Financial Support
The extra costs of having a child born with a condition like cleft can quickly add up. This page lists some of the services available to families in need.
CLAPA cannot offer advice on accessing any external services on this page or your eligibility. We would strongly recommend that anyone seeking help contacts their local Citizens Advice Bureau or an independent welfare rights agency for professional advice.
If you know of any other resources which should be added to this page, please contact [email protected].
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General Advice
It can be difficult to understand what’s available and what you are entitled to, but there are several organisations which can help you.
Keep good records, including copies of any paperwork or documentation related to your child’s cleft, as you may need to use these as proof.
It may be useful to keep a diary of the ways in which your child’s cleft affects your family, such as extra costs, time or care needed. This will help you to understand your circumstances before you apply for any grants or benefits and may be useful as proof.
If you receive any benefits, make sure to always inform the relevant authorities if your circumstances change.
Is cleft a disability?
Disability is a complicated topic, but under the terms of the Equality Act 2010, a cleft by itself is not considered a disability.
However, a cleft can impact someone’s life in many different ways. As babies, they may need extra help with feeding and sleeping. As they grow up, they may need hearing aids, speak in a way that others struggle to understand, or have serious self-esteem concerns. Sometimes, these concerns will impact someone’s life in a way which is serious and long-term enough for it to be considered a disability. In these cases, it would be that specific concern (e.g. being hard of hearing) that would be considered a disability.
When looking at what kind of support should be made available to families or individuals, the specific health condition is usually less important than the ways in which it affects someone’s life. For example, if you need extra equipment or incur other costs, regularly miss work or school, or if daily tasks take longer or are more difficult because of a health condition. This includes mental health concerns.
Government Benefits
Benefit and Tax Credit Help
These tools and organisations can help you find government benefits and other grants to which you may be entitled.
Personal Independence Payments (PIP)
Personal Independence Payment (PIP) is a non-means-tested benefit, meaning it is paid regardless of your income. There are two elements to PIP: care and mobility, and both of these have a lower and higher rate.
You may be eligible to claim PIP if your child has significantly higher care needs than other children the same age across several different areas such as feeding, sleeping, managing treatments, etc. You will need to provide proof of these needs and the ways in which they impact your child’s life and your family.
In most cases, the additional needs of a baby born with a cleft alone will not be significant enough to qualify for PIP. It can be very difficult to claim, and even families with strong claims often find they have to appeal before they are awarded PIP.
We would strongly recommend seeking help from Citizen’s Advice or a welfare rights specialist before applying for PIP.
Help with Hospital Costs
The Healthcare Travel Costs Scheme helps those in need with the costs of travelling to and from health appointments.
Ronald McDonald House provides free accommodation to families in need near a number of major children’s hospitals.
Help with Essential Items
Feeding Bottles and Teats
If you struggle to pay for the special bottles and teats you need from CLAPA’s shop, please contact your Cleft Nurse Specialist. They can contact [email protected] on your behalf to request extra items which we will provide free of charge, no questions asked.
The Family Fund
The Family Fund is an organisation that provides grants to low-income families raising disabled and seriously ill children and young people. The Family Fund has told CLAPA that they will consider applications for financial help from families affected by cleft. They help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and family holidays together. To apply, visit: http://www.familyfund.org.uk/
Turn2Us
Turn2Us is a charity that helps people in need find benefits and grants they may be entitled to. Learn more here: https://www.turn2us.org.uk/