Hello All,


So I have the finalization of my son's IEP/PPCD placement next week. Doug is 5 but can't start kinder til next year. His Neuromuscular is recommmending OT and PT, but the school district PT and OT is saying that he is well equipped to get around the classroom. I have a huge fear that they will come back and say he needs accomodations at all. He has been formally diagnosed with DMD. The neuromuscular case manager asked me to list to her what accommodations I want the school to provide and she will avocate for them during the meeting.


I know I want to have a aide for playground, recess, field trips...but I am just so new at this I am not sure what else I am looking for. I figured if the doctor is reccommending OT and PT he would just get it. Please any help on how to fight them? What to say? If I don't agree do I just not sign?



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Hi Cherisse,

I suggest viewing a recent Parent Project Muscular Dystrophy webinar on Special Education that outlines many aspects of this process and explains how the law is intended to help students.  Please realize, a student who is diagnosed with DMD is not guaranteed special education.  The law is very clear that it depends on their individual needs and that they will benefit from special education services in order to be successful in the general curriculum.  Go to http://community.parentprojectmd.org/profiles/blogs/webinar-replay-... to replay the webinar.  I believe the webinar will answer many of your questions. 

I also recommend you contact a member of your state's Parent Training Information Center who should be able to help you both in understanding IDEA (special education law) and may be able to pair you with an advocate and help you with advocacy training. 

I want to briefly address the issues from your message.

First, there is much difference between medical and educational need and while your son's doctor recommends/prescribes OT and PT, unless the school sees an academic need for these PT and OT they may not provide these services.  Depending on your school's interpretation of the Individual with Disabilities Education Act (IDEA), an argument might be made that providing direct PT services falls under the concept of providing education in the "Least Restrictive Environment".  It can be shown that PT extends ability to walk independently for individuals who have DMD, therefore a person could argue that a student being able to walk independently is less restrictive than relying on others whether it be to move them using a wheelchair or opening doors and providing access.  Additionally, the use of direct PT is used to prevent/slow the development of joint contractures which can be uncomfortable to painful.  Easing the discomfort would allow a student to focus on academics.  I don't know if these points will sway your IEP team and physical therapist.  The school may decide to provide consultative services that focus on how your son gets around the school as well as the equipment he may need based on ability. 

Providing access, such as a student being able to go onto the playground or on field trips, falls under a separate civil rights law, Section 504 of the Rehabilitation Act of 1973 (Section 504).  The school must provide the same access and opportunities for your son as his unaffected peers.  They may provide a dedicated adult to monitor him while on the playground or field trips to help when he falls or they may assign a shared paraprofessional who may also be responsible for other students.  If your son isn't falling regularly and is still able to get around well, this might be an acceptable option.  Schools may still add these accommodations to an IEP rather than write a separate 504 Plan.  One word of caution when thinking about having an adult monitor your son is that having an adult always by his side can alienate him from his peers making it difficult to make friends.  Students like to play without adults, so while this may be necessary, please consider what may be unintended consequences.  There is balance between choosing what is appropriate and what we want and risks and benefits for all.

The last advice I can provide is avoiding an adversarial role when working with the IEP team.  It is better to cultivate a mutually beneficial working relationship rather than one that is strained and constant work.  There will be times you need to stand your ground, yet be professional and try to avoid negative emotional tones.  Again, the Parent Training and Information Centers should be able to help you with advocacy development. 

Wishing you the best.

Brian Denger

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