Adults with disabilities and proper dental care: who will provide dental care for children with disabilities when they grow older?

SPECIAL OLYMPICS

Special Olympics was founded by Eunice Kennedy Shriver in 1968 and has grown into a global movement involving 2.5 million athletes, millions of volunteers, family members, and friends. The international organization provides year-round sports training and athletic competition in a variety of Olympic-style sports for children and adults with intellectual disabilities. The year round programs provide opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in the sharing of gifts, skills, and friendship with their families, other Special Olympic athletes, and the community. Most important has been the opportunity to demonstrate what people with intellectual disabilities can do, rather than what they can't do.

It was in the early 1990s that Eunice Shriver and Senator Ted Kennedy of Massachusetts became increasingly aware of the inability to find a dentist who would provide restorative services for their sister, Rose Marie (known as Rosemary), an adult with an intellectual disability. A previous review by a hospital based dental team had suggested the extraction of all of her remaining teeth (an all too often dental treatment plan for individuals with intellectual disabilities). The plan was unacceptable. Finances were not a concern; it was a matter of locating a practitioner capable and willing to provide restorative care.

A HISTORIC DENTAL APPOINTMENT

It was at this point in the mid 1990s that Rosemary, age 62, was referred to one the coauthors of this article, Dr. Steven P. Perlman, a private practicing pediatric dentist (more than one thousand miles away) who emphasized services for individuals with special needs. It was especially interesting to the Shriver/Kennedy families that pediatric dentists were the dental professionals that most often were called upon to provide the care, not only for youngsters, but for adults with special healthcare needs. Rosemary received the needed restorative treatment under general anesthesia because of the complexity of care; not one tooth was extracted.

A later meeting between Eunice and Sargent Shriver, Eunice's husband, and Dr. Perlman introduced the realities of the widespread dental and general health needs of children and adults with intellectual disabilities, the problems of accessing care, and finding clinicians who had received training and were willing to provide care for an adult with special needs.

SPECIAL OLYMPICS AND THE HEALTHY ATHLETES PROGRAM

It was the dental care of a 62-year-old with an intellectual disability by a pediatric dentist, which served as the catalyst to broaden Special Olympics to include the Healthy Athletes initiative. The "Special Smiles" component provides oral health evaluations, fabrication of mouth guards, health education, and referrals made to community dentists for needed care. In addition, a major national and international effort is carried out to encourage dental practitioners to provide care to youngsters and adults with special needs.

The Healthy Athletes program was designed to help Special Olympics athletes to improve their health and fitness, leading to an enhanced sports experience and improved well being. The Special Olympics Healthy Athlete initiative now includes: Fit Feet, FUNfitness, Healthy Hearing, Health Promotion, Opening Eyes, Medfest, and Special Smiles. Volunteer healthcare professionals and students are trained to provide the screenings in an effort to educate the professional community about the health needs and abilities of persons with intellectual and developmental disabilities.

INCREASING NUMBERS AND LIVING ARRANGEMENTS

The reality is that the number of adults with disabilities has increased as a result of higher initial survival rates, improved medical management resulting in increased life expectancies, and the increased likelihood of acquiring chronic disabilities later in life. It is now estimated that 10 percent of the population has a severe disability. (1)

By the beginning of this decade, more than 6.5 million children with disabilities (11 percent of all public school children) were receiving an education under federal legislation (Public Law 94-142--Individuals with Disabilities Education Act--IDEA). This 1975 legislation laid out the rights of children with disabilities to attend public schools, receive free services designed to meet their unique needs, and learn in regular education classrooms with non-disabled children to the greatest extent possible. It also authorized federal funds to cover some of the costs of these special services. Each year, more than 100,000 of these children graduate into adulthood. (2)

Evolving residential requirements for individuals with mild and moderate intellectual disabilities and related developmental disabilities, (ID/DD) increasingly place these persons of all ages in community settings. Changing social policies, favorable legislation for individuals with disabilities and class-action legal decisions, which delineated the right of individuals with ID/DD, have led to deinstitutionalization (i.e. "mainstreaming" establishment of community oriented group residences and enhanced personal family residential settings) and closure of many state-run, large facilities.

ORAL HEALTH NEEDS

Deinstitutionalization has been related to a worsening of oral health status as many individuals with special needs have lost their institutional-based dental providers and have become dependent upon community-based providers. "Advocates for adult 'aged, blind and disabled' report that 'low-income people with disabilities ... have more dental disease, more missing teeth, and more difficulty obtaining dental care than other members of the general population." (3)

Prior to deinstitutionalization, pediatric dental specialists (members of an "age defined" specialty) in cooperation with general practitioners provided much of the needed services for youngsters with special needs who remained with their families in the general community. But many of these youngsters (as with Rosemary) were "aging out" of the period of life generally served by pediatric dentists. As a consequence of the limited availability of general practitioners providing services to adults with special needs, some pediatric dentists continue to provide care for older patients.

