Three letters. Two decades. One goal.
The AADMD and the fight for MUP designation
Photo Credit: Kramer Davis Health, Nashville, TN
By Rick Rader, MD, FAAIDD; Steve Perlman, DDS, MScD; Matt Holder, MD, MBA
As a result of the recent action by the National Institutes of Health (NIH) to reverse their decision to designate people with disabilities as a population with health disparities, we felt it was appropriate to provide a historical narrative of the AADMD’s long-term pursuit in having the NIH and other Federal health agencies designate people with intellectual and developmental disabilities as being a Medically Underserved Population (MUP).
What follows is the recollection of AADMD leaders with documents, records, and notes to provide a high level of authenticity to the narrative. From the outset we do not claim that this will describe every encounter, meeting, petition, or testimony that was met in the pursuit; but our goal is to provide an overview of what many of us have been personally and professionally involved with for over twenty years.
Former US Surgeon General David Satcher, MD, PhD - Photo courtesy of Kennedy-Satcher Center for Mental Health Equity, Morehouse School of Medicine.
The chronology of the movement towards MUP Designation has its genesis in the 2002 Surgeon General Report, “Closing the Gap-The Healthcare Needs of People with Mental Retardation.” In the 150-year history of the Office of the US Surgeon General, this was the first exhaustive study of healthcare disparities experienced by this population. Surgeon General Dr. David Satcher invited healthcare professionals, advocates, educators, and researchers to examine the root causes of these disparities and to make recommendations to address them. Most of the invitees were not acquainted with each other since most were lone wolves working in their own silos without a known unifying organization or specialty.
At the time there were no associations, teaching centers, curriculum or guidelines addressing the healthcare concerns of adults with intellectual and developmental disabilities. The report identifies and acknowledges the vast disparities and makes recommendations to address and reduce them.
Dr. Satcher’s parting remarks to this group were formidable. While he complimented the work and was proud of the final report he said, “I want to thank everyone for this yeoman’s work, but if you don’t give legs to this report, it will languish in the bowels of the US government printing office.”
“Surgeon General Dr. David Satcher invited healthcare professionals, advocates, educators, and researchers to examine the root causes of these disparities and to make recommendations to address them.”
There was a small contingent of physicians and dentists in attendance and over the course of several days, relationships were fostered. This led to ongoing conversations, meetings and eventually commitments to give the report some legs. With the informality that these disrupters enjoyed, the decision to establish the American Academy of Developmental Medicine and Dentistry was green lighted. It was the first bicameral organization where dentists and physicians were equal, mutually respected, and engaged. The equality was reflected in the decision that the president would alternate between a physician and a dentist. One of the reasons that dentists were recognized as a vital and indispensable spoke in the wheel was the realization that oral health was the number one unmet healthcare needs of people with intellectual and developmental disabilities (ID/DD).
“It was the first bicameral organization where dentists and physicians were equal, mutually respected, and engaged. The equality was reflected in the decision that the president would alternate between a physician and a dentist.”
There were several reasons why the needs for the AADMD were undisputed. Technology in neonatal medicine has seen the survival of newborns with birth defects that did not previously survive. Many of them had complex disabilities. The “Institution Model” was being carefully examined and many states repatriated the individuals back to their communities.The “Medical Model” was at war with the “Social Model” and that required health and wellness to be the vehicle for patients to achieve optimal community opportunities. As the population saw an increase in longevity it became imperative that pediatricians transition care over to adult primary care doctors. The oral systemic link was gaining more recognition and prominence, and the role of optimal oral healthcare was becoming evident.
The AADMD did not grow by leaps and bounds, it remained a small nimble group devoid of the burdensome bureaucracy of large organizations. They were able to act, change courses, respond to situations, and move mountains at a fast clip. The early years of its unbridled development allowed the AADMD to discard Robert’s Rule of Order and turn on a dime.
Matthew Holder, MD, MBA, Courtesy of Kramer Davis Health
A pivotal point for the AADMD came when Dr. Matthew Holder, a newly trained family medicine physician, approached the AADMD to see if his budding interest in ID/DD could be cultivated and brewed. Perhaps, it was his MBA that contributed to his interest in big-picture medicine. While an accomplished clinician, Dr. Holder wanted his medical career to be about being a pioneer, a developer, and yes, an instigator. The embryonic field of developmental medicine could be his ticket to fulfillment.
Saddled with large student loan debt, Dr. Holder was encouraged to apply for student loan forgiveness since the ID/DD population was presumably recognized as a medically underserved population, as years of research input had demonstrated. Thus, we presumed he qualified for loan reductions. The members of the AADMD took pride in welcoming the young Turk to the group.
Not only was Dr. Holder surprised, but all the members of the AADMD were in shock to learn that individuals with ID/DD were not recognized as being a medically underserved population despite overwhelming evidence. There was a resounding “How could that be?” For years, every report issued by government health groups such as the CDC, NIH, the IOM, and Public Health reported and declared that people with ID/DD were not receiving adequate medical care. They were being neglected, short-changed, and in fact disregarded by mainstream medicine. Their numerous medical conditions and shortened life span were attributed to it. What accounted for this disagreement in the research is the non-recognition of the “designation” by the federal government.
