Resources
NASEM Workshop to Build a Better Healthcare System for People with IDD
This information is from a three-day workshop in 2021, called Exploring an Optimal Integrated Care System for People with Intellectual and Developmental Disabilities. It was hosted by The National Academies of Sciences, Engineering, and Medicine (NASEM).
NASEM Workshop: December 2021
You can find the agenda for the whole workshop here. Information about the people who spoke and led workshops are here.
Day 1 Panels: Current Challenges
Speakers include: James Perrin, Edward Schor, Lisa Iezzoni, Nanfi Lubogo, Kara Ayers, Matt Holder, Susan Havercamp, Amy Hewitt, Mai Pham, Michael Monson, Ari Ne’eman, Cheryl Powell, Maura Sullivan.
Day 2 Panels: Current and Promising Interventions
Speakers include: Mai Pham, Elizabeth Mahar, Clarissa Kripke, Patricia Aguayo, Lauren Easton, Vijay Ravindran, Susan Thompson Hingle, Lisa Howley, Sarah Ailey, Mai Pham, Brede Eschliman, Sarah Scholle, Stephanie Rasmussen.
Day 3 Panels: Looking Forward/Blue Skies
Speakers include: Kara Ayers, Alicia Bazzano, John Kitzhaber, Sharon Lewis, Charlene Wong, Julia Bascom, Alyna Chien, Colleen Kidney, Joan Alker, Joshua Sharfstein, Sandra Schneider, Helen Burstin, Karrie Shogren, Andrés Gallegos, Rick Gilfillan, Mai Pham, Maulik Trivedi.
NASEM Workshop Day 1: Current Challenges - December 8, 2021
Panel 1: Elements and Competencies of an Integrated System of Care
Panel 2: Challenges in Workforce Strength and Preparedness
Spotlight Presentation: Operation House Call
Panel 3: Challenges in Financing and Payment
Welcome: James Perrin, professor of pediatrics at Harvard Medical School and workshop co-chair
Remarks: Kimberly Knackstedt, Director of Disability Policy for the Domestic Council at the White House (starts at 2:02)
Panel 1: Elements and Competencies of an Integrated System of Care
Edward Schor, Stanford University
Panel 1: Elements and Competencies of an Integrated System of Care, continued:
Lisa Iezzoni, Harvard Medical School
Panel 1, continued:
Nanfi N. Lubogo, PATH CT and Family Voices
Moderator: Kara Ayers, University of Cincinnati College of Medicine
Panelist: Matt Holder, American Academy of Developmental Medicine
Susan Havercamp, the Ohio State University Nisonger Center
Amy Hewitt, Institute on Community Integration, University of Minnesota
Panel 2 Q&A: Challenges in Workforce Strength and Preparedness
Spotlight Session: Operation House Call, from The Arc of Massachusetts. Presenter: Maura Sullivan
Moderator: Mai Pham, CEO of Institute for Exceptional Care (IEC)
Panelist: Michael Monson, Altarum Institute
Panelist: Ari Ne’eman, Harvard University
Panelist: Cheryl Powell, Mitre
Panel Discussion: Moderator, Mai Pham, IEC.
NASEM Workshop Day 2: Current and Promising Interventions - December 10, 2021
Panel 4: Innovative Models of Care and Care Coordination
Spotlight Presentation
Panel 5: Innovations in Workforce Solutions: Role of General Health Care Providers.
Panel 6: Innovations in Financing and Payment
Remarks: Mai Pham, IEC. (0:00)
Panel IV: Innovative Models of Care and Care Coordination. Moderator: Elizabeth Mahar, The Arc. (starts 6:05)
Clarissa Kripke, UCSF. (Starts 7:15)
Patricia Aguayo, Neurobehavior HOME, University of Utah
Lauren Easton, Commonwealth Care Alliance
Panel 4 Q&A: Innovative Models of Care and Care Coordination
Moderator: Elizabeth Mahar, The Arc.
Spotlight Session: Floreo VR. Presenter: Vijay Ravindran
Moderator: Susan Thompson Hingle, Southern Illinois University School of Medicine.
