School Resources - Parent Project Muscular Dystrophy

For Families

School Resources

PPMD wants to make sure that families within the Duchenne and Becker community have the necessary tools to ensure a successful school year. Navigating care for your child is hard enough, let alone trying to understand IEPs (individualized education programs) vs. 504 plans, classroom accommodations, activity limitations, and what information to provide to school staff about your child’s medical care. So in order to help, consider the following your Duchenne and Becker School Survival Kit!

PPMD For You

Still have questions about your child in school? You can schedule a School & Education meeting with the PPMD For You team to talk through any additional concerns or barriers you might be facing. We are here to help navigate this Duchenne journey together and connect you with any additional resources you may need!

New Educators Course

This course for educators and school staff provides a brief overview of Duchenne and Becker muscular dystrophy and how it can impact a child in the classroom. This resource offers considerations as it relates to physical, emotional, cognitive and social needs of the student in an effort to give academic teams the tools they need to ensure children with Duchenne & Becker have a safe and successful school year. Learn more about PPMD’s courses for educators here.

Setting up a Successful School Year

The following is a guide for parents to help ensure their child with Duchenne/Becker has the tools they need to be successful at school. It’s important to remember that schools want to help your children succeed but may need some extra education and communication to do so effectively.

Talk with school staff about your child and Duchenne/Becker

Before the school year starts, it is important to educate your child’s teachers and school administrators on Duchenne/Becker and how it can affect your child’s experience at school. To help educators understand how to provide quality education for students with Duchenne and Becker, PPMD has created several materials that can facilitate the conversation.

Duchenne and Me Letter

Provide a one-page letter with an overview of Duchenne and Becker muscular dystrophy for the school to keep on file. You can incorporate a short summary about your child along with a photo that can include topics such as likes/dislikes, personality traits, challenges, etc. This should be given to any staff that will be interacting with your child throughout the day (teachers, front desk staff, lunch attendants, school nurse, counselor, recess staff, resource officer, etc) so they can get to know your child a little better before the school year starts.

Education Matters Guide

For more in-depth information on students with Duchenne and Becker in the school setting, parents, and school staff should review PPMD’s Education Matters Guide. This comprehensive guide is divided into three age-based volumes. It covers the basics of Duchenne, specific classroom accommodations, therapy recommendations, and more.

TIP: To help teachers with key points, families may want to highlight or flag specific sections of the guide as it relates to their child.

Adaptive Physical Education and Learning & Behavior Guides

In addition to the age-based guides, there are resources available in the areas of Adaptive Physical Education and Learning & Behavior in Duchenne:

We also recommend that teachers familiarize themselves with common learning and behavior issues children with Duchenne and Becker may exhibit.

Duchenne Educators Masterclass

PPMD has also created the Duchenne Educators Masterclass to educate and empower teachers, school-based therapists, counselors, aides, and administrators to better understand and educate their students with Duchenne. This free online course for school staff is video based and self-paced. It is presented in three age-specific courses covering Duchenne basics, behavioral and learning considerations, physical therapy and occupational therapy recommendations, and more. The masterclass helps to give your academic team the tools they need to better serve your child both in and out of the classroom

Visit PPMD’s Duchenne Educators Masterclass

Talk with the School Nurse

It is important to meet with the school nurse before the start of the school year. Connecting them with resources about Duchenne will help them understand better and take appropriate action should your child become ill or have a medical emergency at school.

There are a couple important things to make sure you have in place.

Medical Information

Provide the nurse with your child’s neuromuscular care team and/or pediatrician’s contact information, emergency care card, information on medications or trials your child is involved in, and any potential side effects the nurse should be aware of.

Print and fill out PPMD’s Emergency School Action Plan to include important medical information on one page.
If your child will need medication given at school, be sure to provide a prescription from your child’s doctor allowing the nurse to administer.

Release of Information

Sign a ROI (Release of Information) form at the beginning of every year if you would like your child’s care team to be able to communicate with the school. This is optional and not required.

Having the school communicate with your care team can be helpful for the school to understand where you child is physically, what limitations they may have, or general information regarding how Duchenne affects your child specifically.

Talk with Peers

Talking to your child’s peers about Duchenne and Becker with age-appropriate language is going to be a valuable aspect in setting up the school year for success. It is very important to include your child in the decision of when and how to share this information if possible.

Sharing information can be done by the teacher, the parent, the child themselves, or a combination. Some kids may want to be included in the discussion, while others may not feel comfortable. Here are a few resources and activities that can help guide these discussions:

Videos

Classroom Activities

Packet of Classroom Activities for Understanding Duchenne

Books

Set up and Manage an IEP/504 Plan

Many children with Duchenne or Becker will likely need some accommodations or an individual educational plan (IEP) at some point in their time in school to ensure their success. Every child is different and has different needs, so it’s important to remember that one size does not fit all when it comes to educational accommodations and considerations.

For many, getting a 504 or IEP in place can be overwhelming, especially if you have never navigated the process before. Visit the section on Navigating IEP/504 Plans on this page for information on understanding and navigating educational plans to ensure you feel prepared and confident on how to communicate with the school regarding your child’s needs.

