• Kate Carroll, Senior Clinician and Research Physiotherapist
• Ashlee Cruz and Erin Georgiou, Senior Occupational Therapists
Dr Adam Partridge, Buckley Consulting Group
Thank you to Australian Institute for Teaching and School Leadership for their kind permission to include links to their videos in our eBook.
Further resources are available at https://www.aitsl.edu.au/research/spotlights/inclusive-education-teaching-students-with-disability
These resources were created with the assistance of https://getskilledaccess.com.au/
This project was funded by an Australian Government, Department of Social Services - Information Linkages and Capacity Building (ILC) program grant.
Muscular Dystrophy Australia (MDA) is working to bring a brighter today to people living with a neuromuscular disease (NMD).
We are delighted to present this interactive eBook edition of our Support Guide for Teachers and Teachers’ Aides: Working with students with neuromuscular disease. This guide offers accessible, up-to-date information on inclusive education for students with NMD.
Our eBook helps teachers understand the challenges faced by students with conditions like muscular dystrophy and spinal muscular atrophy. It provides practical advice and general strategies to enhance academic and social experiences, and addresses potential issues throughout the educational journey.
A strong partnership between school and family is essential, requiring ongoing communication to address new challenges promptly. This guide supports teachers, educators, and parents in fostering independence and self-advocacy in students with NMD.
Written for schools, special educational needs advisors, teachers, and teachers’ aides, this guide also benefits parents collaborating with schools to provide the best educational experience for their children.
MDA is here to support you, ensuring students with NMD can learn, have fun, and achieve their potential.
Dylan has Duchenne muscular dystrophy, a muscle wasting condition that deteriorates muscles over time. We asked him how this impacts his daily life, and he said,
Dylan Marguccio
“Getting ready in the morning, it takes twice as long than an everyday person getting in the car, getting to work, even socially. Making friends is really tough, but I get through it. That’s one positive I take out of it, I get through the day and that’s what I’m happy with.
“I can’t walk or transfer, so I have to be hoisted, which many people don’t have to do. It is actually quite uncomfortable in a harness which is annoying, but you have to do it because there’s no other way. Going on a ramp into a car is sometimes a bit how do I say it? embarrassing. It’s not really, but sometimes it is because you’re not stepping out of a car opening a door. You have to get someone to put the ramp down, be locked into the chair and put the seatbelt on. You can’t do it yourself. And at school as well. You have to have someone there all the time to help you get things out of your bag. You can’t get it yourself, can’t get your own pencil. So that’s some of the things I struggle with.
“I’m getting used to it now. It’s just normal in life. You just have someone with you to help. And that’s what I do now. I just stay positive. I don’t worry about what other people say to you.”
About Neuromuscular Disease Section 1
Summary
• The combination of the nervous system and muscles, working together to permit movement, is known as the neuromuscular system.
• Many diseases are classified as neuromuscular disorders.
• Impact of NMD on learning
About the neuromuscular system
The brain controls your muscles so you can move. It does this using special nerves. When the brain and muscles work together to make movements, it’s called the neuromuscular system.
Here’s how it works:
When you want to move, your brain sends a message to the nerve cells called upper motor neurons.
These neurons have long parts that go into your brain and spinal cord.
In the spinal cord, they connect with lower motor neurons.
The lower motor neurons send signals through nerves in your arms and legs to your muscles.
The brain sends an electrical signal through these nerves, making the nerve endings release a chemical.
This chemical is detected by special sensors in your muscles. When enough sensors are activated, your muscles contract, making you move.
If there’s a problem with the neuromuscular system, it can lead to a condition called neuromuscular disease (NMD).
What is neuromuscular disease (NMD)?
Many conditions are classified as neuromuscular diseases. They are conditions that affect some part of the neuromuscular system, such as:
• the muscles
• nerves in the peripheral nervous system (e.g., arms and legs)
• the neuromuscular junction where the nerves and muscles meet
• nerves in the central nervous system (motor neurons in the spinal cord)
Most neuromuscular diseases are progressive in nature, and they typically result in muscle weakness and fatigue, among several other symptoms. They vary according to the condition and may be mild, moderate, or life-threatening.
Muscular dystrophy is one form of NMD that refers to a group of medical conditions that affect the nervous system, muscles, or both. These disorders can result in weakness, wasting, or degeneration of muscles, and can cause various symptoms such as difficulty with movement, breathing, and swallowing.
Muscle weakness and fatigue can make it difficult for some students to keep up with the physical and educational demands throughout the school day, but the appropriate accommodations can help compensate for this.
Some neuromuscular diseases are present at birth, some manifest in childhood, and others are adult-onset. Neuromuscular disorders may be passed down through family genetic lines, and in some cases, students may have an affected sibling, parent, or another relative.
At other times, there is no family history, and the disorder is the result of a spontaneous genetic mutation, an abnormal immune response or an unknown cause.
Life expectancy for those living with NMD varies by disease and severity. Research and medical interventions have increased life span and improved quality of life for many individuals. These interventions focus on treating or delaying symptom onset, enhancing physical mobility and social interactions, and preventing heart and lung complications.
At present, there’s no cure for most NMD, but there are now some treatments available for some types to further improve medical outcomes.
