“Dental school curricula frequently do not include adequate experiences in the management of the people with disabilities.” (Miller, 1965)

“Persons with disabilities need comprehensive dental services and not just lip service.” (Fenton, 1999)

Almost a half-century has passed since some dental school curricula first introduced (usually on an elective basis) instruction in the care of patients with special needs in an effort to overcome the reluctance to treat these patients because of lack of knowledge and experience in clinical management. In that past era, according to Mink (1971), individuals with disabilities had been

neglected by the dental profession. . . [because of] 1) lack of basic knowledge regarding the patient and appropriate physical and/or psychological management, 2) lack of experience in treating this category of patient, 3) presumed disruption of the usual office routine, 4) presumed need for special facilities and equipment, and 5) the possibility of inadequate compensation for increased time involvement in treatment. (p. 407)

Why is it still so difficult to get needed dental services after 50 years of experience? It may be because things really have not changed that much, despite developments that range from (a) changing social and legal policies to advances in medicine, and (b) deinstitutionalization to increased life expectancies—resulting in increased numbers of individuals with mental retardation/developmental and other disabilities residing in our communities and in need of dental care from local dental practitioners. If improvements in the delivery of needed dental services to individuals with mental retardation/developmental and other disabilities (MR/DD) are to be achieved, then a more comprehensive appreciation of the difficulties involved is necessary.

Education of Dental Students

Repeated studies have shown that dental school graduates do not gain the necessary expertise to treat patients with MR/DD. The results of a study of dental schools in the United States and Canada (Fenton, 1999) showed actual decreases in the allocation of time for the training of students in the care of services for individuals with MR/DD. During their 4 years of education, students were provided with less than 5 hours of didactic training in more than half of the schools, and almost three quarters of the schools only provided 0 to 5% of clinic time for care of patients with MR/DD (Fenton, 1999; Romer, Dougherty, & Amores-Lafleur, 1999).

A national study of dental hygiene programs reported comparable findings: (a) 8% of 170 programs had 10 hours or less of didactic training (including 14% with 0 to 5 hours), and (b) 57% reported that no clinic experience was offered (Goodwin, Hanlon, & Perlman, 1994).

The inadequacies of the preparation of dental school and dental hygiene school graduates has been demonstrated repeatedly during the didactic and clinic training programs that the Special Smiles component of Special Olympics has carried out throughout the United States for more than 8 years (Perlman, 2001). The Special Olympics program provides a dental screening and oral health care education for Special Olympic athletes at local, national, and international events. Athletes and caregivers also receive lists of dentists in their area who have experience in treating patients with special needs. In addition, education programs are carried out to increase the public's and profession's awareness of the oral health needs of individuals with special needs.

Limitation in needed educational experiences in the care of patients with MR/DD, to some degree, is the result of the dental and dental hygiene school accreditation process. Accreditation standards, which originally required a variety of dental school didactic and clinical experiences in the “dental management of the handicapped” were omitted inadvertently when the Commission on Dental Accreditation (2001a) adopted a competency-based format.

Although accreditation standards for schools of dental hygiene address the need to ensure competency in the care of “medically compromised patients,” no specific attention is given to experiences and/or competency in the care of individuals with MR/DD. In a Statement of Intent associated with the accreditation standards for schools of dental hygiene the following is included: “An appropriate patient pool should be available to provide a wide scope of patient experiences that include children, adults, geriatric and special populations” (Commission on Dental Accreditation, 2001a, p. 20). Unfortunately, the term special populations is an all-encompassing phrase that does not specifically challenge schools of dental hygiene to develop innovative programs to prepare students for the community residents with MR/DD who will seek care in private dental practices (Commission on Dental Accreditation, 2001b). (In the fall of 2001, the Special Smiles component of Special Olympics petitioned the Commission on Dental Accreditation to modify its standards to ensure the competency of dental and dental hygiene program graduates in the care of individuals with MR/DD.)

Cultural Norms

Efforts to develop educational opportunities to ensure student competency in the care of individuals with MR/DD, however, do not necessarily ensure a willingness to provide care: According to Bedi and O'Donnell (1989):

The basic problem in education when attempting to promote a positive attitude (especially when it appears to go against the deep-rooted cultural norms) (sic) is that the effect usually disappears shortly after the termination of the program. (p. 723)

Health practitioners tend to define a disability solely as an individual physiological and/or medical condition that requires (or even denies) appropriate medical and/or rehabilitative services (Waldman, Swerdloff, & Perlman, 1999). This orientation, however, ignores wide social and environmental influences affecting the disability. Social, attitudinal, economic, and environmental barriers in our society are significant factors for disabling youngsters and adults with physical and/or mental impairments (Elvins, 1991; Imrie, 1997). Unfortunately, labels, attitudes, and beliefs are not changed easily. As long as the “feebleminded” were safely locked away in state and municipal institutions, or “stored and educated” in separate programs, or “hidden” in family residences, society would be safe.

