Children and adults with PWS vary considerably in their cognitive abilities, ranging from severe learning disabilities through to mild or no learning disabilities, although in the latter case their emotional development can impact on the way they use the knowledge they have. Children may attend mainstream or special schools, depending on their ability and the amount of support they can access. Although there are only a few adults with PWS in full-time employment, many have a fulfilling life through part-time or voluntary work, or accessing educational courses.
The following links are sections from the PWS Journey. Families can obtain a hard copy of the whole PWS Journey, which is updated as their child reaches the next age range, by becoming a member of PWSA UK
For advice and support about applying for an Education, Health and Care Need Assessment about EHC plans, or about appealing a Local Authority decision. Please contact the office on 01332 365676 or email email@example.com
Developing your child’s potential – Birth to 2 years
Developing your child’s potential and preparing for school 2 – 5 years
Your child at school 5 – 10 years
Developing your child’s potential 5 – 10 years
Your child at school 10 – 13 years
Your teenager at school 13 – 18 years
Further education and options after school 13 – 18 years
Education, work and training 18 – 25 years
Developing skills, work and training 25 – 40 years
Work and training 40+ years
Free monthly telephone advice service - Special education
Education Lawyers at Langley Wellington LLP Solicitors are offering a free telephone advice surgery to families of children with Prader-Willi Syndrome.
Their telephone appointments last up to 30 minutes and they can provide information about the relevant law, how it applies to your child and appropriate next steps/options for you to consider relating to:-
• Special Educational needs for children between 0-25 years
• The Education, Health and Care Needs Assessment process from start to finish
• Transfer from Statements of Special Educational Needs to Education, Health and Care Plans
• Education, Health and Care Plans
• Appeals to the Special Educational Needs and Disability Tribunal
• Choosing a special school
If you would like to take advantage of this service, please contact PWSA UK Support Team staff member Patsy Counsell on 07525 197187 or email her at firstname.lastname@example.org
Patsy will then talk through the issue with you and, if appropriate, book an appointment for you with Langley Wellington.
The PWS Passport can be used to inform others working with or caring for your son or daughter about their needs - you can adapt it to fit your personal circumstances.
You can download it here
Information for teachers
You may find the following links useful to give to your son or daughter’s teacher for educational support staff.
Information for nursery school staff
The 33 minute video covers:
• Characteristics of the syndrome
• Early Years development
• Cognitive Abilities
• Dietary needs and management
• Health concerns
• Working with young children with PWS
• Guidance on what reasonable adjustments you might make to enable the child to access every area of the EYFS
• Transition to Primary School
Information for employers
The following link is to Best Practice Guidelines for Employers. This can be used for any type of employment, whether paid or voluntary.
Best practice guidelines for employers
If you have a question about education, work or training which is not answered in the links provided, please contact us.