Disability living allowance
As a carer for a child with PCD, you may be entitled to claim Disability Living Allowance (DLA). If the child is 16 or over, then you may be able to claim Personal Independence Payment (PIP).
DLA/PIP are social security benefits for people who have an illness or disability. They are tax-free and do not reduce the amount of any other benefits that you may get, and may in fact increase them. They are not based on how much money you earn, or savings you may have.
DLA provides extra money for children who:
- Need more care, attention or supervision than a child of the same of the same age who doesn’t have PCD. This is the care component
- Have difficulty walking or getting around in unfamiliar places compared to a child of the same age who doesn’t have PCD. This is the mobility component
It can be hard to fill in the claim forms for DLA because you have to focus on all the extra needs or difficulties your child has because of PCD. You need to demonstrate on the form how your day-to-day routine revolves around what you need to do to keep your child well, e.g. physiotherapy, nebulisers, medication, sterilising equipment etc.
- How often and how long each day do you spend time doing physio with your child. Can they do this for themselves?
- Do they need encouraging to do their physio/eat well?
- Do they have hearing loss?
- Do they have limited mobility because of reduced lung function?
- What is your child is unable to do because of PCD?
- How often do you need to attend hospital/clinics?
- How often do they wake in the night due to coughing? Do they need help to go back to sleep?
- Which medications do they have to take, and how long do they take to administer?
- Do they need help/encouragement with their mental health to cope with their PCD?
- Do they have any side effects from the medication? This may be nappy rash from antibiotics or having to use extra sunscreen because their skin goes orange when on particular medication.
It is helpful to keep a daily diary, making a note of what help is needed, why, when and for how long. You could send this with your form. There is a template for a diary available on the website of the Citizens Advice Bureau.
The key to a successful claim is demonstrating how your child’s needs are greater than those of a child of the same age without PCD. It is important to fully describe your own child and the care he/she needs both on good days and on bad days. Contact a Family have very helpful information on filling out the DLA form.
It is a good idea to get specialised help to complete the form as it is difficult to know which facts are relevant. Your specialist respiratory nurse may help. You could ask to speak to a benefits specialist at the Citizens Advice Bureau. Their help is free and confidential. Fightback4justice may also help. They are a non-profit making organisation and complete forms for you for a small fee, but have a high success rate. Contact a Family also have a benefits helpline for children, 0808 808 3555.
It is helpful to keep a copy of your form when you have filled it in and any other documents you send in case you need to refer to them later.
Once you have submitted your form it will be assessed, and you will be notified about the decision. Sometimes people have had their applications turned down or are awarded a lower rate than they think they are entitled to. If this happens you can ask the DWP to look at their decision again by asking for a Mandatory Reconsideration. You can write a letter or use a form for this: form download.
However, it is very important that you do this within one month of the decision. Contact A Family, the Citizens Advice Bureau and Fightback4justice can be very helpful here.
If you are awarded DLA for your child, you may also be able to get higher payments of child tax credit, housing benefit and universal credit. You may also be able to claim carer’s allowance or a grant from the Family Fund.
Claim a council tax reduction
You may be able to claim a council tax reduction if you use a room in the house to help with your child’s health condition (e.g. for a physio bed or oxygen generator). You will then pay at the rate of one council tax band lower than the one that you are currently paying. You would need to apply to your local county council for this. There is information on the individual council websites about disabled band reductions as well as the application form. It is simple to apply for and has nothing to do with your income or savings.
Get a blue badge
If your child has limited mobility due to their PCD, you may be eligible for a blue badge. Find out more information here.