Call our free helpline0808 808 3555
Call our free helpline
0808 808 3555
Your child is entitled to get support for their needs rather
than their diagnosis. For example:
See the list below for what your child and you as a carer or
family should be entitled to.
You're entitled to have a social services assessment of your
child's needs - and of your needs as a parent carer -
whether your child has a named diagnosis or not.
You can request an assessment by contacting your social services
department. In some places there may be a 'children with
disabilities team' who you can contact.
Your GP, paediatrician or health visitor may also ask on your
There are a range of benefits and tax credits for families
caring for a disabled child. These are dependent on the level of
support or care that your child needs.
For example, Disability Living Allowance
(DLA) or Personal Independence
Payments (PIP) are intended to cover your child's extra care
and mobility needs. You can claim these benefits even if your child
does not have a diagnosis.
There may also be grants available to you for things like housing
Our welfare experts can offer advice with all the benefits you
are entitled - call our freephone helpline for more information.
In an educational setting, a child with additional learning
needs is entitled to get help based on needs and not diagnosis.
The main point of contact for a parent carer whose child has special educational needs
(SEN) is the school's special educational needs coordinator (SENCO), or if you
are in Scotland a member of the additional support learning
Contact a Family's freephone helpline has specialist educational
advisers who can offer advice and information on various topics.
Find out more about our helpline.
If your child has complex needs, explaining these every time you
go into a hospital appointment can be frustrating.
You can create a communication passport that includes crucial
information about your child - such as information about their
additional needs, medications, likes and dislikes as well as
information should an emergency situation occur.
Parents often say to us that what has helped them most was
meeting other parents who are in or have gone through a similar
situation. These parents can have useful tips about using local
services, as well as strategies to deal with common issues
like sleep and behaviour.
Many areas in the UK have a local parent support group, where
families with children with all kinds of disabilities meet up.
National condition support groups may have information that's
useful to you if your child has certain symptoms, even if they
don't have a named diagnosis.
Visit our parent support groups pages
to find out more.
Syndromes Without A
Name (SWAN) UK is a national network for families with children
with undiagnosed genetic conditions, which is run by the Genetic
Have you read our advice from other parents on
living without a diagnosis?