Institute for Exceptional Care (IEC)
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Institute for Exceptional Care (IEC)
@ie-care.org
63 followers 40 following 130 posts
Working to make healthcare better and safer for people with intellectual and/or developmental disabilities. #IDD, #PWD, #DisabilityInclusion
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🚨 Big News! 🎉 Today (Aug 26, 2025) our CEO Dr. Mai Pham joins Dr. Teal Benevides, Dr. Julie Seibert & Dr. Kathryn Thompson to present key findings from the IIDDEAL project. @academyhealth.bsky.social

This #virtual event is FREE & open to all! Register here 👉 academyhealth.org/events/webin...
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
August 26, 2025 at 2:06 PM
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In 2024, IEC's IDD Advocate Corps tripled in size from 30 to 90 members. This growing group of self-advocates, care partners, and healthcare professionals is helping to drive real change by sharing lived experience, building trust, and shaping solutions from the inside out.
70 new members of our IDD Advocate Corps. 2024 Impact Report IEC. Making Healthcare Better for People with IDD.
August 4, 2025 at 7:08 PM
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“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

Learn more about the Advocate Corps and other accomplishments in our 2024 Impact Report: www.ie-care.org/making-healt...
"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.
August 4, 2025 at 7:08 PM
ie-care.org
In 2024, we released The Roadmap for Disability-Inclusive Healthcare, a shared vision for a future where people with intellectual and/or developmental disabilities (IDD) receive safe, equitable care.

Find The Roadmap and our vision for inclusive healthcare here: www.inclusivecareroadmap.org
"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
July 31, 2025 at 2:43 PM
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✅ Launched the National Roadmap for Disability-Inclusive Healthcare
✅ Developed the Always Uniquely Me app to support self-advocacy in ERs
✅ Created a new 90-minute continuing education course
✅ Expanded the IDD Advocate Corps from 30 to 90 members
✅ Published national IDD health goals in @jama.com
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
July 30, 2025 at 3:42 PM
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We’re excited to share that our president and CEO, Dr. Mai Pham, was featured on the latest episode of Our Voices, Our Future, a podcast by @amwadoctors.bsky.social

🎧 Listen to the episode!
Apple: podcasts.apple.com/us/podcast/d...
Spotify: open.spotify.com/episode/1yrm...
AMWA GETF Our Voices, Our Future
July 22, 2025 at 8:24 PM
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“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

BJ delivered a powerful message at New York’s celebration of the 35th anniversary of the Americans with Disabilities Act (ADA).
"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
July 17, 2025 at 4:54 PM
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IEC President and CEO Dr. Mai Pham shared the following:

"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."
"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)
July 3, 2025 at 6:43 PM
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🩺 Standing up for Medicaid Access

We recently joined 190 leading health organizations in signing onto a letter from the Modern Medicaid Alliance to Senate leadership, urging them to reject harmful Medicaid cuts.

Read the letter here: lnkd.in/edhvt67v

#MedicaidMatters #IDD #ProtectMedicaid
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
June 12, 2025 at 6:59 PM
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📣 Important Medicaid Update

This week, we joined more than 730 organizations in urging Congress to reject harmful Medicaid cuts that would jeopardize access to care for millions of people with disabilities, older adults, pregnant women, and children.
"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).
May 22, 2025 at 1:53 PM
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Come work with us!

We're hiring for a Director of Development or Chief Advancement Officer to manage and implement a strategic vision for our comprehensive fundraising program.

➡️ $150,000-$175,000
➡️ Fully Remote

Click here to apply: jobs.gusto.com/postings/ins...
We Are Hiring. Director of Development or Chief Advancement Officer. Improving healthcare for people with IDD. IEC Institute for Exceptional Care.
May 19, 2025 at 8:00 PM
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"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
"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
May 16, 2025 at 12:20 PM
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Medicaid is a lifeline for our communities, and we cannot afford any part of it to be cut.

That's why we joined 435 organizations in urging Congress to oppose any funding cuts, work requirements, or eligibility restrictions to Medicaid.

Read the letter: www.c-c-d.org/fichiers/Let...
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.
May 13, 2025 at 2:49 PM
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We're recognizing #MentalHealthAwarenessMonth by highlighting resources and personal stories shared by members of IEC's IDD Advocate Corps.

