Special Olympics, Special Smiles

Dental professionals volunteer their time to provide oral-health screenings to Special Olympic athletes.

by Cathleen Terhune Alty, RDH

Fifty-two million Americans have disabilities and, of that total, it has been estimated that 7.5 million lack access to dental care. The U.S. Surgeon General released a report in March 2001 about the disparity of dental care in America and the oral health-care needs of the nation. Many barriers prevent people with disabilities from getting the care they need, including physical, financial, and health issues, as well as a lack of dental professionals with the desire to treat this population. How do we reach them and how can we discover their needs?

Gaining access to large numbers of this population to collect data to determine their real needs has always been difficult. When the Special Olympics, a year-round sports and training program, was developed in the late 1960s, it brought children and adults with disabilities together in one place. So, it was only a matter of time before the needs of this population came to the forefront. After all, if athletes have health problems that aren't being addressed or managed, how can they expect to perform at their best? That's the question that brought the Special Smiles program to the Special Olympics games.

Special Olympics, Special Smiles (SOSS) is a global oral-health education, screening, and referral program offered in partnership with Special Olympics events. Participating athletes receive free, noninvasive oral-health screening from volunteer dental professionals. Results are recorded, and those with unmet needs are referred to local dentists for further diagnosis and treatment.

"The mission of SOSS is to increase access to dental care for Special Olympics athletes and all people with mental retardation," says Steven Perlman, DDS, MScD, founder of SOSS, "as well as increase the awareness of the state of the athletes' health. The primary goal is to increase the number of dental professionals who will serve people with mental retardation in their practices.

"Patients with special needs often present special challenges when it comes to dental health," Dr. Perlman notes. "Some are architectural barriers to the dental office. Physically, we see a higher incidence of malocclusions and congenital defects in tooth enamel and dentin, as well as the size, shape, or number of teeth. They have a higher incidence of drooling, bruxism, swallowing difficulties, or rumination. They often take medications that have side effects, such as gum enlargement or reduction in saliva, that can affect their health or treatment. Some lack the motor skills needed to performs tasks such as brushing, and many cannot comprehend how to perform basic oral hygiene."

Dr. Perlman adds that about a quarter of special-needs patients live at or below the poverty line. Some of these people receive government aid under Medicaid, but, typically, reimbursement levels are low. Another barrier is the lack of dental professionals both willing and able to care for them.

Aware of the huge need for people with special needs to acquire adequate medical and dental care from his own practice experiences, Dr. Perlman was challenged to solve this problem with the urging and support of Eunice Kennedy Shriver, founder of the Special Olympics and the Joseph P. Kennedy Foundation. Dr. Perlman was commissioned to find a way to provide dental care to people with disabilities in the United States- and all over the world.

Dr. Perlman founded SOSS in 1993 and launched the program in partnership with Boston University Goldman School of Dental Medicine at the Massachusetts Special Olympics Games that same year. SOSS volunteers screened 750 athletes at this first event and were thrilled with the overwhelmingly positive response. The program has grown tremendously since its inception seven years ago, officially becoming a key component of the Healthy Athletes initiative of Special Olympics, Inc. in 1997. The Healthy Athletes initiative emphasizes overall health issues facing Special Olympics athletes, and includes dental, vision, and hearing screenings, as well as one-on-one nutritional counseling and statistical research with Special Olympics athletes at 57 sites in six countries around the world.

SOSS is sponsored by a number of academic and corporate organizations, including Patterson Dental, Colgate Oral Pharmaceuticals, Kodak, Sultan Chemists, the Academy of Sports Dentistry, Delta Dental, Alpha Omega Fraternity, Sonicare-Phillips, Oral Health America, and the ADA Health Foundation. In the year 2000, SOSS screened more than 12,000 athletes at 38 Special Olympics games around the world, including the World Games in Alaska. About 2,000 volunteers provided the support to screen these children and adult athletes, including dentists, hygienists, assistants, dental students, dental hygiene students, dental assisting students, lab technicians, as well as non-professionals who help with event coordination, registration, and greeting athletes.

The dental professionals volunteer their time to perform the screening, one-on-one oral hygiene-care instructions, nutritional counseling, and data recording of decayed, missing, filled, and sealed teeth. Data collected then can be analyzed to determine the dental needs of the population and how well these needs are being met with the current system.

