Special Olympics is the largest sports organization in the world serving athletes with intellectual disabilities. Because of their unique needs, Special Olympics has designed a multitude of programs specifically for athletes with intellectual disabilities, including the world’s largest public health screening program for people with intellectual disabilities known as the Special Olympics Healthy Athletes® Program. This article describes the Healthy Athletes program and some of the results of the program within the context of impacting health care professional education with respect to athletes with intellectual disabilities.
Special Olympics Sports Programs
The Special Olympics movement had its humble beginnings as a sports camp for people with intellectual disabilities in the backyard of Eunice Kennedy Shriver. Mrs. Shriver had a personal connection with intellectual disabilities through her sister, Rosemary Kennedy, who had what would be considered today to be intellectual disabilities. It was because of this personal connection that Mrs. Shriver understood in the early 1960s what much of society during that time did not — that people with intellectual disabilities were capable of achieving much more than was evident by the opportunities they were given.
In 1968, the sports camp that Eunice Kennedy Shriver started became the first ever Special Olympics Summer Games. The Games were held at Soldier Field in Chicago, Illinois. The pictures from that event reveal much about the societal attitudes of the time. While around 1,000 athletes from the United States and Canada came to participate in that particular event, it was lightly attended by spectators (9). Still, the movement grew. In 1977, the first Special Olympics World Winter Games were held in Steam Boat Springs, Colorado. In 1993, Special Olympics held its first World Games outside the United States. In that year, Austria hosted the Winter World Games for nearly 1,600 athletes from 50 countries (14).
Today, Special Olympics is a year-round sports organization that serves more than 4.4 million athletes around the world in more than 170 countries. Special Olympics is one of the largest sports organizations in North America, with more than 700,000 athletes (12). By comparison, the National Collegiate Athletic Association has approximately 460,000 athletes (10). In July 25 to August 2, 2015, the United States will host the World Summer Games in Los Angeles, California. At these Games, more than 7,000 athletes from 177 countries will participate (17).
Currently, Special Olympics offers a number of official sports including alpine skiing, aquatics/swimming, athletics, badminton, basketball, bocce, bowling, cricket, cross-country skiing, cycling, equestrian, figure skating, floor hockey, floorball, football (soccer), golf, gymnastics (rhythmic and artistic), handball, judo, kayaking, netball, open-water swimming, powerlifting, roller skating, sailing, snowboarding, snowshoeing, softball, speed skating, table tennis, tennis, triathlon, and volleyball (16).
Special Olympics Nonsports Programs
Although Special Olympics is at its heart a sports program, because of the unique needs of its athletes, Special Olympics has developed a number of nonsports programs that have been designed to benefit athletes with intellectual disabilities both on and off the field of play. A few of these programs are described in the following section.
Unified sports are competitive sports between teams of players with and without intellectual disabilities. Athletes of all ages, any gender, and all ability levels participate. The rules are the same as those for regular Special Olympics sports competitions except that officials and coaches are aware that if there are dominant players who would usurp the team concept, they must be managed.
The R Word Campaign
Started by a number of young volunteers to Special Olympics, the R Word Campaign is designed to get people to stop using the terms “retard” or “retarded.” Every year, there is a “Spread the Word to End the Word” day around the world. Millions of youth, including medical and other health professions students, have signed the pledge not to use such hurtful words. In the medical profession, this means using the term “intellectual disabilities” instead of the older term “mental retardation.”
Special Olympics Get into It
This is a curriculum designed for classrooms, which provides a series of lesson plans about intellectual disabilities, differences, how to be inclusive, and examples of people with intellectual disabilities who have been very successful.
Project UNIFY was created in 2008 in partnership with the U.S. Department of Education. Its purpose is to create school communities of welcome for students with intellectual disabilities and students who have other differences. It is operating in 3,000 schools across 46 U.S. states and 5 other countries, with other states and countries preparing to join. The program educates, changes attitudes, changes priorities in schools, generates friendships, and improves school climate. To be a true Project UNIFY school, there must be leadership by youth with and without intellectual disability, Unified Sports programming, and whole school involvement, meaning that it cannot be an isolated, small, club-like undertaking.
This program responds to the needs of families with preschool children (2.5 to 7 years) with intellectual disabilities. Through an 8-wk, 3-sessions-per-week protocol, preschool children with intellectual disability can achieve 8 months of motor development compared with only 2.5 months in comparison groups not receiving the program. Young Athletes gives young children with intellectual disability a head start, prepares them for continuing physical activity in school, and offers hope to their families. It also allows children without intellectual disability to develop in an inclusive environment.
