The invisible population

Sept. 1, 2007
The AGD and Special Olympics improve access to care.

The AGD and Special Olympics improve access to care

by Steven P. Perlman, DDS, MScC, Sanford J. Fenton, DDS, MDS, and H. Barry Waldman, MPH, Phd

Several months ago, the tragic news of a 12-year-old boy’s death, which occurred as a result of a chronically untreated dental infection, reverberated throughout the dental community. Deamonte Driver died because his family’s socioeconomic situation depended on the Medicaid dental system for his access to care. As is the case for four out of five children in this country who rely on this system, Deamonte was unable to receive treatment in a reasonable time frame, and this tragic and preventable outcome was the result.

As a result of this incident, a hearing sponsored by the House of Representatives Committee on Energy and Commerce’s Subcommittee on Health was immediately held on Capitol Hill. The hearing was entitled “Insuring Bright Futures: Improving Access to Dental Care and Providing a Healthy Start for Children.” Six witnesses testified, including Stephen Corbin, DDS, MPH, senior vice president for Constituent Services and Support at Special Olympics International and former chief dental officer for the U.S. Public Health Service.

Dr. Corbin’s passionate testimony heightened the panel’s awareness, indicating that although being poor presented a significant barrier in the ability to access dental care, the additional risk factor of having an intellectual disability exacerbates that problem immensely.

Thirteen years ago, Special Olympics International recognized the acute problem of lack of access to dental care for both children and adults with intellectual disabilities, and initiated the Special Olympics Special Smiles® program to address the dental and overall health problems that face this population. In fact, this problem was the No. 1 health care problem for families and caregivers of individuals with intellectual disabilities.

Research shows that rampant untreated dental decay and periodontal disease are more prevalent in individuals with intellectual disabilities than in the general population. Transient and persistent bacteremias are a part of daily life. Countless hospitalizations due to aspiration pneumonia are commonplace, as are deaths from choking among partially and fully edentulous patients-who are more numerous within this vulnerable population. But the morbidity and mortality rates of these children and adults are unknown. No set of data exists because these citizens are members of an invisible population. Even though every study and health agency recognizes the disparities, individuals with intellectual disabilities are not recognized as “medically underserved” by the federal government.

How can this population of 53 million Americans with disabilities and 7.5 million Americans with intellectual disabilities continue to be overlooked? Changing social policies, favorable legislation for individuals with disabilities, and class action legal decisions - all of which delineated the rights of individuals with disabilities - have led to deinstitutionalization and the closure of many state-run, large facilities. By the early years of this decade, up to 90 percent of these former residents had been transferred to community facilities and now depend upon health practitioners in their local communities.

How many meetings, workshops, symposiums, reports, and publications are necessary to create a change in policy? Is it only the sensationalism of a tragic incident that brings a short-lived public and professional awareness of these problems to light? The AGD is collaborating with Special Olympics to address this significant health problem.

Since its inception, the goals of Special Olympics Special Smiles have been:

  • To increase public and professional awareness of the oral health problems faced by people with disabilities.
  • To establish a provider directory.
  • To develop and implement dental education programs for dental professionals, dental schools, community residences, institutional facilities, and Special Olympics athletes.
  • To serve as advocates on standard-of-care and equality-of-care issues.
  • To strive to ensure that people with disabilities and their care providers have access to the most current information on medical issues, in conjunction with the physician consultants of Special Olympics.
  • To establish contact with patients, community residences, institutional facilities, and families; to market Special Olympics as a recreation program; and to reach populations that are difficult to access (particularly persons with profound intellectual disabilities and/or severe physical disabilities).
  • To establish a sports injury prevention program.
  • To establish nutritional guidelines and programs for Special Olympics athletes.
  • To help develop adaptive devices and orofacial sports programs for quadriplegics.
  • To develop a program to help dental professionals recognize and report suspected physical and sexual abuse of patients with special needs.
  • To collect data on the oral health needs of people with disabilities that can be used for health care reform.

By working together, the AGD and Special Olympics can improve access to care by encouraging active participation in the Provider Directory program (see page 12). We will increase the availability of continuing education courses in special patient care and work with dental and dental hygiene schools to make changes in curriculum. We will jointly lobby to initiate health care reform and attain a federal designation for this “medically underserved population.”

Together we can change the quality of life for millions of children and adults with intellectual disabilities. As we reflect on the tragedy of Deamonte Driver, we must not forget or minimize the countless nameless individuals with intellectual disabilities who have in the past - or may in the future - experience a similar fate.

Steven P. Perlman, DDS, MScD, is the global clinical director for Special Olympics Special Smiles. He also serves as associate clinical professor of pediatric dentistry for the Boston University Goldman School of Dental Medicine. He has a private practice in Lynn, Mass. email: [email protected]

Sanford J. Fenton, DDS, MDS, is professor and chair of the Department of Pediatric Dentistry and Community Oral Health at the University of Tennessee College of Dentistry. He also is the North America clinical advisor for Special Olympics Special Smiles. Dr. Fenton’s [email protected]

H. Barry Waldman, DDS, MPH, PhD, is a distinguished teaching professor in the Department of General Dentistry, School of Dental Medicine, State University of New York at Stony Brook. Dr. Waldman’s email is [email protected].

AGD Foundation and Special Olympics Team Up

In 2006, the AGD and the AGD Foundation partnered with Special Olympics to help identify providers for primary dental care for Special Olympics athletes. General dentists willing to provide health care services for persons with intellectual disabilities can identify themselves through the Special Olympics Provider Directory. Special Olympics and the AGD Foundation will continue to work together specifically to improve the health of, and access to health care for, Special Olympics athletes and the broader population with intellectual disabilities. For more information and to sign up for the online provider directory, visit the AGD Foundation’s Web site at

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