Common Types of NMD
• Duchenne Muscular Dystrophy (DMD)
• Becker Muscular Dystrophy
• Charcot-Marie-Tooth Disease (CMT)
• Limb-Girdle Muscular Dystrophy
• Myotonic Muscular Dystrophy
• Facioscapulohumeral Muscular Dystrophy (FSHD)
• Spinal Muscular Atrophy (SMA)
• Congenital Myopathy
Types of NMD
How NMD Impacts Learning and School Participation
Impact of NMD on School Participation
Summary
• The importance of school attendance for students with progressive disorders like NMD is emphasised, despite associated learning difficulties.
• Careful planning can enhance a student’s range of experiences and quality of life, leading to opportunities for enjoyment and friendship development.
• Many students with NMD have excelled academically and professionally due to early educational encouragement and support.
• School choice –mainstream, special, public, or private—depends on individual needs and family preferences, considering factors like physical accessibility and learning support.
Muscle weakness and fatigue are common symptoms of all neuromuscular disorders. Individuals often experience greater levels of fatigue than same aged peers, due to the increased effort required to complete tasks. These symptoms can make it difficult for some students to keep up with the physical and educational demands throughout the school day. Fatigue can impact classroom participation and an individuals’ ability to learn, including their ability to focus, process and remember information.
Additionally, learning difficulties can be more common in some neuromuscular conditions. It is important to speak with the student’s team to determine if they may have additional learning support needs. A cognitive assessment can be useful to identify the students’ areas of strength, as well as any areas of difficulty. This can help to tailor supports and strategies in the classroom environment.
Unlike many other children with physical disabilities, children with NMD will have changing needs during their school years, as their muscle strength deteriorates. Schools need to be prepared and ready to deal with these changing needs.
A child may be fully mobile when he or she begins school, for example, and by the time they leave, could be in a powered wheelchair, needing help with personal care, such as eating or going to the toilet.
It is essential for schools to plan for:
• a fully accessible school environment
• a supportive curriculum
• appropriate educational and care support staff training
• working collaboratively with parents and other professionals
• positive messages about disability for the child, other pupils, and adults within the school environment.
It is important to remember NMD is not generally associated with a specific personality type. All students are individuals and some with NMD are outgoing, some are quiet, and some will misbehave. It is important to remember that apart from their disorder, they are normal children. Therefore, they should be expected to follow school rules and be held accountable for their actions.
Watch Psychologist Adam Partridge
When helping students to access the learning environment, the underlying principles are:
• maintain dignity
• ensure the student is safe and comfortable
• consider individual preferences/needs
• promote independence
• plan ahead
The F Word (Fatigue)
• May vary from one week to next
• Task related fatigue ie: handwriting, reduced mobility
Fatigue makes learning hard!
Reproduced with kind permission from the RCH Neuromuscular Team.
Choice of School
All children have the right to enrol in their local government mainstream school. Many children with neuromuscular disorders attend mainstream schools which includes government, catholic and independent schools. These schools offer advantages such as social integration, diverse subjects and curriculum, and pathways into higher education.
For some children, a specialist school may better suit their needs.
Specialist schools include special schools, as well as special development schools. The type of specialist school that is most suitable for the child will depend on their support needs. A cognitive assessment may be arranged to help inform this. Specialist schools are experienced at supporting children with physical and cognitive support needs. They can offer advantages, such as more flexible curriculums, and a focus on the development of skills required for everyday life.
Flexible arrangements between mainstream and special schools through dual enrolments, can also be considered to optimise the students support and education.
When considering a school, it is helpful to consider the child’s current function, as well as their possible future function to ensure the school selected will meet their needs throughout their education.
Home schooling is another option where the parent is responsible for directing learning, requiring vigilance to ensure successful integration into the school environment.
Training and support for school staff are essential, with opportunities for external training and a regular review of practices to ensure students to excel.
Resources like the Independent Living Centre can provide equipment information and support.
Participation is not just attendance!
Encourage active participation – in all aspects of school life.
This may include:
• Excursions and camps
• Swimming programs
• Accessing the library, art rooms, science labs, etc.
• Assemblies
With a positive attitude and focus on abilities rather than disabilities, students with NMD can thrive academically and professionally, leading to successful careers or tertiary education.
Independent Living Centre
CASE STUDY
DEVELOPMENTAL TRAJECTORIES FOR DUCHENNE MUSCULAR DYSTROPHY
TYPICAL DEVELOPMENT
PRESCHOOL
• Learning about feelings
• Playful & Active
• Language
PRIMARY SCHOOL
• Enhanced knowledge of feelings
• Social growth – belonging and sharing
• Eagerness to please
• Sensitive to embarrassment
• Tuned in to life events – curious
• Testing limits of movement – complex
• Mastering more difficult tasks
• Enhanced reasoning abilities
SECONDARY SCHOOL
• Physical and cognitive growth
• Identity
• Experimentation - values
• Independence and responsibility
• Risk taking
• Friends vs family
• Separating emotionally from parents
• Comparing self to others
• Intimate relationships
Reproduced with kind permission from Dr.
