Essential Information for parents

All parents and guardians of children newly diagnosed with ME find themselves thrown into a confusing world of medical and education professionals whilst trying their best to work out how to take care of their child with their new illness.

This article contains essential information on education for parents living in England who have a son or daughter in years 1 to11 and who is, therefore, still of compulsory school age.

First of all, who is who?

'The department for children, schools and families' is the government department in London which oversees all educational matters around England. They issue the regulations and guidance in line with the law and government policy. It will make sure Local Education Authorities (LEAs) are working within the law.

The Local Education Authority (LEA) oversees educational matters in their local area. They have responsibility for all schools in that area and ensure they are providing educational provision within the law. The LEA is the authority that parents will deal with if a young person is in need of education services away from the school e.g. home tuition.

Many children with ME find they cannot get into school because of their illness and arrangements need to be made to ensure they receive some form of education that is suitable to their level of illness.

Under Section 19 of the Education Act 1996, the Local Education Authority (LEA) has a legal duty to:

It may be more suitable for a young person to receive their education at home for a while or they may need to attend the hospital school or learning centre. If this is the case, parents will deal with the appropriate department of the LEA. Direct contact with them is recommended.

On the AYME website (under education) there is an article called ’Education Law and ME’. This gives parents vital information about Section 19 and further information about a House of Lords’ judgement which is relevant to all young people with ME. Parents should print off this article and keep it safe.

To supplement the law under Section 19, there are guidelines issued by the Department for Children, Schools & Families (DCSF). It is essential that parents have a copy. The guidelines are called ‘Access to Education for Children and Young People with Medical Needs’ and copies are free from the DCSF publication line on 0870 000 2288 and quote the reference number DCSF 0732/2001. Please make sure they send you the full 48 page booklet and not the four page summary. Copies can also be printed from the internet from DCSF-sickchildren.

The guidelines recommend how LEAs are going to put their legal duty into practice. It recommends, for example, that children are not at home without education for more than fifteen working days and also that they receive a minimum entitlement of five hours home tuition a week. There is much flexibility built in to the guidelines, recognising that some children may be too ill to receive any tuition and that liaison with parents is essential.

Parents should remember that, whilst Section 19 is the law and the LEAs cannot shirk this duty, the guidelines are not law but are recommendations from the DCSF. However, a court of law would take the guidelines most seriously.

The guidelines recommend that all LEAs should have a local policy detailing how they are going to carry out their duty to young people with medical needs and that the policy should be freely available to all. Parents should, therefore, be able to ring their local education offices for copy. Similarly, schools should also have their own policy on how they are going to deal with the education of sick children - this may though be incorporated into a larger policy dealing with children with Special Educational Needs.

These documents make an essential library for all parents with pre-16 children in England. For help and advice on anything above or for other education matters, please ring AYME on 08451 23 23 89, Monday - Friday 10am - 2pm who will be able to offer advice and put you in touch with our Educational Advisor.

Article last edited on Thursday 12th August 2010                          Printable Version