Underserved & Unrecognized: Understanding the IDD Healthcare Disparity Through Legislation
by Vanessa Rastovic, Esq., J.D., Rick Rader, MD. FAAIDD, FAADM, Steve Perlman, DDS, MScD, DHL (Hon), Matt Holder, MD, M.B.A., FAADM, Barbie Vartanian, B.A.
Photo Credit: Rick Guidotti for Positive Exposure
Public Service announcement for a free copy of "Smoking and Illness" brochure. Photo: University of Houston Libraries Special Collections
Over five decades ago, there were several milestones in American medical care and public health. In 1966 tobacco companies were required to print the words "Caution: Cigarette smoking may be hazardous to your health" on cigarette packaging. There was an epidemic of thyroid disease in children reported in St. George, Utah, located downwind from a Nevada nuclear test site. An innovative stapling device that rapidly closes incisions during surgery was introduced, and the Medicare health insurance plan for Americans over sixty-five years old was instituted.
But perhaps the most significant and powerful public health outcry were the remarks made at the annual meeting in Chicago of the Medical Committee for Human Rights held 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 inhuman."
Sadly, little has been done since then to address the healthcare disparities experienced by one of the most vulnerable and marginalized populations: children and adults with intellectual and developmental disabilities (I/DD).
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, yet little has been achieved. We often have to require, mandate, and legislate conduct, behavior and action to protect, support, and ensure health equity.
Dr. Martin Luther King Jr. in front of Friendship Baptist Church in Marquette Park, August 5, 1966. Photo: Chicago Tribune archives
People experiencing disabilities must live in and navigate, to the utmost of their abilities and resources, a world that has been, at best, not created to include them and, at worst, directly and indirectly designed to exclude them. They are used to the common belief that their disabilities, or “defects” as often referred to in healthcare settings, are a negative result of their own or, perhaps, their families’ failings. Some people without disabilities regard them with skepticism, believing that their disabilities are a punishment for some unknown, unseen, but apparent misdeeds, failures, or laziness. And the more their identities intersect with other racialized or marginalized groups, the stronger the negative impacts. However, most of them, as well as family members and friends, do not view disabilities as burdens or afflictions. Certainly, they are not defective. They’re different, and that’s all.
People with disabilities are the largest minority population in the US. Still, they are invisible in data because disability is considered a negative medical outcome—not a demographic data point like gender or race.
Discrimination in essential settings like employment can cause fear and anxiety over self-disclosing one’s disability status if not immediately perceivable. If they get counted at all, these and other factors often lead to undercounting.
They also still experience economic, environmental, and social exclusion through government-sanctioned subminimum wages; unjust and excessive incarceration; lack of affordable, accessible housing and green or recreational spaces; employment and wage gaps; food insecurity; unrealistic and antiquated resource limits for means-tested public benefits programs like SSI; and catastrophic underfunding of critical programs like IDEA and Home and Community-Based Services. Exclusionary policies, regulations, and laws like these cause avoidable health disparities that increase healthcare costs. People with disabilities pay consistently higher out-of-pocket costs for care. They must compete for fewer and fewer healthcare providers, especially providers participating in public insurance, like Medicaid. These dynamics lead to long waiting lists for appointments and force many people with disabilities to get their care in the only place they can, often the Emergency Department.
There is a better way.
In 2004, when Dr. Matt Holder applied for a “health disparities research” loan repayment program through the Office of Minority Health and Health Disparities, the office informed him that he had been 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 and detailed all the disparities, they told him that in order to qualify as a health disparities population, the ID population would have to be designated as a Medically Underserved Population by the Health Resources & Services Administration (HRSA)—and they were not.
Sadly, about a decade later, another AADMD member applied for a similar grant through a different office and was told the same thing. Unfortunately, what initially looked like a win-win situation wasn’t that simple.
