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Lived experience
and legislation
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In this section, parents describe the impact of their child’s needs both for the child/young person themselves and their family. It also introduces the legislation around identification and early provision.

First encounters and identifying needs

Listen to parents talking about
their experiences:
  • Emma's diagnosis
    2:14
    Ruth talks about her feelings when her daughter's severe disabilities were diagnosed.
  • Premature birth
    1:32
    Harvey's father talks about how his twins, Harvey and Lydia, survived birth at 25 weeks.
  • About Marley
    1:40
    Marley's mother talks about the many disabilities her adoptive son has and his positive personality.
First encounters and identifying needs

The initial period of finding out about a child's/young person’s disability is normally a highly stressful time for parents. They may be bewildered by what they are being told by professionals, and have little or no knowledge of what support they and their child/young person are entitled to. Yet the earlier that a child/young person with special educational needs/disabilities has access to appropriate support, the better the long term outcomes are likely to be.

Legislation may enable provision for identifying and meeting needs to be made, but in 'real life' there are many reasons that things may not be straightforward. Inconsistency between local authorities and service providers may mean that while a child/young person has certain legal rights, these may not have been exercised as early as would be desired.

After diagnosis

Following the identification of a child's/young person’s disability, the primary contact for most parents is with medical and health professionals, although they may also already have contact with a social worker.


Under the Children and Families Act 2014 (section 23), Clinical Commissioning Groups (CCGs) and health bodies have a duty to inform the child’s parents and notify the appropriate local authority if they believe a young child under compulsory school age has, or probably has, special educational needs. However, CCGs and health bodies must give parents the chance to discuss their opinion that their child has, or probably has, special educational needs/disabilities before informing the local authority.

The legal framework for the majority of children's/young people’s health and social care services lies within the Chronically Sick and Disabled Persons Act 1970, the Children Act 1989, the Children and Families Act 2014 and the Care Act 2014. However, other relevant legislation will be identified within this module.


Regulations and guidance made under these Acts outline the procedures and processes for assessing the needs of children/young people and providing services to meet those needs.

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Legislation and guidance