Noonan Syndrome

Department for Education written question – answered on 13th January 2022.

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Photo of Fiona Bruce Fiona Bruce Conservative, Congleton

To ask the Secretary of State for Education, what Government support is offered to families in which someone lives with Noonan's Syndrome; and if he will make an assessment of the potential merits of providing a blue badge for the carer of that person.

Photo of Will Quince Will Quince The Parliamentary Under-Secretary of State for Education

The department recognises that Noonan’s syndrome can cause a range of needs and difficulties for individuals, which may mean that they, or their families, require additional support. For children, support can be provided through both the education system, and through children’s social care services.

Schools are required to identify and address the special educational needs (SEN) of the pupils they support and to use their best endeavours to make sure that a child or young person who has SEN gets the support they need. Local authorities (LAs) have a statutory responsibility to assess whether children and young people have SEN that require the support of an education, health and care (EHC) plan. If the local authority issues an EHC plan, it also has a statutory duty to secure the provision specified in the plan, working with its education, health, and social care partners.

Outside education, the department believes that it is right for LAs, who know their areas’ needs best, to determine what services are required locally, including early help. In line with this, respite care services for disabled children (which are sometimes known as Short Breaks) are provided based on an individual assessment of each child and family’s needs. The Children and Families Act 2014 (Section 97) requires local authorities to assess and support the needs of parents/carers as well as those of children with SEN or a disability. Assessments are based on individual needs but should include parents’ well-being and ‘control over day-to-day life’.

This year LAs have access to £51.3 billion to deliver their core services, including a £1.7 billion grant for social care. In addition to statutory services, we are providing £27.3 million to the Family Fund in financial year 2021-22 to support over 60,000 families on low incomes raising children and young people with disabilities or serious illnesses. Grants can be used for a range of purposes, including family breaks.

The Blue Badge Scheme provides a national arrangement of parking concessions for people with a range of disabilities and medical conditions to enable them to park closer to the places they wish to visit. Eligibility for a blue badge is not restricted to specific conditions. People with conditions such as Noonan’s Syndrome could receive a badge if they meet the eligibility criteria. It is for the relevant LA to decide if an applicant meets the criteria. If an individual is eligible for a badge, then their carer can use it when accompanying the badge holder.

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