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
- Considerations When Requesting K-12 Accommodations
- Assistive Technology in K-12: A Walk on the Tech Side
- K-12 Student Success: Physicians Can Make an Important Difference
- Guide to Requesting Accommodations for K-12 Students with IH
- K-12 Academic Resources Guide
- Tips for Parents of K-12 Students with Idiopathic Hypersomnia
- Teens Talk
- 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
- Student Guide to Thinking About Academic Adjustments – in progress
- College Student Access: Physicians Can Make an Important Difference – in progress
- Guide to Requesting Academic Adjustments for College Students with IH – in progress
- Guide to Academic Resources for College Students with IH – in progress
- Advice from College Administrators, Faculty, and Disability Service Providers – in progress
- Tips for College Students with Idiopathic Hypersomnia – in progress
- In Their Own Voices – in progress
- Tips for Supporters of College Students with Idiopathic Hypersomnia – in progress
- 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).
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:
- Karen Ammons, Point Person, Tips for Parents of K-12 Students with Idiopathic Hypersomnia.
- Catherine Carson, Director of the Office of Accessibility Services, Columbia-Greene Community College (SUNY); Member, Higher Education Accommodations Review Team.
- Fiona Cousland, JD, Associate, in collaboration with Brenda Bliss, Partner, Riker Danzig, Scherer, Hyland, & Perretti; provides advisement and review of Education Essentials program materials.
- Rev. Tom & Karla Fast, provided outreach to community professionals.
- Julie Flygare, JD, Founder, 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 (2nded.) (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, BA, College Intern, Summer 2016, Education Essentials program.
- 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.
- 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, 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, 2016/17; Graduate Intern, Summer, 2017 Education Essentials program.
- 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 (HE-ART): 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 into 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 this 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.
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.