Check Ups At The Special Olympics
by Tim Shriver
The following is a statement by Timothy Shriver, Ph.D. President and CEO of Special Olympics, on the health status and needs of Individuals with mental retardation at the U.S. Senate Appropriations Committee Public Hearing in Anchorage, Alaska at the 2001 Special Olympics World Winter Games.
To my knowledge, never before has the Appropriations Committee of the United States Senate convened a hearing on issues related to people with mental retardation—in fact, I understand that this is the first hearing held by any Senate Committee completely dedicated to the needs of people with mental retardation. And for all of us in Special Olympics, this moment represents a first as well. Until today, we have never been offered the chance to speak directly to the leadership of the United States Senate about the hopes and needs and abilities of our athletes.
Six years ago, the Special Olympics World Summer Games were held in my home state of Connecticut. At those Games, all the traditional elements of Special Olympics were present: the pomp and ceremony, the cultures of the world on display in breathtaking traditional costumes and rituals, festivities and celebrations, inspiring competition, and moments of transformative family joy.
Those Games were also the first time that Special Olympics hosted a Healthy Athletes screening clinic to promote oral and vision health. Led by Drs. Steve Perlman and Paul Berman, teams of volunteer dentists and optometrists traveled from throughout the country to New Haven to provide screening services and basic health instruction to athletes. At the end of the week, I heard the results of what the medical professionals had seen and I was disgusted and shocked. Specifically, 85% of the athletes screened had refractive errors in their vision; 28% suffered from astigmatism, 25% had strabismus; 29% had general untreated visual problems and 23% of Special Olympics screened athletes failed a test for visual acuity, which is simply the ability to see clearly. Further, 27% of the athletes screened had not had an eye exam within three years.
On the oral health front, 68.1% of the athletes screened exhibited gingivitis and one in three athletes had active untreated dental decay. More than 20% reported pain in the oral cavity. Perhaps, most frightening, almost 15% of the Special Olympics athletes who chanced into the Healthy Athletes clinic, had to be referred to the Emergency Room due to untreated acute pain or disease. In short, World Games athletes who were otherwise thought to be fine, had suffered from such high levels of neglect that when exposed to a health professional, they were found to be sick and in some cases VERY sick. I couldn’t believe it.
In the days that followed, I learned more as I tried to find out how these athletes could be suffering so. Where were their doctors? Why had they not received attention? Who was negligent? And as I struggled to understand health insurance issues, medical training issues, epidemiology issues, pharmaceutical issues and more, I heard an explanation that I will always remember.
Dr. Paul Berman took me aside and explained. "Tim, in most cases doctors don’t want to treat these patients. They either don’t know how or they don’t see the money. But even when they do, it’s not real care. It’s a ‘down and dirty.’ Give a quick look, give them some glasses and send them on their way. They’re not driving or operating heavy machinery. They’re not reading or doing legal work. What difference does it make whether or not they see clearly? Get them in and get them out. That’s the attitude, Tim. I’m not proud of my profession, but that’s the way it is." "Down and Dirty." I’ll never forget those words. In the best case scenario, many people with mental retardation get a "down and dirty."
As I struggled to comprehend this reality, I began to understand that the health care problems I was discovering, were far bigger than Special Olympics but nonetheless part of the problem we were facing in promoting sports training and competition around the world. Quite simply, I realized that children and adults with mental retardation simply could not become athletes if they were sick, especially if they were sick because of neglect and indifference!
Over the last few years, Special Olympics has focused new energy on this issue because we believe that health is related integrally to sport. For years, we have known about the great benefits of participation in Special Olympics: increased skills, transformations in self-confidence and self-esteem, new family pride, changes in community attitudes and more. But we can’t win the struggle for equitable health care if the medical system is fighting against us! We can’t win if the standard is "down and dirty." In the year 2001, no American should be given a "down and dirty," especially if the reason is blatant and unconscionable discrimination. That simply should not be.
