Action for M.E.

Your rights and education

If you have M.E. and you're not able to attend school full-time, or even at all, you're still entitled to an education.

The government recommends that young people up to the age of 18 should continue to have access to as much education as their medical condition allows.

In November 2001 the Department for Education and Skills (DfES) published a document called 'Access to Education for Children and Young People with Medical Needs'. This is the guidance by which all Local Education Authority (LEAs), Head teachers and Governors should treat you if you are off school because of a medical need.

It is a fairly long document (48 pages) but it is well laid out so it's easy to read. We've picked out a few statements to give you a flavour of the report but you or your parents can download it in full from the DfES website or contact them on 020 7925 5000 for a copy Ref: 0732/2001.

There are also other documents on this DfES website that you and your family might find useful.

What does it say?

'Pupils who are unable to attend school because of medical needs should be able to access suitable and flexible education appropriate to their needs. The nature of the provision must be responsive to the demands of what can be a changing medical status.' (p.7)

The document emphasises that your LEA should make sure that:

'Pupils are not at home without access to education for more than 15 working days
Pupils who have an illness/ diagnosis which indicates prolonged or recurring periods of absence from school, whether at home or in hospital, have access to education, so far as possible, from day one
Pupils receive an education of similar quality to that available in school, including a broad and balanced curriculum
Pupils educated at home receive a minimum entitlement of five hours teaching per week. This is a minimum and should be increased where that is necessary to enable a pupil to keep up with their studies. This is particularly important when a pupil is approaching public examinations.' (p.8)

'Whether the child or young person is able to access this entitlement will depend on medical advice, and perhaps more importantly, when they feel able to cope with it. The right balance must be struck between encouraging pupils to study and recognising when they are not well enough to benefit from teaching. This must be kept under regular review.' (p.8)

With regard to children and young people who have M.E./ CFS the document says:

'Some young people will be too severely affected by their illness to participate in any form of education. A resumption of education, in whatever form, should be planned in a way which ensures that children and young people do not feel under pressure to study but are encouraged to do so in a way which is likely to be sustainable.' (p.15)

The document goes on to highlight the responsibility of your school, saying that schools should:

'Have a policy and a named person responsible for dealing with pupils who are unable to attend school because of medical needs
Notify the LEA/ EWO (Education Welfare Officer) if a pupil is, or is likely to be, away from school due to medical needs for more than 15 working days
Supply the appropriate education provider with information about a pupil's capabilities, educational progress, and programmes of work
Be active in the monitoring of progress and in the reintegration into school, liaising with other agencies, as necessary
Ensure that pupils who are unable to attend school because of medical needs are kept informed about school social events, are able to participate, for example, in homework clubs, study support and other activities
Encourage and facilitate liaison with peers, for example, through visits and videos.' (p.8)

Read how other young people with M.E. have managed their education in Reality Bytes.

For more information about your rights check out the Disability Rights Commission.

Information produced February 2004