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The keys to ensure access to dental care. (Vigilance--Involvement--Persistence).

The true barometer of a society's ethical and moral values is the way it treats its most vulnerable members: its children, elderly citizens, people who are socio-economically disadvantaged and persons with developmental or other disabilities. Most ethicists therefore judge a society and its members on their deeds or actions rather than their words or rhetoric.

The issue of access to dental healthcare services for all Americans, including those with developmental disabilities (DD), is currently being debated at national, state and local levels. Participants in the debate include government officials and agencies, professional dental organizations, dental schools and dental auxiliary training programs, dental education accrediting bodies or agencies, advocacy organizations, the healthcare insurance industry, parents and/or legal guardians and, most important, individuals with disabilities.

Access to oral healthcare for persons with special needs remains a significant national problem. The decision by many states to close their institutions and relocate individuals to community-based residential facilities has actually added to this access problem. Many of the state institutions that were closed had provided comprehensive dental services through their onsite dental clinics. Closure of these institutions frequently resulted in the dismissal of the onsite dentists and ancillary staff, who often possessed years of invaluable experience. Persons with special needs who were moved to a community setting no longer had access to their professional expertise. The relocated individuals with disabilities and those with the responsibility for finding necessary dental services often discovered a lack of resources and knowledgeable care providers within the community. Continuity of care was frequently jeopardized when individuals with disabilities were relocated to community-based living facilities.

A national advocacy organization, The Voice of the Retarded (, noted that almost two-thirds of community-based residential facilities report that inadequate access to dental care is a significant issue. The Arc (, a national organization representing people with mental retardation (MR) and related developmental disabilities and their families, reported that people with mental retardation have frequently been denied access to appropriate medical and dental treatment due to their disability. Furthermore, The Arc noted that medical and dental professionals are often reluctant to provide medical and dental treatment because they lack knowledge and understanding of the best practices in treating people with MR, DD and other disabilities.

A national conference called by the Office of the Surgeon General in December 2001 to discuss the issue of health disparities and MR high-lighted the plight of many Americans with DD in attempting to access appropriate healthcare services, especially dental care. In the published conference report that followed, Tommy G. Thompson, Secretary of Health and Human Services, eloquently noted that "Americans with mental retardation, and their families, face enormous obstacles in seeking the kind of basic healthcare that many of us take for granted. Unfortunately, societal misunderstanding of mental retardation, even by many healthcare providers, contributes to the terrible burden. Too few providers receive adequate training in treating persons with mental retardation." In this same report, Dr. David Satcher, then Surgeon General, noted that everyone, including healthcare providers, must recognize the importance of listening to persons with developmental disabilities to learn what needs to be done. Dr. Satcher emphasized that "to listen and not respond with determined action will only heighten the injustice this community has too long endured." Before and during the conference, involved parents and persons with disabilities stressed the following points as major obstacles to accessing necessary healthcare services:

* Lack of provider training;

* Lack of coordination between providers;

* High turnover rate of direct support professionals (DSPs);

* Inadequate level of funding and diverse financial resources for necessary healthcare services.

Additional reports and publications have noted an inadequate number of dental professionals in the community setting willing to treat persons with developmental disabilities. Observations and data from nine years of dental screenings for thousands of athletes during Special Olympics events nationwide have further demonstrated the need to produce more dental professionals who are competent to provide comprehensive services for this seriously neglected population.

Two surveys of American dental schools conducted in the 1990s high-lighted the lack of adequate didactic and clinical instruction. The results reported in the 1993 survey indicated that on average, only 12.9 lecture hours were devoted to the dental management of persons with disabilities in a typical four-year curriculum. Equally discouraging, the study found that fully 65 percent of the dental schools offered fewer than 10 hours of clinical instruction in the four-year curriculum. The second study, published in 1999, essentially duplicated the earlier investigation and found that in 53 percent of the schools, the number of lecture hours devoted to special care dentistry had dropped to fewer than five. These two studies clearly showed that dental students do not gain the expertise necessary to treat people with disabilities during their primary dental-education experience. In light of this, it is especially interesting to note that the Commission on Dental Accreditation (the agency responsible for accrediting all dental education programs in the US) eliminated from its Accreditation Standards for Dental Education Programs in 1996 document language that challenged dental schools to provide adequate student clinical exposure to persons with disabilities.

An inadequate level of reimbursement to dental practitioners further complicates the lack of access to necessary services by persons with disabilities. Providing dental services for this specialized population often requires more time and personnel, but third-party payers, especially Medicaid, usually do not reimburse providers adequately. The American Dental Association (ADA), Special Olympics, American Academy of Pediatric Dentistry (AAPD) and Academy of Dentistry for Persons with Disabilities (ADPD) have been working closely with government officials in an attempt to correct this problem. These professional organizations have also established partnerships with other advocacy organizations to address the insufficient number of dental healthcare providers in the field and the deficiency of adequate clinical training for future dental practitioners.

How has the inadequacy in primary training and reimbursement had an impact on individuals in this special population? This case study is just one example.

