Navigating Rare and Complex Diagnoses and Disorders

Involvement in Special Education for any significant length of time will ultimately result in you encountering a rare and complex disorder.  While every disability has its unique challenges, often times we can rely on our knowledge base or experience to help us in planning for the student. However, when addressing  rare and complex diagnoses we may not have these fall backs to aide us. This article addresses some additional steps that Parents can undertake to ensure the student presenting with a rare and complex disorder receives Free Appropriate Public Education (“FAPE”).

 

• Identifying Eligibility:

 

The parent should be clear with the School District what concerns they have about the student being successful in school and what supports they are seeking.

 

• Evaluating the Student:

 

The parent can help the evaluation process by providing records, including medical records, returning parent input and evaluative forms promptly and completely, providing releases for School District personnel to speak to outside therapists or medical professionals and providing any useful reading or background material on the disorder.  The parent should also ensure that they have requested all needed testing such as psychological, neuropsychological, achievement, behavior, speech, vision, occupational, and physical evaluations.

 

• Programming for the Student:

 

The parent should be prepared to supply as much background and knowledge they have on the disorder. In this circumstance, the Parent will likely have the most experience and knowledge addressing the disorder. The Parent should, if all possible,  provide specific lists of accommodations and programming that have historically worked well for the Student, ask for specific goal areas unique to that disorder be addressed, and inform the School District of upcoming medical procedures, medication changes or new developments.

 

• Placements:

 

The parent should, if possible,  research and visit  all placements either proposed by the District or that they reasonably believe to be appropriate. Parents should ask the following the questions, as appropriate:

 

-How many children per class? What is the Student/teacher ratio?

 

-What is the age range of children in classroom?

 

-Are teachers certified? If so, in what?

 

-Do the teachers have any training or experience in the Disorder?

 

-Is there anyone in the School District who has experience with the Disorder?

 

-What training, regarding the Disorder, will be provided to those working with the Student?

 

-Who provides the following:

 

                                           OT:

                                           SL:

                                           Counseling:

                                           Social skills:

                                           Psychology services:

                                           Parent training:

 

-What training have the Related Service Providers received?

 

-Is a nurse always on site?

 

-What are the educational programs used for the following subjects and how are they provided?:

 

                                           Math:

                                           Reading:

                                           Written expression:

 

-How are students broken up during programs? How are they grouped in the classroom?

 

-How are Behavior Intervention Plans developed and administered?

 

If it is a Non-Public school:

 

-Is there any schools in the area that specialize in the disorder or type of disorder as

compared to other areas?

 

-What is the admissions criteria and process?

 

-How is it decided when to return the Student to a regular education setting?

 

Useful Websites:

 

• Office of Rare Diseases:

 

https://rarediseases.info.nih.gov/

 

• National Organization for Rare Disorders:

 

http://rarediseases.org/

 

• Understanding Rare Chromosome Disorders:

 

http://www.rarechromo.org/html/home.asp

 

• Office for Parent Information and Resources:

 

http://www.parentcenterhub.org/repository/raredisorders/