In mid-June 2021, TOFS facilitated an online Q&A session about benefits for the OA community.
On the panel was Dr Kamran Ahmed, a GP in Wolverhampton. Dr Ahmed has worked with the Department of Justice as a social entitlement tribunal member and has an interest in the benefit system. He’s also father to Zayn (6) who was born with OA/TOF.
He was joined by Dr Caroline Love, a doctor and Adult TOF, working as an Associate Specialist in Dermatology at York Hospital. She has experience in applying for PIP for her patients with chronic illnesses.
The final member of the panel was Heather Doward, who has over twenty years’ experience of benefit claims; helping others as well as dealing with claims for her son, Robert. Heather is currently a moderator on a disability benefits Facebook group (Disability Benefits UK).
A summary of the discussion is also shown below.
Disability Living Allowance (DLA) is for children under 16. Your child must have additional needs (in comparison with other children of the same age) to qualify for DLA. These needs can be in two areas – care and/or mobility.
To claim DLA, your child has to have had additional needs for at least three months and you expect them to last for at least six months or more. In terms of time, to qualify for DLA, your child is affected five out of seven days. For PIP, it’s about fifty per cent of the time.
If you think your child is eligible for DLA, you may submit a claim in the months after your baby is born.
Personal Independence Payment (PIP) is for children over 16. Applicants complete a form with ten questions about daily living and two questions about mobility. PIP is a points-based system. Eight points qualify the applicant for a standard award and twelve points qualify for an enhanced rate.
Having a DLA when under 16 does not automatically mean your child will qualify for PIP when they reach the age of 16.
Read the descriptors carefully and provide evidence related to the condition to support your claim. There are downloadable diaries at www.benefitsandwork.co.uk/help-for-claimants/pip to help you keep a record of supervision, activities and care needs. Any relevant letters can be provided as evidence. A list of aids and adaptations can be helpful. Copies of clinical letters/reports are useful. These can be used instead of a professional completing the form.
Remember that appointment letters are not enough! For evidence, use letters or reports which give clinical information, for example, details of medical procedures. Try to use the most recent letter/report (keeping a file with all letters/reports can be useful).
It’s a good idea to download the form as a PDF. Date and save the form so you can refer back to it, update it and, if necessary, re-use it for a future application. Try to be as clear as possible on the form. Only complete sections which apply, and don’t feel the need to fill every box!
Think about which professional knows your child best. This will depend on your child’s needs. For example, a paediatric surgeon might know details of your child’s medical procedures or surgeries but your paediatric or support nurse may know more about issues and needs that impact more day-to-day. Other professionals you could approach might include your Speech and Language Therapist, Dietician/Nutritionist or an additional Support Teacher at school.
Your child has to be in receipt of DLA (at middle or high rate for care) or PIP (either the standard or enhanced daily living award) in order to apply for the Carer’s Allowance. You must be carrying out caring duties for at least 35 hours a week and earn less than £128 a week after tax and certain expenses (for example, paying someone to care for your child).
You can claim Carer’s Allowance if you are in part-time education (up to 21 hours) but not full-time.
Carers Allowance is currently £67.60 a week.
If you are awarded DLA for your child, you can claim the Carer’s Allowance or Attendance Allowance. Attendance Allowance also helps pay for your personal care if you’ve reached State Pension age and are disabled.
You can also claim for higher rates for your existing benefits such as child tax credit, universal credit or housing benefit. You are exempt from the benefits cap. If you are in receipt of the higher award for mobility, you are exempt from vehicle tax and you are entitled to a disabled badge (which saves parking charges).
You may also qualify for a motability vehicle or a taxi fare allowance.
If you are awarded PIP and you are on an ‘older’ benefit eg. Income Support, Jobseekers Allowance or Housing Benefit, you will get a disability premium. If you are on Universal Credit, you are exempt from the benefits cap and you (or your partner) can claim enhanced working tax credit. If you are awarded the enhanced daily living element of PIP, in some areas you can get a bus pass or reduced rail fares. If you are on a means-tested benefit, you can get reductions on eg dental costs or prescription charges.
If you have multiple prescriptions, it’s a good idea to get the pre-paid prescription card.
Ask your employer for support if you are on maternity leave and wish to extend this. The Carer’s Allowance may be higher than the Maternity Allowance. Check if you are entitled to Universal Credit.
Having a PIP award doesn’t automatically entitle you to Universal Credit. PIP is not a means-tested benefit whereas universal credit is means-tested.
You my be able to access Citizens Advice Bureaux (CAB), Welfare Rights Officers and Disability or Carer’s Advice centres, depending on your area. If you live in social housing, Housing Officers may be able to help. School Special Needs Coordinators may be able to help as they often have experience in completing these forms.
You can phone the PIP helpline – a member of DWP staff will phone you back.
There’s plenty of online help and advice available. Please see the links elsewhere on this page.
Other useful sites include:
Avoid paying for services to help you complete the form. You are the best person to complete the form as you know your child best!
When your form is received, it is looked over by someone from a clinical and benefits background. In some cases, a decision can be made on the basis of the application form alone. In most cases, the form is then assessed. These assessors use a drop-down menu, so sometimes it can be difficult to ‘match’ a comment to the information you have given on the form.
If you are given a notice to say your claim is unsuccessful, you can opt for a ‘mandatory reconsideration’. An independent person from DWP will then verify that all forms have been completed and scored correctly. If this ‘mandatory reconsideration’ is unsuccessful, you can then make an appeal to the Department of Justice. This is an interview about the child’s/your daily activities/needs.
To prepare for this interview, you could read over the application form and the decision and write down where you disagree. You may get help with this from CAB or the other agencies mentioned below. Legal advice can also be helpful here. If your appeal is unsuccessful, you can re-apply, although this may not be successful unless the child’s/your day to day activities/needs have changed.
The panel’s advice was to re-apply for PIP. If this is unsuccessful, you could consider an appeal. The appeal interview includes legal and medical professionals and gives you an opportunity to explain your son’s daily needs. As always, try to provide as much evidence as possible of your son’s needs.
Becoming an appointee is straightforward!
Three months before your child is 16, you’ll receive a letter. The Department of Work and Pensions (DWP) will arrange a visit or phone call, to discuss your responsibilities as an appointee and sign a form. There is further information at https://www.gov.uk/become-appointee-for-someone-claiming-benefits.
You should re-apply if there is a change in your child’s daily needs or activities. You should also inform the DWP if your child’s condition improves. Your child’s needs can change – the DLA is based on how often your child is affected ie a certain percentage of time in a day (for PIP, this is percentage of time in a week).
Usually, your child is reassessed every year so you can explain changes and/or improvements on the form.
Try to explain how frequently things happen. Keep copies of discharge letters which contain useful information about frequency, for example, regular admissions to hospital.
Tips and useful external links for applying for benefits for your child or yourself as an Adult OA/TOF.
Thanks to the help of our volunteers, we are able to offer our members support with applying for DLA and PIP. Complete the form on this page or contact us for more information.
The charity for families with disabled children. Contact also provides resources on a range of issues (including benefits and rights) and offers the support of a Welfare Rights Officer. Directory for specific conditions, rare disorders and UK Family Support Groups.
Disability Living Allowance
Find out about Disability Living Allowance here.
Department for Work and Pensions
Details of benefits and services available from the department for Work and Pensions.
entitled to…what can you claim?
Easy to use website with a free web-based calculator to help you work out your entitlements to benefits and tax credits. Also links and advice on how to claim the various benefits.
Information on health, benefits and grants and links to other useful sites