Satchel Paige on Being Medically Underserved

This article was originally published in EP Magazine on May 14, 2007.

Satchel Paige, the philosopher and icon ball player, was fond of posing the question, “If no one knows how old you are, how old would you be?” And it’s one of the great philosophical questions of the ages. What impact does knowing have on something? In Satchel’s lament perhaps a great deal, but beyond knowing, what you do with that information is what counts. What if no one told you that you were medically underserved? Would that change the way you related to medical care? Would that change your expectations, outcomes, compliance and sense of personhood? This is not a hypothetical point to ponder.
In the case of citizens with developmental disabilities, this is the point. And it’s a point that requires more than pondering—it requires action. In reality that is the scenario. People with disabilities, despite the evidence, are not considered to be people who are medically underserved.

So what is the evidence? For starters we have the Surgeon General’s Report of 2002 (“Closing the Gap, Health Care Disparities for People with Mental Retardation”) exclaiming: “Compared with other populations, individuals of all ages with mental retardation experience poorer health and more difficulty in finding, getting to, and paying for appropriate health care.” While this is considered the enchilada report on health care disparities for people with developmental disabilities, others are in evidence (JAMA, 1988, Ziring, Kastner, Friedman, et al. “Provision of health care for persons with developmental disabilities living in the community: The Morristown model”). More recently an article in the Archives of Pediatric and Adolescent Medicine (Sept., 2004 “Prevalence and Characteristics of Children with Special Health Care Needs” by van Dyck, Kogan, McPherson et al.) concluded, “Children with special health care needs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.” Most recently an article, (December, 2004, Mental Retardation, “Access to Health Care for Individuals with Developmental Disabilities from Minority Backgrounds,” Reichard, Sacco and Turnbull) opens with “The literature documents that people with developmental disabilities experience greater difficulty in securing appropriate and affordable health care than do individuals without disabilities.” And when all else fails we also have me (Rick Rader, MD). As EP’s editor I interface with thousands of parents each year and although it is totally anecdotal, it is overwhelmingly revealing. Their kids (across the life span) experience a patch quilt form of health care. Sure there are many examples of “cultivated care” (Rader expression coined moments ago) in which the health care is delivered in a comprehensive, coordinated, caring, culturally competent and continuous fashion. Great strides have been made through the medical home, case management, physician and dentist training, preventive measures, an expanded knowledge base of secondary conditions and medical advocacy. But it hasn’t been enough and one potential (and critical) impediment is the non-declaration of this population as being medically underserved.

“The Task Force on Health care Disparities of the American Academy of Developmental Medicine and Dentistry is working to have citizens with developmental disabilities appropriately recognized as a medically underserved segment of our society.”

In the 750-page report issued by the Institute of Medicine (2003, “Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care”) entitled “Unequal Treatment - Confronting Racial and Ethnic Disparities in Health Care” there is not a single mention of “disabilities” in any form or context. Despite the fact that African-Americans with Down syndrome have a life expectancy of half that of white individuals (with the same syndrome) this was not cited. Their first finding can serve as both the executive summary of this report as well as the modus of this article: Racial and ethnic disparities in health care exist and, because they are associated with worse outcomes in many cases, are unacceptable.

We simply have to extrapolate the population segments where evidence exists declaring them to be medically underserved and extend that moniker to individuals with developmental disabilities. But this is not about expanding the subset of citizens who belong to specific racial and ethnic subgroups to another group of those individuals who also have developmental disabilities. This is about recognizing all citizens with developmental disabilities as being both medically disparate and medically underserved regardless of their racial and ethnic affiliation.

What’s all the fuss about?
There are several reasons for including this marginalized population. For one thing being declared a medically underserved group immediately calls attention to their status. Every study that refers to medically disparate populations always recommends the development of strategies to address this recognized gap. Examples of some of the benefits include the reduction or forgiveness of medical and dental school loans if the graduate gravitates to serving this population. In addition, working with individuals who are medically underserved qualifies international medical graduates (IMGs) to qualify for legal immigration status. An example of the myopia of this scenario is that IMG’s, working with specific populations in a given geographic area are granted resident status while counterparts working with the same population in the adjacent zip code are refused. There are other opportunities that include the expansion of physician and dentist training, benefits for expanded prevention and screening, research agendas and resource allocation, public health initiatives, community health center grants and the inclusion of people with developmental disabilities in clinical trials. All in all, a win-win for individuals and families in the special needs arena. In addition the “community” at large can’t be far behind in being identified as a collateral winner. And while we can certainly compare the dynamics of citizens with developmental and intellectual disabilities with citizens from distinct racial and ethnic groups, the question of “why” comes to bear. George Santayana offered, “Injustice in this world is not something comparative, the wrong is deep, clear and absolute in each private fate.” And that is exactly what the American Academy of Developmental Medicine and Dentistry (AADMD) is trying to achieve with its “Task Force on Health Disparities;” that people, individuals, regardless of their zip code, ethnic roots or primary language, should be recognized, where appropriate, as individuals at risk for being medically underserved. We feel the evidence is both abundant and compelling that the “where appropriate” translates to individuals with developmental and intellectual disabilities.