HRSA rejection
The Heath Resources Services Administration, aka HRSA, was the responsible Federal health policy department that created the eligibility formula for groups to be declared as Medically Underserved Population or MUP. They identified several domains (examples: including number of individuals belonging to the population, economic status, morbidity, and mortality) and assigned numerical values to each domain. The aggregate score determined eligibility. The AADMD applied the statistics to the formula and were relieved to demonstrate that by HRSA’s own formula, people with intellectual and developmental disabilities should have easily been granted the MUP status. HRSA disagreed, despite the application of their own criteria, and people with ID/DD were not recognized as being eligible to be considered MUP.
When faced with the threat of legal and Congressional action against HRSA, they opted to discontinue the use of the formula and announced a new, revised formula would be forthcoming. HRSA announced that the formula to determine eligibility for designation as a MUP (that they established) would be terminated and curtailed. They would identify and release a new formula that would be published in the Federal Register. We anxiously waited for the opportunity to review it and apply it to our population. We are still waiting. HRSA never formulated a new criterion and thus no disparate population could be considered eligible for MUP designation. The door was effectively shut.
State by state
Desmond Tutu wisely once said “there is only one way to eat an elephant–a bite at a time.” While the AADMD was being stonewalled, blocked, and thwarted in their attempt to get national MUP designation, it came to our realization that we might have to achieve this state by state. A review of prevailing laws demonstrated that states had the legal authority to grant MUP designation within each state.
We established beachheads in three states. Dr. Steve Sulkes, Professor of Pediatrics, at the University of Rochester Medical School, and a respected behavioral and developmental pediatrician led the charge in New York. Dr. Matthew Holder, the CEO of the Underwood and Lee Clinic in Louisville headed the Kentucky charge. Dr. Rick Rader, the Director of the Habilitation Center, at Orange Grove Center in Chattanooga, spearheaded the movement in Tennessee.
The AADMD disparity pirates laid out a strategy utilizing elements that adhered to both similar and unique conditions and climates for each state. The path to success required support and endorsement from the offices of primary care at the Department of Health. Despite the overwhelming amount of literature, the deleterious impact of health disparities experienced by individuals with ID/DD were presented and not disputed. None of the pilot states offered a designation proposal.
The push back and opposition came from the State Health Departments, the very group that was created to protect the health of its citizens; especially, those who suffered from inadequate care. The rationale for their opposition was the unfounded and erroneous belief that the MUP designation for people with ID/DD would result in less funds for other health department disparity populations.
While the state-by-state strategy has not been abandoned, little progress, or promise has been achieved. The elephant has remained intact.
Timing is everything
Over the years the AADMD MUP mavericks got close to achieving their goals. We had several positive signs of buy-in from influential members of Congress who had the ability to take the MUP designation across the drawbridge avoiding the moat.
It seemed that every time we approached the eleventh hour, we were informed that some unanticipated National Healthcare Emergency had precedence over the MUP issue. First it was bioterrorism. Then disaster medicine from Hurricane Katrina. Then mental health. And then the opioid crisis. While we did not dispute the importance of these issues, we found it difficult to accept that the resources of the Federal Government would not address MUP in tandem. All these emerging public health crises had an impact on people with ID/DD. So why treat them as disconnected and noncomparable?
Resolutions
To demonstrate solidarity and consensus on the qualifications of the MUP designation, the AADMD undertook enlisting the support of the nation’s most respected and influential health organizations. This was done for two reasons: firstly, to show the “single minded” ideology from many organizations and secondly, to lessen the perception that this was simply being stirred up by a solitary group, the AADMD.
The following organizations supported the MUP Designation for People with Intellectual and Developmental Disabilities:
National Council on Disability
American Physical Therapy Association
American Public Health Association
The President’s Committee for People with Intellectual Disabilities
The American College of Physicians
The American Academy of Developmental Medicine and Dentistry
American Dental Association
Developmental Disabilities Nurses Association
Harvard Law School Project on Disability
American Academy of Pediatric Dentistry
In the trenches
In or around 2006, an attempt to meet with the leaders of the Office of Minority Health (OMH) was made for the purpose of getting them to endorse a similar resolution. The meeting was conducted by Dr. Rick Rader of the AADMD Board and Dr. Steve Corbin, (former Assistant Surgeon General) and at the time, the Senior Vice President for Healthcare at Special Olympics International. The meeting was arranged through the efforts of the late Dr. Rubens Pamies (Assistant Chancellor at the University of Nebraska Medical School) who served as the President of the OMH’s Executive Committee.
