All children should have the opportunity to learn, play and develop in an environment that is suitable to their needs and abilities. However, for parents of children with special educational needs and disabilities, accessing the right level of support and information can prove frustrating. Often the level of support available varies greatly depending on where you live. Niemann-Pick disease can present many challenges in the classroom, these can be overcome if parents, teachers and other professionals work together to ensure that the child’s presenting needs are met effectively.

One way to achieve this is through a statement of special educational needs; children with long term conditions or complex needs often require a statutory assessment before they start school, this process is usually started by a specialist involved in caring for the child.  In some cases this process actually begins after the child has started to attend school.

This section of our website aims to provide families with information on the procedures for identifying and making provision for their child who may have special educational needs (SEN). Children who have learning difficulties or disabilities that make it harder for them to learn than other children of the same age are considered to have special educational needs.  This means they may require extra or different help from that given to children of the same age, or that they may not be able to access educational facilities used by children of the same age due to their disability.

The Government's response to the Education and Skills Select Committee report on SEN was published on October 11 2006. A copy of the response can be found by clicking here.

Special Educational Needs - A Guide for Parents and Carers

Where to turn for advice on Special Educational Needs

Contact a family Factsheet: Special Educational needs - Scotland:

Contact a family Factsheet: Special Educational needs - Wales:

Contact a family Factsheet: Special Educational needs - England:

A Parent's Perspective of Educating a Child with NPD

General Information on Educational Management for Young People with Niemann-Pick Type CThe following information is aimed at teachers working with young people who suffer from Niemann-Pick Disease Type C..... 'For teachers, it is important to know the age of onset and to remember that, prior to the diagnosis, the child attended a mainstream school and had a healthy life. As with some other neurologically degenerative conditions, i.e., Juvenile Battens Disease, it is probable that the long-term memory of young people with NPC remains with them until the final stages of the disease although the level of functioning deteriorates.....'...Read more

Portage Portage is a home-visiting educational service for pre-school children with additional support needs and their families. It takes place in the child's own home and aims to equip parents with the skills and confidence they will need to help their child, no matter what the child's difficulties may be. Portage offers practical help and ideas to encourage a child's interests and make learning fun for all the family. Portage is currently being used by approximately 4,500 children and families across the U.K. To find your nearest Portage Service contact the National Portage Association by email or visit their website

Special Educational Needs and Disability - Removing the Barriers to Achievement It is the ambition of the SEN and disability division that every child with special educational needs reaches their full potential in school. To promote the welfare and interests of disabled children and to improve the support they receive, this website provides a wide range of SEN and disability advice and materials for teachers, parents and others working with children with SEN in England. For advice on SEN in other areas of the UK see below or contact the SEN team at the Department for Children, School and Families by email: . Scotland: Visit webpage Wales: Visit webpage Northern Ireland: Visit webpage

Every Child Matters The Government's ‘Every Child Matter’s’ initiative aims to ensure that every child, whatever their background or their circumstances, has have the support they need to: Be healthy Stay safe Enjoy and achieve Make a positive contribution Achieve economic well-being The campaign, started in 2004, has created a new climate for the care of children and young people with special educational needs (SEN). New emphases has been placed on integrating services around children and young people, on early identification and effective support for children with additional needs and on participation by the children and young people themselves.