"We always knew this population group was underserved, but we didn't have any firm data to support it," explains Marcia Kayser, RDH, of Durham, N.H., and an SOSS coordinator. "Now we are gathering data on the athletes who come to us to see whether they've had the care they need. Of course, there are many who could be athletes who are not at the Special Olympics games, living in communities that are unaware of the program or have no volunteers to staff the event. But, at least, we're beginning to collect data on the ones that do attend."

Dental hygienists' participation is seen as critical to the program's success, according to Dr. Perlman. "In my book, hygienists are number one in prevention and oral health promotion. At every event, they're there." Many hygienists are trained by SOSS to become event coordinators in their individual states and are a key component in getting an SOSS program up and running in their area.

Special Olympics, Special Smiles coordinators have several tasks. "We recruit hygienists, dentists, dental assistants, and others to volunteer for a day," said Cheri Seed, RDH, SOSS coordinator and State Dental Director in Billings, Mont. "They get training the night before the event on how to collect oral health data so that we're all doing it the same way across the board."

Lisa Esparza, RDH has been an SOSS coordinator in Albuquerque, N.M., for four years. She reports that recruiting volunteers gets easier, not harder, over time. "All volunteers have to do is to be here once. Then, the next year, they come back and bring some of their friends and co-workers along." She also said that the weather is the biggest challenge they face.

Coordinators also create a list of dentists for referral care. "This was the hardest part of my job," she said. "I was finally able to get a list of names through the public health system, programs with community clinics, and hospital-based dental programs." Seed also had problems recruiting dentists for referral, as well as volunteering at the SOSS event. She finally turned to some retired dentists and they were more than happy to help.

Many volunteers are surprised that the average age of a Special Olympics athlete is 25, and that most of the athletes are good dental patients. "Many of these athletes are wonderful dental patients," says Marcia Kayser. "Not all are jumpy, frightened, or disruptive. And, since many are not getting treatment, we are giving these athletes a positive dental experience by treating them gently and with great care. This helps to make them less fearful of dentistry in general."

On the day of the event, hygienists and other volunteers may be doing screenings, data collection, or even walking around the athletic event, encouraging athletes to come to the dental- screening area. Interacting with the athletes, coaches, and care-givers has been a positive experience for all. Jennifer Clayton, RDH, from Boise, Idaho, notes, "You develop a rapport and a relationship with the athletes that becomes a part of who you are."

"This is the most appreciative and cooperative population to work with," says Jackie Tallman, RDH, SOSS coordinator and State Oral Health Program coordinator in Lansing, Mich. Lansing had its first SOSS program in June 2001. "A few do have issues that are beyond anything we can work with," Tallman acknowledges, "but very few. Most are more than eager to show their medals as well as their teeth." She noted that periodontal problems were the biggest concern from the screenings. "We thought we'd see much worse," she adds.

All of the hygiene coordinators had glowing words to describe what they are feeling during the screening event. "It's a great opportunity to spend some relaxed time with other dental professionals without playing beat the clock," says Kayser. "It's also a great opportunity to collaborate with other professionals. We're a fun and happy group."

Christine Miller, RDH, assistant director of the University of the Pacific Dental School, president of the Academy of Dentistry for Persons with Disabilities, and SOSS coordinator in San Francisco, Calif., called it a very satisfying experience.

Miller said, "It was great working with a group of health professionals in whole-person health care. It was a chance to be away from the dental environment, and it gives dental hygienists an opportunity to be leaders in their community. Health promotion and prevention is our area of expertise. This allows us to use our strengths in wonderful, new ways."

"This program changed my life," said Seed. "It is a very moving experience for everyone involved with the program. Hygienists have really embraced this program and SOSS has equally embraced hygienists."

Esparza said, "This is, by far, the easiest public relations project any state dental-hygiene component could do. We have the support of Delta Dental, as well as the rest of the sponsors who supply all of our needs as a package. You don't have to go begging for supplies and support. It doesn't take a lot of time, either. It takes maybe a week and a half to pull the entire thing together."

For volunteers who work at the event, it is usually a four- to six-hour shift from beginning to end.

"I challenge any hygienist to try this!" says Clayton. "It's truly the experience of a lifetime."

Cathy Alty, RDH, is a frequent contributor who is based in Clarkston, Michigan.

