Question to the Department for Education:

To ask the Secretary of State for Education, what representations she has received from parents or representatives of pupils with Batten disease; and if she will make a statement.

The Department for Education has received no representations from parents or representatives of pupils with Batten disease.

Section 100 of the Children and Families Act 2014 introduced a new duty to support pupils at school with medical conditions and to have regard to statutory guidance. It applies to governing bodies of maintained schools, proprietors of academies (excluding 16–19 academies) and management committees of pupil referral units. The statutory guidance, published in September 2014, can be found online at: https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

The guidance covers a range of areas including the preparation and implementation of school policies for supporting pupils with medical conditions, the use of individual healthcare plans, staff training, administration of medicines, consulting with parents and collaborative working with healthcare professionals.

Local authorities have a duty to arrange education for children of compulsory school age who would not receive suitable education for any reason, including illness. In carrying out this duty, the department has issued statutory guidance to which local authorities must refer: https://www.gov.uk/government/publications/alternative-provision

Guidance on identifying and supporting children and young people with special educational needs (SEN) is given in the SEN and Disability Code of Practice: https://www.gov.uk/government/publications/send-code-of-practice-0-to-25

Schools have a statutory duty to use their best endeavours to ensure that children with special educational needs get the help they need. Even where a child does not have a Statement of SEN or an Education, Health and Care (EHC) plan, schools still have legal duties to meet pupils’ special educational needs. Where a pupil is identified as having special educational needs, schools should take action to remove barriers to learning and put effective provision in place. In addition, the Children and Families Act 2014 places a legal duty on schools to have in place arrangements to support children with health conditions.