Changing How Healthcare is Paid For
IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading): Outcomes That Matter
This project aims to:
--Agree on the most important health and life goals for people with IDD
--Find ways to track progress toward these goals
Changing How We Measure Health Results to Focus on What Matters Most to Each Person
IEC started the IIDDEAL project with Augusta University. The project aims to:
--Find out what health results matter most to people with IDD and their families
--Learn how doctors, insurance companies, and rule makers can help achieve these results
--Make a clear plan to measure and improve healthcare for people with IDD
The end goal is to make sure people with IDD get the best possible care.
These health results will help guide future studies, choices made in healthcare and insurance, and most importantly, make life better for people with IDD.
The project puts people with IDD and their communities at the center. People with IDD and their care partners take the lead and work closely with doctors and others in healthcare to make this happen.
- 1 in 20 Americans have IDD
- 4x: how much more likely a person with IDD is to be treated badly by healthcare professionals than a person without IDD
- 4x: how much more likely women with IDD are to die during pregnancy than women without IDD
- 30% of people with IDD had bad experiences during hospital visits
Why This Matters
It has been hard for a long time for people with IDD to get good healthcare that meets their unique needs and matches their preferences. The way healthcare research and decisions are usually made often doesn't include the different experiences of people with IDD or focus on what matters most to people with IDD.
People with IDD are often left out of research, healthcare leadership positions in healthcare, and making policies. This means there isn't a full understanding of what people with IDD need for their health or what matters most to people with IDD. People with IDD want to focus on things like being able to do daily activities, participating in social situations, and overall well-being.
This disconnect has led to a healthcare system that is not working well for people with IDD. The care they receive is often:
Not focused on the individual person
Not fair or equal
Not helpful in reaching their personal goals
Important Guide: Quality Measure Basics
A quality measure is a tool we use to assess how well health care is working for us.
This guide will introduce you to quality measures and help you understand why they are so important.
IIDDEAL Highlights
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2025
Phase 3: Hosting the IIDDEAL-3 Policy Summit to share our recommendations on how priority measures should be used in the short and long term and discuss potential challenges for next steps.
2025
Phase 3: Organize a Consensus Working Group of experts to create a detailed plan for broader application of IIDDEAL measures, including testing for the IDD population, engaging regulators, securing pilots, and supporting advocacy.
2025
Phase 3: Build capacity and consensus among people with IDD, caregivers/partners, insurers, clinicians, policymakers, and measurement experts to prioritize measures.
2025
Phase 3: Partnered with NCQA to identify gaps among existing quality measures that align with IIDDEAL’s 9 outcome domains and 29 supportive elements.
2024
Phase 3: Build on previous IIDDEAL projects to create consensus on a set of quality measures.
2024
Phase 2: Published IDD Health Outcomes That Matter: Community-Led Standards for Improvement, a consensus health outcomes framework, for public comment.
2024
Phase 2: Hosted a second IIDDEAL Policy Summit to share project learnings with additional healthcare and disability leaders.
2023
Phases 1 & 2: Held first IIDDEAL Policy Summit. Attendees included representatives from federal and state agencies, healthcare quality-focused nonprofits, and funders.
2023
Phases 1 & 2: Held in-person health outcomes framework consensus meeting. The consensus workgroup included 35+ members, who met virtually from May 2023 to September 2023 before convening in Washington, DC, to drive goals for the health outcomes framework.
2022
Phase 1: IEC formed partnerships with:
--Augusta University
--Brandeis University
--44 people with IDD who advocate for themselves
--39 caregivers and
--28 other healthcare leaders, including:
--Insurance companies
--Researchers
--Policymakers
--Others
IDD Health Outcomes That Matter: Community-Led Standards for Improvement
Being truly healthy is about more than just physical signs like blood pressure or heart rate. For people with IDD, well-being means a complete set of outcomes that are most important to them personally. This agreed-upon framework explains:
--9 main areas of health outcomes
--29 elements that should be prioritized
By focusing on the real-life experiences of people with IDD and their care partners, we can change healthcare so that it provides individualized support that improves people's quality of life.
IIDDEAL Phase 3 Project Members
The IDDEAL Project group includes people with IDD, their care partners, doctors, and other healthcare leaders. This diverse group works together based on listening to the real-life experiences of people with IDD and healthcare professionals. They use these perspectives to create practical solutions to improve healthcare.
Click on each to expand
Project Leadership Team
- Mai Pham, Institute for Exceptional Care (IEC)
- Omar Mobasher, Institute for Exceptional Care (IEC)
- Teal Benevides, Augusta University
- Jennifer Jaremski, Augusta University
- Julie Seibert, National Committee for Quality Assurance (NCQA)
- Sarah Sweeney, National Committee for Quality Assurance (NCQA)
- Caroline Blaum, National Committee for Quality Assurance (NCQA)
- Tim Corey, Colibri Facilitation
Project Stakeholder Core Team
- Helen Burstin
- Stephen Shore
- Vincent Siasoco
- Carolyn Langer
- Alexis Hernandez-Hons
- Marco Damiani
- Penny Lema
Project Advisory Council
- Chester Finn
- Ivanova Smith
- Morénike Giwa Onaiwu
- Sue Hingle
- Merrill Friedman
- Arethusa Kirk
- Maura Sullivan
- Jennifer Poon
- Mike Skoch
- Sarah Scholle
- Karla Ausderau
- Tracy Jirikowic
National Consensus Workgroup
- Chester Finn
- Ivanova Smith
- BJ Stasio
- Huan Vuong
- Tyler Engel
- Charlotte Woodward
- Rebecca Anhang-Price
- Marco Damiani
- Sue Hingle
- Susan Platkin
- Meelin Dian Chin Kit-Wells
- Penny Lema
- Jennifer Bright
- Matt Pickering
- Lindsay DuBois
- Steven Merahn
- Karla Ausderau
- Stephen Shore
- Vincent Siasoco
IIDDEAL Phases 1&2 Project Team
Below is a list of project partners and contributors for IIDDEAL Phases 1 & 2.
