Appendix 41 - Government policy relevant to SEN and Down Syndrome

NICE Guidelines: Disabled children and young people up to 25 with severe complex needs

Disabled children and young people up to 25 with severe complex needs: Integrated service delivery and organisation across health, social care and education (March 2022).

This guideline covers support for disabled children and young people with severe complex needs, from birth to 25 years. It aims to encourage education, health and social care services to work together and provide more coordinated support to children and young people, and their families and carers.

www.nice.org.uk/guidance/ng213

Recommendations

The guideline includes recommendations on:

• principles for working with all disabled children and young people with severe complex needs and their families

• identifying needs and involving other services

• education, health and care needs assessments and plans

• personal budgets and direct payments

• improving access to social activities

• supporting parents and carers

• transition from children’s to adults’ services

• organising services, including working culture, training, and running joint services

It also covers specialist support for disabled children and young people with particular needs:

• palliative and end of life care

• communication aids

• environmental adaptations

• travel training

• employment

Who is it for?

• Education, health and social care practitioners and service providers

• Local authorities and health commissioners

• Disabled children and young people with severe complex needs, their families and carers

• People who have Down’s syndrome should expect the same quality of healthcare from the NHS as anyone in the population. If a person who has Down’s syndrome and/or their supporter visits a health professional with their worries or concerns, they should always expect what they have to say taken seriously.

• The NHS has a legal duty to make reasonable adjustments to their services to make sure people who have disabilities face as few barriers to getting good healthcare as possible. For people with learning disabilities reasonable adjustments may include longer appointments, information in easy read and support around consenting to treatment. 

Information on Covid vaccine and T21 covid research

• https://www.downs-syndrome.org.uk/news/news-research/coronavirus/latest-guidance-and-qa-on-covid-19-for-people-who-have-downs-syndrome/

• https://www.downs-syndrome.org.uk/news/news-research/coronavirus/latest-advice-on-new-covid-19-treatment-for-people-who-have-downs-syndrome/

Down syndrome Act

The guidance sets out how a range of bodies should exercise their statutory functions in relation to existing legal frameworks, to meet the needs of people with Down syndrome. The Act prescribes the areas for which the guidance must relate, set out under several headings:

• National Health Service

• Social care

• Housing

• Education

• Youth offending

The aim of the guidance is to set out how a range of bodies should exercise their statutory functions in relation to existing legal frameworks, to meet the needs of people with Down syndrome. The Act prescribes the areas for which the guidance must relate, set out under several headings: National Health Service, Social care, Housing, Education and youth offending. The authorities specifically listed within each section will then need to have ‘due regard’ to the guidance when exercising their functions in relation to the various named pieces of primary legislation listed under each of these specific areas. 

https://www.specialneedsjungle.com/down-syndrome-act-overlaps-send-green-paper-vital-community-engages-both/