So Why Keep Screening?

BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON, THADDEUS J. ARNOLD, MPH AND MISHA GAREY, DDS

The repeated screenings do demonstrate that significant numbers of individuals are referred to dental practitioners and receive the needed relief from pain and suffering.

DELAYED AND NO CARE
“…On the patient side of the balance sheet, having a child with (disabilities) is costly and can directly impact a family’s stability… The general public’s impression is that people with (disabilities) have greater access to care… the public’s view is overly optimistic…” 1
In the United States, between 1997 and 2012, among the total population, there was an increase in the proportion of people that delayed or did not obtain needed medical care, prescription drugs and dental care due to cost factors. The greatest proportions of these people were individuals aged 18 to 64 years. Among individuals with and without disabilities in this age group, there were marked differences. Due to costs, in 2012, the proportion of individuals
with disabilities was:
• 2.5 times the rate of individuals with no disabilities for nonrecipients of necessary dental care;
• 2.3 times the rate of individuals with no disabilities for delayed or non-recipients of needed medically necessary health care;
• 3.8 times the rate of individuals with no disabilities for nonrecipients of needed prescription drugs. (see Table 1)
At the state level, in 2008, there were wide variations in the prevalence of dental visits in adults with and without disabilities.”3
• Among adults with disabilities, the proportions ranged from 46.9% in Mississippi to 74.5% in Rhode Island.
• Among adults without disabilities, the proportion ranged from 56.7% in Oklahoma to 78.0% in Connecticut. (see Table 2)
Further, “having a disability and living in a rural environment …can lead to decreased health status, decreased access to health care, and decreased health outcome.”4 “Rural residents tend to be older, poorer, less educated, and are more likely to be uninsured than their urban counterparts.”5

Year after year these findings are rather similar; so why more studies and screenings?

SPECIAL OLYMPICS
Special Olympics is the world’s largest sports organization for children and adults with intellectual disabilities, providing year round training and competitions to more than 4.2 million athletes in 170 countries. Special Olympics competitions are held every day, all around the world—including local, national and regional competitions, adding up to more than 70,000 events a year. These competitions include the Special Olympics World Games, which alternate between summer and winter games. Special Olympics World Games are held every two years.

HEALTHY ATHLETES
The more than 1.4 million free health screenings are a critical component of the Special Olympics Healthy Athletes program that offers health services and information to athletes who often are medically and dentally underserved. In the process, Special Olympics has become the largest global public health organization dedicated to serving people with intellectual disabilities.

Healthy Athletes currently offers health screenings in seven areas: Fit Feet (podiatry), FUNfitness (physical therapy),
Health Promotion (better health and wellbeing), Healthy Hearing (audiology), MedFest (sports physical exam), Opening Eyes (vision) and Special Smiles (dentistry). Screenings educate athletes, their families, coaches and care-givers on healthy choices and also identify problems that may need additional follow-up.

SPECIAL SMILES
The Healthy Athlete program started with concerns for the oral health of the athletes as dental care is the most unmet health care needs for children and adults with intellectual disabilities. Special Smiles, initiated in 1984, provides comprehensive oral health care information, including offering free dental screenings and instructions on correct brushing and flossing techniques to participating Special Olympics athletes. This also includes issuing
preventative supplies like toothpaste, toothbrushes, dental floss and fluoride varnish. Athletes who require follow up dental services are referred to local oral health professionals.

Healthy Athletes also aggregates results from exams, which highlight the health problems experienced by people with intellectual disabilities. For example, in 2013, 13.9% of athletes reported mouth pain, 34.5% had obvious, untreated tooth decay, 22.7% reported never having had an eye exam, and 27.2% failed hearing tests.

Specifically, for Special Smiles screenings in 2013, there were:
• Globally – 200 events with 31,577 athlete screenings carried out by 1,998 clinical volunteers and 2,484 student volunteers
• United States – 88 events with 13,461 athlete screenings carried out by 889 clinical volunteers and 1,271 student volunteers.6.7

SPECIAL SMILES SPECIAL OLYMPICS SCREENING IS A FIRST STEP
The referrals to private dentists for care offer the opportunities for practitioners to expand their patient rosters with individuals with disabilities who are members of families already under their care and new families with individuals with disabilities who have been screened and referred by the Special Smiles programs to dental schools, community clinics and private practitioners.

