Claiming disability living allowance for your child

The good news: DLA could make a huge difference to the care of your child. The highest rate for the care component is £89.15 a week as of 2020. It is tax-free, is not means tested, and does not depend on having paid National Insurance contributions.

The bad news: the rules are complicated and the application form is an exercise in persistence that can feel really depressing. It might be the first time your child has been described as ‘disabled’.

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 same application form covers the two components. You can apply for both.

You can claim the care part of DLA for your child from three months of age.

You can claim higher rate mobility from the age of three and lower rate mobility from five years old.

If your child is awarded the benefit they might be reassessed in the future.

These are the grades of payment:

Care component weekly rate

Highest rate  £89.15

Middle rate  £59.70

Lowest rate  £23.60

Mobility component weekly rate

Higher rate  £62.25

Lower rate  £23.60

Get the pack as soon as possible: DLA cannot be backdated beyond the date you first asked for this.

To apply you can either:

• print off and fill in the DLA claim form
• phone the Disability Living Allowance helpline and ask for a printed form

Disability Living Allowance helpline
Telephone: 0800 121 4600
Textphone: 0800 121 4523
Relay UK (if you cannot hear or speak on the phone): 18001 then 0800 121 4600
Video relay service for British Sign Language (BSL) users – check you can use this service
Monday to Friday, 9am to 5pm
Find out about call charges

The process is different in Northern Ireland.

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.

If you think you qualify for DLA apply as soon as possible (the links are at the bottom of this section).

The claim pack will have a date and your benefit will be back-dated to then. Don’t be put off by the size of the claim pack. Take your time to complete it.

Before you start:

• Keep a diary of everything you help your child do over a week.
• From changing nappies to feeding to taking medicines, to moving between rooms, write down EVERYTHING.
• Note all hospital, doctor and therapy appointments your child has to attend.
• If you have time, let the experts know you are applying for DLA because they may well be contacted to confirm what you have written.
• Buy a ring binder – it could be your best friend.
• Photocopy any letters or forms you send to the Department of Work and Pensions (the Government department that will assess your claim).
• Make a note of any phone calls you have with the DWP, the name of the person you spoke to, their phone number and the date, and keep that in the ring binder.

Filling in the form:

• To qualify for DLA your child’s needs have to be ‘substantially in excess of the normal requirement’ of children of the same age.

With each question you answer give details of why they can’t do something.

Explain why they would benefit from help, what would happen if they didn’t get the help. Then spell out what a non-disabled child of their age would be capable of doing.

You have to portray things at their worst. For example: My child cannot play unsupervised outside and needs to be monitored to make sure they are protected from harmful risks.  This would not be needed for a child unaffected by CGD.

• The form asks you to explain when your child’s needs vary. For example, if you only have to care for them at night or if their behaviour varies from week to week.

Again this is emotionally tough.

Describe your child’s worst days. For example: “Having lots of infections drains my child’s energy. On bad days my child cannot get of bed at all because he his so tired. On better days he can get out of bed, but only slowly and with rest between moves.”

It’s difficult for a parent but you have to emphasise that “better days” are still difficult.
 For the purposes of this form ‘night’ means between 11pm and 7am. Your child needs help for at least 20 minutes or twice a night for it to count.

• If you need to include additional sheets of paper to tell your child’s story do so. Make sure you write their name on the top of each piece.
• Photocopy the form before you start and fill in a first draft. Don’t tackle it all at once, set aside an hour a day to tackle different sections.
• Make sure you tick every tick box that applies to your child, if you don’t tick a box the decision maker won’t read the comments.
• Combine all you responses in one binder as this makes it more difficult for the assessor to disregard your input.

PART 4:

You need to list every condition your child suffers as if they were separate illnesses. 
So your child’s main diagnosis might be CGD but if they also have gut problems, skin abscesses and lung problems as symptoms list those too.

Include any emotional issues they have such as anxiety. You need to say which medicines your child takes.

PART 5:

You will be asked which specialists see your child. List them all from consultants to physiotherapists. You can include care plans devised by these specialists but if you feel they over-optimistic about your child’s prognosis you might wish to leave them out.

PART 6:

You are asked to evaluate your child’s mobility needs. You need to explain if your child can’t walk at all, if they have trouble with kerbs, or if, for example, they walk much more slowly than their peers. Does it exhaust them after walking a short distance? If so, how far?

PART 7:

Asks if your child needs someone with them when they are outdoors.
This refers to places unfamiliar to your child.

An example would include not playing in areas that are high in fungal spores such as outdoor areas with damp leaves.

PART 8:

Does your child need someone keeping an eye on them? You have to prove they do need continual supervision.

PART 9:

This asks about your child’s development.

It’s important here to contrast their progress with age group peers. Are children the same age able to more than your child of the same age?

Explain what help they could use and why they can’t manage without this help.
Your child might need to take special precautions e.g. to prevent infections.

PART 23:

When your child is in bed. This is crucial because it might determine which level of benefit you receive.

Go into detail. Explain for example they might need liquid medicines through the night and why those can’t just be left by the bed.

PART 26:

Who would you like to tell us about the child’s illness? Here give details of the person who knows most about your child’s condition. You might want to ask them to give you the evidence so you can attach it to the form. In many cases the Department of Work and Pensions do not ask anyone except your child’s GP, and perhaps not even them, for evidence.

PART 27:

Anything else?

Use this space to tell that person behind the desk who doesn’t know your family what effect your child’s CGD has on them.

Perhaps give a diary of their day so you can spell out your child needs help ‘frequently’ not just once or twice a day.

SPECIAL RULES:

If your child has a life-limiting condition and doctors do not expect him or her to live longer than six months you may apply for DLA under ‘special rules’.

This means your claim will be fast-tracked, your child will receive the highest rate care allowance. Payment is made straight away if they are cared for at home.

+ What happens if my child’s application is rejected or I feel it is wrong?

You will be notified by post once a decision is made.

If you are not happy you can appeal but you have to do it within one month of the decision.
 There is a risk that your child’s DLA could be reduced if you are appealing against the banding in which they have been placed.

If you do decide to appeal its worth knowing more than 50 per cent of all DLA appeals are successful.

Ask for a written explanation of why your child was turned down.

You can ask for your application to be revised – looked at again by the same department. Or you can go to appeal.

Appeal means your case will be looked at by a panel of legal, health and social experts.

The panel can take written or oral evidence.

To appeal in writing use the forms available from the government website.

In either case adjudicators can only look at the evidence as it stood when you applied for DLA. If your child’s circumstances have changed you might consider reapplying.

If you decide to give oral evidence you will be given two weeks to prepare your case. Try to get some expert advice, for example, from the Citizen’s Advice Bureau.

Take care not to contradict your original submission.

For detailed advice on how to appeal go to www.benefitsandwork.co.uk or contact the CGD Society at hello@cgdsociety.org and we will provide information on the appeal process.

+ What happens if my DLA is downgraded or withdrawn?

You can appeal. See above.

+ What happens if my child goes in to hospital?

DLA is paid for 84 days if your child goes into hospital. Then it is withdrawn. The mobility component stays.

Although you will inevitably be spending some if not all of your time with your child, the government reasons that the NHS is funding care for your child.

It is your responsibility to inform the Department Of Work And Pensions.