Replies to This Discussion

Permalink Reply by Annie Kennedy on March 26, 2015 at 12:26pm

What county are you living in? I spent a decade helping families navigate the school systems in Maryland, DC, and VA and some counties were much easier to work with than others...

In the state of Maryland, children with Duchenne (especially those as young as your son) typically qualify for IEPs under the category of OHI (other health impairment). Typically, students whose primary needs are PT and OT qualify under OI (orthopedic Impairment) which young boys with DMD will not often meet the critieria for. But OHI can usually be justified. Below is information that I have shared with schools as a resource. All of these items will certainly not all apply to your son -- and much of it will not apply in kindergarten - but it provides the school with a sense of why an IEP will better ensure that your child has 'full, unrestricted access to his academic environment' than is often afforded by a 504 Plan. Feel free to use as much or as little of the information below when working with your school.

School Accommodation Recommendations

 

Diagnosis: Duchenne Muscular Dystrophy (DMD)

 

Duchenne muscular dystrophy is a progressive genetic neuromuscular disease that affects all major muscle groups in the body, beginning with those in the legs and arms. Due to the progressive nature of this disease, and the fact that physical fatigue in children with DMD usually impacts them within the school environment, it is imperative that educational professionals who work with boys with Duchenne be aware of their diagnosis, needs and abilities. Students with Duchenne typically thrive academically once physically barriers are accommodated for.

 

It is important that school health officials understand that Duchenne is not contagious, and does not make this student more of a health risk in school. He does, however, run an increased risk of falls and injury once he fatigues.

 

Within the school setting, the following aids, interventions, and supports are recommended for students with Duchenne to be able to fully access their school environment and excel academically and socially.

 

Physical Therapy

• Stretching
  • Range of Motion exercises
  • Muscle cramp massage
  • Safety training (on stairs & playground)
  • Hallway safety
  • Accommodating activities of daily living (ADL’s) to changing physical needs (toileting, lunch time/cafeteria safety, etc)
    • Adapted/modified Physical Education (see next section)

 

Physical Education (Adapted)

Being physically active is absolutely critical in Duchenne. It is also imperative that students remain included in the general education classroom for PE. The modification of most activities can be done through consultation with the Physical Therapist, with the goal of this student’s PE curriculum being recreation, rather than competition or increased strength & endurance. It is critical that boys with Duchenne be restricted from eccentric exercises, as these may cause muscle damage in boys with Duchenne. Under no circumstances should he lift weights, do push ups, pull ups, or abdominal crunches – these activities will be detrimental to his physical strength.

 

Occupational Therapy

As boys with Duchenne become physically weaker, an Assistive Technology Evaluation will be indicated. In addition, an occupational therapy consultation for body positioning, seating, and gross and fine motor function is recommended. Many students with Duchenne use assistive devices such as manual or power wheelchairs.  They may also require modified written assignments or computer technology that maximizes fine motor strength or utilizes voice command/dictation typing systems.

 

School Accommodations

• An additional set of text books should be provided to the student so that he does not need to transport heavy text books to and from school (or from one classroom to another).
  • If the school has multiple levels, the student should have access to an elevator.
  • Whenever possible, this student’s physical needs should be taken into consideration when designing his class schedule (classrooms should be close together to minimize distance walked throughout the day, etc).
  • Preferential seating in the classroom will allow a student with Duchenne to safely navigate the classroom and access his class environment.
  • An Emergency Evacuation Plan should take the student’s physical needs into consideration. School personnel should be assigned to accompany him during an emergency. If the school has multiple levels, a ‘Safe Room’ should be established with the local fire department.
  • Field trips and school events should take into consideration the needs of this student. For example, how far will students have to walk from the bus to the front door? Is the field trip destination accessible for wheelchairs? Is there a wheelchair lift on the bus? Have chaperones been informed of this student’s needs? Etc.

Please email me directly if you have other questions.

Annie Kennedy
Senior Vice President - Legislation & Public Policy

annie@parentprojectmd.org

• ▶ Reply

Permalink Reply by Elizabeth Carr on September 25, 2015 at 11:45am

Hi Annie! Thank you for that great reply.

You came to speak to my son Bandith's school when he started Pre-K in DC. He is now 14 and starting High School in Fairfax County, VA.  We moved here a couple years ago.  We have been informed that Fairfax Co physical therapists are only to give advice but never touch the child, so there is no stretching, etc. Was that your understanding of FCPS policy when you were here? [Bandith has never had a physical therapist so at thispoint just as happy that nobody touch him but I am curious about this blanket policy.] 

Thanks, Libby

• ▶ Reply

▶ Reply to Discussion