Your right to financial and practical help may not readily occur to you when you first realise your child has serious and long-term health problems. Seeking advice on what may be available is important since both the Department for Work and Pensions (DWP) (formerly the Department of Social Security) and the local authorities assess each case individually and decisions can take a long time to be made. If your child has been diagnosed as having liver disease you may or may not be eligible to claim either Disability Living Allowance (DLA) or Personal Independence Payment (PIP).
Disability Living Allowance (or DLA for Children) is a tax-free social security benefit for children and young people under the age of 16 with an illness or a disability who need:
- help with getting around, or
- help with personal care, or
- help with both of these
Specifically, help that is significantly more than what a well child or young person of the same age would need.
The possibility, or even certainty, of future increased needs due to the progression of a condition and anxiety caused by the child or young person’s illness does not count towards eligibility for DLA. It is assessed only on any additional care that the child or young person needs now and for the next six months. It is not affected by any money the child or their family might have as income, or by any savings they might have.
Personal Independence Payment (PIP) is a tax-free social security benefit for all people over the age of 16 with an illness or a disability who need:
- help getting around, or
- help with personal care, or
- help with both of these
For more information on DLA, PIP and the difference between the two, visit www.gov.uk/disability-living-allowance-children.
There are various people who may be able to advise you on this matter. Locally, you could ask your health visitor, GP, social worker, hospital social worker or social services and DWP office. Patients referred to supra regional units may be able to speak to unit social workers (not every unit has a social worker) or clinic liaison staff who will be happy to help you. If a specialist social worker is not available, community and hospital social work departments usually have a duty social work system. You might find that you are directed to a call centre as a first contact point. Information of claim entitlement can also be found at gov.uk.
Although people are normally only entitled to DLA/PIP when they have needed help for a period of three months or longer, you can register with the DWP as soon as it is clear that your child will require extra help for at least nine months or has been diagnosed with a long-term illness. If your claim is successful payment may be backdated to your first contact with the DWP.
To claim DLA for someone under the age of 16 a claim form can be obtained by calling the DLA helpline on 0845 712 3456. Notes that will help you with completion accompany the forms. If the claimant is over the age of 16 and is claiming PIP, they should contact the PIP helpline on 0845 850 3322. On requesting the form, it is then dated and the claimant has around six weeks to complete and return. The claim form will have a return date recorded clearly on it when it arrives. Remember to photocopy the form and keep a copy for your records before posting.
The claim forms contain a helpline number but help can also be gained from the Citizens Advice Bureau or your contact at the hospital you are referred to.
Help from a hospital social worker or a member of the nurse specialist team, if the unit does not have a social worker, is extremely beneficial because it needs to be established that the child in question may need more help than that of a well individual. These people have experience of the type of information which needs to be included in the form.
Some useful tips when completing the form:
- Take time to complete the form. This form matters so try not to do a rushed job.
- Make rough notes about each section on a separate piece of paper before you complete the form. Read through your notes thoroughly and prepare a draft before you complete the form.
- Think about the needs of the claimant on a day that they are unwell.
- Keep a diary both day and night for a minimum of a week and note the amount of time spent giving medication, travelling to hospital/doctors, night-time care and daytime care.
- Keep a photocopy of the completed form.
- Please remember to approach the relevant professionals involved in the care of the child/young person, to assist in the completion of any forms. It is useful to ask the claimant’s consultant to complete the last page of the form.
- Fill in the basics (name, date of birth etc.) This will save time when you have an appointment with any professional.
To avoid delay and possible refusal of benefit it is crucial to take time and seek advice when completing your DLA/PIP form.
If you think a decision about your benefits is wrong, you can ask the office that made the decision to explain it. You can also ask to get the decision reconsidered (this is called a mandatory reconsideration) and, if you’re still unhappy, you can appeal against the decision to an independent tribunal. Appeals should be backed up by letters from relevant health professionals. For more information on appeals visit www.gov.uk/social-security-child-support-tribunal.
For further up-to-date information, please contact your local DWP office.
It is important to note:
- DLA/PIP can be withdrawn at any time
- Wherever possible, keep the benefit money in a separate account
- DO NOT absorb the benefit into the general household budget
- You must re-apply if your child’s condition worsens if you are on a lower rate
- You must notify the agency if the claimant’s condition improves. If you claim falsely it would be classed as fraud.
If you would like more information before making an application, CLDF can send you the following:
- A guide to find out if you may be eligible to make a claim
- A guide to filling in the application form
- Information on questions you’ll be asked at the medical assessment meeting
- Information on appealing any decisions, including template letters.
To request this information contact the Families Team on firstname.lastname@example.org.
Fill in our surveys to let us know what we’re doing well and how we can improve to better meet your needs