We are having lots of issues keeping an IEP we have from NY in MD for our son as he does not have cognitive issues but he needs PT and OT. They want to take away IEP. Wanted to see if anyone has experience with an IEP in Maryland or if anyone has a 504 with PT and OT in MD. Son is 5 years old and in kindergarten. We moved to NY in August prior to kindergarten and has been a fight since then. thanks.
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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 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.
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.
Please email me directly if you have other questions.
Annie Kennedy
Senior Vice President - Legislation & Public Policy
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
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