The scope of the access issue

Access to health care is a widely examined, emotion-laden issue. Not only life and death reflect access to adequate health care, but so do presidential elections and the rise and fall of major businesses. Dental care access is a complex subset of the debate. In a recent New York Times article entitled, “Boom Times for U.S. Dentists, But Not for Americans’ Teeth,” it was noted that access to health care, oral health care in particular, presents a well-documented challenge worldwide and specifically in the United States. The article contrasted the substantial incomes of United States dentists with data reflecting the limited or complete lack of access of individuals in lower socioeconomic status. The article referenced the now well-known death of 12-year-old Deamonte Driver in Maryland as a result of his Medicaid status and, consequently, limited access to oral health care. His mother could not identify a dentist who would accept him as a patient. His dental caries produced infection, and eventually a brain abscess took his life. He died after two brain operations and an estimated quarter million dollars in medical care.

The American Dental Association (ADA) and multiple oral health organizations continually report on the limitations of access, generally agreeing that 30% of Americans have limited or no access to oral health care. The ADA president, Dr. Mark Feldman, responded to the New York Times article in the ADA News on September 17, 2007, by stating, “We can’t expect to meet this need by charity work alone. Legislators need to act to provide funds for needed care.” Feldman further noted, “All of us must work harder to improve the oral health of the millions of Americans who don’t have adequate access to dental care.” Pointedly demonstrating the acute nature of the oral health care access problem, Dr. Bernard J. Machen, President of the University of Florida and a pediatric dentist, noted that three-fourths of dentists provide charitable care, and yet only 30% of Medicaid children receive any dental care at all.

Nowhere is the unmet need more critically visible than for persons with special health care needs (PSHCN), most of whom are concomitantly economically disadvantaged. It is estimated that one in six Americans has some disability. “Special care dentistry is the delivery of dental care tailored to the individual needs of patients who have disabling medical conditions beyond routine conditions or mental or psychologic limitations that require consideration beyond routine approaches … approximately 12% of the population is considered to have severe disabilities.” In simple numbers “more than fifty million U.S. residents have a developmental, physical, or intellectual disability that hinders them in functioning on their own or contributing fully to work, education, family, and community life. About 17% of U.S. children under 18 years have a developmental disability.” Honeycutt and colleagues further noted in 2004 the following incidences per two thousand United States births:

• 12,500 children with cerebral palsy

• 5,000 children with hearing loss

• 4,400 children with vision impairment

• 5,000 children with heart malformations

• 5,500 children with other circulatory/respiratory anomalies

• 800 children with spina bifida/meningocele

• 3,300 children with cleft lip/palate

• 8,600 children with a variety of musculo-skeletal/integumental anomalies

The numbers listed represent 1 year in the United States alone. In 2005, Steinberg noted, “One of the neediest yet most under-served groups of dental patients in the United States today is the special needs population. This is a rather diverse group of children and adults, including those with disabilities—whether medical related, mental, or psychologic—and those with physically handicapping conditions that require more than our routine approach to care.” In the 2004 National Survey of Children with Special Care Needs, it was noted that the most needed health service reported, but not received, was dental care. The survey estimated that possibly as many as 75% of children with special health care needs are unable to access oral health care in any given year.

Are there other factors that exacerbate the access issue or increase demand for care? Is there data that the individual dental disease rate for PSHCN is generally higher? It is challenging to document the same, given the many subset populations included in the definition of PSHCN. In 2000, the United States Surgeon General issued a report, “Oral Health in America,” which noted the access disparities for oral health care, especially for PSHCN, with the added commentary that this group generally is at significantly measurably higher levels of systemic disease incidence and are at a higher risk for developing oral disease than is the general population. In a similar report, the U.S. Department of Health and Human Services Health Resource Services Administration in 2001 noted, “Disabled persons exhibit poor oral hygiene, more severe periodontal disease, more decayed tooth surfaces, and greater treatment needs than persons without disabilities.”

