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Communicating your child’s needs
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.
Mencap also have a hospital passport for children with a learning disability on their website: www.mencap.org.uk/advice-and-support/health/our-health-guides
Treatment and support strategies
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.
Social services needs assessments
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 behalf.
Getting financial support when your child doesn’t have a diagnosis
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.
Support for your child’s education
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).
Meeting other parents
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.
Local parent support groups
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.
Join our online community
Our private Facebook group 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 higher education.
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.
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