Our argument was simple: people with disabilities (particularly ID/DD) experienced significant healthcare disparities. Minorities with ID/DD experienced even more disparities with worse outcomes and consequences. A vital statistic was presented that white individuals with Down Syndrome had a life span of 55 years, while African American individuals with Down Syndrome had a life span that was 50% lower, approximately 25 years. We were confident that such a reality would galvanize the OMH, and its representatives of diverse ethnic and cultural populations would initiate programs to address these issues. Much to our chagrin, our presentation and ask (to acknowledge, address, consider, devote some resources, and issue a resolution) was rejected and we were dismissed. The rationale for the rejection was the OMH’s erroneous belief that funds earmarked for their ongoing programs would be reduced if they would adopt the ID/DD MUP issue.
Dr. Pamies was very disturbed about this, and despite his efforts to have the OMH reconsider the overwhelming evidence of disparities experienced by minorities with ID/DD and join in efforts to address them, the movement did not receive the endorsement or support from the leadership. As a footnote, Dr. Pamies was an advocate and activist for medical emergency response programs in Haiti following the earthquake in 2010. He passed away while working in Haiti and the AADMD was fortunate to have considered him as a partner and supporter.
How can that be?
The Special Olympics US National Games had their inaugural start in July 2006 in Ames, Iowa, when more than 4,000 athletes converged on the Iowa State University campus for the first multi-sport national games in its history.
In conjunction with the USA Games, Special Olympics sponsored and conducted a Clinical Conference to address the growing healthcare disparities of Special Olympics athletes and people with ID/DD. The attendees were a who’s who of key opinion leaders on national health policy, programs, universities, government agencies, and foundations.
Some of the notables present were the U.S. Surgeon General, the Director of the CDC; high level leaders from the National Institute of Health, Institute of Medicine, U.S. Department of Health and Human Services, National Center for Birth Defects and Developmental Disabilities, and Health Resource and Services Agency, the President of the American Academy of Family Practice, Agency for Healthcare Research and Quality; and of course members of Congress.
Following the clinical presentations, there was a session called, “Crossing the Finish Line” featuring Senator Tom Harkin. Known as the doyen of progressive disability programs, legislation and policies supporting the growing needs of the disability community, Senator Harkin provided remarks suggesting that never in the history of the United States have we seen people with ID/DD receiving the highest degree of health care in the nation, since they were designated a Medically Underserved Population. The crowd applauded and the Senator invited questions and comments from the audience. Dr. Rader raised his hand and was handed a microphone. “Senator Harkin, with all due respect, I have to challenge your assertion that individuals with ID/DD are recognized as being designated a Medically Underserved Population. While there are countless studies that support that status, they have never officially received that designated by any branch of the United States government.
Senator Harkin turned to his aide sitting next to him and was overheard asking, “How can that be? What is he talking about?” He abruptly concluded the meeting and had his aide reach out to Dr. Rader for a meeting with Dr. Steve Perlman and other AADMD leaders. The top U.S. healthcare leaders in attendance all told Senator Harkin that they did not know about the designation so he gave the AADMD his assurance that he would investigate this further and get back to us. The AADMD was overjoyed with the connection, commitment, and opportunity to finally see justice provided after our long fight for this designation. Despite several overtures and meetings with his congressional aides nothing ever materialized to close the gap and secure the MUP designation.
Since the Ames meeting, the AADMD has met, communicated, or provided testimony to a host of top officials including every Secretary of the Department of Health and Human Services (Secretaries Leavitt, Sebelius, Burwell, Price, and Azar). To date individuals with Intellectual and Developmental Disabilities have NOT been designated as bona fide members of the Medically Underserved Population (MUP).
One of the many challenges the AADMD has faced in its journey to secure the MUP Designation was the widespread mythology and misinformation about the health status of people with intellectual and developmental disabilities. We believed the meeting in Ames, Iowa could have been a game changer, but unfortunately it was another missed opportunity.
Closing remarks
After more than 20 years, our spirits have been tested and our resolve has remained high, and we still see the significance, importance, and benefits of continuing to pursue this recognition. Stay tuned, we have always realized and appreciated that this is a marathon, not a sprint. Thankfully, a new generation of AADMD leaders have been recruited, groomed and battle-tested to see this to fruition. So, the graybeards of the AADMD can rest, content in the knowledge that others can see the need to continue to storm the castle.
On a positive note, it has been reported that the Governor of Pennsylvania has agreed to consider enacting a special MUP designation for Pennsylvanians with ID/DD.
Resources and references on MUP designation:
The Case for Designating People with Intellectual and Developmental Disabilities as a Medically Underserved Population Barbara L. Kornblau, JD, OTR, FAOTA Florida A&M University
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Would People with Intellectual and Developmental Disabilities Benefit from Being Designated “Underserved”? Lyubov Slashcheva, Rick Rader, MD, and Stephen B. Sulkes, MD
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The Medically Underserved Population (MUP)
Emily Johnson, MD
Designation of Medically Underserved Populations and Health Professional Shortage Areas
A Proposed Rule by the Health and Human Services Department on 04/21/2008 The Federal Register
The first article on the MUP battle was published in EP Magazine January 2005
Satchel Paige on Being Medically Underserved
Rick Rader, MD