Each child living with Prader-Willi syndrome (PWS) is an individual. They will each develop their own strengths, personality, skills and abilities.

It is essential that each child is assessed as an individual to deliver suitable education and explore their full potential. But account should also be taken of the effects of the syndrome that are common to most children.

Introduction

The Australia Government supports the rights of children and young people with disabilities to have the same education opportunities as other school students. They support learning by working with States and Territories in a few ways, including:

• Positive Partnerships
• Understanding Learning Difficulties: A Practical Guide
• Planning for Personalised Learning and Support: A National Resource
• Nationally Consistent Collection of Data on School Students with Disability
• COVID-19 support for students with disability

NDIS supports

By now, your child may also be a Participant of the National Disability Insurance Scheme (NDIS) with funding to purchase services. Refer to articles:

• Meeting the NDIS
• Early Intervention supports: See the article ‘PWS and the NDIS’.

Every child with PWS has different abilities

You can show the PWSA article ‘Information for Primary School Staff’ to potential schools for their guidance. It tells them about the dietary and other management/support needs of child. You should also provide them with specific information which is individual to your child.

Individual Education Plan (IEP)

The Department of Education has published a resource to assist schools in Planning for Personal Learning and Support.

Most states and territories highly recommends an Individual Education Plan (IEP), which is ‘a written statement that describes the adjustment, goals, and strategies to meet a student’s individual education needs so that they can reach their full potential. An IEP is essential as it helps you plan and monitor a student’s unique learning needs.’

For example, the key components of the Victorian IEP are:

• outlines clear educational goals for the student
• encourages student voice to allow the student to engage and take part in their own learning
• is strengths-based with a focus on the student’s potential to achieve positive educational outcomes
• is age appropriate, holistic in its approach, supports cultural needs and safety, and is flexible and future orientated
• includes short-term goals that will lead to the achievement of long-term goals
• is developed in consultation with the student (where appropriate) and their parent/carer/guardian. A Student Support Group (SSG) is required for students supported under individualised disability funding programs including the PSD and Disability Inclusion and those in OOHC, and strongly encouraged for any students with additional learning needs
• should be used (along with SSG minutes and documentation demonstrating student progress against agreed IEP goals) as supporting information for students participating in a Disability Inclusion Profile
• communicates individual and shared responsibilities
• includes a record of important decisions, actions, and student progress
• is supported and informed by other relevant plans such as a cultural plan or behaviour support plan
• is reviewed regularly in accordance with the timeline as agreed by all members of the SSG (or at least once per term for students supported under individualised disability funding programs including the PSD and Disability Inclusion and those in OOHC)
• acknowledges and celebrates the achievement of student progress.

Teachers already undertake many activities that personalise learning experiences for students. Research has shown that when schools use a planning approach that supports personalised learning, the academic achievement of all students improves.

Getting an IEP in Australia

The first step towards getting an IEP is for your child to have assessments by a speech therapist and an occupational therapist (OT). If your child already has speech and OT reports, they should be passed on to the school to aid in writing the IEP. Alternatively, ask the school to undertake these assessments. There may be a cost in preparing these reports, although you can generally apply for NDIS funding for speech and OT.

Choosing the right school for your child

You should research which schools are in your area. In many urban areas you will find State schools, private schools, and specialist schools. You can also learn about these from other parents of special needs children. You should visit all the possible schools and check if they can meet your child’s needs.

Mainstream or specialist school?

There is no correct answer here. Many children with PWS start their education in mainstream primary, with varying degrees of support. Others will begin their education in special needs schools.

Due to the range of ability in PWS, each child’s schooling needs will differ from another. Surveys of schooling of children with PWS carried out by PWSA UK have seen that there is a marked rise in attendance at special schools as age increases. Nevertheless, there is a significant minority of youngsters with PWS who do well in mainstream school.

It is very important that a clear understanding of what PWS entails is available to everyone involved from the very beginning of your child’s education, so that the school can make any necessary adjustments to the environment, teaching methods or curriculum.

They may have taught a child living with PWS before, but this does not necessarily mean the school is right for your child.

‘I found myself trying to push my son to be school ready. Things were not happening fast enough, but then I realised that the school needs to prepare for my son, not my son for the school.’

Father 

Your child at school

It is important to maintain a good relationship with your child’s school and address any concerns early on. A home-school diary is a good way of doing this.

If you feel that your child’s school is no longer meeting their needs, you should request a review to address your concerns and to consider whether they might be better placed in another school.

Access to food

Make sure all school staff, including office staff, transport escorts, caretakers, lunch support and playtime supervisors, are aware of the need to monitor access to food sources an other safety issues. The article on our website ‘Information for Primary School Staff’, can be used to let them know why this is so essential.

Classroom support

It is important to ensure your child has sufficient hours of classroom support. This is often additional 1:1 learning support. Most schools now employ teacher’s aides to assist students with learning difficulties. If you feel that your child needs more classroom support, you can request a review and provide a detailed log which should include the following information from teachers:

• Is the class being disrupted by your child – how often, how long for etc.?
• Is your child being limited in access to education because of lack of support – how, when?
• What is your child like at playtime and lunchtime? Is extra support required at these times – how long for?
• What are the triggers for disruptive behaviour?

Special occasions

Agree with the school beforehand how special occasions will be handled. If the class is going on an outing, or if the class is celebrating a child’s birthday, it is not necessary to exclude your child on account of his special dietary needs. You may wish for them to have special lower calorie treats or food provided by yourself, or for your child to be given a small portion of the treat if you are informed and can adjustment his meal when they come home.

We are here to help

Most children with PWS are very happy at school when the environment is right. But if you are concerned about your child and/or the school, please call our PWSA Team who will be pleased to offer guidance on how you could address the situation. We can also provide trainers to attend the school to upskill the teaching staff if you are a member of PWSA.

Thank you ….

to our colleagues at PWSA UK for sharing their original source material for this article.