Health Related Issues for Individuals with Special Health Care Needs

More than 50 million individuals in the United States with developmental disabilities, complex medical problems, significant physical limitations, and a vast array of other conditions considered under the rubric of “disabilities” live in our communities, many as a result of deinstitutionalization and mainstreaming. Children and adults with special health care needs have become a much more integral and visible component of everyday life. This process represents an ongoing change in perceptions about individuals with disabilities and subsequent reform of policies concerning the rights and the principles of care for people with special needs. The reform was built upon an increased role for the family and community health practitioners in providing needed care.

More than 50 million individuals in the United States with developmental disabilities, complex medical problems, significant physical limitations, and a vast array of other conditions considered under the rubric of “disabilities” live in our communities, many as a result of deinstitutionalization and mainstreaming. Children and adults with special health care needs have become a much more integral and visible component of everyday life. This process represents an ongoing change in perceptions about individuals with disabilities and subsequent reform of policies concerning the rights and the principles of care for people with special needs. The reform was built upon an increased role for the family and community health practitioners in providing needed care.

The beginning of change: exposing the “gap”

In 1999, the President of Special Olympics, Dr. Timothy Shriver, publicized the lack of essential health services for Special Olympics athletes and more generally for people with intellectual disabilities (ID). He recognized that until the public health dimensions of wellbeing for Special Olympics athletes and people with ID were documented and widely communicated to policy makers, there was little chance for improvement. The Special Olympics-sponsored publication, The Health Status and Needs of Individuals with Mental Retardation , provided a comprehensive review of the health and social service research literature, which documented the extensive unmet health care needs and extensive risk factors for people with ID. With this study in hand, Shriver convinced Senator Ted Stevens of Alaska to schedule a Special Field Hearing of the United States Senate Committee on Appropriations during the 2001 Special Olympics World Winter Games in Anchorage, Alaska. At this hearing, scores of leaders, scientific and health experts and advocates presented testimony about the health status and needs of people with ID.

During the meeting, Surgeon General David Satcher was informed and made the commitment to focus the attention of his office on the health challenges of people with ID. The Surgeon General Listening Sessions, a national Surgeon General’s conference, were followed with the 2002 Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation. He wrote in the forward of the report that, “It became apparent that, as our system of care for those with mental retardation evolved, our attention to their health needs lessened.” The Surgeon General’s report directed those who care for persons with developmental disabilities toward six strategic goals that will “close the gap” in the delivery of health care to this population of Americans. Specifically, Goal 4 addressed the lack of professional training in the care of persons with developmental disabilities. Dr. Satcher observed that, “The challenges and rewards of treating individuals with MR are rarely addressed in the training of physicians and other health care professionals. However, anecdotal evidence and limited data indicate that opportunities for clinical experiences with these patients, early in medical and other health professions training, increase the capacity of providers to value and accept these patients into their practices.”

For example, specifically, dental education: by the end of the 1990s and into the present century, a series of studies found that during the 4 years of education, more than half of United States dental schools provided fewer than 5 hours of classroom presentation and about 75% of the schools provided from 0% to 5% of patient-care time for the treatment of patients with special needs. In one study, 50% of the students reported no clinical training in the care of patients with special needs. One should not be surprised that only 10% of general dentists in one study said they treated children with cerebral palsy, mental retardation, or medically compromised conditions often or very often. Of those in the study, 75% reported they rarely or never treated children with cerebral palsy in their practice. In addition, a national study of dental hygiene programs reported comparable findings: 48% of 170 programs had 10 hours or less of didactic training (including 14 with 5 hours or less) and 57% of programs reported no clinical experience.

How do you translate the need to both train the next generation of physicians and dentists to care for people with disabilities into innovative curriculums, clinical opportunities, and rewarding careers, and improve the overall heath of individuals with special health care needs? The first step is to “congeal a group of likeminded rogues and someone says, Who wants to be president?.” That was the beginning of the American Academy of Developmental Medicine and Dentistry (AADMD). The Academy was established to:

  • Assist in reforming the current system of health care so that no person with developmental disabilities is left without access to quality health care.

  • Prepare clinicians to face the unique challenges in caring for people with developmental disabilities.

  • Provide curriculum to newly established developmental disabilities training programs in medical and dental schools across the nation.

  • Increase the body and quality of patient-centered research regarding those with developmental disabilities and to involve parents and caregivers in this process.

  • Create a forum in which physicians, dentists, families, and caregivers may exchange experiences and ideas with regard to caring for patients with developmental disabilities.

  • Disseminate specialized developmental medical and dental information to families in language that is easy for the family to understand.

  • Establish alliances between visionary advocacy and health care organizations for the primary purpose of achieving better health care.

AADMD members present the following series of issues that must be considered if the profession is to improve services for individuals with special health care needs.

Medically Underserved

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 2002 report 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 primary report on health care disparities for people with developmental disabilities, others reported that “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.” More recently, an article opens with the statement, “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 one of this article’s authors (R.R.), as editor of Exception Parent (EP) Magazine. R.R. interfaces with thousands of parents each year and although it is totally anecdotal, these interfaces are overwhelmingly revealing. Their kids (across the life span) experience a patchwork quilt form of health care. Certainly, there are many examples of “cultivated care” 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 all of this hasn’t been enough and one potential (and critical) impediment is the nondeclaration of this population as being medically underserved.

In the 750-page report issued by the Institute of Medicine, 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 template 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 the group’s 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 IMGs, 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, this is a win-win situation 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 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. The authors 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. Two of the most visible and noted “report cards” created to assess disparities are the Health Accountability 36 Indicators and the Integrated Approaches of Laves and Gibbons . These are offered to defer and defuse anticipated criticisms of arguments generated to question the premise of this presentation. The data (relating to persons with developmental disabilities) can be “inputted” to offset any sociodemographic disparities.

The Data Enter

How would the Health Resources and Services Administration (HRSA) determine and recognize a “medically underserved population of individuals with neurodevelopmental disorders or intellectual disabilities” (ND/ID)? According to HRSA, a population can be considered a medically underserved population 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:

  • = The percentage of the ND/ID population living below the poverty line.

  • = The percentage of the ND/ID population over the age of 65.

  • = The infant mortality rate among people with ND/ID.

  • = The ratio of primary care physicians to patients with ND/ID.

Now input:

  • V1—Roughly 33% 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% 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—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 ND/ID. Because roughly 60,000 to 120,000 people with ND/ID are born every year, the infant mortality for this population is between 47 out of 1,000 and 94 out of 1,000. 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, and 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 is 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 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, patient’s 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.

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Oct 29, 2016 | Posted by in General Dentistry | Comments Off on Health Related Issues for Individuals with Special Health Care Needs
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