Nation's Top Disabilities Advocates Join Roundtable Discussions on Health Disparities in the Population of People with IDD
By Vanessa Rastović
June 22nd marked the 25th anniversary of the Olmstead Supreme Court decision, which held that the unjustified segregation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. The decision has had a significant impact on disability rights in America and has allowed millions of people with disabilities to live in and contribute to their communities. It also established the right of people with disabilities to receive services in their communities instead of in institutions.
On July 23rd, self-advocates and family members, disability and health professionals, legislators, and staff met for a roundtable discussion on the need to address health disparities in the population of people with IDD by designating them as a Medically Underserved Population. People with disabilities, including IDD, are one of several populations that are medically underserved. And, although we’ve made some progress through laws like the ADA and cases like Olmstead, the pace of implementation continues to be lackluster.
It’s undeniable that in recent decades, life’s pace seems to be accelerating, yet too often, laws, rules, and regulations fail to keep up. Unfortunately, people with disabilities, particularly those with IDD, still face a myriad of challenges in day-to-day life. Whether it is discrimination in employment or underfunding of programs meant to facilitate implementation or support for disability equity, most people with disabilities are still far behind their non-disabled peers. The issue's urgency is clear, and the rules and regulations that scaffold those laws must also change when laws change or become more clearly defined. Many times, it’s not immediately clear which agency rules and regulations are at issue until the most affected citizens point out the problem. This takes authentic relationship building and listening to understand. As a result of constituents sharing their struggles to access healthcare, Congress created the Medically Underserved Population (MUP) designation so that people facing undue barriers might have a better chance to maintain optimal health.
“People with disabilities, including IDD, are one of several populations that are medically underserved. Although we’ve made some progress through laws like the ADA and cases like Olmstead, the pace of implementation continues to be lackluster.”
Many family members of people with disabilities are intimately familiar with this struggle. A parent may find it easier to schedule a dental appointment for typical family members but could face the daunting task of contacting up to 50 providers before finding one who will treat their child with developmental disabilities. These personal experiences, often stark and challenging, drive many self-advocates and family members, like Representative Seth Moulton, to take action and collaborate. This was the driving force behind the organization of the Closing the Gap: People with IDD as a Medically Underserved Population roundtable event on July 23rd at the Rayburn House Office building at the U.S. Capitol.
The event was a testament to the power of collaboration. It brought together self-advocates, family members, disability, health, and policy experts with legislators and Congressional staff to discuss disability health disparities, barriers to inclusive healthcare access, and solutions to remedy what remains, for some, a two-tiered healthcare system. The Roundtable and Oral Health + Disability Photo Exhibit was sponsored by Representative Seth Moulton, 6th District of Massachusetts, and multiple disability and health organizations like the American Academy of Developmental Medicine and Dentistry, the CareQuest Institute for Oral Health, the Oral Health Progress and Equity Network, the NYU Dentistry: Office of Policy and Management, the FISA Foundation, Positive Exposure, Parents & Advocates for Optimal Health (PAOH), and more than a dozen national a state groups supporting an MUP designation for people with IDD. This collective effort is a beacon of hope for a more inclusive future.
Dr. Steven Perlaman (left ) and Dr. Rick Rader (right)
In his opening remarks, Representative Moulton shared that the designation of people with IDD as a Medically Underserved Population was not just a policy issue but a deeply personal one. He revealed that the Healthcare Extension and Accessibility for Developmental Disabilities and Underserved Populations, also known as the HEADs UP Act, was inspired by his late uncle, Andrew, who was born with Down syndrome. Moulton explained to the crowd that despite being advised by doctors to institutionalize Andrew, his grandparents chose to bring him home, where he lived as one of the family’s eight valued children. “Far from burdening our family’s lives, he brightened our lives every day,” Moulton shared.
Voices of Advocacy and Expertise
Moulton wasn’t alone in his concern that more must be done to improve access to inclusive healthcare. The roundtable showcased an array of perspectives from leaders in the field of IDD healthcare and human rights.
Shawn Aleong, a prominent self-advocate, Temple University student, and speaker on the human rights of people with disabilities of color, spoke in detail about the pernicious effects of lingering forms of segregation still embedded throughout the healthcare system. Aleong asked the audience to consider, “If a person with disabilities of color can’t get access to healthcare in their community, are they really a part of that community?”
Dr. Adiaha Spinks-Franklin, a Developmental-Behavioral Pediatrician at Baylor College of Medicine and President of the Society for Developmental and Behavioral Pediatrics, amplified Aleong’s perspective. She also testified that healthcare professionals who exclusively treat patients with developmental disabilities, are increasingly pushed out of the healthcare system due to a lack of support for inclusive healthcare. She especially noted the severe shortage of Developmental-Behavioral Pediatricians throughout the U.S. and American continents. This is a situation that negatively affects a significant number of children of color and other intersecting identities who already struggle with health disparities.
Dr. Steven Perlman, Clinical Professor of Pediatric Dentistry at Boston University School of Dental Medicine and President of Parents and Advocates for Optimal Health (PAOH), discussed why access to and the ability to receive dental care is the number one health problem children and adults with IDD face. As the founder of the Health Athlete and Special Smiles Program for Special Olympics, he collaborated with the Centers for Disease Control for many years, collecting standardized data on the health status of Special Olympics athletes in multiple disciplines, which clearly demonstrated the high burden of disease for this population. He discussed the many barriers to care that people with disabilities face, including lack of professional education and training, insufficient numbers of providers, poor levels of reimbursement, and the complete failure of the system to transition patients from pediatric to adult care.
