with tasks such as washing, dressing, communicating with other people, reminding or prompting or encouraging to do things (but this may depend on how much help they need) or other similar activities. 

Completing the DLA form

There is a specific form for claiming Disability Living Allowance (DLA) for a child: the DLA1 Child form. However, it’s better to phone the DLA helpline and ask for this form, rather than downloading it yourself.

This is because they will stamp the form with the date you made your call. If your child qualifies for your DLA, you’ll get it from this date. (DLA can’t be backdated beyond this). If you don’t call, the earliest you can get DLA from is the date the benefits office receives your completed form. It can take time to complete the form and get any medical evidence you may need. So it’s always better to call and ask them to send you a form.

You can order a claim form from the DLA Unit by calling 0800 121 4600. If you’re in Northern Ireland, call 0800 587 0912. You have six weeks to complete and return the form.

Keeping a diary

We recommend that you keep a diary for a week before tackling the form. This will be useful for providing evidence of your child’s extra needs.

It will also help you think about all the extra things you have to do for your child and how long this takes – particularly if they have bad days and good days.

Write down your child’s difficulties, the help or care you gave and how long it took. (You might want to keep a diary for longer than a week.)

Keeping a diary like this can really help when filling in the forms. You can also send it with your application as evidence if you wish. 

You can use this DLA Diary here – it covers 7 days and gives you tips on what to write down. 

Words Used in DLA Rules

To assess what rate of DLA should be paid, some of the words in the rules have a specific meaning:

Bodily functions

Includes anything to do with how the body works, like breathing, eating, drinking, hearing, seeing, walking, sitting, dressing, undressing, washing, bathing, toileting and sleeping. If the help can be done in another room, away from the child, it is unlikely to count unless it is closely connected to something personal, for example changing bedding after a child has wet the bed.

Supervision

Someone present to prevent any accidents or harm to your child or others.

Substantial danger

There must be a realistic possibility that without supervision your child could seriously risk harming themselves or others. This situation may arise infrequently or be a one-off.

Night

Starts from when the whole household goes to bed and ends when everyone gets up. Normally it is assumed to start around 11pm and end around 7am.

Getting a DLA decision

Once you’ve sent your completed form to the office dealing with your DLA claim, the Department for Work and Pensions (DWP), or Social Security Agency (SSA) in Northern Ireland, will send you a letter telling you their decision.

There are 3 rates awarded for DLA:

DLA Care Component

The rate the child gets depends on the level of looking after they need eg:

High Rate  –  help or supervision throughout both day and night, or they’re terminally ill

Middle Rate  –  frequent help or constant supervision during the day or  supervision at night

Low Rate  –  help for some of the day or night

DLA Mobility Component:

There are 2 rates for the DLA Mobility Component:

High Rate  –  they can’t walk, can only walk a short distance without severe discomfort, could become very ill if they try to walk, they’re blind or severely sight impaired

Low Rate  –  they can walk but need help and or supervision when outdoors

There are also age limits to receiving the mobility component:

  • lowest rate – the child must be 5 years or over
  • highest rate – the child must be 3 years or over

The rate the child gets depends on the level of help they need getting about, for example:

  • lowest rate – they can walk but need help and or supervision when outdoors
  • highest rate – they cannot walk, can only walk a short distance without severe discomfort, could become very ill if they try to walk or they’re blind or severely sight impaired

Remember all children need some help and supervision when they are out of doors, therefore the child must need more help or supervision than others of the same age.

Children under 16 must require substantially more guidance than other children of the same age in normal health.  The term “virtually unable to walk” is assessed by considering the distance, speed, length of time a person can walk, the manner of walking and the degree of discomfort caused.  For example, the child is aged 5 or over and can walk, but needs someone with them to make sure they are safe or to help them find their way around in places they do not know well.

It may be possible to claim mobility allowance if the child is restricted by tightness of skin, if the soles of their feet are badly affected, if they are too hot or cold to the extent that their muscles are painful and will not function normally, if they are lethargic from the heat or cold, or are unable to walk without discomfort or in danger of overheating.

As at April 2024 the weekly rates of payment are:

DLA Mobility Component per week              DLA Care Component per week

High Rate               £75.75                                High Rate               £108.55

Low Rate                £28.70                                Middle Rate            £72.65

                                                                         Low Rate                £28.70

What if I’m not happy with a DLA decision?

A young boy with ED wearing a bright orange jumper, looking directly at the camera and stood in front of a rhino grazing If your child is refused DLA or awarded it at a lower rate than you expected, you may wish to challenge that decision.

Firstly, you can ask for a decision to be looked at again. This is known as a ‘mandatory reconsideration’ request, and you can do it by phone or in writing. If you want to do it in writing, you can either use form CRMR1 form or send a letter. You must normally ask for this within one month of the date of the decision you are challenging. Late requests will sometimes be accepted.

If you are still not happy with the outcome of the mandatory reconsideration, you can request an appeal. You must do this either online or in writing using an appeal form (form used in Northern Ireland). You must normally do this within one month of the date on your mandatory reconsideration decision. Late appeals will sometimes be accepted.

Additional Help

DLA and PIP can act as a gateway to additional types of financial help.  For example, if you are in receipt of income support or housing benefit and you successfully claim DLA or PIP, you should qualify for the relevant disability premiums used in calculating entitlements to these benefits (e.g. disability premium, disabled child premium).  This should lead to higher payments.

For more information on DLA, other benefits, and what to do if your claim is unsuccessful, please read our leaflet Claiming Benefits for Individuals with Ectodermal Dysplasia or email us.