Motor Activity Training Program
The Motor Activity Training Program (MATP) is designed for those individuals who are so severely affected by intellectual and often motor constraints that they are not able to participate in regular sports programming. Athletes in MATP have very individualized programs of activity based on their capabilities. Their successes are every bit as exciting as those of their fellow athletes in regular programming, and their human commitment to their activities is unparalleled.
Athlete Leadership basically recognizes that people who can participate in sports also can succeed in other things. They can be officials, technical delegates, coaches, counselors, managers, board members, employees, etc. ALP training and experiences prepare athletes for expanded roles both within the Special Olympics and in the broader world.
Camp Shriver was reborn a few years ago as Eunice Shriver wished that the early successes of Special Olympics could once again fuel another stage of development and give more youth with and without intellectual disabilities a chance to learn from each other through sports and other typical camp activities. Typically, Camp Shriver is implemented by Special Olympics during summer months when regular Special Olympics programming is at an ebb, but these camps can be implemented any time. Most are day camps operating for 1- or 2-wk periods.
Special Olympics University
Special Olympics University is a program operated at colleges and universities for the purposes of educating about intellectual disability, directly serving people with intellectual disability, and developing leaders who may go on to select work in a disabilities field as their profession or continue to serve as community leaders to support people with intellectual disabilities.
Special Olympics Healthy Athletes Program
In addition to the programs described previously, one of the most robust programs that Special Olympics has developed in recent years is its Healthy Athletes program. The Healthy Athletes program is the largest public health screening program of people with intellectual disabilities in the world. This program has performed more than 1.4 million screenings in more than 128 countries around the world. The Healthy Athletes program consists of seven core disciplines, currently as follows: Special Olympics-Lions Clubs International Opening Eyes (vision), Special Smiles (dentistry), FUNFitness (physical therapy), Fit Feet (podiatry), Healthy Hearing (audiology), Health Promotion (healthy lifestyles), and MedFest (sports physicals) (5).
Healthy Athletes screening events are most often held at the local level. That is to say that Special Olympics Kentucky, for example, will hold its Health Athletes screenings at its Special Olympics Kentucky Summer Games event. Participation at these health screenings is completely voluntary, and they are always free to the athlete. The methodology for each discipline’s screening program is standardized. Each discipline is overseen by a local lead volunteer who has been designated by Special Olympics as a “clinical director” for that discipline. In order for a volunteer clinician to be designated as a clinical director, they must be credentialed in their field and go through a special training process.
The Special Olympics Healthy Athletes Program differs from routine mass preparticipation physical events that many sports medicine physicians might be familiar with. The greatest differences are simply the depth of the screening process and the time it takes to complete. Each of the seven Healthy Athletes disciplines takes approximately 30 to 45 min for the athlete to complete. So, if there happened to be an event with all seven disciplines running simultaneously, an athlete could spend 4 h or more in the screening area. The reason for the significant time involved is because each discipline does a nearly complete assessment consistent with their standards of practice. So, for example, while in a standard sports physical examination, the vision examination performed by the physician might be a cursory check to make sure that they can see 20/40 or better in each eye, in the Opening Eyes program, athletes will have their color vision, stereo vision, and intraocular pressure checked. Their eyes will be evaluated so extensively that a prescription for corrective eyewear can be given at the screening venue, and oftentimes, that prescription can be filled through a mobile vision laboratory on site. In other words, the athlete will come away from the program with a new pair of properly corrected glasses. Because going through all of the disciplines at Healthy Athletes may not be practical for most athletes, athletes and their families or coaches will often prioritize the venues they will visit based on the athlete’s needs or interests.
The Healthy Athletes discipline that most closely resembles the mass preparticipation physical events that most sports medicine physicians are familiar with is the MedFest program. The MedFest screening protocols take about 30 min for an athlete to complete. They are based on the standard preparticipation physical examination protocols but have been enhanced through a lengthy review process to include areas of concern that are more prevalent in the Special Olympics athlete population, such as spinal cord compression, cardiac defects, seizure disorders, and behavioral issues.
The clinical director of each Healthy Athletes discipline is the person who is responsible for the program’s adherence to the screening standards set forth by Special Olympics. This includes utilizing the standardized forms used for collecting athlete health information. This information is then collated and stored in a database. Over the past 15 years, data from these screenings have been aggregated in order to further the public understanding of the unmet health needs faced by people with intellectual disabilities around the world.
While there is significantly more depth to the health screening data than those that are reported here, the following Table shows some of the powerful statistics from the Healthy Athletes program.