“The U.S. lacks a framework for setting health priorities for people with IDD and supporting efforts to measure, improve, and hold clinical organizations and health care professionals, payers, and policymakers accountable for the well-being of the IDD population,” noted Dr. Mai Pham, President and CEO of the Institute for Exceptional Care (IEC) and the parent of two children, one of whom experiences Autism Spectrum Difference, or ASD. To assist clinicians and healthcare systems in improving their inclusive care skills and better treat their whole communities, IEC developed a National Roadmap for Disability-Inclusive Healthcare. The Roadmap increases clinicians’ skills and confidence to care for people with IDD while making healthcare settings more welcoming and accessible and giving clinicians a place to learn and implement best practices. Dr. Pham noted that these skills are valuable to the whole community, not just those with IDD.
Amged Soliman, a Senior Attorney Advisor at the National Council on Disability (NCD), stated that the NCD’s Framework for Health Equity for People with Disabilities includes in its recommendations that people with disabilities, in addition to persons experiencing homelessness, migrant and seasonal agricultural workers, and residents of public housing, be designated as a Special Medically Underserved Population. “NCD also supports the HEADs UP Act,” Soliman noted.
Dr. Rick Rader, a leading inclusive care expert, physician, medical anthropologist, and futurist, highlighted the need for systemic changes in how healthcare practitioners and systems think about disability. Dr. Rader, recently invited to address the United Nations General Assembly for World Down Syndrome Day on March 21st, stated that change had to come from the kind of medical education health professionals receive. He testified that health sciences education needs to change, starting with how we assess the value of people with disabilities. Dr. Rader noted that disability isn’t high on the list of priorities for health educators and that there is little if any, time devoted to it, or to interacting with patients with authentic disabilities. He noted that clinicians knowledgeable and comfortable with treating patients with disabilities have valuable and translatable skills across a broad range of conditions throughout the lifespan. These are the medical, behavioral, and oral health professions every community wants and needs but receives little support for. Dr. Rader produced as evidence six rejection letters from leading professional health journals for a paper on the need for inclusive healthcare for people with IDD.
Other notable experts who spoke on behalf of the MUP designation for people with IDD and the HEADs UP Act were Dr. William Barberisi of Boston Children’s Hospital, Valerie Chadwick of the Arc of Philadelphia, Dr. Mark Wolff of the University of Pennsylvania, Mary Foley of the Medicaid/Medicare/CHIP Services Dental Association, and Jennifer Cervantes of Texas Children’s Hospital and Baylor College of Medicine.
Focus on Oral Health
A distinctive focus of the roundtable was oral health, a crucial, yet often neglected component of overall health for individuals with IDD. The Oral Health + Disability Exhibit highlighted photos of individuals experiencing various disabilities and health conditions. The photo exhibit is the work of award-winning photographer and founder of Positive Exposure, Rick Guidotti. Guidotti honed his talents working in New York, Paris, London, and Milan for high-profile clients, including Yves St. Laurent, Revlon, and L’Oréal, but grew frustrated with the mainstream beauty narrative and started Positive Exposure as a way to capture and convey the beauty, diversity, and dignity of people with disabilities.
The exhibit also highlighted the oral health stories of individuals with intellectual and developmental disabilities, like Lillian. Lillian was born with a complex heart condition, and when she needed oral healthcare, her parents began a long search for a dentist who would treat her. When they finally prevailed, the family’s insurance provider refused to cover Lillian’s dental care. Despite a growing body of evidence linking oral health and heart health, among numerous other conditions, the insurance company deemed it medically unnecessary, leaving Lillian’s parents with significant out-of-pocket costs.
Unfortunately, Lillian’s oral health story is all too common for people with disabilities and other complex health conditions. Oral healthcare remains the most challenging form of necessary whole-person care for people with disabilities to access due to provider reluctance and low provider participation rates in public insurance, among other accessibility challenges.
A Path Forward
The roundtable concluded with a compelling call to action urging policymakers, healthcare providers, advocates, and the broader community, to collaborate towards an inclusive healthcare system. The event underscored that, despite significant progress, considerable work remains to ensure that individuals with IDD receive comprehensive, compassionate care. As illustrated by the discussions and exhibits, addressing the community's need for inclusive healthcare for people with IDD transcends health and policy issues; it is a moral imperative.
To join the call for better access to inclusive care for people with disabilities, including IDD, please connect with your Congressional Representatives and Senators. Tell them why it’s essential that they co-sponsor the HEADs UP Act, HR 3380, and a Senate companion bill. If your Representative is already a co-sponsor, please thank them for their courage to support health equity for people with intellectual and developmental disabilities and autism.
About the Author
Vanessa Rastović is an accomplished attorney, math enthusiast, and person who has built a career marked by a deep commitment to social justice and advocacy for marginalized communities and universal inclusion. As a National Science Foundation awardee and Law Review member, Vanessa spearheaded public relations efforts for a non-profit focused on eradicating abuse, while her tenure at Legal Aid saw her providing crucial legal support to refugees, older adults, and people with disabilities. Vanessa is an active member of the American Bar Association, including its Health and Administrative Law sections and the American Society of Law, Medicine, and Ethics. Additionally, she serves on the American Academy of Developmental Medicine and Dentistry’s Presidents’ Workgroup and is appointed to the City-County Task Force on Disabilities.
Beyond her legal career, Vanessa is a multilingual enthusiast and a passionate runner. She has a love for inclusive SCUBA diving, where she explores shipwrecks and encounters marine life such as manta rays, sharks, and octopuses, up close.
