Going to school while coping with a hypersomnia

such as idiopathic hypersomnia, narcolepsy, or Kleine-Levin syndrome

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, educator and HF Board Member Mary A. King, EdD, launched a two-pronged approach to meet those needs for students in K-12 and Higher Education.

Education Essentials for Students With Idiopathic Hypersomnia consists of two series of guides developed under the oversight of Prof. King and introduced during a panel discussion at the Boston 2017 Conference via a PowerPoint Presentation. We are grateful to our Summer Interns and Student Ambassadors for their extensive vetting of, and contributions to, content and development of the guides: Jessamine Griewahn-Okita, EdM (2016, 2018) and Olivia Robbins, BA (2016-2018).

Jump to page sections

K-12 education program

The concept for the K-12 Education Program originated 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. The project continues to develop, and guides will be updated as needed.

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 response to the recognized 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.

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

Higher ed directory of guides

  1. Student Guide to Thinking About Academic Adjustments
  2. College Student Access: Physicians Can Make an Important Difference, which includes
  3. Guide to Requesting Academic Adjustments for College Students With IH
  4. Guide to Academic Resources for College Students With IH, which includes
  5. Advice From Campus—in progress, which includes
  6. Tips for College Students With Idiopathic Hypersomnia
  7. In Their Own Voices
  8. Tips for Supporters of College Students With Idiopathic Hypersomnia
  9. Resources for College Students With IH and Their Supporters

Apply for a scholarship!

The EveryLife Foundation for Rare Diseases offers scholarships for students who are U.S. residents age 17 and older with rare diseases. These are one-time awards of $5,000 to support educational pursuits. For more information, visit the #RAREis Scholarship Fund website.

Also, check out Project Sleep’s additional scholarship resources for students with idiopathic hypersomnia and narcolepsy.

Global genes RARE toolkits

In September, 2019, HF entered a collaboration with Global Genes to provide direct access to their Global Genes RARE Toolkits, which 1) are excellent resources on various topics affecting people with rare diseases and their supporters and 2) feature insights and best practices from industry experts and experienced advocates. The Toolkits cover a broad band of topics, including resources for students of all ages. CLICK HERE to learn more.

SomnusNooze articles about students with hypersomnias

For our collection of HF’s e-newsletter articles about students with hypersomnias, CLICK HERE.

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 those who consulted with us and wish to remain anonymous and the following collaborators:

