You might not consider your child ‘disabled’ but if they have a long-term illness such as a PID or SID they may be eligible. Also don’t feel stigmatised by claiming DLA if your child qualifies you are entitled to it.
DLA covers children up to the age of 16 and is paid to the child’s main parent or carer. Under the new benefits system from April 2013 claims from people over the age of 16 years need to claim through the personal independence payment.
Qualifying for DLA might also enable your family to qualify for other benefits, such as the disabled element of child tax credit.
How we can help
This section gives you information on how to claim DLA and what it covers.
Please take time to look at the information below. It will help guide you through the process and If after reading you need more advice, please contact us and we will do our very best to help you.
Immunodeficiency UK, as a professional member of the Benefits and Work organisation, has access, through a subscription fee, to their comprehensive guides about a range of benefits. If you would like to receive a full copy of any of their guides e.g. on claiming DLA, dealing with the appeal process, challenging a medical report, then please email us at firstname.lastname@example.org.
These excellent guides really can help in improving the chances of your claim and in fighting any decisions that may go against you, so please do get in touch with us.
The good news: DLA could make a huge difference to the care of your child. The highest rate is £92.40 a week. 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
mobility – for children who have trouble getting around more than is usual.
The two components are covered by the same application form. 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 £92.40
Middle rate £61.85
Lowest rate £24.45
Mobility component weekly rate
Higher rate £64.50
Lower rate £24.45
Getting the DLA pack
Get the pack as soon as possible: DLA cannot be backdated beyond the date you first asked for this. You can:
- download a claim pack by visiting the Directgov website’s DLA page
- request it from the Department for Work and Pension’s (DWP) DLA helpline on 0345 7123456 or text phone on 0345 7224433.
- complete the form online at the DWP.
Filling in the DLA form
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 keeping their temperature regulated, 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: Dressing. ‘Joanna cannot dress herself because it causes her considerable pain in her hips and back to try to put socks, pants or trousers on’.
She needs someone else to gently ease her clothes on for her and be aware of her delicate joints. Without this help she would be unable to dress, if she tried she would be in danger of causing herself lots of pain. A child of seven would usually have been dressing themselves since the age of four.
- 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: “On bad days John 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.
Tips for specific sections
You need to list every condition your child suffers as if they were separate illnesses. So your child’s main diagnosis might be xx but if they also have aa, bb and ccc as symptoms list those too.
Include any emotional issues they have such as anxiety. You need to say which medicines your child takes.
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.
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?
Asks if your child needs someone with them when they are outdoors.
This refers to places unfamiliar to your child.
An example would include if they have balance issues.
Does your child need someone keeping an eye on them? You have to prove they do need continual supervision.
So, for example, a child with xxx wouldn’t be able to yyyy.
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.
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 why they need liquids through the night and why those can’t just be left by the bed.
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.
Use this space to tell that person behind the desk who doesn’t know your family what effect your child’s condition 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.
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.