DEVELOPMENTAL COMPLEXITIES
• 18-months – 3-years muscle weakness manifests
• Motor development slower
• Speech production delayed
• Diagnosis typically confirmed
• 6-10 years muscle power decreases
• Difficulties running, climbing stairs and jumping
• Slower and less physically capable
• Prone to falling
• Walking compromised
• Tired and fatigued
• Further increase in muscle weakness
• Wheelchair dependent
• Hand function may decrease
• Social isolation
• Increasingly reliant on carers
“ ”
Remember, the student is still going through all the changes experienced in growing up through childhood and adolescence.
Dr
Adam Partridge, Clinical Psychologist
Adam Partridge, Buckley Consulting.
Working Together – Roles and Responsibilities
Student Support Groups (SSG)
A Student Support Group (SSG) facilitates communication among parents, the school, and other individuals involved in a student’s care, and aims to address students’ needs.
Summary
• Student Support Groups (SSG) facilitates effective communication among parents, school staff, and other stakeholders, aiming to address students’ needs.
• Responsibilities include updating progress, setting goals, and ensuring equal participation in meetings.
• Establishing communication channels, understanding students’ conditions, and involving them in decisionmaking are emphasised.
• Planning for future needs, understanding the condition’s progression, and collaboration between teachers and parents are vital.
• Schools encourage open communication, plan ahead, and ensure inclusivity in teaching and activities.
The group typically includes the principal, classroom teacher, parent(s), an advocate if needed, the student (if applicable), an interpreter if necessary, and specialists like occupational therapists or physiotherapists.
Regular meetings allow for tracking progress, addressing concerns, and setting goals. It’s also a chance for private discussions between parents and the school regarding the student’s condition.
Principal
• Provides information on support available when enrolling a student with disabilities.
• Facilitates SSG meetings, ensuring equal participation and maintaining accurate records.
Classroom teacher/teachers’ aide
• Updates the SSG on the student’s progress and assists in setting educational goals.
• Ensures the student can access educational programs and implements individual learning plans.
Parent/Guardian/Carer(s)
• Provide valuable insights and support to the SSG, contributing to decisions on strategies and programs.
Student
• When appropriate, involve the student in program development, considering their preferences and interests.
Advocate
• Supports parents in participating fully in the SSG process, facilitating communication, and understanding.
Interpreter
• Assists in SSG meetings as required but isn’t considered a member of the group.
Consultants (Department of Education)
• Offer expertise to establish educational goals, develop programs, and implement strategies.
• Student Support Services Officers, which include allied health professionals provide valuable support to students and schools, helping improve student outcomes and develop Individual Learning Plans.
• Additionally, various professionals and stakeholders may contribute to the SSG, such as integration teachers, medical practitioners, and special education consultants. Collaboration between schools maximises available resources and expertise, benefiting students’ needs.
Communication
• Establishing effective communication channels between teachers and parents is crucial, especially for addressing urgent matters promptly. Consider implementing a communication system like a diary or communication book that both parties can use to address minor concerns immediately.
• It’s important to inform parents about how their child will be assessed and monitored in the classroom to align expectations. Additionally, always give the student a chance to express their needs and desires.
• There are a number of Apps and websites that provide the latest ideas and information for working with people with disabilities.
12 Apps for smarter communication
School buildings
• School building accessibility is an essential consideration for students with reduced mobility.
• When selecting a school for their child, parents consider various factors, including accessibility. They may have more questions and require more information than other families to help with their decision. It’s essential to be prepared for their inquiries and be open to making necessary accommodations to ensure the child’s integration.
• Occupational Therapists can complete assessments of the school environment and make recommendations regarding modifications required to support the students safety and participation.
• If modifications are needed, schools should contact regional Education Department Offices.
Medical and other issues
• Ensure students have timely access to medications and discuss medication details and potential side effects with parents.
• In addition to medical concerns, classmates, parents, and teachers may have questions about how to interact with a student affected by NMD.
• Develop trust and open communication with parents and the student, to obtain information about the disorder and encourage discussions about the child’s abilities and needs. Parents and medical staff are valuable sources of information.
• Respect parents’ comfort levels in discussing their child’s condition and offer support when needed, including counselling if necessary.
• It is essential that parental and student consent is obtained prior to disclosing any information about the student and their condition to others. This includes the students peer group and other teachers. Some students will NOT want their peers to know about their diagnosis.
• Open communication with students about their condition fosters comfort and encourages questions and self-expression. However, check with parents about what the student knows about their condition first.
These responsibilities are outlined in the SSG Guidelines published by the Victorian Department of Education.
Guidelines
Section 3
Tips for planning for the future
• Planning for the future needs of children with NMD is crucial, especially as their physical abilities may change significantly over time.
• Understanding the child’s condition and its potential progression is key.
• It’s important to anticipate these changes and act promptly when needed.
• Regular reviews of the child’s needs, updating Statements of Special Educational Needs if applicable, and considering various aspects such as physical access, equipment requirements, and support from both school staff and outside agencies are essential.
• Staff training and collaboration between teachers and parents are vital for success, ensuring everyone is clear on their roles and responsibilities in supporting the child’s education and well-being.
Tips for schools
• When teaching and working with students with NMD, consider the following:
• Don’t make assumptions
- If you have questions about something, ask the student or the parents. The student and their family have the most knowledge about the disorder, the student’s abilities, and appropriate accommodations.