Medicine and Intellectual Disabilities
Over the past eight decades, the life expectancy for a person with an intellectual disability has been increasing significantly. For example, in 1929, the average person with Down syndrome was expected to live just 9 years (7). Today, people with Down syndrome commonly live into their 50s, 60s, or 70s (11). This increased life expectancy of people with intellectual disabilities is creating a fundamental demographic shift in which larger and larger numbers of people with intellectual disabilities are living into adulthood and, therefore, developing adult medical concerns (8). The problem, however, is that the medical field has not kept up with the demographic shift. While there is a subspecialty of pediatrics known as developmental pediatrics (that is, a focus specifically on children with intellectual and developmental disabilities), there is no such counterpart in adult medicine.
In 2007, the Special Olympics and the American Academy of Developmental Medicine and Dentistry performed a survey of medical schools and residency programs in the United States. The most striking finding of this survey was that 81% of graduating medical students had received no training with respect to caring for adults with intellectual disabilities (6). This survey was performed shortly after the Surgeon General’s report of 2002, which described the significant unmet health needs of people with intellectual disabilities. In his report, the Surgeon General specifically stated that lack of training was a contributing factor (18).
Recognizing the significant health care quality and access problems facing people with intellectual and developmental disabilities, both the American Medical Association and the American Dental Association have, in recent years, passed resolutions stating that the federal government should designate this population officially as being medically underserved (2,3).
It is in this context of the current state of medicine and medical training with respect to people with intellectual disabilities that the relevance of the Healthy Athletes program becomes more apparent. One of the major reasons why there are such significant unmet health needs in this underserved population is that physicians do not have experience in providing care to patients with intellectual disabilities. However, the Special Olympics Healthy Athletes program affords physicians and other health care providers a unique opportunity to come into contact with a large number of people with intellectual disabilities. In fact, it is likely that they will come into contact with more people with intellectual disabilities during one day of volunteering at Special Olympics than they will come into contact with during the entire course of their medical training.
It should be noted that in addition to having a relationship with a local Special Olympics, there are a number of approaches that sports medicine and primary care residency programs may take in order to better incorporate training with respect to athletes with intellectual disabilities into their curricula. The American Academy of Developmental Medicine and Dentistry has developed a curriculum document that outlines important learning goals and objectives for physician in training. This is available for free on their Web site (1). Additionally, a few residency programs around the country have piloted different teaching methodologies, such as training patients with disabilities to teach residents, sending residents to visit with patients with disabilities inside their home, and recording patient encounters in order to review them and learn from the critique.
While the depth of each of these programs may vary, there are some very basic core requirements for implementing meaningful curriculum change. Namely, the program must have a champion who will drive and foster that curriculum change. Additionally, the program must have a connection to the intellectual disability community, that is, it must have access to patients with intellectual disabilities in a volume significant enough to produce memorable interactions for the residents providing their care.
Athletes With Intellectual Disabilities
While it is the presence of intellectual disability that is the common thread that unites all Special Olympics athletes, intellectual disability itself is a significantly more complex diagnosis than most physicians realize. One analogy that is often used to illustrate this is that of shortness of breath. Shortness of breath is a common symptom that can result from a large number of underlying disease states and, depending on the underlying cause, can co-occur with other significant disease states as well. Similarly, intellectual disability is a common characteristic that many people share, although it can be caused by a large number of underlying disorders. To understand this better, we must start at the underlying cause.
The underlying cause of intellectual disability is, by definition, a neurodevelopmental disorder. A neurodevelopmental disorder is a process that adversely effects the normal development of the brain prior to the onset of adulthood. This may be a genetic process (as in Trisomy 21 or Fragile X syndrome), or it may be an acquired process (as in fetal alcohol spectrum disorder or hypoxic brain injury). There are likely thousands of neurodevelopmental disorders. In many cases, the underlying neurodevelopmental disorder is not known by the patient or their family. In these cases, it is often assumed that the underlying neurodevelopmental disorder is possibly a novel genetic syndrome or an idiopathic pre- or perinatal injury; however, as modern medicine advances, it is expected that more neurodevelopmental disorders will be identified and diagnosed.
Because neurodevelopmental disorders affect the developing brain and nervous system, they tend to have common characteristics depending on which parts of the brain they affect. In general, the common consequences of a neurodevelopmental disorder can be divided up into five main categories, as follows: 1) intellectual disability, 2) sensory deficits, 3) seizure disorders, 4) neuromotor dysfunction, and 5) abnormal behaviors.
While the definition has undergone some recent revisions lately (4), the most practical definition includes people who have an IQ that is two standard deviations below the mean and have significant limitations in adaptive behavior (such as activities of daily living, communication, or handling money, etc.).