A twenty-year-old man with MR living with his parents presented with multiple restorable and non-restorable permanent teeth in obvious need of care. This individual was unable to access comprehensive dental services in his local community despite many attempts to find a willing dentist, although his multiple flare-ups of pain and oral infection over a six-month period were treated with antibiotics on several occasions. The parents were finally able to schedule an examination appointment for their son with a dentist who had advanced hospital dental training; he recommended a comprehensive treatment plan involving a same-day hospital general anesthesia procedure to complete all necessary treatment in one session. Unfortunately, acquiring all the information needed prior to the same-day hospital admission proved to be a nightmare. The patient's primary care physician was unable to provide an adequate medical history, although he cleared the patient for general anesthesia on the consultation request form he returned. The assigned anesthesiologist refused to accept this minimal health history and has continued to postpone the scheduling of this patient for general anesthesia. Financial responsibility for these medical and dental services rests with a third-party managed care organization whose pre-authorization polities and procedures for comprehensive dental services in the hospital setting are cumbersome and time-consuming for all the healthcare professionals involved. Inconsistencies in required documentation among the various healthcare professionals and the responsible financial agency have led to an inability to provide the necessary comprehensive dental services in a timely manner. The resultant fragmentation of responsibility for this patient's care has been detrimental to his well-being and quality of life.

Although it may not be easy to locate a dental practitioner who will provide comprehensive services for persons with DD, parents of children and adults with special needs can succeed in this most important endeavor by becoming a VIP: vigilant, involved and persistent.

How can a parent or DSP ensure that access to appropriate and necessary dental services will be available when needed for their child or adult dependent with a developmental disability? The first step is to educate yourself about the problem and the possible solutions by being vigilant. The Surgeon General's Report on Health Disparities and Mental Retardation is a good place to begin. Another federal agency with excellent information is the National Oral Health Information Clearinghouse (NOHIC), a resource for special care patients.

The second step is to become actively involved in your child's or adult dependent's dental care. Ask your dentist to demonstrate appropriate preventive techniques for cleaning their teeth at home. For example, it may be necessary to modify brushing and flossing techniques or positions to accommodate the person's disability. Realize that individuals with special needs deserve the best that the profession of dentistry can provide. Extraction of teeth should only be considered for those teeth that are non-restorable (hopelessly decayed or fractured) or severely involved with periodontal (gum) disease. Restoration of remaining teeth and elimination or control of periodontal disease should be the overall goal.

The third step is persistence. If you are unable to access dental services for your child or adult dependent, contact the local or state dental society to solicit the names of dental practitioners in your community who provide comprehensive dental services for persons with disabilities. However, you may need to be willing to travel a reasonable distance to have your child or adult dependent examined and treated by a dentist who is competent to provide dental services for persons with special needs.

If you live within a reasonable distance from a dental school, contact the patient screening coordinator to see if your child or adult dependent can receive care at their facility. If you live near a university that has a University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) on campus, contact the UCEDD for the name of dental practitioners who treat patients with disabilities in their dental offices. Contact the Association of University Centers on Disabilities (AUCD), which provides a directory of all of the UCEDDs. If you have exhausted all available resources and still cannot find a dentist willing to treat your child or adult dependent, contact the director of your state's Developmental Disabilities Planning Council and director of your state's Protection & Advocacy Agency for advice and direction.

The case study below demonstrates what can happen if everyone works together for the welfare of a person with a developmental disability. It is up to government officials and agencies at all levels, professional dental organizations, dental schools and dental auxiliary training programs, dental education accrediting bodies or agencies, advocacy organizations, the healthcare insurance industry, parents and/or legal guardians and, most important, those individuals with disabilities to ensure that this scenario is multiplied countless times in the future.

A thirty-two-year-old patient with severe mental retardation and cerebral palsy living at a state residential facility presented with a need to replace a missing upper front tooth lost due to previous trauma. It was decided that the best treatment approach for this individual would be a dental implant and crown. Under the supervision of the state facility's dental director, all necessary healthcare professionals involved in the planned treatment were notified, documentation--including a comprehensive health history and informed consent--was completed, and financial arrangements were coordinated in a timely manner. This led to a smooth and successful same-day general anesthesia procedure being performed within one month of the initial dental evaluation. This patient currently enjoys a functional and esthetic state-of-the-art dental restoration.

Universal access to necessary and appropriate dental care is an achievable goal if vigilant, involved and persistent individuals place it on society's ethical agenda for action.


Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation. Report of the U.S. Surgeon General's Conference on Health Disparities and Mental Retardation, February 2002. (

Fenton, SJ. People with disabilities need more than lip service. Special Care in Dentistry, 19(5): 198-199, 1999.

Commission on Dental Accreditation. Accreditation Standards for Dental Education Programs. Chicago, 1998.

NOHIC has many excellent publications on a variety of topics related to the dental management of persons with special needs (

Directory of UCEDDs can be found at

For information on state programs, visit

Sanford J. Fenton, DDS, MDS, FDS, RCSED, FADPD, is Professor and Chair of the Department of Pediatric Dentistry & Community Oral Health at the University of Tennessee College of Dentistry. Dr. Fenton is also the UTHSC Chief of Dental Services at Arlington Developmental Center and a past president of the Academy of Dentistry for Persons with Disabilities. He also served as Chairman of the Health Promotion: Providers Work Group during the Surgeon General's Conference on Health Disparities and Mental Retardation.

Carlton V. Horbelt, DDS, FADPD, is an Associate Professor in the Division of Community Oral Health at the University of Tennessee College of Dentistry and Dental Director at Arlington Developmental Center. Dr. Horbelt is the current president of the Academy of Dentistry for Persons with Disabilities and past president of the Southern Association of Institutional Dentists.
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Author:Fenton, Sanford J.; Horbelt, Carlton V.
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Oct 1, 2002
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