HRSA is responsible for directing healthcare funding to medically underserved populations (MUP). To do this, HRSA developed a formula called the Index of Medical Underservice, or IMU, to determine which sub-populations could qualify. It was supposed to send healthcare funding directly to the people and places that needed it most, and in some ways, it did. However, HRSA unilaterally imposed an additional restriction. A MUP had to comprise more than 30% of the general population of an area to qualify for the designation. The only alternative to the HRSA process was a designation mandated by the President or Congress. Approximately 7 million people, about 2 percent of the US population, are living with intellectual and developmental disabilities. Because most people with I/DD live with their families, they are dispersed throughout the general population. And because 2 percent is far less than the 30 percent concentration of an area required by HRSA, this led to the absurd possibility that people with I/DD living in institutions could qualify for MUP status, but people with ID/DD living in their communities were excluded. It also meant that other medically underserved populations that didn’t meet the concentration threshold also failed to qualify for MUP status unless they were contained in an area where they would be more than 30 percent of the population.
MUA/P scores depend on the Index of Medical Underservice (IMU) calculated for the area or population proposed for designation. Image Credit: HRSA.
As early as the 1980s, the United States Government Accountability Office (GAO) provided a report to Congress presenting its findings that the HRSA formula failed to identify and direct healthcare funding to medically underserved sub-populations and funneled healthcare dollars into areas where it was not needed. HRSA has been asked repeatedly to resolve the problems with medical underserved designations. To date, it has failed to do so.
No Designation is Discrimination
“HRSA has been asked repeatedly to resolve the problems with medical underserved designations. To date, it has failed to do so.”
Photo Credit: Rick Guidotti for Positive Exposure.
And although HRSA indicated that it had suspended the use of the formula, it appears there is no intention of revisiting the problem—leaving many underserved sub-populations without any remedy. During the pandemic, this failure likely negatively impacted the survival rates of people with I/DD—identified in a FAIR Health study as most likely to contract and die from COVID-19. Health equity and other advocates have a name for this conscious neglect of marginalized populations, “slow violence.”
Several of the authors of this paper have had an arduous journey with the MUP quandary. When Dr. Holder brought this problem to the attention of the American Academy of Developmental Medicine and Dentistry (AADMD), AADMD immediately formed partnerships to bring attention to this injustice and find a remedy.
To this day — some 20 years later — the AADMD and its partner organizations like the American Association for Health and Disability; the Medicaid, Medicare, CHIP Services Dental Association; Achieva’s Disability Healthcare Initiative; Project Accessible Oral Health; Special Olympics; The Arc of the United States; the National Down Syndrome Society; the National Down Syndrome Congress; Families USA; the Oral Health Progress and Equity Network (OPEN); the Pennsylvania Coalition for Oral Health; the CareQuest Institute for Oral Health; and many other health and disability organizations are still working to fix this problem, which denies and discriminates against this and other marginalized and invisible populations and has created additional barriers to health equality for people living with I/DD.
Early in 2005, the AADMD accepted an invitation to present to the President’s Committee on Intellectual Disabilities, which later supported MUP status in their subsequent report to President George W. Bush.
And we waited.
Later that year, the AADMD met with Senator Ted Kennedy’s staff, who promised to work on MUP status.
And we waited.
In June 2005, we met with the Secretary of Health and Human Services, Mike Levitt, who promised to work with HRSA’s office for designations to resolve the problem.
And we waited.
In 2006, the HRSA Committee on Primary Care Medicine and Dentistry recommended that people with ID be approved for MUP status.
In 2010, at the Special Olympics U.S.A. National Games Health Symposium, Senator Tom Harken recognized this injustice and promised to do everything he could to remedy it.
In 2011, the American Medical Association passed Resolution 805-i-10, which urged the federal government to designate people with intellectual disabilities as a Medically Underserved Population.
In 2014, the American Dental Association followed suit, urging the federal government to act and finally make the designation. The American College of Physicians, the American Public Health Association, and other prominent health-related professional organizations support the designation and have urged action.
Also in 2014, Dr. Barbara Kornblau published her policy brief, “The Case for Designating People with Intellectual and Developmental Disabilities as a Medically Underserved Population”, through the Autistic Self-Advocacy Network (ASAN). Dr. Kornblau’s policy brief combined all the pieces to create a national and state-level designations roadmap.