You can also schedule a time to meet with the PPMD For You team to ask specific questions about school here.

Additional Tips from Parents

Every parent wants their child to be successful in school. While each child and family’s experience and situation differs, having tips from others who have gone through it before can help make the journey a little less overwhelming. Below are some tips from parents who found additional ways to help make sure their child with Duchenne has the best school year possible:

Attend back to school night, Kindergarten Round-Up, or consider taking your child to school to navigate the layout before the first day
Discuss events for the year ahead of time (i.e. field day, field trips, etc)
Be sure to include an emergency evacuation plan or safe room in your child’s IEP/504 plan
Talk to the school about accessible transportation, including for field trips
Introduce your child, or provide “Duchenne and Me Letter” to as many staff as possible so both your child and the teachers know each other and how to help in a situation if needed

Navigating IEP/504 Plans

Many children with Duchenne or Becker will likely need some accommodations (504) or an individual educational plan (IEP) at some point in their time in school. Every child is different and has different needs, so it’s important to remember that one size does not fit all and one plan is not necessarily better than another. Each plan is based on your child’s specific needs and can change throughout the years depending on the growing needs. This section provides an overview of your child’s rights, the difference between IEP and 504 plans, and how to navigate and manage plans once they are in place.

Understanding Educational Services

In the United States, a federal law called “Child Find” requires school districts to locate, identify, and support all children with disabilities. Depending on the needs of your child, services can be provided through a 504 or IEP. The evaluation and qualification processes are different and mainly focus on whether your child has the need for “specialized instruction”. With a 504, support comes as accommodations. IEPs are for students who require modifications of curriculum.

It’s important to note that the process and services in private schools may vary from those provided in public schools. The following information will apply to children in public schools. To find out more about private school special education, click here.

About 504 plans

Background

A 504 plan refers to Section 504 of the Rehabilitation Act of 1973. It is a civil rights law intended to end discrimination against people with disabilities. In the public school setting, this law ensures students with disabilities have access to the learning environment without barriers.

Requirements

The law states a child must have “a mental or physical impairment that substantially limits one or more of a person’s major life activities.”

“Major life activities” include things such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.

In other words, a child must have a documented disability that interferes with their ability to learn in the general education classroom.

What is included in a 504 plan

A 504 plan will include specific accommodations (not modifications) that support the child in school. Many times this can include things that prevent fatigue for children with Duchenne and Becker. Examples of 504 accommodations include:

Extra time allowed to get to/from classes
Speech to text capabilities, recording, or other assistive technology
Quiet room or more time for taking tests
Supportive seating
Alternatives to recess
Extra tablet/laptop to be kept at school and home (preventing transport back and forth)
Shortened homework assignments when knowledge is demonstrated

Key things to remember

Students with a 504 plan still learn the same curriculum as their peers. The material doesn’t change, just the way in which they go about learning it.

504 plans are created for accommodations in the school setting.

A 504 plan is not part of special education. The 504 coordinator is the best point of contact for any questions or concerns

About Individual Educational Plans (IEP)

Background

A federal special education law was created for students with disabilities called The Individual with Disabilities Education Act (IDEA). An Individual Education Plan (IEP) is a legal document created under this law that guarantees “free & appropriate education in the least restrictive environment”. In other words, IEPs ensure children with special needs have necessary changes to the curriculum so they can be successful at school.

Requirements

A Student must have at least 1 of 13 specific qualifying disabilities listed in the IDEA law

Students with Duchenne/Becker typically qualify as ‘Other Health Impaired (OHI)’, ‘Ortho Disability’, Cognitive Disability (or ID), or Autism
The disability must affect the student’s educational performance and have the need for “specialized instruction”

What is included in an IEP

The IEP must follow a specific format and include the following 3 things:

1. Present level of function and ability

These are statements of what your child currently struggles with in school. It’s okay to list out as many things that you believe could be helped with the proper services.
Be sure to include all areas such as social skills and behavior. Keep in mind, behavior doesn’t always mean “bad”.

2. Annual educational goals

Goals will be created based off the ‘present level ability’ so the school can measure any improvement throughout the year.
If there isn’t a goal, the school district can’t justify the need for services.
There can be goals based on self-advocacy, motivation, and participation as well as academic.

3. Specific services or supports that will be provided

The services listed in an IEP will be directly tied to the goals that were created. These services are to help the child achieve the agreed upon goals.
When developing an IEP with the team, think about the services you want and work backwards to make sure there is a goal that will be achieved with that service and an associated present level ability listed.

Key things to remember:

An IEP is a set of services as part of special education, not a place. It does not necessarily mean your child will be in a separate classroom. These services can and should be delivered in the least restrictive environment.

There must be a need listed in the present level ,with an associated goal in order to receive a service. These needs should be noted during the evaluation.

An IEP is a working document and can be reviewed or changed at any time. The school is required to review the plan with you once a year.

Not all children with Duchenne/Becker need an IEP. However, if you notice changes in your child over time, you can always request a new evaluation.