The report we offered the Senate Appropriations Committee provides galling evidence in literature from around the world that what we have seen in Special Olympics is no aberration. What it says is actually, a painful reminder of what we thought was a part of the past. We thought the days of isolation and discrimination were over. We thought that all the changes in institutions, in schools, in legal protections, and in housing had changed the situation for people with mental retardation across the board. But now we come face to face with the realization that the health care system has not been part of these changes in anything resembling an acceptable way. In short, the health care system in this country is full of negligence, indifference and blatant discrimination. And around the world, from what we can tell, the situation is not much better.
For example, our report states that in Western Europe and the United States, life expectancy is 74 to 76.5 years. Yet, depending on the severity of their condition, people with mental retardation have a life expectancy of only 53.5 to 66.1 years. The report finds that 39% of psychiatrists would prefer not to treat patients who have mental retardation. It finds that as few as 30% of individuals with mental retardation receive care from medical specialists despite the fact that a full 92% had medical needs that required specialty care. This report finds studies on the prevalence of mental retardation and other health conditions are scarce; that barriers to care are numerous and that private and public reimbursement policies are not only inadequate, but also discriminatory. The key question is what is next? What can be done?
First, Special Olympics must and will expand our Healthy Athletes program. For many athletes, the free screening clinics they attend at Special Olympics events are the only medical attention they will receive in the course of a year. When we started our work in the health field, we had no special plan for action. In 1995, we held six oral health clinics, and just one focusing on visual health.
Today, thanks to funding from a range of corporate sponsors and thanks to a strong partnership with The Lions Club Foundation, the Healthy Athletes program has taken off. This year, we will host 100 clinics; we will screen and advise 26,800 athletes; we will train nearly 5,000 health care professionals. And we will build the foundation to significantly expand all of these numbers in the years ahead.
Our commitment is clear. We will continue to focus on sports training and competition and it will remain our greatest contribution to enhancing the health of people with mental retardation around the world. But we will also build a strong Healthy Athletes program and we will do everything we can to demand the attention of health professionals and policy makers alike so that they end the pattern of exclusion, indifference and failure.
If we could find the funds, Special Olympics could screen 175,000 U.S. athletes every year for vision and oral health, hearing, dermatology and orthopedics. And even this number represents less than half of the number of athletes who compete at Special Olympics events in the U.S. each year. We could teach these athletes about health promotion, nutrition and wellness. We could improve the quality of life and perhaps the life expectancy for 175,000 athletes. I think we should set a goal of doing just that and the U.S. Department of Health and Human Service should assist us in this mission.
Second, all public and private programs, initiatives and reports that address the health needs of the general public should explicitly examine the unique needs of persons with mental retardation.
Third, specific health objectives for persons with mental retardation should be established by the U.S. government, consistent with the overall goals of Healthy People 2010 - namely, "to increase quality life years and to reduce the gaps in health status." Public schools are provided with a great opportunity to improve the health of school-aged individuals with mental retardation. By law, public schools are required to provide an Individualized Education Program (IEP) for every child with mental retardation. As part of each IEP, the health needs of children with mental retardation should be assessed and appropriate services accessed.
Finally, the Inspector General of the U.S. Department of Health and Human Services, as well as the Association of State Attorneys General, should evaluate whether the provisions of publicly funded and private health programs are providing equal or equitable protection to persons with disabilities, including those with mental retardation.
We must demand training programs for doctors and other care providers, fund data collection initiatives so that we can better understand prevalence and needs issues, and fund health prevention programs so that people with mental retardation are not dying 10-20 years earlier than the rest of the American population.
Let me remind policy makers around the world who may read the report, that here in Alaska, we are celebrating the giftedness of people with mental retardation. We will see their gifts as athletes, and we will see their gifts as human beings. We will see down hill skiers, speed skaters, and floor hockey champions. All of this celebration happens because these athletes were given a chance and when the chance came, how they seized the moment!
The lesson here is just that simple: give them a chance. All around the world, people with mental retardation are denied the simplest chance to belong. And yet, they bring gifts as unique as those of any other human being. And all they ask is if someone will give them a chance.
Visit the Special Olympics website at www.specialolympics.org for more information. | |