Institute for Exceptional Care (IEC)

@ie-care.org

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Working to make healthcare better and safer for people with intellectual and/or developmental disabilities. #IDD, #PWD, #DisabilityInclusion

New Report Identifies Quality Measures to Improve Healthcare for People with IDD
8 out of 10 autistic girls are undiagnosed at age 18. Boys are 4x more likely to be diagnosed. IEC
The assumption that Home and Community-Based Services (HCBS) is prone to wasteful spending is contrary to the evidence that consistently has demonstrated its cost effectiveness. ... HCBS is the principal means by which older adults and people with disabilities avoid unnecessary and more expensive institutional care. Unfounded Fraud Allegations Threaten Vital Medicaid Home And Community-Based Services - HealthAffairs (March 16, 2016)
Press Release: New ACP Papers Say Health Care Must Be More Accessible and Inclusive for Patients and Physicians with Disabilities
"Every project that we work on includes adults with IDD, we call them self-advocates, as well as family members, and then we add in the healthcare experts. ... That became the DNA of how IEC does its work." - Mai Pham, President and CEO of IEC
Nicole LeBlanc, of Silver Spring, Md., said the word made her feel stigmatized. Credit: KT Kanazawich for The New York Times
"And as long as inequality exists, advocacy will rise, presistent, resilient, and unapologetically human" - BJ Stasio
Webinar: A Community-Led Approach for Measuring and Improving Quality of Care Join us for this Health Equity Webinar to learn how the IIDDEAL project developed a quality rubric centered on what matters most to people with intellectual and developmental disabilities. Discover key findings and their impact on measurement, clinical care, and policy. Date: August 26, 2025 Time: 3:00pm-4:00pm Location: Virtual
70 new members of our IDD Advocate Corps. 2024 Impact Report IEC. Making Healthcare Better for People with IDD.
"I'm a member of IDD Advocate Corps because I really believe in the mission and what I can contribute to it. I like the camaraderie of like-minded people, meeting other self-advocates, and being part of something bigger than myself." - Gyasi Burks-Abbott, IDD Advocate Corps member. 2024 Impact Report IEC. Making Healthcare Better for People with IDD.
"Like everything in life, it's a journey. Healthcare is no different. The Roadmap provides a helpful guide to equitable healthcare for those with IDD. Change happens with listening and continued dialogue." - BJ Stasio, ABC3 Steering Group member.2024 Impact Report IEC: Making Healthcare Better for People with IDD
For too many individuals with IDD and their families, healthcare is still a source of harm and fear rather than healing. It's a system that still too often lacks the training, tools, and culture to serve people with IDD equitably. Changing this reality is not easy, but thanks to you, we made real progress in 2024.- Mai Pham, MD, MPH, President and CEO of IEC- Rick Gilfillan, MD, MBA, Board Chair of IEC2024 Impact Report IEC: Making Healthcare Better for People with IDD
AMWA GETF Our Voices, Our Future
"Today is our day to celebrate who we are. So be proud of who we are, but tomorrow is a new day, and a new battle is coming." - BJ Stasio, Disability Self-Advocate, IEC
"To all those people with disabilities who are scared about their future today: We hear you. We see you. You are not alone. Whatever challenges come next, we'll face them together." - Mai Pham, MD, MPH, President and CEO of IEC (Institute for Exceptional Care)
Instead of improving the Medicaid program, the result would dramatically reduce federal funding by erecting unnecessary administrative barriers and reducing funding by changing longstanding, lawful mechanisms. For these reasons, we urge all Senators to reject any cuts to the Medicaid program and ensure continued access to health care for millions of Americans.June 12, 2025 letter signed by IEC and 190 leading health organizationsModern Medicaid Alliance and IEC Institute for Exceptional Care
"This bill would take coverage away from millions of people with disabilities, older adults, pregnant women, and children by making it as difficult as possible to access the healthcare they are eligible to receive.There is no justification for enacting any of these cuts to Medicaid and taking away healthcare."May 20, 2025, CCD letter to Congress signed by 730 national, state, and local organizations, including IEC (Institute for Exceptional Care).
We Are Hiring. Director of Development or Chief Advancement Officer. Improving healthcare for people with IDD. IEC Institute for Exceptional Care.
"Take time to talk to your constituents with disabilities. Get to know them as people. Get to know them for who they are, not what you see on TV or in the news. My disability doesn’t define me. It enhances my humanness." - BJ Stasio, Disability Self-Advocate in a May 10, 2025 Buffalo News op-ed on Medicaid. IEC
For many people with disabilities and older adults, accessing timely needed care is a life or death matter, and Medicaid is the only program that can meet their needs. We strongly oppose Medicaid cuts in any form. -- April 28, 2025 letter signed by 435+ organizations including IEC (Institute for Exceptional Care) opposing cuts to Medicaid.
