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In partnership with Rare Voices Australia

Rare Disease Disability Project

Living Well with Change

Supporting children and young people with rare disease disability in the education setting.

On this page you’ll find:

  • Information about episodic and fluctuating rare disease disability
  • Tips on how to use the resources
  • 3 downloadable PDF fact sheets
  • Links to other web pages on education and websites on disability

These resources are for:

  • Children and young people living with episodic and fluctuating rare disease disability (referred to as ‘students’)
  • Families, carers, educators and support teams

Episodic and fluctuating disability describes a condition where a person’s abilities, symptoms or needs can change:

  • Many times a day
  • From day to day
  • Over time

These resources can help with:

  • Understanding how rare disease disability can change over time
  • Supporting communication, planning and inclusion

They help families, students and educators to work together.

Living with episodic and fluctuating rare disease disability

Rare disease disability is often unpredictable. A person’s abilities, health, energy levels and support needs may change from day to day, week to week, or even throughout a single day.

Students often experience fluctuations in any or all of the following:

  • Fatigue
  • Energy
  • Pain
  • Seizures and other neurological symptoms
  • Movement
  • Mobility
  • Eating and swallowing
  • Toileting and continence
  • Communication and thinking
  • Independence
  • Support needs
  • Vision changes
  • Sensory changes
  • Mood
  • Ability to engage
  • Health
  • Wellbeing
  • Other symptoms

These changes can create challenges for education planning, participation and support.

How to use this resource

There are three fact sheets. Fact sheet one provides an overview of episodic and fluctuating rare disease disability. Fact sheet two focusses on how to support students and fact sheet three focusses on communication. These three fact sheets can be used in different ways. Here are some ideas of how the resources might help you.

For parents and carers

  • Prepare for meetings with schools and other education providers.
  • Share with teachers, support staff and other professionals.
  • Start conversations about support needs, adjustments and inclusion.
  • Add notes specific to your child’s rare disease.

For students

  • Share what helps you learn, take part and feel supported when your needs change at school.
  • Talk with teachers and support staff about what you need.

For educators and support staff

  • Understand episodic and fluctuating rare disease disability.
  • Learn how support needs may keep changing.
  • Build collaborative relationships with students and families.
  • Support inclusion and participation at school.

Things to remember when using these resources

  • Each individual rare disease, student and family is unique. Good communication is key to achieving the best outcomes for both students and families.
  • In addition to academic outcomes, it is also important to consider inclusion, wellbeing and dignity.
  • These resources focus on making adjustments when fluctuations and changes occur. However, other things can also impact a student’s abilities and mood. For example, the system, their environment and how tasks are designed.
  • If you are not sure how to make adjustments, there are people and organisations that can help. The Quick Links section below has further information and suggestions.
  • Most importantly, look for opportunities daily. There are lots of ways to engage, participate, learn and be included. In rare disease disability, each day may be different, but each day we can make time count!

The fact sheets

Understanding Episodic and Fluctuating Rare Disease Disability in the Education Setting

Three fact sheets you can read on screen or print. Each opens as a PDF.

Overview of Episodic and Fluctuating Rare Disease DisabilityPDF

What episodic and fluctuating disability means, and why a student’s needs can change from day to day.

Download PDF

Supporting Students: Practical Strategies for Inclusion, Participation and Learning PDF

Practical adjustments schools can make so a student can take part on good days and difficult days.

Download PDF

Working Together: Communicating Needs and Navigating Support PDF

How students, families, schools and support providers can share information and plan ahead together.

Download PDF

This resource is accurate at the time of publishing (Oct 2026).

The information provided does not necessarily represent the views of Rare Voices Australia (RVA). RVA and Batten Disease Support and Research Association Australia are not liable for any loss, damage or consequences arising from the use or misuse of this resource.

How these resources were developed

These resources were created with families, educators, and rare disease organisations. Batten Disease Support and Research Association Australia listened to people with lived experience of rare disease disability to understand what works, what is challenging, and what information is most helpful. Their feedback shaped the content, language and design so the resources are practical, accessible and useful in real education settings.

About the project

Batten Disease Support and Research Association Australia (BDSRA Australia) has been funded to develop this resource through a Rare Voices Australia (RVA) Partner Project Grant, as part of the Rare Disease Disability Project. This work is funded by the Australian Government through the Peer Support and Capacity Building grant for the NDIS, which concludes in December 2026. RVA is the national peak body for Australians living with a rare disease.

The Living Well with Change resources contribute to the Rare Disease Disability Toolkit and support improved self-advocacy, education inclusion, and easier navigation of disability systems for people living with rare disease disability.

Some suggestions of where you might find further help and support for disabilities in education settings.

Links and resources provided are for general informational purposes only. We do not necessarily endorse, recommend, or approve any third-party websites, services, organisations, or content referenced. We do not control and are not responsible for the accuracy, legality, availability, or content of any third-party resources, and users access them at their own discretion and risk.

Explore more

Further toolkits, rare disease resources and support to continue from here.