Arguments for Inclusion
While the arguments for including citizens with developmental disabilities into the arena of citizens (individually or collectively) that are presently classified as being medically underserved have already been cited, there are additional studies that await your perusal. Two of the most visible and noted “report cards” created to assess disparities are the “Health Accountability 36 Indicators” (Smith, 1998) and the “Integrated Approaches of Laves and Gibbons” (2001). These are offered to defer and defuse anticipated criticisms of arguments generated to question the premise of this article. The data (relating to persons with developmental disabilities) can be “inputted” to offset any sociodemographic disparities.

The Data Enter (stage left)
Matt Holder, MD, MBA, the Executive Director of the AADMD, undertook the following analytical determination to ascertain the appropriateness of the argument based on formulas employed by HRSA (to verify recognition as a “medically underserved population.”) According to HRSA ( http://bhpr.hrsa.gov/shortage/muaguide.htm ), a population can be considered a Medically Underserved-Population (MUP) if it receives an Index of Medical Underservice (IMU) score of less than 62.0.

The IMU is calculated using the simple addition of four scores. In the case of ND/ID population, it would be calculated by adding scores V1, V2, V3 and V4 as follows:

V1 = The percentage of the ND/ID population living below the poverty line
V2 = The percentage of the ND/ID population over the age of 65
V3 = The infant mortality rate among people with ND/ID
V4 = The ratio of primary care physicians to patients with ND/ID

V1—According to one article (Mental Retardation: Vol. 41, No. 6, pp. 446-459), roughly 33 percent of the population of both children and adults with mental retardation live in poverty. Cross referencing this with the HRSA score table give a V1 score of 5.6. the maximum score for this criterion is 25.1.

V2—There are a number of statistics that can be used to calculate the percentage of people with ND/ID that are over the age of 65. Our initial estimates show roughly 10 percent of the ND/ID population are over the age of 65. this corresponds with a V2 score of 19.8. The maximum score possible for this criterion is 20.2.

V3—According to the National Vital Statistics Reports, (Vol. 53, No. 5, October 12, 2004 13) the number one cause of infant mortality in the United States, accounting for 5,623 infant deaths is classified as congenital malformations, deformations and chromosomal abnormalities, essentially, the biomedical causes of neurodevelopmental disorders and/or intellectual disabilities. Since roughly 60,000 to 120,000 people with ND/ID are born every year, the infant mortality for this population is between 47/1000 and 94/1000. Both of these scores represent a V3 score of 0.0. The maximum score for this criterion is 26.0.

V4—This is perhaps the most difficult score to calculate, as it is extraordinarily difficult to estimate the number of primary care physicians willing and capable of caring for this population. We know this number to be fairly low. However, we shall use the maximum score, by default, for purposes of completing the IMU calculation. The maximum score for this criterion is 28.7.

To summarize the IMU calculation, we have estimated the following:
V1 = 5.6 V2 = 19.8
V3 = 0.0 V4 = 28.7
The total IMU score for the ND/ID population, then, is 54.1. This falls well below the determination score of 62.0.

Food for Thought
It’s obvious that you cannot use formulas to change the face of health care for an individual, a family, a community or a population. In terms of providing “cultivated care” to citizens with developmental disabilities there are additional impediments besides the formal declaration of them as being “medically underserved.” Findings from focus groups conducted by the Institute of Medicine addressing racial disparities in health care have definite transferable applicability to addressing disparities in treating individuals with intellectual disabilities. Attributions included effect of stereotyping, communication barriers, the role of economics, lack of respect, improper diagnosis or treatment, patients appearance, health care setting and attitudes of health care providers. Added to that is lack of exposure to this population during training, lack of a shared knowledge base (contributing to questions of motivation, competence, liability and confidence), lackluster reimbursement, questions of informed consent and guardianship, influence of medical model focus on curative mentality, perception of lack of referrals and willing specialists, perception of unrealistic parental expectations and the ongoing invisibility, marginalization and devalued personhood of people with developmental disabilities. There are ongoing efforts to address many of these identified obstacles to care. The appropriate recognition of people with developmental and intellectual disabilities as being “medically underserved” will be a welcome complement to these efforts.

It’s only fitting that I provide further elaboration on the origins of Satchel Paige’s question about the nature of knowing how old you are (if you didn’t know how old you were).

“I don’t know how old I am because the goat ate the Bible that had my birth certificate in it. The goat lived to be twenty-seven.”
Satchel Paige (1906? - 1982)

Rick Rader, M.D., Editor-in-Chief
Director, Morton J. Kent Habilitation Center
Orange Grove Center, Chattanooga, TN