Educational Challenges and Issues

Neuronopathic Gaucher's News Contents
Gaucher's News Contents

Christine Lavery from the Society for Mucopolysaccharide Diseases (MPS) talked about the challenges and issues regarding Special Educational Needs.

The 1993 Education Act issued a Code of Practice giving guidance on how to identify and assess special educational needs (SEN). It is a guide for schools and Local Education Authorities (LEAs) about the practical help they can give to children with SEN. It recommends that the schools should identify children's' needs and take action to meet those needs as early as possible, whilst working with parents.

All schools and (LEAs) must have regard for this Code when they are dealing with children who have SEN. The health authority and social services must also respect the Code when helping LEAs. This means when schools, LEAs and health and social services decide what they should do for children with SEN, they should always consider what the Code says.


The timetable to get your child statemented is 26 weeks in total. Once a statement has been requested, the LEA has six weeks to notify you as to whether or not an assessment will go ahead. Parents must ensure that they submit a written statement as to why they think their child should be statemented.

The LEA then have ten weeks to gather reports from all persons involved; it is essential that reports are obtained from professionals and volunteer groups who are involved with the child.

The LEA then have another eight weeks to make a statement proposal. Once received it is important for parents to look at it and if they are not happy with it, they must not accept it. They must discuss it with the LEA and if they remain unhappy then they can appeal.


At an appeal the parents can have either a person in authority or a representative from a volunteer or advocate group to represent them.

If the panel agree that the statement does not meet the needs of the child, then the LEA is responsible for providing the budget required to fulfil the child's special educational needs.

When considering the proposed statement parents must look forward to one, three, five or even ten years to identify the needs of their child, as it is time consuming and difficult to change the statement. Parents should also think about when their child transfers to secondary schools and what their needs will be at that time.

The MPS Society has details of a team of solicitors who specialise in SEN. If anybody would like their details contact Tanya Collin-Histed (address on page vi). Children are eligible to apply for legal aid.

Planning Ahead

Once your child has a statement it is very important to ensure that in the statement it outlines how often the review will be eg termly. At these reviews ensure that there is a LEA representative there; without them no decisions can be made.

Parents should start to plan a year in advance for their child's transfer from children's' services to adult services and also from pre-school to school. When transferring to secondary school, ensure that the school is aware that your child has special educational needs.

If a child moves schools within the same LEA then the statement stays with the child; if however the child moves to another school outside of the LEA area, then the statement may be reviewed.


The challenge for children with NGD is that outwardly they look normal. It is therefore imperative that everyone involved in the child's care work together to ensure that the difficulties these children have are identified. Teachers and other professionals involved must be educated about the effects of the disease and how this can impair the child, to ensure that they get the right amount and type of support they need to access the national curriculum.

Neuronopathic Gaucher's News Contents
Gaucher's News Contents

Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000