The Essential Pre-16 Toolkit

For young people with ME who are of compulsory school age and their parents, there are four documents that are essential reading. They make up the ‘toolkit’ most often used for the advice line. These are:

• ‘Access To Education for children and young people with medical needs.’
  Publication from 0870 000 2288 quoting Ref DCSF 0732/2001
  Or DCSF-sickchildren
• ‘Code of Practice for Schools – Disability Discrimination Act 1995: Part 4’
  Publication from 08457 622 644
  Or http://www.drc-gb.org
• ‘Access Arrangements and Special Consideration’
  Publication from 0161 958 3737 price £10 (updated every September)
  Or http://www.jcq.org.uk
• East Sussex County Council ex parte Tandy
  http://www.parliament.uk
  To be found under Judgements / 20 May 1998 / In re T (A minor)

Access to Education for children and young people with medical needs
AYME was very much involved with the consultation process for this document with the DCSF and formed part of the Steering Group prior to publication. This publication is the absolute ‘must have’ on the shelf. It is statutory guidance which sets out minimum standards for the education of children who are either, unable to attend school, trying to reintegrate or attending part-time. The guidance covers areas such as policies and procedures, early identification, relationships between home and school, successful reintegration and high quality provision. This statutory guidance does not impose legal obligations but makes practical recommendations to Local Education Authorities based on legislation – in this case Section 19 of the Education Act 1996 as quoted in Chapter 1.

Code of Practice for Schools – Disability Discrimination Act: Part 4
New duties came into effect in September 2002 for the DDA to cover every aspect of education. The duties make it unlawful to discriminate, without justification against disabled pupils and prospective pupils, in all aspects of school life. The Code sets out the detail of how the two main duties apply to schools, the duty not to treat people less favourably and the duty to make reasonable adjustments for disabled pupils. It also explains duties relating to information and confidentiality.
This Code does not impose legal obligations but is guidance for schools based on legislation.
In September 2005, physical adjustments to the premises will need to be made if disabled people are at a substantial disadvantage.

Access Arrangements and Special Consideration.
This publication sets out the regulations and guidance agreed jointly by the examination boards for examination candidates who need special concessions made for them as a result of long-term or temporary disability or illness. These special arrangements are approved before an examination to allow such candidates an equal opportunity to demonstrate their abilities. All Examination Officers should have a copy but are not always aware of the wider range of possible arrangements.

East Sussex County Council ex parte Tandy
I have heard recently that some professionals are telling parents they cannot afford educational services for children who are struggling with ME. This is illegal. In 1997, we took our local authority to court because they told us our daughter’s home tuition was to be reduced from five hours a week to two as they could no longer afford it. Our case went all the way to the House of Lords where all five Law Lords agreed with us that, where a Local Education Authority (LEA) has a statutory duty to provide a ‘suitable education’ for young people of compulsory age, it is not entitled to take money into account. Money can be taken into consideration only if there is more than one way to provide that ‘suitable education’.
In addition, the Law Lords ruled that the ‘suitable education’ is owed to each sick child as an individual. The duty is to make suitable arrangements for each child; in other words, no blanket policies.
This case can be taken in its wider context of making LEAs aware of their responsibilities and how ‘a statutory duty was not to be reduced to the level of a discretionary power’.

For further help and advice, please contact AYME's helpline on 08451 23 23 89 10am to 2pm Monday to Friday, who will put you in touch with our education advisor.

Article last edited on Thursday 12th August 2010                          Printable Version