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Your Child’s Education

Individual Educational Program (IEP)

A great educational experience is one of the best things you can provide for your children. However, Niemann-Pick Disease makes it more difficult for children to function in the classroom setting. In the United States, a federal law called the Individuals with Disabilities Education Act (IDEA) require public schools to develop an Individual Educational Program (IEP) for students who can’t participate fully in regular classes. The IEP is meant to maximize the student’s participation and educational opportunity. Development of an IEP can be a fairly long process, involving assessment of the student’s skills and abilities. Many parents have found it helpful to discuss their child’s medical condition and prognosis with your school staff before an IEP is necessary.

Listed below are several resources that offer information about an Individualized Learning Plan (IEP) and can assist you in helping design an IEP for your child.

IEP & IDEA Resources

Special Education Guide – The IEP Process Explained
What is an IEP?
Understanding Individualized Education Programs
Individuals with Disabilities Education Act – IDEA Information
U.S Department of Education – IDEA Information
Wrights Law – Advocating for Your Child

NPC Dementia Booklet

Dementia is something usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C (NPC) is an example of one of these diseases, and one of its main symptoms is dementia.

The NNPDF has an online booklet available for families, teachers, and caregivers, explaining how dementia may be exhibited in the Niemann-Pick Disease patient, and offering practical tips for dealing with the related challenges.  The booklet is titled Dementia in Children, Teenagers and Young Adults: A guide for parents, teachers and care professionals. Follow the link below to read the U.S. version of the Dementia booklet, modified from the booklet originally published in the U.K.


Attending School Guide for Parents

The Genetic Alliance has produced a guide that provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. This may also be a useful resource for bus drivers, babysitters, church leaders, or any other potential caregiver. Click the button below for a downloadable pdf version of this guide titled Students Living With A Genetic Condition: A Guide for Parents.


General Information on Educational Management for Young People with NPC Article

The following informational article is aimed towards teachers working with young people who suffer from Niemann-Pick Disease Type C. NOTE: The article was written in the United Kingdom and some specifics may not apply to schools in the United States. However, the general concepts apply no matter where one goes to school.

Acknowledgement: Grateful thanks go to Sylvia Robertshaw, Head of Multi-handicapped Department, Henshaws College, Harrogate, for her preliminary article “General Information on the Educational Management of Young People with Juvenile Battens Disease” and for her encouragement and support in helping Susan Green produce this article. Thanks, Susan, for sharing this with our families.


04/20/2017 jjb