• Encourage open communication
• Plan ahead
• Be open-minded
- Nearly every activity and skill can be completed by students with NMD. It is especially helpful if you can think outside the box, and brainstorm with the student’s parents to determine how the student can be fully engaged. Knowledge of essential skills can be demonstrated in a variety of ways.
• Be inclusive
- If notes or outlines will benefit the entire class, give them to every student, as some accommodations can help everyone succeed.
- If you ask students who are physically able to assist you, also ask students who are affected by NMD or other types of disabilities.
- Make sure class seating allows for everyone to participate and ensure no one is left off to the side or isolated from the group.
Other children
Working towards social integration is probably the most difficult part of the integration process in a mainstream school. It is not enough to place a child in a school (physical integration), provide access to the curriculum (academic integration) and then regard the integration as complete. Integration is a process, not a result. How children relate to each other and how children and adults interact is as much part of the education as any part of the curriculum.
The earlier a child can be integrated into a school the easier the process will be. As some NMDs are progressive conditions it may take some time before other children realise their friend is different in some way. Early questions usually centre on why they can’t run as fast as everyone else or why they sometimes get tired.
As a child begins to have more physical difficulties, discussing what information can be shared with others with the child and their parents.
Adult attitudes and responses are crucial in fostering positive attitudes in children. Teachers and parents may discuss the need to answer questions simply and honestly. An explanation like “He can’t run as fast as you because his muscles get tired” is adequate for small children.
Sometimes a teacher or health care professional can talk to the class. This often helps a group of children to understand the situation better and to be more supportive.
School staff should remain alert to difficulties and should encourage participation in activities that all children can enjoy. They should also know when to step back and allow the child some adult-free time!
Other resources
Watch this Australian Institute for Teaching and School Leadership (AITSL) video on creating an inclusive school culture.
Creating an inclusive school culture
Section 4
Psychosocial, Emotional and Physical Needs
Summary
• Understand the emotional stages and challenges faced by students with NMD, during primary and secondary schooling.
• Learn strategies to support students aged 1 to 8, including using age-appropriate language, promoting inclusivity, and building selfconfidence.
• Recognise the importance of promoting independence and addressing emotional concerns during secondary schooling, including monitoring for depression, and addressing social isolation.
• Gain awareness of adaptive equipment used by students with NMD, such as wheelchairs and assistive devices, and understand how to facilitate their acceptance and use in the classroom.
• Understand the factors influencing psychosocial adjustment for students with NMD, including memory span, learning disabilities, sensory processing difficulties, attention issues, and impulsive behaviour.
• Learn effective ways to support individuals affected by grief and loss, including being present, listening without judgment, and acknowledging significant dates, and knowing when to seek professional support.
• You can call MDA and speak to the client support team for assistance with professional support networks.
Up to one third of boys with Duchenne MD have a learning problem, but these are unlikely to be significant. There are also increased risks of ADHD, dyslexia and cognitive skills.
”
Royal Children’s Hospital
Emotional Development
Students with NMD undergo various emotional stages. For example, a child with Duchenne Muscular Dystrophy may not initially grasp their condition’s implications. Emotional challenges can affect both family and school life.
Here’s a breakdown of emotional stages together with some guidance:
• Primary Schooling
- Children aged 1 to 8 may not understand their condition fully.
- Use age-appropriate language and involve parents in discussing NMD.
- Avoid terms such as illness and disease.
- Address potential bullying by educating peers about the disorder and promoting inclusivity with student/parental consent.
- Encourage open discussion about the student’s needs and feelings, emphasising their talents and abilities.
- Focus on the present rather than the future, building self-confidence.
- Children, although young, understand more than adults think they do.
• Secondary Schooling
- Promote independence while acknowledging the disorder’s impact on daily activities.
- Monitor the student for mood changes (e.g. anger issues, anxiety, depression) and link with psychology supports if required.
- Nurture self-esteem and self-efficacy.
- Provide a safe space for expressing concerns.
- Make sure you have a clear understanding of the disorder and admit when you don’t know the answer to something specific.
- Clear up any misconceptions about the disorder and discuss all your students’ concerns and fears.
- Address social isolation.
- Recognise grief and loss as students anticipate future limitationsanticipatory loss can lead to a range of emotions, all of which your student may or may not experience. These include denial, anger, bargaining, anxiety, depression, and acceptance.
- If your student passes on or suffers from a severe health issue during their schooling, allow everyone to feel safe and able to talk about their feelings without fear of reprisal. It is also important to remember that we all cope differently and that different things affect us all.
Emotional Wellbeing
The impact a physical disability has on social and emotional well-being is different for each student and is dependent on:
• the personality of the individual
• reaction to a situation and their ability to cope
• severity of the disability
• level of dependence on others (especially regarding areas of self-care (eg: eating, drinking, dressing and personal hygiene), and limitations placed on the choice of activities)
• age
• awareness of their disability and its progressive nature
• family attitude/perception
• attitude of the school community
All members of the school community (peers, teachers, teacher aides, administration staff etc.) make an impression on the student. Ask yourself:
• Does the school have a welcoming climate?
• Is your student included willingly in all aspects of life at school?
• Is your student seen as a person first or is the focus on the disability?