Panelist: Kristin Sohl, ECHO Autism. (Starts 1:58)
Lisa Howley, Association of American Medical College
Sarah Ailey, Rush College of Nursing.
Panel 5 Q&A: Innovations in Workforce Solutions – Role of General Health Care Providers.
Moderator: Susan Thompson Hingle, Southern Illinois University School of Medicine.
Panel 6: Innovations in Financing and Payment.
Moderator: Mai Pham, IEC.
Panelist: Brede Eschliman, Aurrera Health Group (starts 1:20)
Sarah Scholle, National Committee for Quality Assurance.
Stephanie Rasmussen, Sunflower Health Plan
Panel 6 Q&A: Innovations in Financing and Payment.
Moderator Mai Pham, IEC.
Closing Remarks: James Perrin, Harvard University (Starts 15:45)
NASEM Workshop Day 3: Looking Forward/Blue Skies - December 14, 2021
Panel 7: A New Vision for Models of Care
Panel 8: Technical and Policy Opportunities in Financing and Payment
Panel 9: Scaling Workforce Solutions.
Spotlight Presentation
Opening Remarks by James Perrin, Harvard University.
Panel 7: A New Vision for Models of Care.
Introduction by Kara Ayers, University of Cinncinati, and Alicia Bazzano, Special Olympics, Inc.
John Kitzhaber, Former Governor of Oregon.
Sharon Lewis, Health Management Associates.
Charlene Wong, Duke University.
Panel 7 Q&A: A New Vision for Models of Care.
Moderators: Kara Ayers and Alicia Bazzano.
Panel 8: Technical and Policy Opportunities in Financing and Payment. Introduction by moderator Julia Bascom, Autistic Self Advocacy Network.
Alyna Chien, Boston Children’s Hospital, and Colleen Kidney, Human Services Research Institute.
Joan Alker, Georgetown University Health Policy Institute.
Joshua Sharfstein, Johns Hopkins Bloomberg School of Public Health.
Panel 9: Scaling Workforce Solutions. Introduction by moderator Sandra Schneider, American College of Emergency Physicians.
Helen Burstin, Council of Medical Specialty Societies.
Karrie Shogren, Kansas University Center on Developmental Disabilities.
Andrés Gallegos, National Council on Disability.
Panel 9 Q&A: Scaling Workforce Solutions.
Moderator: Sandra Schneider, American College of Emergency Physicians.
Closing remarks for entire workshop by Rick Gilfillan, former director of the CMS Innovation Center, and Mai Pham, IEC.
Spotlight Session: Maulik Trevedi, StationMD (0:41)
We Put on This Workshop Because of Our Funders
A sponsor who did not want to be named paid for this workshop – a gift inspired by her grandson.
Each day was captured in real time by graphic recorder Renatta Algalarrondo. This example comes from the first panel on Day 1. Find the full graphic record here (Day #1, Day #2, Day #3) or with the video from that day (see links above.)
IEC also thanks the Lucile Packard Foundation for Children’s Health for helping to pay for this work.
White Papers
IEC pushed to have research done on a few topics that were part of the NASEM workshops:
This research is focusing on how healthcare is paid for through different types of payment.
Research Team: Aurerra Health; author, Brede Eschliman
Risk adjustment practices can help identify individuals with IDD as a distinct group and also allocate more resources to those service providers caring for people with IDD so that, ultimately, people with IDD receive the right services. This paper discusses the concept of risk adjustment for payment of healthcare and home- and community-based services (HCBS); current strategies for risk adjustment; why such practices may not work well when designing for payment for services for people with IDD; and potential ways to strengthen these practices.
Research Team: Alyna T. Chien, MD, MS of Harvard Medical School and Boston Children’s Hospital; and Colleen Kidney, PhD, of the Human Services Research Institute
Through stakeholder interviews and reviews of current literature and community experiences, this project will define the critical functions for coordinating clinical and home- and community-based services, and propose who should perform those functions to best support people with IDD.
Research Team: Health Management Associates
Help us reach our goals.