Support when your child does not have a diagnosis

Your child is entitled to get support for their needs rather than their diagnosis. For example:

  • treatment, therapy or other support services should be tailored to your child's needs
  • strategies to help your child's mobility or speech and language development are suitable for children with different conditions.

See the list below for what your child and you as a carer or family should be entitled to.

Social services needs assessments

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 behalf.

Financial help or support

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 adaptations.

Our welfare experts can offer advice with all the benefits you are entitled - call our freephone helpline for more information.

Support for your child's education

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 staff.

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.

How to communicate your child's needs

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.

Parent support groups

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 Alliance UK.

Have you read our advice from other parents on living without a diagnosis?

 

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