Psychologic barriers

Given the restricted access to care for PSHCN, and yet the general willingness of most dentists—be they general practitioners or specialists—to do charitable works, what are the causes of access problems? What are the specific barriers to oral health care? They are numerous and they are challenging. The most often cited barrier is the economic one; practitioners frequently state that providing care to a special needs patient is poorly reimbursed. This article will address that legitimate concern subsequently. Perhaps more central to the issue is the dearth of individual dentists who are prepared or comfortable providing such care. A clear case can be made that lack of education regarding the PSHCN is the greatest barrier. For an oral health care professional with no knowledge of or experience providing care to PSHCN, there is certainly an emotional or even more complex psychologic initial threshold that must be crossed. Just as for a dental student or a dental hygiene student who is preparing to care for their first ever patient, there are emotional aspects that have direct bearing on willingness to see the patient. In dental college the student has limited choices in attaining the prescribed lengthy list of competencies. The final degree and the ability to practice, as documented through licensure, are the motivating goals on which their careers depend. Resultantly, students are highly motivated to overcome their anxieties regarding their adequate knowledge and the ability to identify disease and provide needed services for that first patient, and to deliver care with excellence, both expeditiously and comfortably.

Similar “first patient” anxiety issues emerge later when that same professional, now with clinical experience, is first asked to care for a PSHCN. Given the broad list of conditions that constitute PSHCN, practitioner anxiety and frequently resultant reluctance is understandable, especially if the practitioner is not well prepared educationally. As noted, special health care needs include not only physical disabilities, but also psychologic and complex medical conditions. Hematologic disorders, metabolic disorders, and general medical fragility in a patient can create a practitioner who is fraught with concern over understanding and properly addressing the myriad conditions and contingencies present. Finally, it is not unusual for a patient with disabilities or other special health care needs to present with a constellation of medical problems concomitant to the main condition. Understanding all ramifications of such complex histories requires a broad-based education in the subject. Caring for that very first PSHCN is tantamount to a leap of faith in oneself as a practitioner, and obviously it best occurs in a carefully guided setting. Competent backup and the ability to carefully analyze the complexities and outcomes of the treatment support the growth of the novice’s confidence to proceed.

Dentistry is, by frequent public survey, one of the most respected and trusted of the learned professions. Much of this respect comes from the care, pride, and sense of accomplishment derived from practice by the caregiver, which in turn reinforces those attitudes. Contemporary dentistry, like many other professions, entertains much discussion about maintaining its historically stringent ethics and standards. A value historically held closely by dentistry is the personal satisfaction derived from accomplishing complex procedures at an exceptional level to improve the health of the patient. Exceeding expectations and standards is a value at the head of the list of things taught in colleges of dental education. The typical student bemoans the extraordinary precision and 100% accuracy expected for every procedure, many of which have multiple sub-parts, and are impacted by biologic variability. After attaining the Doctor of Dental Surgery degree, these lessons and standards are well remembered and in most instances implemented. The American College of Dentists, a widely respected honorary organization, has become the standard bearer for these issues. The capacity to accept and meet technical challenges, for example restoring or replacing individual teeth, equilibrating the occlusion, achieving excellent esthetics, and so forth, for a patient who first appears with a complex list of needs provides important satisfaction for the professional. That sense of accomplishment derives from the ability to understand the patients, their needs, their social context, their expectations, and addressing these needs with the skills attained through many hours of education and practice. Providing care to PSHCN, often to a level of excellence far beyond what might initially seem plausible, provides an enormous level of satisfaction. But without preceding experience, especially during one’s education in a guided, monitored environment, that sense of satisfaction is rarely attainable. In the ensuing discussion of overcoming barriers, the role of education, its current status, and what needs to be done to enable positive professional experiences with PSHCN will be examined.

Psychologic barriers

Given the restricted access to care for PSHCN, and yet the general willingness of most dentists—be they general practitioners or specialists—to do charitable works, what are the causes of access problems? What are the specific barriers to oral health care? They are numerous and they are challenging. The most often cited barrier is the economic one; practitioners frequently state that providing care to a special needs patient is poorly reimbursed. This article will address that legitimate concern subsequently. Perhaps more central to the issue is the dearth of individual dentists who are prepared or comfortable providing such care. A clear case can be made that lack of education regarding the PSHCN is the greatest barrier. For an oral health care professional with no knowledge of or experience providing care to PSHCN, there is certainly an emotional or even more complex psychologic initial threshold that must be crossed. Just as for a dental student or a dental hygiene student who is preparing to care for their first ever patient, there are emotional aspects that have direct bearing on willingness to see the patient. In dental college the student has limited choices in attaining the prescribed lengthy list of competencies. The final degree and the ability to practice, as documented through licensure, are the motivating goals on which their careers depend. Resultantly, students are highly motivated to overcome their anxieties regarding their adequate knowledge and the ability to identify disease and provide needed services for that first patient, and to deliver care with excellence, both expeditiously and comfortably.