Despite all the evidence of health disparities and injustice; despite the fact that people with I/DD would qualify under HRSA’s formula — except for its unilateral imposition of a segregational geographical requirement; despite a pandemic rife with reports of discriminatory healthcare rationing, ADA (Americans with Disability Act) violations in healthcare settings, and indisputable proof that people with I/DD suffered and perished unnecessarily—we are still waiting.
After 20 years of advocacy and education of elected officials and administrators, let us be clear — we will never give up and never go away.
The moral injury heaped upon those experiencing and watching these grave health injustices is too deep, and patience with HRSA’s inaction is ending.
However, someone still cares.
Because HRSA and past Presidents failed to act, Congress must. The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act was reintroduced in June of 2023 by Representatives Seth Moulton, Brian Fitzpatrick, Debbie Dingell, and Joe Morelle in the US House of Representatives.
Congressional Support: Representatives Seth Moulton (D-MA), Brian Fitzpatrick (R-PA), Debbie Dingell (D-MI), and Joe Morelle (D-NY) reintroduced HEADs UP in June 2023.
If passed, the HEADs UP Act would designate people with intellectual and developmental disabilities as a Special Medically Underserved Population, or SMUP.
An SMUP is a designation under the Public Health Services Act that increases access to federal funding to improve health and healthcare access for medically underserved populations-like people with disabilities. The SMUP designation unlocks additional funding for health services and research. Thirty federal agencies use the SMUP designation to distribute healthcare funding for primary care services, recruitment and training for healthcare professionals, and research.
Currently, there are three designated SMUPs: public housing residents, migrant agricultural workers, and unhoused people. Although some people with disabilities already fall into one or more of these categories, many do not, despite facing the same health disparities. Congressman Moulton (D-MA) noted, “Citizens with intellectual and developmental disabilities deserve quality treatment just like everyone else, and America has an obligation to provide that. We’ve come so far, but there is still more ground to cover. With this bill, we can expand healthcare resources to make them more available to these Americans.”
Health equity for people with I/DD is a bipartisan issue with bipartisan support.
The Co-Chairs of the House of Representatives Bipartisan Disabilities Caucus, Brian Fitzpatrick (R-PA) and Debbie Dingell (D-MI), are both co-leads of the HEADs UP Act.
“Over 7 million people in the United States have an intellectual or developmental disability, and they are often met with hardship when it comes to meeting their complex medical needs,” said Congressman Fitzpatrick. “The bipartisan Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act will remove barriers to care that exist for the millions of Americans within the I/DD community so that they can lead healthy lives.”
Why Advocate?
“Over 7 million people in the United States have an intellectual or developmental disability, and they are often met with hardship when it comes to meeting their complex medical needs,” said Congressman Fitzpatrick.
Photo Credit: Rick Guidotti for Positive Exposure.
Thanks to self-advocates, family members, allies in healthcare and disability advocacy, Congressional champions, and our communities who refuse to give up and have been taking action, more people are learning about health disparities affecting people with disabilities and what we can do about it.
Here are three easy things you can do today to make access to health fairer for people with disabilities:
Count them in! Whenever and wherever you can, let government and other officials and administrators know that disability should be counted, like gender, race, or language. Also, Diversity, Equity, and Inclusion policies can and often do include Accessibility (DEIA). Accessibility is essential to universal inclusion, and most employers and organizations with DEI policies are open to suggestions about how they can improve.
Communicate to national, state, and local elected officials that people with disabilities are a Medically Underserved Population (MUP) by sharing your stories and experiences with difficulties maintaining good health and accessing adequate healthcare. If your Congressional Representative is already a HEADs UP Act cosponsor, please thank them for their support and advocacy. When more healthcare providers are available, accessible, and better trained about disability and culturally appropriate interaction, every person with a disability wins.
Take up your space! Every person experiencing a disability or difference is part of a dazzling constellation of experiences and perspectives. They add value to the world that no one else can. Everyone has a right to advocate for the fair and accurate representation of people with disabilities and their equal opportunity to participate in our communities through education, employment, and healthcare.