If you answered ‘no’ to any of these questions, try to work out a way to change your answer to a ‘yes’! Education for both students and staff are great ways to start changing the attitude of the school community.
Tips for Health and Wellbeing in the Classroom
It’s important to consider various factors to ensure success for students with neuromuscular diseases in the school setting. While not all students may experience acute health concerns, those with compromised respiratory function may be more vulnerable to common illnesses due to weakened immune systems, especially if they’re taking corticosteroids. They may also take longer to recover from infection conditions such as colds, flu, COVID-19 and RSV.
To mitigate risks, students with compromised respiratory function should avoid classrooms with high rates of communicable diseases. All children who are unwell should be encouraged to stay at home until they have recovered. Implementing classroom habits that limit the spread of germs, such as avoiding shared utensils, covering sneezes and coughs, and promoting thorough handwashing, creates a healthier environment for all students.
Other Resources
AITSL video on The Language of Disability and Accessibility
The Language of Disability and Accessibility
Tips for the Classroom
• Work with the student, not the disability.
• Do not assume, either wait to be asked or check.
• Do not speak about the student in front of them.
• Help the student to problem solve with you, don’t provide all the answers.
• Encourage the student to listen to the teacher, avoid aides becoming surrogate teachers.
• Be in the most appropriate position for conversation, you may need to bend down to speak to a student in a wheelchair.
• Promote student involvement in discussion. Encourage others to address their comments and questions directly to the student.
• Do not speak for the student unnecessarily.
• Do not be a constant minder. You can keep an eye on things from a few steps back. Try not to interfere with social interactions between students. Students with a physical disability are sometimes deprived of personal freedom and privacy.
• Provide opportunities for students with a physical disability and their peers to accept responsibility for their actions.
Some of the significant emotional stages for a child include starting primary school, losing mobility, moving to secondary school, adolescence and all the usual teenage worries.
Although you have limited control over many of the other aspects of your student’s emotional wellbeing, try to understand your student’s concerns in other aspects of their life. Listening to your student’s concerns is often a powerful first step in emotional repair.
Section 5
Environmental Adjustments and Adaptations
Factors Influencing Adjustment
Some of the factors influencing psychosocial adjustment for children with NMD include:
Summary
• Adaptive equipment can support the safety, comfort and independence for students with physical disabilities.
• Teachers’ familiar with such equipment can encourage its acceptance, promote independence.
• If student’s educational, emotional, and physical needs are met they have the best chance to succeed at school.
• Poor immediate verbal memory span (i.e. the ability to listen and process verbal information) may make your student lag behind his peers. This may be observed in students as them being noncompliant, inattentive or forgetful.
• Learning disabilities can also affect psychosocial adjustment as it has been linked to problems with social behaviour.
• Difficulties with sensory processing and emotional regulation can also affect psychosocial adjustment.
• Attention difficulties and impulsive behaviour can impact both your student and the rest of the class.
Access - Consider access issues across all school areas, including
Use of Adaptive Equipment at School
Many types of adaptive equipment may also be used to help your student function as independently as possible despite a physical disability.
Adaptive equipment may include items such as:
• Artificial Foot Orthosis (AFO’s)
• Wheelchairs/mobility scooters
• Laptops, tablets, mobile phones to record classes/complete school work
• Devices to aid buttoning and zipping clothing and footwear
• Specialised equipment for toileting e.g. over toilet frame or a commode
• Standing frames can allow some non-ambulatory students to continue to bear weight on their legs, promoting healthier bones, better circulation, and a straighter spine.
• Transfer boards and mechanical lifts (hoists) make it easier and safer to move a non-ambulatory student.
classrooms, grounds, library, sports facilities, administration building, toilets, and more. Grants are available for modifications to support students with NMD.
Building access - the Building Code of Australia outlines modifications to ensure accessibility. Refer to guidelines for details. Additional equipment like commodes or hoists may be needed. Contact the Department of Education for assessments and further information.
Choice of Subject Students with NMD may face limitations in subject choices due to inaccessible rooms or equipment. Altering the environment can enable access to all subjects. Consider future pathways when selecting subjects, as this impacts tertiary education options.
• Walkers, wheelchairs and foot, ankle and leg orthosis keep students safely mobile and part of the social scene.
• Use of an electric wheelchair enables students with weak arm muscles to be as independent as possible, which is very important for self-image and self-esteem
Although these devices are not familiar to most people, a teacher who is familiar with adaptive equipment can facilitate acceptance and use of these “tools” to encourage independence.
Adapting the learning environment
By following these principles, a student’s educational, emotional, and physical needs can be met to give them the best chance to succeed at school.
• School timetable: Limit movement between classrooms for specialist activities to minimise physical exertion.
• Extra time: Allow extra time for moving between classrooms to avoid busy corridors and disruptions to the next class.
• Integration/teachers’ aide: Provide a classroom integration aide for mobility and personal care to speed up tasks and reduce absences from class activities.
• Exercise/sport: Encourage participation in normal play exercise, adjust rules for fatigue, and consider wheelchair sports.
• Classroom activities: Utilise the student’s abilities and talents more frequently in classroom activities.
• Laptops: Use of laptops and computers can assist in speeding up writing tasks and promoting independence.
• Understanding about the disorder: Incorporate activities in class to educate students about the specific disorder affecting the student.