Results from the National Health Interview Survey indicate that the unmet dental care is far higher for children with special needs than for their peers. Seven point three percent of all parents report that their children have unmet dental treatment needs, compared to 24 percent of parents of children with special needs. (4)

A continuing series of federal agency studies confirms that oral diseases remain highly prevalent and highly variable among various population groups. " ... racial/ethnic minorities, those with lower incomes, lower educational level and current smokers across age groups have larger unmet dental needs compared with their counterparts." (1)

* There are low dental utilization reports for young children and frail elderly, low-income subpopulations at all ages (despite comprehensive Medicaid coverage for children under age 21), people with limited education, and immigrant/migrant/homeless populations. (5)

* Comparing reasons for delayed or missed dental care, U.S. residents reported a lack of affordability 1.6 times more often for dental services than for medical care.

* U.S. residents " ... are less than 40 percent as likely to have dental as medical insurance ... " (6)

* "The unfavorable findings (for the general population) pale in comparison with poor oral health, unmet health needs, and lack of access to care for people who are particularly vulnerable because of special healthcare needs ... " (1)

* The report from the National Survey of Children with Special Health Needs emphasized that, "the (health) service most commonly reported as needed but not received was dental care ... " (7)

The reality is that the difficulties faced in securing needed dental services for Rosemary Kennedy in the mid 1990s are not that different in this decade--except that there are increased numbers of youngsters and adults with special healthcare needs.

WHY A RELUCTANCE TO PROVIDE DENTAL CARE?

Education

Repeated studies of graduating dental students indicate limited preparation to provide services for individuals with special healthcare needs. By the end of the 1990s and into the present decade, more than half of the U.S. dental schools provided less than five hours of class room presentations and about three quarters of the schools provided 0-5 percent of treatment time for patients with special needs. In a recent study, half of the students reported no clinical training in the care of patients with special needs and 75 percent reported little to no preparation for care of these patients. (8) Similar results were reported for the education of dental hygienist students. (9) As a result, one should not be surprised that only 10 percent of general dentists responding in one study said they treated children with special needs often or very often. (10)

The Commission on Dental Accreditation responded to these findings with the recent modification in its standards, which now require that, "Graduates must be competent in assessing the treatment needs of patients with special needs." (11)

In contrast to general dentistry post-doctoral programs, " ... post-doctoral pediatric dentistry education has played a primary role in caring for special-needs patients of all ages ... " (12) The assumption of responsibility for adults " ... with special needs by pediatric dentists has resulted in controversy over the appropriate age range of patients to be cared for by pediatric dentists, particularly given these dentists' limited expertise in providing adult services." (1)

There is a fundamental difference between medical and dental training, which exists at both the pre-and post-doctoral levels, in the way that dental and medical trainees engage people as patients. Medical students and trainees " ... routinely observe and experience patients from both the pharmacotherapeutic/ socio-behavioral perspectives of medical care and from the interventional/objective" perspective of surgical care ... (by contrast, dental students) tend to focus exclusively on surgical treatment to the point that the patient's oral structures, rather than the patient, become the center of their attention." (1) In addition, "continuing professional dental education rarely provides additional training on vulnerable and special-needs populations." (1)

Finances

The Medicaid dental program was established to ensure that needed dental services were obtainable for poor children and adults. The availability of dental services under this joint federal-state financed program, together with the State Children's Health Insurance program (SCHIP) (which covers additional low-income children who do not qualify for Medicaid) is a major determinant in the receipt of services for individuals with special health care needs. " ... Medicaid serves almost 530,000 individuals with mental retardation/ developmental disabilities spending $27.4 billion in fiscal year 2004 or almost $52,000 per person per year." (13)

While dental services are required for children under the Early Periodic Screening, Diagnosis and Treatment (EPSDT) Medicaid program, dentistry is an elective service for adults. "(A) Medicaid analysis (indicated) ... that only seven states cover reasonably comprehensive adult dental care in their Medicaid program as of 2005." (6)

Despite practitioner justification of inadequate finances, Byzantine administrative arrangements and paperwork, as well as missed patients appointments, the media continually emphasizes the unwillingness of dentists to provide care to Medicaid patients with the result that " ... fewer than one-third of children covered by Medicaid received any dental treatment at all."(14) "Particularly problematic is the loss of dental coverage at age 21 for special needs children as they age-out of the mandatory EPSDT Medicaid program and become subject to limitations in adult coverage." (1)

SO WHO WILL PROVIDE DENTAL CARE FOR ADULTS WITH DISABILITIES?

Practicing dentists who care for children with special needs are characterized as those who are older, who accept Medicaid, and who practice in small towns. "These factors suggest that these dentists are more engaged in their communities, more likely to be personally familiar with families with vulnerable and special needs patients, and practice in ways that are more socially equitable." (10) But what of adults?

