HOW TO OBTAIN CONFERENCE FUNDING THROUGH THE IEP PROCESS

We recently learned from another rare organization called Prisms (Parents and Researchers Interested in Smith-Magenis Syndrome) that families can obtain conference funding through their child’s IEP Process. You can read what they wrote here.

To summarize, there is a federal law that states “that parent training is a related service” and that the parent training is defined as support and education provided to a family to better understand their child’s unique needs in regards to their educational, developmental and transitional needs. It is typical for most school districts to offer this training in the form of workshops and classes with the goal of helping parents better understand their child’s disability. This is relevant when the schools have a good understanding of the disability. However, for our children with SETBP1-HD and SETBP1-related disorders, the school district is not likely to have experience with these SETBP1 neurodevelopmental disorders. They are also not likely to be able to consult anyone locally as SETBP1-HD or SETBP1-related disorders are assumed to have a 1 in 25,000 to 1 in 50,000 incident rate. This uniquely positions the SETBP1 Family & Research Conference as the only place to obtain information and understanding on their child’s unique disability.

For the detailed steps for how to request financial support from your school district, check out the Prisms’ page. You would simply refer to our conference name and conference website, SETBP1 Family & Research Conference and the page with more information is https://bit.ly/setbp1-conference.