QUESTION: ARE SCREENING AND REFERRAL EFFECTIVE?
A study of 14,188 Special Olympic athletes with a total of 20,547 Special Smiles screenings were carried out,  including 4,153 athletes who had screenings at different time periods.
Urgent referrals:
• 645 (16%) athletes had a referral after at least one of their screenings with a total of 844 screenings with an urgent referral.
• 498 (59%) of those screenings with an urgent referral had a subsequent Special Smiles screening at a later time point. Of the 498 follow-up screenings, 329 (66%) did not need an urgent referral.
Mouth pain:
• 868 athletes (21%) had at least one screening where they reported mouth pain.
• 683 (59%) of those screened with reported mouth pain had a subsequent screening at a later time point. Of the 683 follow-up screenings, 446(65%) reported no mouth pain.
Results: Approximately two-thirds of screenings with urgent referrals and reported mouth pain led to the needed follow-up care after an athlete attended Special Smiles.

SO WHY KEEP SCREENING?
“While people in various cultures recognize that individuals with intellectual disabilities do not receive needed training and support services in order to successfully participate in society, they are not viewed as lacking proper health care.” 8

An international study carried out in Brazil, China, Egypt, Germany, Ireland, Japan, Nigeria, Russia and the United States, reported that the general public of these countries lacked an appreciation of the range of capabilities of individuals with intellectual disabilities, and therefore has low expectations of what they can do. “The world still believes that individuals with intellectual disabilities should work and learn in separate settings, apart from people without disabilities. The family is seen as the most appropriate living environment for individuals with intellectual
disabilities, a function of both cultural values and availability of services.” 8

Given these findings, studies and screenings reinforce the realities of the underserved oral health needs of  individuals with disabilities. Equally important is the awakening of families, caregivers, Special Olympics coaches, the dental profession and the general public to the fact that untold numbers of children and adults with disabilities are affected by ongoing oral pain in their daily lives for what may have been weeks, months and beyond. The repeated screenings do demonstrate that significant numbers of individuals are referred to dental practitioners and receive the needed relief from pain and suffering. The ongoing publicity on the results of these screenings and referrals to practitioners may even reach legislators and produce the needed financial support.
Keep screening? Indeed!

ABOUT THE AUTHORS:
H. Barry Waldman, DDS, MPH, PhD – Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail:h.waldman@stonybrook.edu
Steven P. Perlman, DDS, MScD, DHL (Hon) – Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA.
Thaddeus J. Arnold, MPH is Manager, Research and Evaluation, Special Olympics International Misha Garey, DDS is Director of Dental Services at the Orange Grove Center.


References
1. Brown CB. What is a civilization, anyway? Web site: http://worldhistoryconnected.press.illinois.edu/6.3/brown.html Access December 4, 2014.
2. National Center for Health Statistics. Health United States: 2013. Delay or nonreceipt of needed medical care, nonreceipt of needed prescription drugs, or nonreceipt of needed dental care during the past 12 months due to cost, by selected characteristics: United States, selected years 1997–2012. Web site: http://www.cdc.gov/nchs/data/hus/hus13.pdf Accessed December 5, 2014.
3. National Center on Birth Defects and Developmental Disabilities. A tip sheet for public health professionals. Cost as a barrier to care for people with disabilities; oral health and people with disabilities. http://www.cdc.gov/ncbddd/documents/Disability%20tip%20sheet%20_PHPa_1.pdf Accessed December 4, 2014.
4.Hunter EG, Hancock J, Weber C, Simon M. Underserved farmers with disabilities: designing an AgrAbility program to address health dispariti4es. Journal Agromedicine 2011;16:99-105.
5. Harris R, Leininger L. Preventive care in rural primary practice. Cancer 1993;72(3 Suppl):1113-1118.

6. Special Olympics internal report and Special Olympics.2012 Reach Report. Web site: http://media.specialolympics.org/soi/files/resources/Communications/Annual-Report/2012_Special-
Olympics-Reach_Report.pdf Accessed November 14, 2014.
7. Special Olympics internal report and Special Olympics, 2014.
8. Multinational study of attitudes toward individuals with intellectual disabilities: 2003. Special Olympics. Web site: http://media.specialolympics.org/soi/files/healthy-athletes/Research-Studies/Multinational_Study.pdf Accessed December 9, 2014.

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