Terms used in this guideline

This section defines terms that have been used in a particular way for this guideline. For other definitions, see the NICE glossary and the Think Local, Act Personal Care and Support Jargon Buster.

Augmentative and alternative communication (AAC) services

Services that help people with significant communication impairment. For more information, including eligibility criteria, see the NHS England service specification for specialised AAC services.

Awareness training programmes

Any training programme that is:

  • for parents and carers or

  • for practitioners, but is focused on helping them work more effectively with the child, young person and their family or carers.

Communication aid

Anything that helps a person communicate more effectively. Communication aids include paper-based systems (for example, letter or word boards), signing, and computer equipment.

Disabled children and young people with severe complex needs

Disabled children and young people from birth to 25 years who:

  • need coordinated education, health and social care support because of their severe and complex needs and

  • are eligible for an education, health and care plan, in line with the Children and Families Act 2014.

Some recommendations in this guideline may be difficult or impossible to implement for babies or very young children. However, it is also difficult to give useful age cut-offs for particular recommendations. Children develop at different rates, and their development rate will be affected by their specific disabilities and health conditions. Any age cut-offs risk mistakenly excluding and disadvantaging some children. If a particular recommendation is not appropriate for a baby or young child, it is still important to involve them as far as possible in discussions and decisions about their care and support. For more information, see:

End of life care

In this guideline, end of life care includes the care and support given in the final days, weeks and months of life, and the planning and preparation for this.

Environmental adaptations

Building adaptations designed to make homes, schools and other buildings (such as short break settings) accessible to disabled children and young people. Adaptations include minor changes (such as fitting grab handles or levelling door thresholds) and major changes (such as specially adapted bathrooms or fitting ceiling track hoists).

Environmental control services

Services that help people with complex physical disabilities use electronic devices (for example, the TV), if they cannot use the standard controls. For more information, see the NHS England service specification for environmental control services.

Interagency team

The existing team of key education, health and social care practitioners who are working together with the family to support the child or young person.

Local authorities

This includes individual and combined local authorities.

Palliative care

An approach to care covering physical, emotional, social and spiritual support. Palliative care focuses on improving the quality of life for the child or young person and supporting their family members or carers, and includes managing distressing symptoms, providing respite care, and support with death and bereavement.

Parallel planning

Planning for end of life care while taking account of the often unpredictable course of life‑limiting conditions. It involves making multiple plans for care, and using the one that best fits the child or young person's circumstances at the time.

Parents and carers

This includes anyone with parental responsibility for disabled children and young people with severe complex needs, including corporate parents.

Special educational needs and disability (SEND) Local Offer

This explains what support services are available in the local area for children and young people with special educational needs or disabilities, and their families. Every local authority is responsible for writing a SEND Local Offer and making it publicly available.

Special educational need

These are defined in the SEND code of practice: 'A pupil has SEN [special educational needs] where their learning difficulty or disability calls for special educational provision, namely provision different from or additional to that normally available to pupils of the same age'.

Supported internships

A study programme designed for young people who are aged 16 to 24 and who have an education, health and care plan. It provides them with the extra support they need to find employment. The internship includes support from a job coach.

Supported internships are primarily based with an employer, and are normally designed to lead to a job when they finish. Because of this, a supported internship is usually the final year of education for a young person.

For more information, see the guidance on supported internships from the Department for Education.

Support workers

Anyone other than a family member who has been delegated clinical tasks (including teachers, teaching assistants and other staff in education or care settings).

  • National Institute for Health and Care Excellence (NICE)