Similar “first patient” anxiety issues emerge later when that same professional, now with clinical experience, is first asked to care for a PSHCN. Given the broad list of conditions that constitute PSHCN, practitioner anxiety and frequently resultant reluctance is understandable, especially if the practitioner is not well prepared educationally. As noted, special health care needs include not only physical disabilities, but also psychologic and complex medical conditions. Hematologic disorders, metabolic disorders, and general medical fragility in a patient can create a practitioner who is fraught with concern over understanding and properly addressing the myriad conditions and contingencies present. Finally, it is not unusual for a patient with disabilities or other special health care needs to present with a constellation of medical problems concomitant to the main condition. Understanding all ramifications of such complex histories requires a broad-based education in the subject. Caring for that very first PSHCN is tantamount to a leap of faith in oneself as a practitioner, and obviously it best occurs in a carefully guided setting. Competent backup and the ability to carefully analyze the complexities and outcomes of the treatment support the growth of the novice’s confidence to proceed.

Dentistry is, by frequent public survey, one of the most respected and trusted of the learned professions. Much of this respect comes from the care, pride, and sense of accomplishment derived from practice by the caregiver, which in turn reinforces those attitudes. Contemporary dentistry, like many other professions, entertains much discussion about maintaining its historically stringent ethics and standards. A value historically held closely by dentistry is the personal satisfaction derived from accomplishing complex procedures at an exceptional level to improve the health of the patient. Exceeding expectations and standards is a value at the head of the list of things taught in colleges of dental education. The typical student bemoans the extraordinary precision and 100% accuracy expected for every procedure, many of which have multiple sub-parts, and are impacted by biologic variability. After attaining the Doctor of Dental Surgery degree, these lessons and standards are well remembered and in most instances implemented. The American College of Dentists, a widely respected honorary organization, has become the standard bearer for these issues. The capacity to accept and meet technical challenges, for example restoring or replacing individual teeth, equilibrating the occlusion, achieving excellent esthetics, and so forth, for a patient who first appears with a complex list of needs provides important satisfaction for the professional. That sense of accomplishment derives from the ability to understand the patients, their needs, their social context, their expectations, and addressing these needs with the skills attained through many hours of education and practice. Providing care to PSHCN, often to a level of excellence far beyond what might initially seem plausible, provides an enormous level of satisfaction. But without preceding experience, especially during one’s education in a guided, monitored environment, that sense of satisfaction is rarely attainable. In the ensuing discussion of overcoming barriers, the role of education, its current status, and what needs to be done to enable positive professional experiences with PSHCN will be examined.

Economic barriers

In analyzing barriers to access to care for PSHCN, chiefly cited among them appears the economic problem. Individuals rarely perform activities that neither promise nor result in any reward, be it psychologic, financial, or otherwise. For health care professionals, this issue is far more complex than simply a Pavlovian stimulus-response paradigm. Financial reimbursements to oral health care providers are typically based not on units of time spent caring for the patient, but rather on the procedures completed with the patient. To spend what could be viewed as “excessive” time completing needed procedures makes these patients less desirable from an economic standpoint. It is clearly recognized that the procedures themselves are typically those provided to the routine patient. A dental restoration for a PSHCN typically is no different from that provided to any other patient, the teeth are not different. For example, in treating a partially destroyed tooth, the usual restoration technique is appropriate. In unusual circumstances, such as after oncology care, there may need to be modifications in procedures, such as preventive protocols. But generally speaking, routine care is simply that: routine care. Educating the practitioner then focuses on two issues: understanding and addressing the patient’s specific conditions—physical, psychologic, or medical—and managing the behavior and cooperation of the patient. An individual with cerebral palsy and neuromuscular manifestations, such as spasticity with head and neck involvement or ataxia from central basal ganglion damage, may present uncontrolled motion. Given that the restoration of a carious lesion requires the use of the dental handpiece with a sharp bur at its end typically rotating in excess of 100,000 rpm, and further given that exquisite attention to the margins of the restoration and the shape of the cavity preparation is expected, an inexperienced dentist might easily question his or her ability to perform that service on such a patient. Additionally, the collateral expectation is spending an “excessive” period of time in the provision of that care. But as can be seen in other articles of this issue, with reasonable accommodations these concerns can be significantly ameliorated and a minimum of extra time spent providing the indicated quality care. To the negative side of the equation, fee augmentation for extra preparation time necessary to understand the complexities of the patient is nonexistent. Compensatory, higher than customary private-pay fees, would be interpreted as an added, unfair burden for the patient. Third-party insurers rarely provide additional compensation for extra time to provide services or for similar unusual considerations.