Undoubtedly, many dentists provide services to adults with a great range of disabilities. The difficulties arise in securing care for those adults with particularly complex and severe special needs. While pediatric dentists may, to some extent, provide needed services for these patients, children's hospitals often will not admit adult patients with special needs because they have an 18-year-old cut off for admission regardless of the type of disability. Recent questioning of pediatric program directors and members of the specialty Board of Pediatric Dentistry indicated that there is no available information regarding the number of pediatric dentists who provide dental care to adults with special needs.

While the recent establishment of education requirements in dental and dental hygiene schools will begin to prepare graduates for the care of individuals with special healthcare needs, it will require many years before significant numbers of these graduates will serve our communities. In addition, there is the need to establish a source of necessary financial resources for needed services. Although the Medicare program supports services for adults with permanent disabilities, the coverage for dental costs is extremely limited. (15)

In the past the dental profession has moved to develop solutions to the delivery of services as a result of community pressure. For example, 1) the passage of legislation in the State of Oregon to legalize denturists (laboratory technicians who could fabricate and provide dentures to patients without the supervision of a dentist) promoted practitioner interest to provide prosthetic services for older patients, (16) and 2) the present American Dental Association concerns regarding efforts to provide dental services by dental therapists (non-dentists with two years of training), due to the unavailability of dentists in the non-metropolitan areas of Alaska. (17) Maybe, that's the answer--community pressure?

Editor's Note: Steven P. Perlman, DDS, MScD, DHL (Hon), a regular contributor to this column, was recently honored by the Chicago Dental Society with the George Cushing Award and by the Academy of General Dentistry (AGD) with the 2009 Humanitarian Award for his many years of service in raising public awareness about the importance of oral health. EP congratulates Dr. Perlman on these well-deserved recognitions.

References

(1) Edelstein BE. Dental and interdisciplinary workforce approaches to oral health care for vulnerable and special-needs population. Sixth Annual Report to the Secretary of the U.S. Department of Health and Human Services and to Congress. Advisory Committee on Training in Primary Care Medicine and Dentistry. Rockville MD: Government Printing Office, 2006.

(2) American Youth Policy Forum. 25 years of educating children with disabilities: 2002. Available at: http://www.aypf.org/publications/special_ed.pdf Accessed April 29, 2008.

(3) Glassman P, Folsae G. Financing oral health services for people with special needs; projecting national expenditures. J Calif Dent Assoc 2005;33:731-740.

(4) Newacheck PW, Hughes DC, Hung YY, et al. The unmet health needs of America's children. Pediatrics 2000;104:989-997.

(5) Disparities in dental utilization, U.S. MEPS 2002. MEPSnet/HC. Available at: http://www.meps.ahrq.gov/MEPSNet/HC/MEPSNetHC.asp Accessed April 27, 2008.

(6) Children's Dental Health Project. Preserving the Financial Safety Net by Protecting Medicaid and SCHIP Dental Benefits; in Edelstein, op cit.

(7) Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs. Rockville, MD: Department of Health and Human Services, 2004.

(8) Waldman HB, Fenton SJ, Perlman SP, Cinotti DA. Preparing dental graduates to provide care to individuals with special needs. J Dent Educ 2005;69:249-254.

(9) Goodwin M, Hanlon L, Perlman SP. Dental hygiene curriculum study on care of developmentally disabled. Boston: Forsyth Dental Center, 1994.

(10) Cassamassimo PS, Seale NS, Ruchs K. General practitioner's perceptions of education and treatment issues affecting access to care for children with health care needs. J Dent Educ 2004;68:23-28.

(11) Commission on Dental Accreditation. Accreditation standards for dental education program. Chicago: American Dental Association, 2004.

(12) Thierer T, Meyerowitz C. Education of dentists in the treatment of patients with special needs. Calif Dent J 2005;33:723-729.

(13) United Cerebral Palsy. A Case for Inclusion: an analysis of Medicaid and Americans with Mental Retardation and Developmental Disabilities, 2006. Available at: http://www.ucp.org/uploads/Full_inclusion_state_report.pdf Accessed April 29, 2008.

(14) Otto M. For want of a dentist. Washington Post, February 28, 2007; B1.

(15) Waldman HB, Truhlar MR, Perlman SP. Medicare dentistry: the next logical step. Pub Hlth Rep 2005;120(1):6-10.

(16) Waldman HB. Denturism in the 1980s: An irony of history? J Amer Dent Assoc 1980;100:17-21.

(17) Berenson A, Dental clinics, meeting a need with no dentist. NY Times April 29, 2008, pA1,A19.

H. Barry Waldman, DDS, MPH, PhD is a Distinguished Teaching Professor in the Department of General Dentistry at Stony Brook University, NY.

Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director for the Special Olympics Special Smiles program and is Associate Clinical Professor of Pediatric Dentistry at The Boston University Goldman School of Dental Medicine. His private pediatric dentistry practice is in Lynn, MA.

Debra A. Cinotti, DDS is Clinical Associate Professor and Associate Dean for Admission and Student Affairs for the Department of General Dentistry at Stony Brook University, NY.