Evaluation Process for IEP/504

If you feel your child needs accommodations or changes in the classroom, the first step is asking for an evaluation from the school. This request should be in writing. Sometimes the school will be the one to suggest an evaluation for your child. Be sure to include anything that supports your child’s needs in your request (i.e. letter from neuromuscular provider or PCP, past report cards, parent notes, etc.).

For both a 504 and IEP, your child will be evaluated by a team from the school district that can include teachers, administrators, a psychologist, and specialists (physical therapist, speech therapist,etc).

Some of the recommended testing includes:

Functional Behavioral Assessment
Interviews
Cognitive testing
Classroom observation
Psychological evaluation

Once this evaluation is complete, the school will schedule an “eligibility meeting” with you to go over the results of the evaluation.

Parents have the right to see the evaluation results before the meeting. If you did not receive a copy, reach out to the school and ask for one.

Be sure to come prepared with questions, concerns, or ideas. As a parent, you are an equal part of the team and have the right to be included in the decision for your child.

Parents have the right to invite additional people for support during the meeting (family, friend, professional, family advocates, etc).

If your child is found eligible for special education services, then an IEP will be written. If the school finds your child is not eligible for special education services, you may ask for a 504 evaluation instead or dispute the results of the evaluation. Click here to learn what to do if your child is declined services.

It’s important to remember that your child’s school wants your child to be safe and successful, but they might need a little help in finding the best way to achieve that. PPMD is here to support you in this journey and act as an advocate for your child. If you still have questions about your child and school, reach out to careteam@parentprojectmd.org or schedule a meeting with the PPMD For You team here.

Educational Rights & Resources

Knowing the laws behind education rights will help you become a powerful advocate for yourself or your loved one in the educational journey. Below are some tools that reference these laws to help you advocate for your or your child’s rights.

Educational Rights

Additional Resources

Parent Training & Information Centers (PTI)

PTI centers help provide parents with training, information, and support in order to best advocate for their child in school. Every state has a local PTI and you can find your local center here.

Resources for Educators

As an educator, it is important to understand how to best support your student with Duchenne or Becker muscular dystrophy. PPMD has created several resources that explain Duchenne & Becker, how it can affect the child in the classroom, and ways you can best support your student.

Education Matters Guides

The 3-part Education Matters guide is for parents and teachers to help gain a better understanding of Duchenne/Becker. It covers the basics of Duchenne and Becker muscular dystrophy, specific classroom accommodations, therapy recommendations, and more. It is divided into three age based groups, as children’s needs change as they get older

Click here to order a printed guide.

In addition to the 3-part age-based guides, there are also comprehensive resources available in the areas of Adaptive Physical Education and Learning & Behavior in Duchenne:

Education Matters: Adaptive PE (written specifically for the Physical Education teacher)
Education Matters: Learning and Behavior in Duchenne

We also recommend that teachers familiarize themselves with common learning and behavior issues that children with Duchenne and Becker may exhibit.

Duchenne Educators Masterclass Online Modules

PPMD has also created the Duchenne Educators Masterclass to educate and empower teachers, school-based therapists, counselors, aides, and administrators to better understand and educate their students with Duchenne & Becker. This online course is video based and self-paced. In addition to a brief overview of Duchenne and Becker and how it can impact a child in the classroom, this resource includes three age-specific comprehensive courses covering Duchenne basics, behavioral and learning considerations, physical and occupational therapy recommendations, and more. This free masterclass helps to give the academic team the tools needed to better serve the student both in and out of the classroom.

New Course:
Supporting Students with Duchenne and Becker in the Classroom – Key Insights and Strategies For Educators

General Disability Resources for Educators

Working with children with Disabilities

Video Library

PPMD has several videos and webinars available to dive deeper into additional topics.

Difference Between IEP and 504

Navigating the Challenges of School

Navigating the College Campus

Planning for a Successful Return to School During a Pandemic

Part 1

Part 2

Thriving in a Virtual Classroom

Part 1

Part 2

End of the School Year and Looking Ahead

Homeschooling Hacks

PPMD's 2022 Annual Conference: Learning and Behavior Breakouts

Early Childhood

Late Childhood & Tweens

Teens/Adult

Downloads

Duchenne and Me Letter

Education Matters Guide

TIP: To help teachers with key points, families may want to highlight or flag specific sections of the guide as it relates to their child.

Adaptive Physical Education and Learning & Behavior Guides

In addition to the age-based guides, there are resources available in the areas of Adaptive Physical Education and Learning & Behavior in Duchenne:

Emergency School Action Plan

Print and fill out PPMD’s Emergency School Action Plan to include important medical information on one page.

Classroom Activities for Understanding Duchenne

PPMD’s Classroom Activities for Understanding Duchenne packet includes age-appropriate classroom exercises that can be done either by you (the parent) or by your child’s teacher to educate students about Duchenne and some of the challenges your child faces on a daily basis. They are easy and can be done in one class period or as part of a larger group gathering, such as an assembly. Involve your child as much as he/she is comfortable and in a way that reflects how you discuss Duchenne at home.

For Families

School Resources