The Path to Equity
A Podcast with Dr. Craig Escudé and Alison Barkoff
In a recent episode of the IDD Health Matters podcast, Dr. Craig Escudé sat down with Alison Barkoff , Hirsh Health Law and Policy Associate Professor at George Washington University’s Milken Institute School of Public Health and former Acting Administrator and Assistant Secretary of the U.S. Department of Health and Human Services’ Administration for Community Living. Together, they explored the intersection of healthcare, civil rights, and the lived experiences of people with intellectual and developmental disabilities (IDD). Their conversation, recorded live at the National Association of Sate Directors of Developmental Disabilities Services (NASDDDS) conference, offers a powerful look at how policy, practice, and advocacy intersect to shape lives.
Alison began by sharing the personal roots of her professional journey.
Dr. Craig Escudé: Welcome to another episode of IDD Health Matters. I’m your host, Dr. Craig Escudé. Today, we have the honor of speaking with someone whose work has had a major impact on the lives of people with intellectual and developmental disabilities—Alison Barkoff. Alison, thanks for being here.
Alison Barkoff: Thank you, Craig. I’m really happy to join you and to be part of this important conversation.
Personal Motivation
Craig: Let’s start with your journey. What led you to become an advocate for people with intellectual and developmental disabilities?
Alison: Like so many people in this field, my passion started from personal experience. I have a younger brother named Evan who was born with an intellectual disability in the late 1970s. Back then, the dominant message to families was to place their children in institutions. But my parents were determined to do something different. They believed Evan should grow up at home, go to school in his community, and have a full life just like anyone else.
Craig: That must have taken a lot of courage and persistence, especially at that time.
Alison: It did. But we were also fortunate to be part of a wave of change that was beginning, thanks to the civil rights movement for people with disabilities. So I grew up not just watching my family advocate for my brother, but also being part of a community fighting for systemic change. That shaped both my personal and professional trajectory—I became a disability rights lawyer and policy advocate.
Policy Wins and Challenges
Craig: You’ve led many important efforts in this space. Looking back over the past few years, what stands out to you as a major milestone?
Alison: One of the things I’m most proud of is work we did at the Administration for Community Living (ACL), where I served as the Acting Administrator and Assistant Secretary for Aging. A major initiative was modernizing the regulations for Section 504 of the Rehabilitation Act. These are the foundational civil rights protections that prohibit discrimination on the basis of disability in programs that receive federal funding—including health and human services.
Craig: Those regulations had been in place for decades, right?
Alison: Yes, almost 50 years without an update. And that’s a problem because the healthcare system has evolved dramatically in that time. The outdated regulations didn’t adequately address modern-day healthcare delivery—things like electronic kiosks, telehealth platforms, and websites that often aren’t accessible to people with disabilities.
Craig: I remember the pandemic brought a lot of these issues to the forefront.
Alison: Exactly. During the COVID-19 public health emergency, we saw firsthand how dangerous it is when people with disabilities are excluded or deprioritized in healthcare. In some states, crisis care guidelines explicitly excluded people with disabilities from accessing critical treatments like ventilators or ICU beds. That’s not just unethical—it’s illegal.
“Medical decision-making should be based on facts—on the person’s actual health status, preferences, and goals of care—not on stereotypes or blanket exclusions. Under disability rights laws like Section 504 and the Americans with Disabilities Act, it is illegal to categorically deny care based on a diagnosis like intellectual disability. Yet, that’s what we saw happening.”
Medical Discrimination and Disability Bias
Craig: That kind of discrimination is shocking—and heartbreaking. And it’s based on some very dangerous assumptions, isn’t it?
Alison: It really is. Too often, decisions in healthcare are rooted in ableism—the idea that disabled lives are less valuable or less worth saving. For instance, medical providers might wrongly assume that someone with a disability has a low quality of life, and therefore isn’t worth treating. That’s not only offensive—it leads to worse outcomes and, in some cases, preventable deaths.
Craig: Let’s clarify something here for listeners. We’re not saying every person has to receive the same treatment in every case. But the decision should never be based solely on someone’s disability. It should be individualized, right?