"It’s great when we achieve goals but the only reason I’m able to achieve things is because I have an understanding of my mental health plus how my other disabilities impact it." - Yolanda Vargas, Self-Advocate
Improving healthcare for people with IDD. Subscribe to the IEC newsletter. Get tools, stories, and updates that matter. Institute for Exceptional Care.
"Chronic pain looks different in everyone. Chronic pain is more common and presents differently in autistic women and those presenting female at birth. My autistic mind cannot describe pain in the standard medical 1-10 scale." - Nicole Noblet, Autistic Self-Advocate
IEC Joins National Autism Organizations in United Statement Upholding Scientific Integrity and Supporting the Autism Community
"Autism acceptance is more than awareness it’s about recognizing that neurodivergent people have always existed across cultures, communities, and histories. It’s about honoring our deep thinking, sensory needs, and the way we experience the world." - Dennis Tran, Autistic Self-Advocate
Protecting the Health of People with Disabilities. April 8, 2025 from 2-3 pm EDT. With David Hutt, PhD, JD, Legal Counsel, Hoangmai (Mai) Pham, MD, MPH, President and CEO of IEC, and Yolanda Vargas, Self-Advocate,, IDD Specialist. Presented by the Center for Public Health Policy and APHA.
One of the ways you rebuild trust is to give people agency, not just in their own personal care but also in how the system is designed. And that’s been one of the joys of doing this work. - Mai Pham, President and CEO of IEC in a recent Q&A with AJMC.
In response to the HHS Announcement today splitting up the Administration for Community Living, which is part of the continued assault on programs that support aging adults, disabled people and both paid and unpaid caregivers: The co-chairs of the Disability and Aging Collaborative shares the following statement about the announcement today from Secretary Kennedy about the destruction of several vital agencies that support aging adults, disabled people of all ages, caregivers and care workers. The Disability and Aging Collaborative (DAC) is a coalition of organizations that work together to advance long-term services and support policy at the federal level. Formed in 2009, the DAC was one of the first coordinated efforts to bring together disability, aging, and labor organizations. “On behalf of the constituencies that we represent, DAC organizational members are deeply troubled by the announcement today from HHS that they will split the important work of the Administration for Community Living (ACL) across several other agencies, cutting staff and diluting programs. The ACL administers programs,research and services that are vital to the health and wellbeing of older adults and people with disabilities. It plays an essential role in coordinating access to long-term services and supports, enabling people to live independently in their communities. By managing and distributing federal funding for services such as home care, nutrition assistance, and caregiver support, the ACL ensures that older adults and people with disabilities can meet their most basic needs. At a time when the vast majority of aging adults, and nearly all disabled people want to live in their communities, this disruptive change threatens to increase rates of institutionalization, homelessness, and long-lasting economic hardships. This drastic measure also disregards the purpose of ACL, which was created in 2012 to create efficiencies and prevent duplication of efforts between aging and disability
Payers and providers forgo significant opportunity to maximize the effectiveness of value-based payment models when they do not seek input from patients on model design and implementation. Patients have rich insights into what they need for their health and well-being.- IEC’s Mai Pham, Lauren Erickson, and Rick Gilfillan in a March 24, 2025 Health Affairs article.
“True healthcare reform requires the voices of those with lived experiences at its core. It is their insights and perspectives that illuminate the path towards a system that is not only more inclusive but profoundly more effective." - Jensen Caraballo, Disability Advocate
We are honored to receive the AMWA Presidential Award for Improving Clinical Practice. - Mai Pham, IEC President and CEO
IEC's transformative work is reshaping healthcare for individuals with intellectual and developmental disabilities (IDD). - Dr. Susan Hingle, AMWA President
"I know from my personal family experience how much improvement is necessary. I know from my career experience how much is possible." - Nell Buhlman, IEC Board Member
"This project will make a big difference in the world, not just for me but for all special needs people." - Shawn Richards, IEC Delta Dental Advisory Council Member
Medicaid is a major source of health coverage for people with disabilities. More than 1 in 3 people with disabilities (15 million) have Medicaid (35%). In comparison, only 19% of people without disabilities have Medicaid.
Are you an adult with a developmental disability? Seeking adult self-advocates who have developmental disabilities and spent the night in a hospital. What will you do? Join two 1-hour meetings via Zoom to share your experience and ideas. When? 2/11/25 and 2/18/25 from 4-5 pm Eastern Time. What will you get? $50 per hour Contact: IDDHomeTime@duke.edu
Now Hiring! Program and Development Specialist or Senior Specialist
Happy Holidays from all of us at IEC