How did we get here? How did we let this happen? How have healthcare providers been allowed to refuse care for the most vulnerable population without thought or consideration for the very community who needs them more than anyone else?
It is time for people with intellectual/developmental disabilities (IDD), their families, the village that supports them, and the healthcare professionals that are responsible for their well-being to grab their pitchforks and storm the castle to end the purposeful exclusion by our government to designate them a medically underserved population (MUP). We (the authors) define IDD as people having a diagnosis of autism, cerebral palsy, Down syndrome, and hundreds of other genetic syndromes.
On March 25, 1966, the Rev. Martin Luther King Jr. declared, "Of all the forms of inequality, injustice in health is the most shocking and inhumane." Data, research, government reports, agency recommendations, and irrefutable evidence-based facts show that people with IDD are the most invisible and most medically underserved minority population.
Sadly, little has been done to address the healthcare disparities experienced by one of the most vulnerable and marginalized populations: children and adults with IDD. One would have hoped that the humanistic nature and character of a just society would have been the impetus to address and rectify this shameful reality, but, in essence, little has been achieved. Often, the only way to get action to protect, support, and ensure health equity is through requirements, mandates, or legislature.
The MUP Quandary
In 2004, when Dr. Matt Holder of the American Academy of Developmental Medicine and Dentistry (AADMD) applied for a "health disparities research" loan repayment program through the office of minority health and health disparities, the office informed him that he was turned down because the ID population was "not considered a health disparities population." When he brought up the Surgeon General report that had just been released at the time and detailed all the disparities, he was told that in order to qualify as a health disparities population, the ID population would have to be designated as a MUP by the Health Resources and Services Administration (HRSA) and they were not.
Several of the authors of this article have had an arduous journey regarding the MUP quandary. When Dr. Holder brought this problem to the attention of the AADMD, they immediately began forming partnerships to try to find a remedy to this injustice. To this day, some 20 years later, the AADMD and its partner organizations, such as the American Association for Health on Disability (AAHD), Institute for Exceptional Care (IEC), Medicaid CHIP State Dental Association, Achieva's Disability Healthcare Initiative, People Advocating for Optimal Health (PAOH), Special Olympics International, National Down Syndrome Congress, American Medical Association (AMA), American Dental Association (ADA), Arc, President's Committee for People with Intellectual Disabilities (PCPID), and many others, have all tried at state and federal levels to get this change passed. Yet, all have been unsuccessful.
Benefits of MUP Designation
The medically underserved population designation would benefit individuals with IDD in numerous ways:
• The MUP designation would ease the burden of recruiting physicians to treat patients with IDD by reducing their school loans.
• More than 25 government programs within HRSA and other federal agencies require a designation as a MUP to participate in or benefit from "billions of federal resources." These programs cover federal funding for health center and public health infrastructure development such as federally qualified health centers.
• Funding would be provided for ongoing training to Title VII and VIII training programs for those who work with MUPs. The Title VII and VIII training programs provide federal funding to train primary care providers, nurses, dentists, mental/behavioral health workers, and other health professionals who work with MUP. These competent providers would be treating people with IDD and, based on advanced training, achieve improved outcomes.
• MUP designation would allow for the creation of additional federally qualified health centers (FQHC) designed to provide care for patients with IDD.
• It enables a variety of federal agencies and state health departments to qualify for J-1 visa waivers for physicians.
• MUP designation provides for increased reimbursement for funding and funding preferences. Increased reimbursement increases the incentive to treat patients with IDD.
• Individuals with IDD with the MUP designation can be included in federally funded research projects, leading to evidence-based practices and improved clinical outcomes.
• MUP members can become eligible for research in "health disparities"-defined programs.
In summary, the benefits to individuals with IDD being designated as MUP include additional physicians into the workforce, research aimed at improving outcomes, and increased reimbursement, which would add to the numbers of providers, clinics, private officers, and academic centers willing to treat these patients.
Why No Action?
Why have so many in the public health profession chosen to ignore this lack of designation despite being aware of it? Why has most of the disability community involving both children and adults not mobilized to correct this problem? Why are so many voices silent among the families of these individuals, advocates, self-advocates, and healthcare professionals? Perhaps because they simply don't know about it. If no one told you that you were medically underserved would that change the way you relate to medical care? Would that change your expectations? This is not just a hypothetical point to ponder.
When those who genuinely care are confronted with the fact about MUP designation, their reply is invariably complete disbelief. They exist in silos, fixated on their own issues and self-interests, but lack a unified response.
According to the IEC, AADMD, and PAOH, the number of children and adults eligible for MUP designation is in the 10 million to 13 million range, far more than the 7.5 million reported by the government. For individuals under the age of 5, the US Census reports only blind and deaf children as having IDD. Autism and other disabilities are excluded from this data. This is compared to the approximately 53 million people with disabilities reported by the government.
Effecting Change
On September 26, 2023, the National Institute on Minority Health and Health Disparities designated people with IDD as a "health disparity population," yet HRSA's failure to designate them as a MUP is unconscionable. Other heroes are the National Council on Disability, PCPID, AADMD, PAOH, AAHD, AMA, ADA, disability advocate Jim Brett, Honorable Neil Romano, and US Congresspersons Seth Moulton, Brain Fitzpatrick, and Debbie Dingle. People and agencies who can fix this need to have the political will to do so. This includes congressional leaders of the disability caucus, Senate members of the disability community, and every other congressperson who is a parent or caregiver of a person with a disability.
Mahatma Gandhi once said, "The true measure of any society can be found in how it treats its most vulnerable members." If this is true, we have failed miserably to protect our citizens with the most needs.
Let this be a call to action. The authors urge readers to contact your congressperson and representative to support the HEADs UP Act to designate people with IDD a medically underserved population. Tweet for HEADs UP with #NODESIGNATIONISDISCRIMINATION. The time to act is now!
About the Authors
Barbie Vartanian
Director, Oral Health Advocacy and Policy Initiatives, New York University College of Dentistry, New York, New York
Steve Perlman, DDS, MScD, DHL (Hon)
President, People Advocating for Optimal Health (PAOH)
Rick Rader, MD, DHL (Hon)
Director, Habilitation Center, Orange Grove Center, Chattanooga, Tennessee; Fellow, American Association on Intellectual and Developmental Disabilities; Fellow, American Academy of Developmental Medicine
Vanessa Rastovic, Esq.
Disability Health Policy Director, Achieva, Pittsburgh, Pennsylvania
Matt Holder, MD, MBA
Chief Executive Officer and Founder, Kramer Davis Health, Hermitage, Tennessee; Fellow, American Academy of Developmental Medicine