The other financial issue is the source of reimbursement. The issue of fair and reasonable reimbursement for provided services is complex. Usual and customary reimbursement does not seem applicable for PSHCN. Most practitioners establish their own “customary” fees. Third parties do likewise, theoretically relating to practitioner usual and customary reimbursements. Some persons in this patient population have government-sponsored health care benefits, such as Medicaid, MediCal, and others, but Medicaid fees are usually quite modest, both in services covered and in reimbursement rates. Crall recently noted, “Medicaid coverage for adults with special needs, however, is subject to individual financial circumstances and state discretion, and often is less comprehensive in terms of scope and depth of coverage (especially regarding dental benefits).” In many states, it is clearly documented that Medicaid reimbursement, outside of certain carefully specified institutional settings, often provides no better reimbursement than an amount that covers the operational overhead of the practice. Consequently, it is not an uncommon discussion among dentists that they may provide care for Medicaid covered/eligible patients, but do so on a charitable basis, filing no claims for payment. They simply do so pro bono as part of their professional caring for the community and individual patients in need. Clearly, more adequate reimbursement from a variety of possible sources, including the federal and state governments, could change this scenario dramatically. Efforts by all in the profession to secure such change are essential and ongoing, even to patient litigation support against state governments by the profession as amicus curae. Compounding these issues, Medicaid dental support often phases out at age 21, leaving no support alternatives for adult PSHCN.

Funding to support care also must be sought from large foundations, some of which exist expressly to support PSHCN. An excellent example is United Cerebral Palsy (UCP), a national organization that historically sponsored fellowships in medicine and in dentistry for already trained pediatric dentists to further their education in caring for patients with cerebral palsy and related neuromuscular conditions. UCP has a history of comprehensive support, providing counseling and transportation for their clients to sites for care, sponsoring fellowship training and other support services. These coordinated efforts present a strong model or best practice example for the services that a private or public foundation can provide in facilitating access to care for PSHCN.

Edelstein presents a three-point plan for ameliorating the financial access barriers:

• Special needs adult dental coverage in Medicaid: engage state legislatures and Medicaid authorities in electively providing comprehensive adult benefits for PSHCN so they do not age out of coverage at 21, when mandatory dental benefits cease.

• A general anesthesia insurance mandate for PSHCN: use the same approach that has been successful in obtaining anesthesia benefits for young children and extend coverage to older patients who also require anesthesia services.

• Enhanced payment for the care of PSHCN: engage state Medicaid authorities in providing a meaningful add-on payment for the care of PSHCN.

A superb paradigm for a comprehensive approach to addressing any multifactor problem has been presented by Ozar, albeit in another context: that of ethical conduct education. Ozar’s problem-solving model can be adapted and applied to the access-to-care problem. The following is such a plan:

Strategic actions to increase PSHCN access

• Increase awareness of dental health importance by the dental profession, medical colleagues, PSHCN’s themselves, parents/guardians, legislators, and the public.

• Attain knowledge in each instance of specific individual roles.

• Educate all involved regarding the specific issues.

• Provide mentoring and exemplary best practices:

  • Create/identify an expert corps

  • Create a larger cross-professions cadre of mentors around the expert corps

  • Create a cadre of issue specific leaders and coordinate communication among them

• Facilitate practical solutions:

  • Address specific barriers

• Increase public awareness of issues:

  • All stakeholders focus on public relations/education

  • Spokesperson training

• Identify resources needed and all possible sources.

• Examine outcomes, modify approaches and revise actions accordingly.

An important new position is developing that can increase general awareness in a community and communication among all involved, with resultantly better access to care. This superb new concept is being promoted through organized dentistry and by community leaders as well. The focus is a new dental team member, called the Community Dental Health Coordinator (CDHC), a role similar to that of individuals in the Latino community, who are called promodores de salud or health promoters. Such trained individuals are increasingly present in very rural settings, as well as in large cities. Depending on the country and the situation, they are often trained by governments to assist individual citizens to access health care. This concept is now being applied to oral health care. In the United States, CDHC may be credentialed and are typically high school graduates who complete approximately 1 year of additional classes in an organized educational setting. These classes include actual clinical experiences and problem-solving approaches. They are sensitized to integrating oral health information with the particular culture or language or value systems of a given community. Community Health Centers and dental colleges would be excellent places to employ such specifically trained individuals. The CDHC would help to organize not only resources for access to care, but also could be a community educator in a wide variety of settings including schools, senior citizen centers, and other community settings.