Identifying needs – parents talking about experiences
Emma's diagnosis2:15Ruth talks about her feelings when her daughter's severe disabilities were diagnosed.
Premature birth1:33Harvey's father talks about how his twins, Harvey and Lydia, survived birth at 25 weeks.
About Marley1:41Marley's mother talks about the many disabilities her adoptive son has and his positive personality.
If Clinical Commissioning Groups (CCGs) and health bodies suspect that a child under compulsory school age has special educational needs or disabilities, they must give the child's parents the chance to discuss their opinion before informing the local authority – which they are required to do under the Children and Families Act 2014.
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 son/daughter are entitled to. Yet the earlier that a child/young person with disabilities and special educational needs 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.
to children/young people
Children with disabilities do not represent a distinct category within legislation and, therefore, are affected by:
- Children's/young people's and education statutes; and
- Disability statutes (that apply to adults as well as to children and young people).
Following identification of a child's/young person's disability, the main 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.
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.
At the beginning of this section, you heard Marley's mother, Janice, talk about her son.
In addition to his early disabilities, when Marley was three he had a stroke.
Find out the answers to
- At that point, who would be supporting Marley's parents?
- Who would take the lead in reviewing his needs and entitlements?
- What changes in provision would you expect after Marley had a stroke?
- Where would these be recorded?