Alison: Exactly. Medical decision-making should be based on facts—on the person’s actual health status, preferences, and goals of care—not on stereotypes or blanket exclusions. Under disability rights laws like Section 504 and the Americans with Disabilities Act, it is illegal to categorically deny care based on a diagnosis like intellectual disability. Yet, that’s what we saw happening.
The Role of Health Provider Training
Craig: And one of the biggest contributors to this issue is the lack of training among healthcare professionals. I didn’t receive a single lecture in medical school about treating people with intellectual and developmental disabilities.
Alison: You’re not alone. There’s extensive research that shows most doctors don’t feel confident or competent treating patients with disabilities. That’s a systemic failure in medical education. And it’s not just about attitudes—it’s about clinical knowledge.
Craig: Right. It’s one thing to know how to speak respectfully, but healthcare providers also need to understand the actual medical needs of people with IDD. For example, someone with Down syndrome may have different risk factors, different signs of aging, different medication responses.
Alison: Absolutely. And as people with IDD live longer, we’re seeing new health challenges emerge. My brother, for example, has Down syndrome. When he was born, the average life expectancy for people with Down syndrome was just 16. Now it’s around 60. But that longer life span also brings higher rates of dementia and other age-related conditions that providers aren’t always prepared to manage.
Craig: And when someone with IDD begins to experience new behaviors or health issues, the default assumption is often, “Oh, it’s just their disability.” That’s what we call diagnostic overshadowing—and it’s a huge problem.
Alison: Yes. It leads to missed diagnoses, untreated conditions, and declining quality of life. That’s why healthcare systems and training programs must treat disability competence as essential—not optional.
Reaching Beyond the Disability Field
Craig: One of the challenges I often think about is how to move these conversations beyond our usual circles. We’re here at the NASDDDS conference, surrounded by people who already care deeply about disability rights. But how do we get the rest of the healthcare world to pay attention?
Alison: That’s a great question—and one I’ve been thinking about a lot. I recently made a transition to academia. I’m now the Hirsh Health Law and Policy Professor at the George Washington University Milken Institute School of Public Health. My goal is to embed disability into the broader public health conversation—because disability cuts across every population and every system.
Craig: That’s exciting news. Congratulations!
Alison: Thank you! It’s an incredible opportunity to bring disability issues into conversations about health equity, aging, mental health, racial justice—you name it. Disability isn’t a separate issue; it’s part of everything.
Craig: That’s why we do this podcast—to spark conversations outside the bubble. I recently gave a talk at the American Academy of Family Physicians and was thrilled to see so many clinicians interested in learning more about IDD care.
Alison: That’s exactly the kind of outreach we need. Because the reality is, people with disabilities are everywhere. They’re part of every community. And the systems we build for them—whether it’s healthcare, education, or transportation—benefit everyone.
Final Thoughts
Craig: I like to end each episode by asking our guests to share three key things they want people to understand about intellectual and developmental disabilities. What would your three be?
Alison:
People with disabilities are full human beings. They have strengths, talents, preferences, and dreams—just like everyone else. They deserve to be seen, respected, and included.
Disability is a natural part of the human experience. It intersects with every other identity—race, age, gender, etc.—and it affects every community. Addressing disability is essential to achieving true equity.
When we include people with disabilities, we improve society for everyone. Think of things like curb cuts, closed captioning, or flexible work options—they were designed for accessibility, but they help everyone.
Craig: That’s a beautiful way to sum it up. Alison, thank you so much for being here and for the amazing work you continue to do.
Alison: Thank you, Craig. And thank you for using this platform to keep these important conversations going.
You can find this episode of the IDD Health Matters podcast[DT4] , and over 100 other episodes on YouTube or streamed via your preferred podcast platform!
To learn more about Alison Barkoff, please visit https://publichealth.gwu.edu/alison-barkoff.
About the Podcast Participants
Alison Barkoff is the Hirsh Health Law and Policy Associate Professor at George Washington University’s Milken Institute School of Public Health and former Acting Administrator and Assistant Secretary of the U.S. Department of Health and Human Services’ Administration for Community Living. Full bio it is at https://publichealth.gwu.edu/alison-barkoff.
Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an e-learning course used to train clinicians on the fundamentals of healthcare for people with IDD.