  • Karen Ammons, Point Person, Tips for Parents of K-12 Students With Idiopathic Hypersomnia
  • Anonymous, MA, LMFT, worked for many years as a senior clinician at a university counseling center; provided consultation about campus counseling services and editorial assistance
  • Beth Boyce, Hypersomnia Foundation PAAC member; past administrative staff, Admissions Office, Missouri State University; provided support consultation about admissions process and policies
  • Catherine R. Canney, EdD, Associate Vice-President, Academic Affairs, Fitchburg State University; provided consultation about online education and elements of engagement in online learning
  • Catherine Carson, Director of the Office of Accessibility Services, Columbia-Greene Community College (SUNY); Member, Higher Education Accommodations Review Team
  • Becky Copper-Glenz, EdD, Dean of Graduate and Continuing Education, Fitchburg State University; provided consultation on admissions process for online education
  • Rev. Tom & Karla Fast, provided outreach to community professionals
  • Julie Flygare, JD, Founder, President, & CEO, Project Sleep; provided permission for adaptations of the content of her chapter “Succeeding in School and in the Workplace With Narcolepsy” in Goswami, Thorpy, & Pandi-Perumal, (Eds.), Narcolepsy: A Clinical Guide (2nd ed.) (2016) to the needs of the Education Essentials for Students with Idiopathic Hypersomnia
  • Dwight E. Giles, Jr., PhD, Professor Emeritus, University of Massachusetts Boston; provided peer consultation for qualitative designs, analyses, and interpretation throughout the Higher Ed Conversations Project and Tips for Parents of K-12 Students With Idiopathic Hypersomnia
  • Jessamine Griewahn-Okita, EdM, College Intern, Summer 2016, Education Essentials program; HF Student Ambassador, 2018
  • Diana Kimmel, Co-founder, Hypersomnia Alliance; provided access to a pool of potential participants for Higher Ed Conversations Project
  • Jeannette Landrie, MEd, Learning Specialist, Office of Disability Services, Smith College; Point Person and Member, Higher Education Accommodations Review Team
  • Shannon Lavey, MS, OTR, Student Service Coordinator, Assistive Technology Resource Center, Colorado State University; provided consultation re assistive technology at the college level
  • Rosa J. Liu, MEd, Manager, Veterans Services & Disability Resources for Students, University of Washington Bothell; provided consultation about disability resources for online students
  • Shonda Lyons-Golden, EdS, Assistive Technology Specialist; co-presented a session on assistive technology at the 2015 HF Atlanta Conference and Primary Source, Assistive Technology in K-12: A Walk on the Tech Side
  • Gail Glass-Malley, MEd, ABD, LMHC, Student Psychological Counselor in Access-Ability Services, Kingsborough Community College, Brooklyn (CUNY); Primary Source, Student Guide to Thinking About Academic Adjustments; and, Member, Higher Education Accommodations Review Team
  • Elise Newkirk, Chancellor’s Office, SUNY Albany; facilitated access to the Foundation for disability services providers in the SUNY and CUNY systems
  • Kate Pece, MEd, Independent Educational Consultant; session presenter, 2015 HF Atlanta Conference; authored four-part SomnusNooze series Crash Course: Public School Accommodations for Children With Hypersomnia; Primary Source and Special Education Point Person, K-12 Accommodations Review Team
  • Olivia Robbins, BA, Student Representative, Higher Education Accommodations Review Team; Graduate Volunteer and HF Consultant, 2016-2018; Graduate Intern, Summer, 2017 Education Essentials program; HF Student Ambassador, 2018
  • Jaime M. Ross, Director, Adult Student Services, Missouri State University Outreach; provided consultation on the admissions process and policies for online education
  • Keren Schlomy, JD, Cambridge, MA; provided research assistance on legal clinics and medical-legal partnerships as resources for families and students with IH
  • Julie Snow, MS, LSW, Director of Accessibility Resources and ADA Compliance, Minnesota State University Mankato; Member, Higher Education Accommodations Review Team
  • Robert Steinbaum, JD, Associate Dean for Advancement, Rutgers School of Law; provided access to legal services
  • Gigi Whiteside, EdS, Assistive Technology Specialist; co-presented a session on assistive technology at the 2015 HF Atlanta Conference and Primary Source, Assistive Technology in K-12: A Walk on the Tech Side

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

  • K-12 Accommodations Review Team: A team of special education, career-long classroom teachers, now specialists and consultants, under the leadership of Kate Pece, MEd, developed the accommodations content for the Guide to Requesting Accommodations for K-12 Students With Idiopathic Hypersomnia; a physician with idiopathic hypersomnia collaborated with the Medical Advisory Board on the description of idiopathic hypersomnia at the front-end of this guide; and an education law attorney collaborated with the team, reviewing the guide and developing the statement of challenges located at the back-end of the guide
  • Higher Ed Conversations Project: College students with IH and their families; faculty, administrators & disability services providers who provided in-depth interviews
  • Higher Education Accommodations Review Team (HEART): Four (4) expert disability services providers who, over the course of an academic year, vetted the Guide to Requesting Academic Adjustments for College Students With Idiopathic Hypersomnia, a document derived from the data gleaned from the Higher Ed Conversations Project; a student representative served on the team as a patient expert to provide insight to the disabilities experts about what it is like to be a college student with idiopathic hypersomnia
  • Tips for Parents of K-12 Students With IH and Teens Talk: Parents who collaborated on the Tips guide and their teens who contributed personal statements about being a student with IH
  • In Their Own Voices: Students who contributed personal statements about their college experiences to benefit other students

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.

Published Apr. 29, 2020 |
Revised Jan. 24, 2024