For Yolanda, wellness takes preparation. She puts in real time and energy to plan for the days when her mental health is not at its best.
"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
May 12, 2025 at 6:22 PM
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Big changes in healthcare start with informed, passionate communities.

IEC’s newsletter keeps you connected to make care better and safer for people with IDD.

✅ Stories of real impact
✅ Updates on the latest news
✅ Ways you can advocate or support

Join: ie-care.us6.list-manage.com/subscribe?u=...
Improving healthcare for people with IDD. Subscribe to the IEC newsletter. Get tools, stories, and updates that matter. Institute for Exceptional Care.
May 6, 2025 at 8:27 PM
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💬 “When I come here, I can laugh, I can be myself... It’s just a great experience and I can’t thank everyone enough for your input and your leadership."

We want to share a powerful message from Nathaniel Lentz, a passionate self-advocate and member of our IDD Advocate Corps at IEC. 💙
April 24, 2025 at 1:47 PM
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"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

#AutismAcceptanceMonth
"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
April 22, 2025 at 2:07 PM
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IEC joined a coalition of leading Autism, disability, and public health organizations to stand united in our call for science-based decision-making and increased investment in the research, programs and services the Autism community needs to live fully.

Statement: www.ie-care.org/leading-auti...
IEC Joins National Autism Organizations in United Statement Upholding Scientific Integrity and Supporting the Autism Community
April 18, 2025 at 2:24 PM
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April is Autism Acceptance Month, a time to celebrate autistic people, honor their strengths, and advocate for a future where everyone belongs.

Autism acceptance is more than just knowing autistic people exist. It means valuing them, supporting them, and creating communities where they can thrive.
April 16, 2025 at 1:37 PM
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Autism acceptance means more than awareness. It means honoring autistic people’s needs, histories & experiences.

As Dennis Tran says, “Neurodivergent people have always existed.”

Let’s build a healthcare system that sees and supports all of us.
#AutismAcceptanceMonth
"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
April 11, 2025 at 1:49 PM
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💻 Upcoming Webinar: Protecting the Health of People with Disabilities 💻

Tues, Apr 8 from 2-3 pm ET

Join our President and CEO Mai Pham and IDD Advocate Corps member Yolanda Vargas for this webinar hosted by @apha.org

Register: www.pathlms.com/health/cours...

#DisabilityHealth #PublicHealth
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.
April 3, 2025 at 5:40 PM
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In a recent Q&A with The American Journal of Managed Care (AJMC), our President and CEO Mai Pham shared her insights on how value-based care principles, workforce training, and authentic community engagement can drive systemic change.

Read the full Q&A here: www.ajmc.com/view/managed...
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.
April 2, 2025 at 3:12 PM
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🚨 We Stand with the Disability and Aging Collaborative 🚨

IEC strongly opposes the recent decision by HHS to dismantle the Administration for Community Living (ACL).

Read the full DAC statement here: www.linkedin.com/feed/update/...
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 networks - now, a function at significant risk. ACL serves as a hub across HHS and with other Departments to coordinate services and supports critical to disabled people and older adults, such as Long-term Services and Supports and affordable housing, facilitating federal, state and local cross-sector partnerships focused on efficient use of limited resources. ACL has coordinated many interagency initiatives like the National Strategy to Support Family Caregivers and the Interagency Coordinating Committee on Healthy Aging and Age-Friendly Communities. Today’s announcement offers no guarantees that these essential functions will continue. This development comes amidst other alarming threats, including proposed cuts to Medicaid, SNAP, and Social Security, and the dissolution of the Department of Education. This announcement represents a continued affront on the programs that support the constituencies that DAC represents, and cannot move forward.”
March 28, 2025 at 3:46 PM
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"Dr. Hoangmai (Mai) Pham, President and CEO of IEC, challenged outdated diagnostic rubrics and pointed out that many clinicians still aren’t adequately trained in neurodiversity. Pham argued that designing care systems with neurodivergent individuals in mind would ultimately benefit everyone."
March 28, 2025 at 3:35 PM
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For more than a decade, value-based payment models have aimed to improve healthcare quality while controlling costs. But so far, the results have been mixed.

Our proposal? Authentically engage patients and make them partners in shaping healthcare.

Read more: www.healthaffairs.org/content/fore...
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.
March 24, 2025 at 2:33 PM