When we entered the field of intellectual and developmental disabilities (IDD) we knew nothing about it. No school had prepared us for it. Life, in general, had not prepared us for it. We knew that this was where we wanted to make a difference, but had no idea how that was going to happen. There was no specialty in it. Decades ago, there was no one to show you the path because it didn’t even exist yet. There were amazing mentors, friends, and colleagues who opened the doors that they could, and who invited us to stand with them and bang on the doors they couldn’t.

Just a few decades ago, the US was just admitting to itself that there was an issue with the quality of healthcare that people with IDD were receiving in the community. The Surgeon General identified two barriers that really seemed to stand in the way of better health outcomes: 1) healthcare provider knowledge and 2) healthcare provider reimbursement. Of course, there were other issues such as discrimination, but those two pervasive systemic issues stood out to both of us.

In 2002, we set out to be part of the solution. If we could teach clinicians to provide better care, and if we could develop a sustainable and reproducible model for providing that care, we could forever change the community-based system of care for people with IDD.

The first step we took, was to try to impact the ability of clinicians to learn about people with IDD. We formed the American Academy of Developmental Medicine and Dentistry (aadmd.org) with some of the brightest minds in the field. We formed an alliance with Special Olympics (specialolympics.org), We would eventually train hundreds of thousands of physicians, dentists, and other healthcare providers from all around the world. We changed the curriculum in medical schools, dental schools, nurse practitioner schools, and medical residency programs. Eventually, we would even form medical and dental specialties in the care of adults with IDD.

While there is still so much work to be done, we are in a significantly better place than we were 20 years ago. It is so heartening to see an entire generation of young professionals not only wanting to learn more about IDD but wanting to dedicate their professional careers to it.

This is where sustainable modeling is so important for the future. If our students, residents, and young professionals cannot find a place to work, because the system of care is so broken, if they cannot earn a living dedicating their careers to people with IDD, then they will quickly forget everything we taught them – and nothing will change. It should not require a vow of poverty to start a career in Developmental Medicine or Dentistry.

Clearly, for Americans with IDD, especially adults, the disparities in access to quality healthcare have reached crisis proportions. For the public and private insurers who must bear the burden of paying for their health services, the poor outcomes associated with these disparities in healthcare access have profoundly inflated the cost of treating this patient population. Patti Killingsworth, Chief of Long-Term Services and Supports in Tennessee, estimates that in her state alone, individuals with IDD comprise roughly 3% of Medicaid subscribers but drive approximately 50% of program costs.

In 2005, we launched the predecessor to our Kramer Davis Clinic with what would eventually become the Lee Specialty Clinic (leespecialtyclinic.com) in Louisville, KY. This experience allowed us to prove that interdisciplinary care focused exclusively on people with IDD could produce better patient experiences and better health outcomes. Truly interdisciplinary care is an amazing thing to behold.

When your psychiatrist understands that an ear infection can lead to behavioral changes that don’t need to be treated with psychiatric medications, and your primary care physician understands that the medication they are thinking about prescribing causes oral health changes that may predispose somebody to develop painful cavities, and when your dentist understands that certain patterns of tooth damage are indicative of a long-standing medical problem that can contribute to aspiration pneumonia risk, you are starting to see the value of interdisciplinary care and how exponentially important it is to vulnerable patients who have difficulty navigating the traditional healthcare system.

As our model of care evolved, we saw practitioners from each of the 16 healthcare disciplines that we had at the clinic learn how to practice in ways that were never discussed during their formal training – and the results were clearly better. What we built in that model was extraordinary, but it didn’t come about because we knew how to do it all on our own. We borrowed heavily from the national and international experts we knew who were making their own clinical innovations.

One of the first things that my mentors showed me how to do was to listen and advocate for our patients – to be patient, inquisitive, person-centered, and never to accept the status quo. But above all else, they taught us that our patients are our greatest teachers. For us, two of those patients were Trey Kramer and Terrence Davis. Trey and Terrance, both non-verbal young men, taught us about strength, about resilience, and about hope. They taught us that it is never too late to learn new things. They taught us that what works is not always what is found in the medical textbooks. For these reasons and so many more, in order to honor our teachers, our future clinics will bear their names.

Kramer Davis Health is the next step in the evolution of wellness for people with IDD. Over the coming years, Kramer Davis Health will be developing and sharing innovations in data-driven, interdisciplinary clinical practice. We are currently building the data infrastructure to work in tandem with technological innovations in machine learning and artificial intelligence. We will be tracking, meticulously, the impact of our model of care not just for the patient, but on the healthcare system in general. In so doing, we will provide efficiencies and decision-making support that will free up clinicians to do more of what they want to do – spend time helping people with IDD live better lives through better health.