Alabama: May 18 in Tuscaloosa, Dr. Maureen Pezzementi, (205) 934-1004, maureen_pezzementi@cs1. dental.uab.edu

Alaska: June 14-16 in Anchorage, Dr. Michael Koropp, (907) 338-8999, [email protected]

Arizona: May 3 in Phoenix, Dr. Jerry Caniglia, (602) 542-1866, [email protected]

Arkansas: July 23, Dr. Lynn Mouden, (501) 661-2595, [email protected]

California: June 15 in Long Beach, Dr. Ingalill Bakker, (213) 740-1416, [email protected]

Colorado: June 1 in Ft. Collins, Dr. Courtney College, (303) 467-8888, [email protected]

Connecticut: June 8 in New Haven, Dr. Alex Mantel, (203) 222-1444, [email protected]

Delaware: June 8 in Newark, Dr. Greg McClure, (302) 266-6312, [email protected]

Florida: March 16 in Miami, Dr. Denise Vedrenne, (954) 262-7338, [email protected]; April 27 in Orlando, Dr. Anthony Wong, (407) 299-3131, [email protected]

Georgia: June 1 in Atlanta, Debbie Douglas, RDH, (770) 926-4353, [email protected]

Hawaii: November 30, Kaneohe Marine Base, Dr. Karen I. Hu, (808) 832-5710, [email protected]

Idaho: February 26 in Pocatella, Jennifer Clayton, RDH, (208) 342-0315, [email protected]

Illinois: May 4 in Edwardsville, Dr. Deborah Schwenk, (618) 474-7129, [email protected]; May 23 in Chicago, Dr. Fred Margolis, (847) 537-7695 kidsdr@interaccess. com; June 22 in Normal, Alicia Shrier, RDH, (309) 663-7339, [email protected]

Iowa: May 24 in Ames, Dr. Rhys B. Jones, (319) 369-7730, [email protected]

Kentucky: June 1 in Richmond, Dr. Gina Higgins, (859) 269-2667, [email protected]

Louisiana: May 25 in Hammond, Charlotte Connick, RDH, (504) 619-8561, [email protected]

Maine: June 8 in Orono, Dr. John Frachella, (207) 941-0259, [email protected]

Maryland: June 8 in College Park, Dr. Mark Wagner, (202) 715-1148, [email protected]

Massachusetts: June 15 in Cambridge, Stacey McNamee, (617) 638-4778, [email protected]

Michigan: March 23 in Grand Rapids, Lisa Darrow, RDH, (616) 243-3757, [email protected]; June 7 in Mt. Pleasant, Jacqueline Tallman, RDH, (517) 335-8909, tall [email protected]; November 16 in Lansing, Dr. Mike Shapiro, (734) 671-8414, [email protected]

Minnesota: June 15 or 22, Twin Cities, Carol Dahlke, RDH, (612) 586-9977, [email protected]

Mississippi: December 7 in Jackson, Dr. Neva Eklund, (601) 984-6100, [email protected]

Missouri: April 20 in Lee's Summit, Dr. John Haynes, (816) 235-2117, [email protected]

Montana: May 16-17 in Billings, Cheri Seed, RDH, (406) 444-0276, [email protected]

Nebraska: May 17 in Omaha, Dr. Gary Westerman, (402) 280-5001, [email protected]

New Hampshire: June 7-8 in Durham, Marcia Kayser, RDH, (603) 547-3311, [email protected]

New Jersey: June 1-2 in Ewing, Dr. Martin Giniger, (973) 972-7210, [email protected]

New Mexico: June 1 in Albuquerque, Lisa Esperaza, RDH, (505) 323-1300, lmeloveyersmile.aol.com

New York: February 16 in Syracuse, Dr. Vincent Filanova, (518) 842-2611, [email protected]; May 5 in Suffolk County, Debbie Cinnotti, (516) 741-2345, [email protected]. edu; June 1 in New York City, Jill Fernandez, RDH, (212) 998-9653, [email protected]; June 15 in Buffalo, Dr. Vincent Filanova, same as above

North Carolina: June 1 in Raleigh, Dr. Rick Mumford, (919) 715-6471, [email protected]

North Dakota: May 31, Dr. Jerome Miller, (701) 232-1148, [email protected]

Ohio: May 3 in Elyria, Jacolynn Fisher, RDH, (440) 244-2668, [email protected]; June 22 in Columbus, Dr. Ed Sterling, (614) 292-3160, [email protected]

