Hypersomnia Foundation

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Education Essentials for Students with Idiopathic Hypersomnia

Backstory: Participants at the 2015 Atlanta HF Conference included K-12 and college students and their families. Conversations with, feedback from, and comments by students and their loved ones brought to light unmet educational needs across grade levels for information, direction, and support.  Shortly thereafter, the Foundation launched a two-prong approach to meet those three (3) needs.

K-12 Education Program:  The seeds of the K-12 Education Program are embedded in the HF 2015 Atlanta Conference and workshops focused on school issues (504 Plans, IEPs, Assistive Technology), followed by a four-part series by Kate Pece MEd featured in SomnusNooze (Crash Course: Public School Accommodations for Children with Hypersomnia). Throughout the 2015/16 school year, volunteers collaborated and lent their professional expertise to develop several guides for parents, students, and physicians, for posting to the Hypersomnia Foundation website. Beyond these guides, we hope to provide links to additional resources by early 2018.

K-12 Directory of Guides

  1. Considerations When Requesting K-12 Accommodations
  2. Assistive Technology in K-12: A Walk on the Tech Side
  3. K-12 Student Success: Physicians Can Make an Important Difference
  4. Guide to Requesting Accommodations for K-12 Students with IH
  5. K-12 Academic Resources Guide
  6. Tips for Parents of K-12 Students with Idiopathic Hypersomnia
  7. Teens Talk
  8. Resources for Families of K-12 Students with Idiopathic Hypersomnia

Higher Education Program:  In late summer, 2015, the Higher Ed Conversations Project was initiated in direct response to the identified need for useful academic adjustments for college students with idiopathic hypersomnia (IH). Exploratory interviews (28) were conducted over the course of a year with administrators, faculty, disability services providers, college students (current students, recent graduates, students who stopped out* or dropped out) and their families. Those interviews informed several of the Education Essentials guides, and throughout the 2016/17 school year, volunteers collaborated and lent their professional expertise to develop additional guides for parents, students, and physicians, for posting to the Hypersomnia Foundation Website. We hope to provide additional postings by early 2018.

Higher Ed Directory of Guides

  1. Student Guide to Thinking About Academic Adjustments – in progress
  2. College Student Access: Physicians Can Make an Important Difference – in progress
  3. Guide to Requesting Academic Adjustments for College Students with IH – in progress
  4. Guide to Academic Resources for College Students with IH – in progress
  5. Advice from College Administrators, Faculty, and Disability Service Providers – in progress
  6. Tips for College Students with Idiopathic Hypersomnia – in progress
  7. In Their Own Voices – in progress
  8. Tips for Supporters of College Students with Idiopathic Hypersomnia – in progress
  9. Resources for College Students with IH and Their Supporters – in progress

* Stopping out is taking semesters off with the intent of returning (e.g., for personal or medical leaves of absence).

Education Essentials for Students with Idiopathic Hypersomnia was developed under the oversight of Mary A. King, EdD, Board Member, and introduced at the Boston 2017 Conference.   We are grateful to our Summer Interns for their extensive vetting of and contributions to content and development of the guides: Jessamine Griewahn-Okita, BA (2016) and Olivia Robbins, BA (2017).

Acknowledgements

The Hypersomnia Foundation’s Education Essentials for Students with IH program is the result of the efforts of many volunteers who gave their expertise and time. The Foundation is most appreciative of the commitment and service from the following collaborators:

The Hypersomnia Foundation is indebted to those who contributed to the following:

Disclaimer

The documents listed in the K-12 Directory of Guides and in the Higher Ed Directory of Guides are provided for informational and educational purposes only. They are not intended as a substitute for the advice or guidance of professionals or the policies of school districts, campuses, or offices that provide services to those with disabilities in K-12 or higher education, or the advice of medical practitioners or attorneys.