Your child and M.E.
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Your child's rights

The UN Convention on the Rights of the Child sets out the human rights of every person under 18. It was adopted by the UN General Assembly in 1989 and ratified by the UK in 1991. The Convention applies to every child without discrimination, whatever their ethnicity, gender, religion, language, abilities or any other status, whatever they think or say, whatever their family background (Article 2).

Further UK legislation sets out the education support that a young person with M.E. is entitled to.

Education support

Section 19 of the Education Act 1996 (as amended by Section 3 of the Children Schools and Families Act 2010, part 1, section 3) says local authorities must arrange suitable education (or as much education as the child's health condition allows) for children of compulsory school age who, because of illness, would otherwise not receive suitable education. This education must be full-time, or part-time if this is in a child's best interests because of their health needs.

Local authorities should:

  • provide such education as soon as it is clear that the child will be away from school for 15 days or more, whether consecutive or cumulative. They should liaise with appropriate medical professionals to ensure minimal delay in arranging appropriate provision for the child
  • ensure that the education children receive is of good quality, as defined in the statutory guidance Alternative Provision (2013), allows them to take appropriate qualifications, prevents them from slipping behind their peers in school and allows them to reintegrate successfully back into school as soon as possible
  • address the needs of individual children in arranging provision. ‘Hard and fast' rules are inappropriate: they may limit the offer of education to children with a given condition and prevent their access to the right level of educational support which they are well enough to receive. Strict rules that limit the offer of education a child receives may also breach statutory requirements.

Local authorities should not:

  • have processes or policies in place which prevent a child from getting the right type of provision and a good education
  • withhold or reduce the provision, or type of provision, for a child because of how much it will cost (meeting the child's needs and providing a good education must be the determining factors)
  • have policies based upon the percentage of time a child is able to attend school rather than whether the child is receiving a suitable education during that attendance
  • have lists of health conditions which dictate whether or not they will arrange education for children or inflexible policies which result in children going without suitable full-time education (or as much education as their health condition allows them to participate in).