Supposedly all this has changed. The consequences of developments since the mid-1950s in the care of individuals with mental retardation and/or mental illness (including the development of psychoactive drugs, deinstitutionalization, mainstreaming, and inclusion) have altered and increased the general population's (and community health practitioners') contact and awareness of individuals with MR/DD (Waldman et al., 1999).

In the 30-year period through the end of the 1990s, the number of institutionalized residents with MR/DD decreased by 75%. The number of residents with MR/DD residing in psychiatric institutions decreased by 91%. Specifically, in the mid-1960s, there were more than a quarter of a million individuals with MR/DD in state institutions. By the late 1990s, however, there were less than 58,000 residents with MR/DD in state facilities (Anderson, Lakin, Mangan, & Prouty, 1998). In addition, there are untold thousands of youngsters and adults who have remained with their families, as state institutions were shut down.

In the past, large state institutions (to some degree) offered a wide range of in-house health services provided by medical and dental staff employees. Almost all of the current community residential facilities, however, are too small in size to provide in-house interdisciplinary services that are beyond the annual examinations that are required in some states. As a consequence, the monitoring and delivery of health care can be difficult when the services and health records of individuals with MR/DD are disseminated among multiple providers and locations; and, most important, the residents in the community facilities are dependent upon local dental practitioners for health services.

Although no national studies provide a general view of the dental needs of people with MR/DD, local studies conducted in independent living centers do indicate particular need for services (e.g., Arnett, 1994). Persons with disabilities experience the same general dental health problems as do people without disabilities, but for many of them these conditions serve as added impediments. Nevertheless, “while there is increased awareness of the need to improve access to quality medical services (for persons with disabilities) dentistry has largely been ignored” (Dougherty, Romer, & Birenbaum, 1997, p. 12).

Economic Realities

The overhead patient care run(s) between 60–70% of the dental fees and a cost of just under $10.00 per office visit for regulatory compliance, primarily including mandated infection control and OSHA regulatory compliance. (Dental Society of the State of New York, 1999, p. 18)

In February 1999, the Dental Society of the State of New York, private dentists, and parents brought an action in U.S. District Court against the governor, the acting commissioner of the Department of Health, and the director of the Division of the Budget. The complaint alleged that:

inadequate Medicaid fee schedule discourages dentists from participating in the program and frustrates the mandate of the Medicaid law.

New York's dental fees represent reimbursement rates of between 10 and 30% of the usual and customary fees established by private insurance carriers for their New York City insured (enrollees). (Dental Society of the State of New York, 1999, p. 4)

Nationally, constant dollar (i.e., removing the effects of inflation) per capita Medicaid dental expenditures have continued to decrease since the mid-1970s. In addition, since the mid-1980s, expenditures for dentistry have represented a decreasing share of all Medicaid health spending (Waldman & Swerdloff, 1999).

Now consider these realities:

  • Medicaid serves as a primary source of funding for dental services for a significant proportion of youngsters with MR/DD.

  • Medicaid dental care is mandated for eligible children under the Early Periodic Screening, Diagnostic and Treatment Program.

  • Medicaid dental care for adults is an elective service. In many states, Medicaid dentistry is limited to emergency care (Council on Dental Care Programs, nd).

As a result, “Children with disabilities are aging out of dental care” (Waldman & Perlman, 1997, p. 385).

Administrative and paperwork frustrations, as well as particularly high incidence of appointment “no-shows” only adds to the frustration and limited practitioner participation in the Medicaid dental program (Council on Dental Care Programs, nd).

Challenge

An appeal to the Commission on Dental Accreditation for changes in dental school curricula to ensure student competency in the care of individuals with MR/DD is of limited value if other factors remain unchanged. Obviously, realistic third party reimbursement must be addressed as must needed changes of many societal values. In this process, however, it is essential for other health providers to increase their awareness of the dental needs of individuals with MR/DD (Waldman, Perlman, & Swerdloff, 2001). (In response to a question at the year 2000 Surgeon General's Conference “The Face of a Child,” a physician speaker remarked that results after examining a patient's mouth generally are reported on the chart as “WNL” [standard shorthand for “within normal limits”]. He continued, “It really should stand for, We Never Look.” Maybe “WNL” should be reinterpreted to mean “We Need to Look!”

Without changes, is there any reason to believe that it will be easier to obtain dental services for people with mental retardation/developmental and other disabilities?

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Author notes

Authors: H. Barry Waldman, DDS, PhD, Professor of Dental Health Services, Department of General Dentistry, School of Dental Medicine, SUNY at Stony Brook, NY 11794-8706 ( waldman@notes.cc.sunysb.edu). Steven P. Perlman, DDS, Global Clinical Director, Special Olympics, Special Smiles, Associate Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, 77 Broad St., Lynn, MA 01902