• Buddies: Allow other students to assist the student with simple tasks, benefiting both parties.
• Outings/camps: Ensure outings and camps are wheelchair accessible and amenities are close by.
• Height-adjustable table/table raisers: Provide accessibility and support in the classroom, enabling participation with less assistance.
Muscle weakness particularly in arms and hands can impact
Focus on reducing effort!
• Getting dressed in school uniform in the morning
• Carrying a backpack or books
• Opening a drink bottle or containers at lunch time
• Managing clothes for toileting
• Handwriting endurance, quality and volume
Resources
For information and ideas on adaptive technology.
Sourcekids
Common educational accommodations
These areas should be considered in consultation with family, medical experts and school staff during the planning process or as they arise:
• Special transportation
• Need for physiotherapy or occupational therapy at school
• Medical care and prevention of infections
• Curriculum modifications
• Provision of teacher’s aides and note-takers
• Additional small group or 1:1 learning support, if required
• Implement laptops, scribe or voice-to-text software if the student has difficulty with handwriting speed and fatigue
• Modified physical education
• Fatigue management strategies
• Special transportation requirements
• Use communication devices if required
• Bathroom assistance
• Inclusion of students with disabilities in social and extracurricular activities - i.e. assistance, care and transportation for excursions and school camps
• Evaluate weather during recess times for extreme heat and cold and offer indoor activities if necessary
• When a student is unable to participate in outdoor recess, allow other students to participate in the designated indoor recess activity so the child does not feel excluded
• An extra set of textbooks to keep at home, to minimise carrying a heavy load or recommend electronic texts
• Classroom and school campus accessibility modifications
• Help making/accessing friends and social relationships
• Putting students in charge of their own care, to the best of their abilities — i.e. directing their aides, requesting accommodations, advocating for their needs, making choices and decisions – which will help them develop emotional and social independence as their physical dependence increases
• Allowing alternative ways to demonstrate understanding of a concept, where required, such as making an oral rather than a written report
• Provide a locker located on the end for easier access, and be aware that accommodations for a different type of lock may be needed
• Use computer-assisted learning and allow the use of AI/Chat GPT
• Using strategies to compensate if there are any learning, memory or language-processing difficulties
• Implementing homebound (at-home) instruction for medically fragile children that features consistent support, communication, followthrough and high expectations
• Strongly emphasising your student’s strengths and abilities, don’t focus on their disability
An Occupational Therapist can assist with
• Equipment and access to technology to support participation
• Modifications required as part of the Accessible Buildings Program
• Allied Health specific information in a Student Health Support Plan for learning, hygiene, and access
• Ongoing support to modify curriculum access as the student’s needs change
• Determining frequency of therapy input required at school
• Supporting documentation for funding and VCE special examination arrangements
Ashlee Cruz
Dylan Azzoparti, Tereza Salevski (right) and Shelby Rust (left)
INTERVIEW “ ”
“There’s a range of ways occupational therapists collaborate with teachers to support students’ in the school environment. I’ll give an example.
“I had a young boy who came into the neuromuscular clinic and told us he was avoiding drinking water at school so that he didn’t have to go to the toilet”.
“When we explored this further, we discovered the reason he was avoiding going to the toilet was because he didn’t feel safe. His balance was poor and so when he had to stand to go to the toilet, he felt unsafe.
“We worked with the school to determine a safer way for him to toilet. This involved using equipment such as a raised toilet seat, as well as making some environmental modifications such as installing handrails. The child’s community OT was able to visit the school to prescribe the equipment, and also provide education to school staff on how to support the boy to toilet in a way that was safe for both the aide and boy,while also maintaining his integrity and privacy.”
Ashlee Cruz, Occupational Therapist, Neuromuscular Clinic, Royal Children’s Hospital.
CASE STUDY
“I believe students learn through observing and watching adults’ behaviour. Everyone is equal no matter where they come from, what they look like or who they are. Everyone deserves a chance, so that’s how I integrate students into the classroom.
“If adults perceive we’re all equal, I think it makes a huge difference. Students play off on the behaviour of adults because they are role models, so if an adult is disrespecting a special needs child, then the students will follow.
“Sometimes I join tables together so Dylan can work with other students. I will speak to other students and join Dylan into the conversations. Sometimes it’s having the conversations with students about understanding that we don’t look the same, but we deserve the same respect.
“It’s vital to listen to the parents and to the student about their needs because they know best what’s
beneficial for their situation. I think it’s essential to build a relationship with the family because if the parents don’t feel safe sending their child to the school, then it’s not going work for anyone.
“Relationship building is huge in my book and not being embarrassed to ask questions. If you’re unsure, it’s making a phone call and going, ‘hey, you know this happened. I just wanted to check if that’s something he does at home or has he been feeling like this, or he’s mentioned this to you?’ so we can apply the same techniques at school.
“It’s always having close communication and making sure we’re following the same plan as prescribed by the doctors, OT or physio so we minimise the stress at both home and school because we all understand how difficult it can be.”
Encouraging a positive attitude, finding unique ways to do things, setting sensible goals and reaching them, will help in managing troubling emotions and behaviours.
Looking for opportunities to express pride in the child’s accomplishments or refusal to let the disability stop them.
