What is ”Disability“

A disability is an impairment which can be physical, mental, sensory, cognitive, emotional and/or developmental.  It can be present from birth or occur during a person’s lifetime.

Our children living with CHI have an impairment within their bodies.  Their pancreas does not work properly as it is supposed to.  Some of our children do not have their pancreas due its removal because of CHI.    

There are certain benefits that families who have a child with a disability can apply for.  This is not guaranteed and indeed it is not consistent which we believe is unfair and many families have to appeal a decision.   

This is just some information we have which may help you.    If you know of anything else that we can include on this page please contact us This email address is being protected from spambots. You need JavaScript enabled to view it.


Disability Living Allowance

This is not means tested.


Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:


  • is under 16
  • has difficulties walking or needs more looking after than a child of the same age who doesn’t have a disability

They will need to meet all the eligibility requirements.

The DLA rate is between £21.80 and £139.75 a week and depends on the level of help the child needs. The child may need an assessment to work out what help they need.



Carers Allowance

This is means tested and there is criteria, if you earn over an upper limit you do not qualify


Carer’s Allowance is £62.10 a week to help you look after someone with substantial caring needs.

You don’t have to be related to, or live with, the person you care for.

You must be 16 or over and spend at least 35 hours a week caring for them.

Carer’s Allowance is taxable. It can also affect your other benefits.



CEA Card  (cinema card)

This card allows a carer in free to many cinemas accompanying the child who has a disability.  You have to fit certain criteria.   


There is a small cost for this card.



There is a railcard for people with disabilities.  Sometimes it works our cheaper to purchase a friends and family card but worth looking at them all.


The Childrens Hyperinsulinism Charity

The Childrens Hyperinsulinism Charity
Registered Charity Number: 1165562
Company Number CE005407

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