Most often, these include vision and hearing deficits. It should be noted that there has been a very errant myth sometimes propagated in the medical field that some people with intellectual disabilities do not feel pain or perhaps have a higher pain tolerance than neurotypical people. There really is no evidence to support this. What is likely the cause of this misconception are the communication differences that exist in people with intellectual disability and thus the differences in the expression of pain that might accompany them.
It is estimated that approximately 25% of Special Olympics athletes have some kind of seizure disorder.
A purely neuromotor impairment caused by a neurodevelopmental disorder is often labeled as cerebral palsy. It should be noted that the presence of neuromotor impairment of this kind does not always indicate the presence of intellectual disability.
Most often, these might be classified as attention deficit hyperactivity disorder, autistic behaviors, self-injurious behaviors, or aggressive behaviors.
While the specific correlation rates between intellectual disability and each of the other four common complications of neurodevelopmental disorders may differ slightly, an easy-to-remember approximation is that somebody with an intellectual disability has an approximately 25% chance of also exhibiting each of the other common consequences. However, of course, an individual with an intellectual disability may have no other common consequences or they may have all four and in varying degrees.
Aside from the common complications described previously, neurodevelopmental disorders also may have syndrome-specific complications. These may be physical characteristics that affect other body systems and may occur in higher frequency because of the presence of a particular syndrome. For example, Down syndrome has a number of well-known syndrome-specific conditions such as cardiac defects, thyroid disease, immunological deficiencies, and periodontal disease.
Both the common complications of a neurodevelopmental disorder and syndrome-specific conditions can lead to secondary health consequences. For example, a person with a high level of neuromotor dysfunction may be predisposed to developing pressure ulcers or may be unable to care for their teeth and thus may be at a higher risk of developing dental disease (13).
Other health consequences worth mentioning are those that are iatrogenic. People with intellectual disability often face polypharmacy and a variety of unwanted adverse effects from chronic medication administration. For example, medications that control seizures often have deleterious effects on bone density, and certain classes of psychiatric medications often induce weight gain. Understanding the adverse effects of medications and their effects on athletic performance is one of the more unique challenges in assessing this athlete population.
Understanding the societal context of Special Olympics, its relevance to the medical field, and some of the unique health aspects of Special Olympics athletes is important. But what truly makes the Healthy Athletes experience unique from other public health programs is how the Healthy Athletes program reaches its athletes. To sum it up with a single word, it is “respect.”
From the moment an athlete enters the Healthy Athletes venue at a Special Olympics event, they feel welcomed and respected by the clinicians who are there to serve them. It should be noted that while many Special Olympics athletes might have difficulties with expressive communication, their receptive communication skills are sometimes better developed than most people. Because of this, it is important for clinicians to be cognizant of what they are communicating both verbally and nonverbally.
In an effort to help first-time volunteers acquaint themselves with better communication skills, the Special Olympics MedFest program often includes specific training with respect to communication during clinical training sessions. These guidelines help clinicians better communicate with people with intellectual disability. In general, they are as follows:
- 1) Speak directly to the athlete.
- 2) Shake their hand and identify yourself.
- 3) Wait until you are acknowledged before proceeding.
- 4) Treat adults like adults.
- 5) Listen carefully to people who have trouble speaking and let them finish.
- 6) Speak to a person at eye level even if they are in a wheel chair.
- 7) Relax and be cognizant of what you communicate nonverbally.
It is almost dogma in the medical field that most diagnoses can be discovered through proper information gathering. Experience with the Healthy Athletes program provides clinical volunteers the opportunity to enhance their ability to obtain pertinent health information from people with intellectual disabilities. Ultimately, it is the hope of the Special Olympics that clinicians will be able to take what they learn from the Healthy Athletes program and apply it to their everyday practice, so that the unmet health needs that have been identified by the program will begin to be addressed.
Special Olympics is always looking for physicians to volunteer their services. Physicians can help their local Special Olympics programs by providing medical coverage at sports events, by helping them plan medical services at major events, by volunteering at Healthy Athletes events or MedFest events, and even informally volunteering time at their offices to provide sports physicals to Special Olympics teams. In order to get involved, a physician need only contact their local Special Olympics program (15).
Athletes with intellectual disabilities are medically underserved and have a high degree of unmet health needs. The Healthy Athletes program was designed to help quantify those unmet health needs by providing an opportunity to bring athletes with intellectual disabilities together with clinicians who are interested in making a difference in their care. Athletes who participate in the program benefit by potentially having a number of unmet health needs identified. Physicians who volunteer for the program benefit not only by learning about the unmet health needs of athletes with intellectual disabilities but also by enhancing their communication skills and broadening their perspective about the abilities and possibilities that people with intellectual disabilities have.
No funds were received directly for this work; however, it should be noted that I am a paid consultant for Special Olympics International.