VOICE OF THE UNDERSERVED: (Opposite page, left to right) Special Olympics representatives Dustin Plunkett and Meredith Ciaccia, CEO of the Lee Specialty Clinic Dr. Mathew Holder, and Amged Soliman from the National Council on Disability.
BY MATTHEW HOLDER, MD
Dr. Mathew Holder, CEO of the Lee Specialty Clinic, Board Member of the American Academy of Developmental Medicine and Dentistry (AADMD) and Member of the Editorial Advisory Board of Exceptional Parent magazine, recently spoke at a policy briefing at the U.S. Capitol on the need to pass federal legislation that designates people with intellectual and developmental disabilities (I/DD) as a "medically underserved population."
Hosted by ANCOR ( ancor.org), a national nonprofit trade association representing community providers supporting individuals with intellectual and developmental disabilities, the briefing was moderated by ANCOR's Director of Legislative Affairs, Sarah Meek. During the briefing, panelists explored the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act of 2018 (HEADs UP Act, H.R. 6611). The HEADs UP Act was introduced by U.S. Representatives Seth Moulton (D-MA) and Gregg Harper (R-MS) to amend the Public Health Service Act and designate people with I/DD as a medically underserved population, thereby opening up federal grants and funding incentives to promote greater accessibility to health and dental care for this population. The bipartisan legislation is also supported by Representatives Carolyn Bosher Maloney (D-NY), Brian Fitzpatrick (R-PA), André Carson (D-IN) and José Serrano (D-NY). Additional presenters were Amged Soliman from the National Council on Disability and Meredith Ciaccia and Dustin Plunkett from the Special Olympics.
My name is Dr. Matthew Holder. I am what some might consider an expert in the field of Developmental Medicine. Developmental Medicine is the medical specialty concerned with treating people with intellectual and developmental disabilities, or IDD, across the lifespan.
When we talk about people with IDD, we are talking about people with intellectual disability, people with Down syndrome, fragile X syndrome, fetal alcohol syndrome, cerebral palsy and autism.
We are, in fact, talking about millions of Americans who have more than a thousand different, rare neurodevelopmental disorders - some of which are so rare that when doctors encounter them, it will be the only case of that syndrome the doctor will encounter in their entire career.
These people live in every state and in every community. They live in every socioeconomic stratum, though nearly 1/3 live in poverty and over 2/3 are on Medicaid.
For most of the history of medicine this Most doctors have never been trained to care for this patient During the briefing at the U.S. Capitol, panelists explored the Healthcare Extension and population was considered to be a pediatric population. Just a few generations ago, the average life expectancy for somebody with IDD was only 20 years of age. But, over the past few generations, a profound demographic shift occurred that has caught the medical world off guard. They live longer. Now, the average life expectancy for somebody with IDD is over 60 years of age. For the first time in human history, there are more adults alive with IDD than children with IDD – but our healthcare system has not kept pace.
From a medical standpoint, these individuals tend to be highly medically complex. They are significantly more likely to have seizure disorders, psychiatric disturbances, behavioral disorders, movement disorders, sensory deficits, and communication difficulties. And in fact, many of the patients at my clinic have all of the above.
Most doctors have never been trained to care for this patient population. The Surgeon General noted this in his 2002 report when he discussed the health disparities experienced by people with IDD. A survey done a few years ago revealed that the vast majority of medical students and residents receive zero training with regard to this population.
So far, in my 16 years in this field, I have accomplished a lot. I have helped to build a national academic organization of near ly 3000 likeminded professionals whose common mission is to improve the quality of healthcare for children and adults with IDD, because up until that point, one did not exist in the US.
I have spearheaded the development of the first nationally-vetted, IDD-focused curriculum for medical students, medical residents and practicing physicians, because up until that point, one did not exist in the US.
I have trained thousands of medical students, residents and practicing physicians how better to care for patients with IDD. I am frequently brought in as an outside expert to teach this subject because the in-house expertise at these schools does not exist.
I have helped to create a unique clinic model in Kentucky specifically designed to meet the health needs of people with intellec tual and developmental disabilities. We created this model, because up until that point none existed.
To my knowledge, this clinic model which was featured on the front page of the New York Times in 2014, has not been fully replicated yet in any state. Though, that hasn't stopped representatives from over 20 states from visiting my clinic and inquiring how they might replicate it. They want to replicate it, because in their state, nothing like it exists.
My clinic serves patients with IDD from nearly half of the counties in Kentucky. We have a waiting list that is hundreds of patients long. Some families drive up to five hours each direction on a regular basis to get services, not because they can't find a dentist's office or a physician's office nearby, but because they can't find one nearby that will take them as a patient. Sadly, this is true across the United States, which is probably why we have received dozens of inquiries from parents as far away as Miami, Boston and Los Angeles, wondering if we would take their adult children with IDD on as patients.
