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
ie-care.org
“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
ie-care.org
Our 2024 Impact Report is here 🎉

We're working to create a healthcare system that works for people with intellectual and/or developmental disabilities (IDD). In 2024, we made meaningful progress thanks to our supporters, partners, and self-advocates.

Read it: www.ie-care.org/making-healt...
Making Healthcare Better for People with IDD: IEC's 2024 Impact Report
At IEC (Institute for Exceptional Care), we believe people with intellectual and/or developmental disabilities (IDD) deserve healthcare that sees, respects, and supports them. In 2024, with your help,...
www.ie-care.org
July 30, 2025 at 3:42 PM
ie-care.org
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
ie-care.org
“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
ie-care.org
Today, the U.S. House passed a budget bill that includes deep cuts to Medicaid. This will directly harm millions of people with disabilities who rely on Medicaid for healthcare, home support, and services that help them live in their communities.

Full statement: www.ie-care.org/a-step-backw...
A Step Backward: Medicaid Cuts Will Harm Millions with Disabilities
Today, the U.S. House passed the budget bill, clearing the way for it to be signed into law by the president. This is a heartbreaking moment for people with intellectual and developmental disabilities...
www.ie-care.org
July 3, 2025 at 6:43 PM
ie-care.org
With recent policy changes creating new obstacles for trans youth and their families, being an informed ally can make a big difference in improving healthcare for the trans disability community.

www.ie-care.org/be-a-better-...
Be a Better Ally: 3 Resources to Better Support the Trans Disability Community
Helpful, and nonjudgemental resources to inform us how the trans community often overlaps with disability and healthcare.
www.ie-care.org
June 25, 2025 at 6:05 PM
ie-care.org
🩺 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
ie-care.org
🚀 New Resource Guide: Essential Tools for IDD Advocates

We're excited to share Essential Resources for IDD Advocates, a curated collection of 45 tools, guides, and reports designed to help self-advocates and family members.

#DisabilityRights #Healthcare #Advocacy

www.ie-care.org/essential-re...
Essential Resources for IDD Advocates - IEC (Institute for Exceptional Care)
Your go-to guide for understanding rights, navigating care, and driving change for people with intellectual and developmental disabilities.
www.ie-care.org
June 10, 2025 at 2:50 PM
ie-care.org
People with intellectual and/or developmental disabilities (IDD) often face unfair barriers to getting quality healthcare.

These 7 resources can help explain your rights, prepare for healthcare visits, and give you tools to lead the life that you want and deserve.

www.ie-care.org/7-resources-...
7 Resources Every Disability Self-Advocate Should Know
June 5, 2025 Author: Justin Gero, Communications Manager at IEC People with intellectual and/or developmental disabilities (IDD) often face unfair barriers to getting quality healthcare. Doctors might...
www.ie-care.org
June 5, 2025 at 12:22 PM
ie-care.org
Proposed federal budget could lead to over 51,000 preventable deaths, researchers from @yalesph.bsky.social @upenn.edu warn.

ysph.yale.edu/news-article...
Proposed Federal Budget Could Lead to Over 51,000 Preventable Deaths, Researchers Warn in Letter to Senate Leaders
In a letter to ranking Senate leaders, public health and policy researchers at Yale University and the University of Pennsylvania warn that provisions in the
ysph.yale.edu
June 3, 2025 at 4:41 PM
ie-care.org
📣 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
ie-care.org
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
ie-care.org
"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
ie-care.org
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
ie-care.org
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
ie-care.org
"Imagine losing access to the care that helps you get out of bed, go to work, and live life with dignity. For millions of Americans with disabilities, Medicaid is the difference between independence and isolation."

New oped in @buffalonews.com: buffalonews.com/opinion/arti...
Another Voice: Medicaid cuts hurt people with Intellectual and/or developmental disabilities
BJ is employed and has private insurance, but it doesn’t come close to covering cover all his essential needs. Medicaid fills the gaps. As BJ puts it, “Medicaid helps me
buffalonews.com
May 10, 2025 at 1:55 PM
ie-care.org
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
ie-care.org
“It shows absolutely nothing about any Administration for Community Living (ACL) funding at all. Other operating divisions within HHS are identified, but there is nothing about disability, nothing about aging, nothing at all under the HHS category."
May 5, 2025 at 3:48 PM
ie-care.org
We're proud to share that our CEO Mai Pham is joining an excellent panel of leaders for a State of the Union for the Disability Community on 5/7 from 3-4 pm ET.

Discuss disability priorities and the actions needed to improve access, quality, and outcomes.

www.gih.org/event/state-...
State of the Union for the Disability Community - Grantmakers In Health
The current U.S. landscape for people with disabilities is growing more complex as changes to critical policies such as Medicaid and Social Security are being proposed and enacted. Join us for a “stat...
www.gih.org
May 2, 2025 at 12:20 PM
ie-care.org
Check out this guidance from @acog.org. They just published this important statement on how OBGYNs and other professionals can understand and address the barriers that disabled people face when trying to access reproductive healthcare.

#DisabilityRights #HealthEquity #ReproductiveHealth #IDD
acog.org ACOG @acog.org · Apr 25
Too many disabled patients face barriers to quality reproductive care. Our latest guidance urges ob-gyns to address ableism, challenge bias, and ensure patients with disabilities receive the full range of services. Let’s build inclusive, patient-centered practices. Learn more: buff.ly/vAnO1oB
April 28, 2025 at 6:26 PM
Reposted by Institute for Exceptional Care (IEC)
acog.org
Too many disabled patients face barriers to quality reproductive care. Our latest guidance urges ob-gyns to address ableism, challenge bias, and ensure patients with disabilities receive the full range of services. Let’s build inclusive, patient-centered practices. Learn more: buff.ly/vAnO1oB
April 25, 2025 at 1:00 PM
ie-care.org
"Autistic people are not a burden to be managed. They are community members to be heard, respected and empowered."

For Autism Acceptance Month, our CEO Mai Pham, co-authored a powerful letter in @washingtonpost.com with disability advocate Gyasi Burks-Abbott.

www.washingtonpost.com/opinions/202...
Opinion | RFK Jr. called autism a ‘preventable disease.’ He couldn’t be more wrong.
Readers respond to Robert F. Kennedy Jr.’s rhetoric about autism with their own experiences.
www.washingtonpost.com
April 25, 2025 at 1:37 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