Admiring intelligence, determination, sunny disposition, good attitude, tolerance and acceptance of others, patience, kindness and love, sense of humor, flexibility and imagination all help.
Physical Education
It is important to understand the main purpose of physical education for students with NMD is to allow them to interact with their peers and become an integral part of the class. It is important to make sure that your student feels included and not isolated in physical activity.
During games, give your student a chance to develop a sense of control by giving them choices about how to participate. For example, give your student the option of having a runner or allowing your student to walk
CASE STUDY
themselves or modifying the rules such as using a smaller playing area, allowing two bounces before hitting a ball can help in achieving a successful outcome with your student.
Even after your student has reached the stage when he/she is permanently in a wheelchair, he/she should still be able to participate. Keeping score, serving as an announcer and other non-physical roles are different ways for your student to participate.
We interviewed Daniella Villano, Neuromuscular Nurse Consultant at The Royal Children’s Hospital, Melbourne who related the following story.
“A young man with Duchenne Muscular Dystrophy (DMD) was initially left to his own devices by his school. He spent his time during school hours on the computer with no structured learning due to the school’s misinformation about his future prospects.
“This opinion certainly changed once our team spent some time educating them on DMD and future goals. The student was able to meet his education needs once he and his family were involved in building a curriculum that catered for his interests, abilities and family background in farming.
“The school implemented a curriculum that included farming-related activities, allowing the young man to participate in tasks using a motorised scooter and drone to manage livestock. He also learned bookkeeping with his father’s guidance. This tailored approach transformed his educational experience, boosted his family’s morale, and provided him with practical skills for his future.
“The program was a success, with the school realising his intelligence and abilities, previously overlooked. This initiative not only benefited the young man but also served as a model for other schools in rural areas, demonstrating how personalised education can empower students with disabilities to pursue their interests and achieve meaningful outcomes.”
It is important to make sure that your student feels included and not isolated in physical activity.
Section 6 Managing Health Issues
What to do in an emergency
In the unlikely event of an emergency, it is important to be clear about your student’s medical history and disorder. Maintain regular contact with your student’s family and stay informed on your student’s changing medical circumstances. Be alert and prepared during high-risk times during the day (i.e. mealtimes if there are swallowing problems).
Summary
• In an emergency follow the school’s protocols and maintain regular contact with the family for updates on medical circumstances.
• NMD management involves a multidisciplinary team overseeing heart, lungs, back, and muscles.
• Various interventions aim to treat symptoms, enhance mobility, and prevent complications.
If an emergency arises at school, follow the protocols the school has in place for injury or illness for students are relevant for any student with NMD or other disability.
• Remain calm and clear the immediate area
• Administer first aid
• Maintain breathing and heart rate
• Call an ambulance and contact parents/guardian
Overview of health
NMD management involves a multidisciplinary team monitoring the heart, lungs, back (for scoliosis), and muscles (for contractures). Daily life includes appointments with doctors, physiotherapists, and occupational therapists, often during school hours. Awareness of these commitments, such as fatigue after physio, is crucial for student integration.
While some neuromuscular conditions maintain normal sensation, others may cause a loss or reduction in sensation. Precautions, like avoiding prolonged wheelchair sitting, are necessary to prevent discomfort and injury.
Many young people with NMD maintain normal sexual function, experiencing typical adolescent challenges and desires.
Physiotherapy in schools
• Most kids with NMD will have their own physio
• Some schools will bring in physios to consult
• There is overlap between physio and OT
• Typical physios may have input regarding
- Mobility
- Wheelchairs and other mobility aids
- Access and safety
- Managing endurance and fatigue
- Inclusion and participation
Medical interventions
Medical interventions have increased the life span and improved quality of life for many medically fragile students. These interventions focus on treating or delaying symptoms, enhancing physical mobility and social interactions and preventing heart and lung complications.
Some children with NMD will be prescribed Corticosteroids. These have been proven to slow the progression of muscle weakness in children with NMD and may also help preserve the heart and breathing muscles.
Treatment for NMD is aimed at reducing the symptoms and keeping children as healthy and active as possible, for as long as possible.
While there are no cures for NMD yet, scientists around the world are working toward treatments that may make a significant difference to the outcomes for people with NMD.
MDA is working in collaboration with its Scientific Advisory Committee to fund research which aims to stem disease progression and regenerate muscle, ultimately making a significant impact for people living with NMD.
It is important to discuss any medication or medical requirements with the parents to ensure the needs of the student are met.
Moving and Handling Students
Summary
A student with NMD has many unique needs. Many of the day-to-day tasks that we undertake are not able to be performed by a person with NMD. Often there is equipment to help with these tasks that may require the help of an aide.
It is crucial that both you and your student’s aide know how to use all of the equipment confidently. A visiting Occupational Therapist or Physiotherapist can teach you how to use the equipment your student may need.
First and foremost, the care of your back and body is crucial. You must always take care by following lifting and manual handling procedures.
Liaising with the Occupational Therapist and Physiotherapist your student is working with will ensure you are aware of their needs.
How we move
No need to be afraid!
The hoist can:
• Provide a safe and dignified way for a student with NMD to move
• Protect staff safety
• Provide a more sustainable method for support team
• The OT and Physio can help!