I hope you were paying attention just now as I rattled off just some of the projects I have been involved with. Because I listed the reason why each had to be done. That reason was "because it didn't exist before." "Because it didn't exist before." That phrase alone should tell you all you need to know about how poorly prepared we are to meet the health needs of people with IDD. Those things don't exist, because there are too few physicians focusing on this population. The curriculum doesn't exist in medical schools because there are too few people who can teach doctors about this Dentistry, the American Academy of Physical Medicine and Rehabilitation, the American College of Physicians and the American Public Health Association, among many other organizations, have all passed resolutions in recent years stating that this population should be designated as a Medically Underserved Population. Being underserved comes with a cost. People with IDD are served poorly, inefficiently and expensively. The only way for population. The clinics don't exist because there are too few systems trying to solve the challenges of delivering quality healthcare to people with IDD. So, if we don't have clinics to see the patients, and we don't have schools to teach the doctors, and we don't have the doctors to deliver the care, then how can we possibly believe that the health needs of people with IDD are being met? Let me emphatically state, they are not.
For much of the history of this country, people with IDD have been invisible. They have been excluded from society, hidden away from neighbors and friends, abandoned and forgotten in institutions. They have been so invisible and ignored that that it has taken us over 40 years to even ask this very basic questions about one of the most medically complex populations that exist - "are they medically underserved?"
But today we are asking the question. And it is not just us sitting in this room asking the question. The American Medical Association, Association, the American Dental the American Physical Therapy Association, the American Academy of Developmental Medicine and Dentistry, the American Academy of Physical Medicine and Rehabilitation, the American College of Physicians and the American Public Health Association, among many other organizations, have all passed resolutions in recent years stating that this population should be designated as a Medically Underserved Population.
Being underserved comes with a cost. Seeing that human cost is at times unbearable. I could tell you hours of stories of patients who were frankly discriminated against, who were turned away from practice after practice just because they had IDD, who were misdiagnosed so badly that they ended up in a hospice service with medical orders to withhold food, water and treatment, until death, when it turned out that the only thing they had was a urinary tract infection that no doctor looked for.
But aside from the human cost, there is a very real dollar cost. And if our appeal to your heart doesn't work today, then please let me appeal to your wallet. According to the CDC, people with IDD comprised 4.9% of the Medicaid population, but they account for 15.7% of Medicaid expenditures. That means we are currently spending 3 times more on a person with IDD compared to a person without. My consulting work in the private insurance industry tells me that this number could be as high as 5 times. And while we should always expect this number to be higher than the general population, there is clearly a lot of room to save money through better informed and more efficient care. After all, that is the premise upon which my clinic was founded.
When doctors don't know what to do, they make mistakes. They order tests that aren't needed, they prescribe drugs that aren't indicated, and they come up with diagnoses that simply aren't there. These mistakes are expensive. But who will catch all of these mistakes? The errant doctor who had zero training in caring for this population? Or maybe the next doctor, who also has had zero training? And now you see the fix that we are in.
The bottom line is that people with IDD are underserved. But, when they are served, they are served poorly, inefficiently and expensively. The only way for us, as a nation, to begin to address this issue is to take the first step and acknowledge it.
When I started in this field 16 years ago, I was determined to make my career work. Despite having a medical degree and a master's degree in business, I spent three years living below the poverty line trying to figure out how I was going to provide care to people with IDD. There were no clinics in my state that did this work and there were no schools or residency programs that could teach me how, and of course, my application for a federally-sponsored research program focusing on health disparities populations was summarily rejected because the federal government doesn't consider people with IDD to be medically underserved. I almost gave up, but I knew that there were thousands of people out there with IDD who needed my help.
Now, every year, I am contacted by medical students who want to get into this field. They want to do what I do. But, those barriers that nearly stopped me years ago still exist, and they continue to drive doctors away from patients who need them the most. Acknowledging that people with IDD are a medically underserved population can help change that. Thank you.•
Editor's Note: There is a bill pending that addresses the Medically Underserved Population (MUP) proposal. It was released by Congressmen Moulton and Harper. The Bill is known as the Healthcare Extensions and Accessibility for Developmentally disabled and Underserved Population Act or HEADS UP Act of 2018. For further information about the Bill go to: aadmd.org/sites/default/files/MOULTO_081.pdf
ABOUT THE AUTHOR: Matthew Holder, MD, MBA, in addition to his work as Global Medical Advisor for the Special Olympics, is CEO of Lee Specialty Clinic, which was featured in the New York Times. Dr. Holder is past President of the American Academy of Developmental Medicine and Dentistry,VicePresident, Council on Developmental Disabilities and immediate Past President, Special Olympics Kentucky.