Oklahoma: May 16 in Oklahoma City, Dr. Allen Wong, (415) 720-4601, [email protected]

Oregon: July 6 in Eugene, Dr. David Lester, (541) 686-9372, [email protected]; November 16 in Portland, Michael Payne, (503) 295-2715, [email protected]

Pennsylvania: May 4 in Philadelphia, Joan Gluch, RDH, (215) 898-8429, [email protected]; May 18 in Latrobe, Mary Kay Huesdash, (724) 925-4288 hues [email protected]; November 2 in Philadelphia, Joan Gluch, RDH, same as above

Rhode Island: June 1 in Kingston, Dr. Shirley Spater, (401) 444-5995, [email protected]

South Carolina: May 11 in Ft. Jackson, Dr. Carlos Salinas, (843) 792-2489, [email protected]

Tennessee: April 19 in Memphis, Dr. Sanford Fenton, (901) 448-6206, [email protected]

Texas: April 20 or 27 in Richardson, Rick Buchanan, (214) 828-8300, [email protected]; May 3 in Houston, Dr. Adam Wolff, (713) 664-8548, awolff_@hot mail.com; May 4 in San Antonio, Dr. Stephanie Roberts, (210) 567-3429, [email protected]

Vermont: June 8 in Middlebury, Dr. Stephen Pitmon, (802) 862-5052, [email protected]

Virginia: June 8 in Richmond, Dr. Matt Cooke, (804) 828-0791, [email protected]

Washington: May 31 or June 1 in Ft. Lewis or Tacoma, Christine Tweedy, (206) 937-6481, christinetweedy@aol. com

West Virginia: June 8, Dr. Richard Meckstoth, (304) 293-5912, [email protected]

Wisconsin: June 7 in Stevens Point, Dr. Neil Luebke, (262) 791-6502, [email protected]; November 30 in Waukesha, Dr. Neil Luebke, (262) 791-6502, [email protected]

People with special needs often present special challenges when it comes to oral health:

1. Physical barriers: architectural, transportation
2. Financial barriers: low Medicaid reimbursement to providers, 25 percent live below poverty level
3. Treatment barriers: lack of advocacy, malocclusions, genetic or congenital defects, practitioners willing and able to care for them
4. Medicament side effects: gingival enlargement, decreased saliva
5. Motor skills: brushing, chewing, muscle or swallowing problems, drooling, bruxism, rumination

Jennifer Clayton, RDH, is very involved with Special Olympics events. She serves as SOSS coordinator in Boise, Idaho, and also has been a Special Olympics swimming coach since 1995.

"I always gave money to Special Olympics," she said, "but I found that I wanted to do more. I called and said I wanted to be more involved. There was a need for a swimming coach, which is something I have a strong background in. So, a door was opened, and I had no idea where I would fit into the scheme of things."

She first learned about the SOSS program from a past issue of RDH magazine, which featured Dr. Perlman and his work with Special Smiles. A few years later, at a conference in Idaho, the CEO of Special Olympics presented the Healthy Athlete initiative. She was approached to be a coordinator and Dr. Perlman trained her to be a coordinator in Alaska in 2001. Although her first SOSS event was canceled due to the events of September 11, she is looking forward to participating in the rescheduled event this month.

"One of the Special Olympics' themes is 'Training for Life.' Well, this has been outstanding training for my life. It is so shameful that these children and adults do not get the basic dental care they need. Some of them don't have advocates to help them. We need to nudge the profession along because we have something to give back to the community. We just need to get in there and do it!"

One young Olympian shows off his skill at tooth-brushing on a plush toy dinosaur as his fellow athletes and a dental volunteer look on.

According to Special Olympics, Special Smiles, dental professionals and educators can help improve the oral health of patients with special needs by addressing the following issues:

Education: More training in the treatment of special needs is needed. Dental educators can address this more proactively, incorporating such training into their curricula.

Willingness to treat: Lack of access to oral health care is a key challenge facing people with special needs. More dentists must expand their practices to include patient with special needs.

Awareness: The role oral health plays in the overall health and well-being of people with special needs is often poorly understood by their caregivers. Dental professionals can help by educating caregivers about the importance of oral health.

Service: Opportunities like SOSS help address these patients' lack of access to dental services.
— from Specialsmiles.org