Adults with intellectual and developmental disabilities (IDD) have long been a marginalized and medically underserved patient population. In February 2002, Surgeon General David Satcher published a landmark report entitled, Closing the Gap: A National Blueprint to Improve the Health of People with [Intellectual Disabilities], which detailed the pervasiveness of this problem.

In the preamble to that report, then Secretary of Health and Human Services Tommy Thompson said, “Americans with [intellectual disabilities] face enormous obstacles in seeking the kind of basic health care that you and I take for granted.”

The obstacles which Secretary Thompson referred to almost two decades ago still exist today. Indeed, the problems facing this patient population are legion. First, the intellectual disability Itself may significantly impair the patient’s ability to describe the physical complaint or symptoms that in the neurotypical patient would typically result in an examination by either a primary care physician or another healthcare provider.

Additionally, the intellectually disabled patient’s complex medical history often requires that a single patient be treated at various locations by multiple clinicians and specialists, who may or may not effectively communicate with one another. It is also important to note that cognitive and neuromotor impairment can significantly inhibit a patient’s ability to comply with prescribed treatments.

Patients with IDD also frequently present with challenging and sometimes disruptive behavior, often creating problems in the waiting rooms of healthcare clinicians, discouraging many from admitting these patients to their practices.

Indeed, the inability to articulate pain or discomfort caused by a health problem may drive a patient with IDD to engage in self-injurious behavior or aggressive action that may endanger family members, residential care providers, or attending clinicians – behavior that is often inappropriately treated with psychotropic medications that address only the maladaptive behavior, rather than the medical or dental disorder driving it.

Finally, our nation’s medical and dental schools lack a professional curriculum focused on the care of patients with IDD. This, along with the dearth of relevant scientific literature, tends to decrease the clinical confidence of newly graduated primary care clinicians who might have contemplated treating this patient population, but who feel inadequately trained to do so.

Finally, medical and dental professionals frequently presume that IDD care involves an increased risk of medical malpractice litigation because of the medical complexity of the patient population in general.

These myriad problems have converged to create an environment that has driven medical and dental professionals away from these patients, threatening the health and well-being of a significant segment of this population. Indeed, anecdotal information and evidence-based research suggest that individuals with IDD, overall, suffer an increased incidence of multiple adverse health outcomes and conditions when compared to the general, neurotypical population.

The scientific literature is replete with examples of these adverse health outcomes, which include: an increased incidence of death due to aspiration pneumonia, bowel obstruction and polypharmacy (overuse of medication); an increased incidence of low bone mineral density and bone fracture; an increased incidence of moderate to advanced periodontal disease, edentulism (the condition of being toothless) and undiagnosed, potentially painful dental lesions; an increased incidence of undiagnosed gastroesophageal reflux disease (GERD), and an increased, and often inappropriate, use of psychotropic medications.

Former Surgeon General David Satcher is not alone in identifying the problems faced by this patient population. The disparities in access to quality healthcare services, and the attendant negative health outcomes experienced by Americans with IDD have not gone unnoticed by national professional organizations.

The American Medical Association, the American Dental Association, the American College of Physicians, the American Academy of Developmental Medicine and Dentistry and the American Physical Therapy Association have all recently passed resolutions designating Americans with IDD as a medically underserved population.

These disparities in access to quality healthcare services have developed, in large part, due to a paucity in our nation’s medical and dental schools of educational material focused on the care of IDD patients. A CDC-funded study conducted by the AADMD concluded that 81% of physicians and at least 50% of dentists graduate from professional school having never treated a single patient with IDD.

As a result, very few providers are sufficiently competent or confident in their ability to care for this patient population. This situation manifests as either a complete lack of willingness to treat individuals with IDD (poor motivation ) or an unfortunate but predictable cycle of misdiagnosis, mismanagement, polypharmacy, and high-cost utilization (poor quality).

Further complicating the landscape for this patient population is the fact that, over the last several decades, as individuals with IDD have been transitioned in significant numbers out of larger institutions and into smaller, community-based residential settings (a process known as community integration), the systems of community supports, which were created to ease this transition, have often proven to be disorganized and ineffectual.

Perhaps nowhere are the statistics more sobering than in the analysis of mortality rates among medically complex adolescents with IDD who age out of pediatric intermediate care facilities (ICFs) and are transitioned, as adults, into community-based adult residential facilities. The former CEO of a pediatric convalescent center in a midwestern state recently reported that one in four young adults with IDD dies within two years of transitioning out of a pediatric ICF into an adult facility.

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.

No individual with IDD can be expected to fully enjoy a meaningful life in the community unless they are also able to enjoy optimum health. If the goals of community integration are to be truly actualized for this population, an imperative clearly exists for making access to basic healthcare services a foundational part of that reality.

The first step in establishing access to quality healthcare services for patients with IDD is to create a central place for them to go to receive those services; a place in the community; a place where the doctors and therapists who attend to their care understand the unique challenges they face in their daily lives, and are adequately trained to help them meet those challenges; a place where they feel welcomed as the important and valuable citizens that they are.