Advice To Campus From College Personnel Who Understand Students Who Have IH

A Guide for Students, Supporters, and College Personnel

Living with the symptoms of idiopathic hypersomnia (IH) can be overbearing – physically, cognitively, and emotionally.  It can be even more so for those who have IH and are working to meet the academic expectations of college, often while learning to live away from home and/or are newly diagnosed.

Not all students who have IH need accommodations in college, but some do.  This guide is a resource for them as well as those not needing accommodations, their supporters, and the college personnel who work with them. This guide consists of three (3) Advice Guidebooks and three (3) Navigation Guidebooks. Both sets of guidebooks were created to ensure the best possible academic and campus experiences for students who have IH whether in need of accommodations or not.  The words “supporter” and “family” are used interchangeably throughout this Guide.

The Advice Guidebooks function as reference guides, thus the resources identified in the index of each guidebook are hyperlinked directly to their content in the guidebook. Each Advice Guidebook identifies and provides links to relevant resources and publications of the Hypersomnia Foundation. Because readers likely will link only to  those sections of relevance to them, there will be repeated information to ensure that the reader who needs it, sees it. We have tried to keep that to a minimum. The advice in each Advice Guidebook was summarized from extensive personal interviews, online focus groups or both, and derived from standard qualitative research methods.

Advice Guidebook B:
Advice To Campus From College Personnel Who Understand Students Who Have IH

This guidebook is intended for higher education personnel in all departments, at both in-person and online colleges. Because this is a reference guide, the resources identified in the index for each section are hyperlinked directly to that content in the Guide.  And, because readers likely will link only to those sections of relevance to them, there will be repeated information to ensure that the reader who needs it, sees it. We have tried to keep that to a minimum.  Of note, the words “supporter” and “family” are used interchangeably throughout this guidebook.

The colleagues who contributed the advice in this guide are associated with academic affairs (faculty), student affairs (college access services, counseling services, outreach and education, residential life), and administration (accessibility services, admissions). They understand the symptoms of IH and how those symptoms affect a student’s ability to function academically and on campus. These colleagues either have a diagnosis of IH themselves or are accessibility specialists who students have identified as having worked successfully with them. The observations of colleagues diagnosed with IH are found in the entries The VOICES of Experience and IH; the observations of accessibility specialists who have worked effectively with students who have IH are found in the entries The VOICES of Experience.

The following Hypersomnia Foundation publications may be useful as you read through this guide: IH Summary of Diagnostic Criteria and Symptoms, Glossary of Terms, Hypersomnia Foundation Brochure, Sleepy Student Brochure, Self-Advocacy Tips, and HF video Sleeping My Life Away

Index

Jump to:

  1. Advice to the College Access Office
  2. Advice to Accessibility Services
  3. Advice to the Admissions Office
  4. Advice to Counseling Services
  5. Advice to the Outreach and Education Office
  6. Advice to Faculty
  7. Advice to Residential Life

Approved by Hypersomnia Foundation Board of Directors

Legal Review: Independent Legal Counsel
Medical Review: Lynn Marie Trotti, MD, MSc
Research Design and Methods Review: Dwight E. Giles, Jr., PhD,
Editorial Review: Shelley Griewahn
Content reviewed or vetted in parts by:  Beth Boyce, Leah Bridger, MA,
Amy Desmarais, MSA, Paul DiFrancesco, EdD, Brett Gaspers, Shelley Griewahn,
Jessamine Griewahn-Okita, EdM, Diana Wagner Kimmel,BBA, Olivia Robbins, MSBA, Anonymous, PhD
Jessamine Griewahn-Okita, EdM, Education Consultant, and
Olivia Robins, MSBA, Technical Consultant, also contributed to the Guidebook’s content.

Last Updated:  05.01.26

Top