Preventing an injury is about getting into good habits. Here are some hints to help avoid injury whilst assisting your student.
Equipment
• Always use lifting equipment (Lifiting more than 15kgs manually is not recommended)
• Learn how to use the equipment correctly
• Store equipment in an accessible place
Environment
• Make sure you have enough space and that the area is free of obstacles
• If more than one person is lifting, make sure that you work together, the leader giving commands
You
• Stay fit and health
• Allow for rests
• Wear suitable clothing and footwear – flat shoes are best
With a positive attitude and a policy of open discussion, most children enjoy their time at school.
Section 7
Planning for a transition to life after school
For young people, preparation for adult life is an important part of their planning and support.
• Preparing for adulthood should include:
• looking at options for further/higher education, training and /or employment
• exploring options for independent living
• being able to participate in society and contribute to the community
• being as healthy as possible in adult life.
Transitional planning, initiated early by schools, helps determine future goals and accommodations needed. Schools play a crucial role in facilitating effective individual transition planning by involving key staff, including coordinators and senior members, and collaborating with various agencies and services involved in the transition process.
All discussions about their future should focus on the young person’s strengths and capabilities, the outcomes they want to achieve, and the best way to support them for the future.
In making this decision, young people with NMD should have the same educational choices as other students:
• to stay at the school
• to move to a TAFE to complete VCE
• to aim for higher education/university
• to undertake open learning
To make an informed choice the young person may also need help and advice about work options. Employment can be challenging due to physical limitations, but education, particularly through computerbased learning, can help develop skills. Higher education often provides support services for students with disabilities, aiding in their transition to employment.
Post School Options
Checklist for Transition Planning
Transition planning should:
n Ascertain the young person’s views and aspirations, and how these can be met.
n Be person-centred and support young people to participate as fully as possible in the planning and decision-making process, with the use of an advocate if appropriate.
n Listen to the views of parents and help them to support their children through the process.
n Look at the options available for further/higher education (University/TAFE), training and/or employment, this may include options such as supported internships, apprenticeships and traineeships.
n Ensure the curriculum meets the child’s physical/health/ educational and, ultimately, work aspirations.
n Determine whether work experience is appropriate and help facilitate a placement.
n Ensure the pupil has appropriate life skills, including how to access social and community activities and opportunities for developing friendships, and a network of support.
n Be flexible enough to accommodate exam arrangements and online learning opportunities.
n Look into options for supported or independent living, or who they may wish to live with in the future.
n Give advice around the transition process from specialist paediatric services to adult health care.
Section 8
Funding
Schools must meet their legal obligations under the Equal Opportunity Act 2010 (Vic), the Disability Discrimination Act 1992 (Cth), and the Disability Standards for Education 2005 (Cth) to make reasonable adjustments to accomodate students with disability.
The Program for Students with Disabilities (PSD) gives government schools extra funding to help them support students with disability and high needs. The 2024 PSD operational guidelines contain more information about the program.
Schools use the funding in different ways, depending on the needs of each child.
This can include:
• specialist staff, such as occupational therapists, physiotherapists and speech pathologists
• specialist equipment like assistive technology
• training for teachers so they know more about your child’s disability or additional needs
• specialist teachers
• education support staff such as teacher aides.
Program for Students with Disabilities (PSD)
Where to get help
The organisations listed below may be able to offer further information and support.
Muscular Dystrophy Association (MDA)
MDA Is Here to Help
MDA is ready to help teachers and school staff by providing resources and support. Be sure to visit the MDA disease list to learn more about your student’s specific diagnosis. Find out who gets these diseases, what causes them, what the symptoms and life expectancy are for individuals affected by them, and how MDA research is leading the way. www.mda.org.au
Tel 61 3 9320 9555
Email info@mda.org.au
Muscular Dystrophy Australia (MDA)
About MDA
Muscular Dystrophy Australia was founded in 1984 and is the national peak body for those living with neuromuscular disease (NMD) across Australia.
Our Mission is to provide practical support and a brighter future to both the muscular dystrophy and other related neuromuscular disease communities.
We are often the first point of call when someone receives their diagnosis. We provide a safe place for families and those living with NMD to turn to for advice, practical support, and a friendly ear.
MDA represents the needs of more than 40,000 people living with one of 40 different types of NMD, which affect muscle strength. The support and services we provide use evidence-based and consumer-informed approaches to optimise the lived experience of NMD.
Our team’s key strength is our expertise in all forms of neuromuscular disease. Over the years we have built up a rich database of referral information and wellestablished support groups.
The MDA funded research aims to stem disease progression and support innovative research projects that lead us to a cure. Together, we are a powerful force for people living with NMD.
With lived experience at the core of everything we do, MDA is working to bring a brighter today and an empowered tomorrow for people living with NMD.
The Neuromuscular Clinic at The Royal Children’s Hospital (RCH) provides comprehensive care to over 600 children with NMD.
The multidisciplinary clinic is the largest in the hospital and operates as a one-stop shop, allowing access to up to 18 clinicians from different health specialisations during a visit. The clinic prides itself on being family focused and keeps the lived experience of patients at the centre of everything they do.
The clinic also runs a research program and participates in numerous clinical trials, which offers patients access to new treatments that are otherwise not accessible. MDA is proud to support their vital work.
