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Your child and your family are entitled to support whether they
you have a diagnosis or not.
Repeatedly having to explain your child's medical problems to
different professionals can be frustrating. Make a list of all the
ways your child is affected and take copies along to all medical
appointments and assessments.
You might find it helpful to create a communication passport for
your child. A communication or hospital passport is a booklet that
you can use to pass on crucial information about a child or young
person with additional needs. It contains information about their
condition, medications, likes and dislikes and essential
information if an emergency happens.
Scope have a template for a communication passport on their
website. Look under 'communication difficulties' at www.scope.org.uk. Mencap also
have a hospital passport for children with a learning disability on
Treatment, therapy or other support services should be tailored
to your child's needs, not the name of their condition. Strategies
to help your child's mobility or speech and language development
are suitable for many children with different conditions.
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 Scotland this is known as the Social Work
Department, and in Northern Ireland it is the Health and Social
Services Trust). 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.
Parents often worry that when they fill out forms to get
services or financial assistance, having no diagnosis for their
child will work against them. You can ask your specialist or
paediatrician to write a letter to outline the difficulties and/or
symptoms your child experiences and what effect this has on daily
life to support your claims.
There may also be grants available to you for things like housing
adaptations. Our welfare experts can offer advice with all the
benefits you are entitled -
call our freephone
helpline for more information.
Your child is entitled to have extra support to help them at their nursery,
pre-school or school, if they need it. This does not depend on
knowing the cause of their diagnosis.
However, getting support for your child at nursery or in school
can be more difficult if you do not have a named condition. You can
improve the settings/school's understanding by getting a letter
written by the child's specialist or paediatrician to list the
their needs and how best they can be supported.
The main point of contact is the early years or school's special
educational needs coordinator (England and Northern Ireland),
Additional Learning Needs Co-ordinator (Wales) or Additional
Support for Learning Assistant (Scotland).
Parents often say that what helped them most was meeting other
parents who are in, or have gone through, a similar situation.
Meeting other parents can be a chance to hear useful tips, find out
about local services and learn strategies for dealing with common
issues like sleep and behaviour.
Many areas in the UK have local parents' support groups
where families with children with all kinds of disabilities meet
up. Local groups have the advantage of meeting regularly and
provide a support network near your home if you need one.
community is a safe and trusted space where you can talk to
other parents about anything and everything that affects you and
your child - from medical conditions to healthcare, holidays and
Syndromes Without A
Name (SWAN) UK is a national network for families with children
with undiagnosed genetic conditions, which is run by the Genetic
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