Project Leadership
- Mai Pham, President and CEO, IEC
- Teal Benevides, Associate Professor, Institute of Public and Preventive Health, Augusta University
- Joanne Nicholson, Brandeis University
Project Team
- May-Lynn Andresen, Director of Community Partnerships, IEC
- Madelyn Bahr, Senior Program Specialist, IEC
- Reid Caplan, Accessibility Consultant
- Tim Corey, Graphic Facilitator
- Kristen Faughnan, Brandeis University
- Jen Jaremski, Augusta University
- Melissa MacKay, Brandeis University
Project Stakeholder Core Team
- General Clinician Lead: Helen Burstin, CEO, Council of Medical Specialty Societies (CMSS)
- Payer/Regulator Lead: Carolyn S. Langer, Regional Vice President, Senior Clinical Officer for the NY, CT, NH, and ME, Anthem, Inc.
- Self-Advocate Lead: Stephen Shore, Self-Advocate and Professor, Adelphi University
- IDD-Specialty Clinician Lead: Vincent Siasoco, Assistant Professor, Department of Family and Social Medicine and Department of Pediatrics, Albert Einstein College of Medicine
- Family Care Partner Lead: Sequaya Tasker, Senior Executive Officer of Program Initiatives, The Arc, National Office
Project Advisory Council
- Kruti Acharya, Associate Professor of Disability and Human Development and Pediatrics, University of Illinois Chicago
- Karla Ausderau, Associate Professor, Department of Kinesiology Occupational Therapy Program, University of Wisconsin–Madison
- Kayte Barton, Self-Advocate
- Chester Finn, Self-Advocate and Co-Founder, Community Empowerment Programs Inc.
- Merrill Friedman, Elevance Health
- Susan Hingle, Associate Dean for Human and Organizational Potential and Director of Faculty Development, Southern Illinois University School of Medicine
- Tracy Jirikowic, Clinical Researcher, University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network
- Khalilah R. Johnson, Assistant Professor, Division of Occupational Science and Occupational Therapy, University of North Carolina School of Medicine
- Arethusa Stevens Kirk, National Senior Medical Director and East Region Medical Officer, UnitedHealthcare Community & State
- Sharon Lewis, Principal, Health Management Associates (HMA)
- Morénike Giwa Onaiwu, Self-Advocate and Innovation & Digital Communication Director, the Autistic Women and Nonbinary Network
- Ivanova Smith, Self-Advocate and Faculty, Neuro-developmental and Related Disabilities (LEND) Department, University of Washington Leadership Education
- Mary Sowers, Executive Director, National Association of State Directors of Developmental Disabilities Services (NASDDDS)
National Consensus Workgroup
- May-Lynn Andresen
- Rebecca Anhang Price
- Karla Ausderau
- Teal Benevides
- Madelyn Bahr
- Jeffrey Brosco
- Helen Burstin
- Tim Corey
- Marco Damiani
- Tim Engelhardt
- Lauren Erickson
- Kristen Faughnan
- Chester Finn
- Morénike Giwa Onaiwu
- Alexis Hernandez-Hons
- Susan Hingle
- Matt Holder
- Arethusa Kirk
- M. Dian Chin Kit-Wells
- Carolyn Langer
- Penelope “Penny” Lema
- Thomas Mangrum
- Adam Myers
- Joanne Nicholson
- Patricia (Pat) Nobbie
- Hoangmai (Mai) Pham
- Bob Phillips
- Susan Platkin
- Rick Rader
- Linda Shaughnessy
- Stephen Shore
- Vincent Siasoco
- Julie Siebert
- Mike Skoch
- Ivanova Smith
- Maura Sullivan
- Sequaya Tasker
- Huan Vuong
IEC is grateful for the following funders, whose support makes IIDDEAL possible:
Making Healthcare Better and Safer for People with IDD
IEC works with people who have personal experience living with IDD and healthcare professionals. Together, they create new programs focused on patients' needs to change how healthcare is taught, provided, and paid for.
IDD Health Outcomes That Matter: Community-Led Standards for Improvement
True health is more than just vital signs. For people with IDD, well-being includes many different aspects of life that are important to them personally. This agreed-upon plan defines the 43 National Goals, nine Health Outcome Domains, and 29 Priority Elements that healthcare leaders must focus on, representing the perspectives of the IDD community.
By focusing on the real-life experiences of people with IDD and their care partners, we can change healthcare so that it provides individualized support that improves people's quality of life.