Promoting health for individuals with mental retardation.

As soon as you have children, make sure they have the best healthcare available. Every child is different, but if you take a proactive stance in promoting healthcare to ALL children, future problems can be eliminated, and they will have a lot more to offer to the community," said Loretta Claiborne, Special Olympics athlete and spokesperson.

Claiborne was one of a group of distinguished witnesses with expertise in the fields of mental retardation, healthcare, and physical fitness who gave testimony on March 5 as part of the Special Olympics presentation of its special report before the US Senate on the health status of people with mental retardation.

In relating her personal experiences, Loretta Claiborne told the Committee that in addition to the regular childhood illnesses, she had some serious health problems as a child, including a bad foot that barely allowed her to walk, let alone run. She also had severe problems with her eyes, which made it difficult for her to understand what was going on around her. She was shy and withdrawn, and did not speak until the age of 4. She was fortunate, however. Her mother and other people who cared about her fought to get her the corrective care she needed.

Clearly, that has turned out to be a good investment for her and a good investment for society. Today, Claiborne is a recognized athlete and her story has motivated others. She is a health "addict" and runs and exercises dally. She still has health challenges, which require her to fight the system every time she seeks medical attention. Her ailments are not related to mental retardation; they are common medical problems that do not require doctors to be experts in caring for a patient with special needs. They are medical problems that simply require a doctor to want to treat a person with disabilities.

"Not all people with mental retardation necessarily have the support system and advocates that I had. And unfortunately, people with mental retardation still face a lot of intentional and unintentional discrimination," says Claiborne.

Working toward healthcare parity for people with mental retardation

Founded in 1968 by Eunice Kennedy Shriver, Special Olympics is an international year-round program of sports training and competition for individuals with mental retardation. More than one million athletes in over 160 countries train and compete in 26 Olympic-type summer and winter sports. The Special Olympics program provides people with mental retardation continuing opportunities to develop fitness, demonstrate courage, and experience joy as they participate in the sharing of gifts and friendship with other athletes, their families, and the community. The health benefits of sports training and competition for those with mental retardation are widely acknowledged by family members and professionals in the fields of mental retardation, health, and sports.

"Over the last few years, Special Olympics has focused energy on this issue because we believe that health is related integrally to sport," says President and CEO of Special Olympics, Inc., Timothy Shriver. "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. In general, we are convinced that Special Olympics helps athletes become healthier."

Special Olympics is exerting leadership in the area of health for people with mental retardation because, to date, adequate leadership has not emerged from the healthcare or public policy communities. Moreover, while there has been some welcome progress in terms of increased life expectancy and quality of life for people with mental retardation over the past several decades, major health gaps remain and health improvement opportunities remain widely under-addressed.

To respond to the wealth of data on the health of people with mental retardation, Special Olympics commissioned a Special Report on the Health Status and Needs of Individuals with Mental Retardation. The purpose of this report is to identify opportunities that may be available, given current scientific knowledge and technology, to improve the quality and length of life for people with mental retardation, and most notably, Special Olympics athletes.

In one sense, the Report is an in-depth, scientifically supported "report card" on the health of people with mental retardation and the adequacy of programs, systems, and policies designed to assist those with mental retardation in living longer, better, and healthier lives. Specifically, the Health Report identifies the current health status and needs of people with mental retardation; describes policy and program gaps in healthcare and physical fitness; and offers recommendations to improve access to and the quality of healthcare for people with mental retardation. Consistent with policies of Special Olympics, the findings, conclusions, and recommendations in this Report have been shared with and reviewed by a number of Special Olympics athletes.

Special Olympics presented the Report directly to the leadership of the US Senate before its Senate Committee on Appropriations on the Health Status and Needs of People with Mental Retardation--the first of its kind devoted exclusively to the needs of people with mental retardation. Senator Ted Stevens, Chair of the Senate Committee, chaired the hearing and a panel of distinguished speakers with expertise in the fields of mental retardation, healthcare, and physical fitness testified. Witnesses who testified at the hearing included: US Surgeon General, David Satcher, MD; US Commissioner for the Administration for Developmental Disabilities, the Honorable Susan Swenson; Commissioner of Health for the State of Alaska, Karen Purdue; Professor of Psychology at the University of Alaska-Fairbanks, Judith Kleinfeld; Jeff Jesse of the Alaska Mental Health Trust Authority; Special Olympics Athlete, Pennsylvania, Loretta Claiborne; Special Olympics Athlete, Wisconsin, Cindy Bentley; President and CEO of Special Olympics, Inc., Timothy Shriver, PhD; Councilwoman, Huntington Park, California, Special Olympics Board Member, the Honorable Rosario Marin; and Arnold Schwarzenegger, former Chair of the President's Council on Physical Fitness and Sports.

Shriver said he was "stunned" to learn at the 1995 Special Olympics World Summer Games in Connecticut that 30 percent of the athletes had visual problems and 20 percent had severe pain despite having been seen by doctors. "In the best case scenario, many people with mental retardation get a 'quick and dirty,'" he told the US Senate Committee on Appropriations, describing the rapid, neglectful manner in which eye doctors often treat patients with mental retardation. "We can't win the struggle for equitable healthcare if the medical system is fighting against us," Shriver said. "In the year 2001, no American should be given a 'quick and dirty,' especially if the reason is blatant and unconscionable discrimination."

US Surgeon General Dr. David Satcher agreed with Shriver's recommendation that data be gathered on this population's needs. He also called for improving training and increasing the sensitivity of healthcare providers with regard to people with mental retardation. In an impromptu statement, he said he would call for a workshop comprising people with mental retardation and parents of those people "to find out what we know and don't know about this issue."

Special Olympics athlete Loretta Claiborne stopped reading her testimony mid-way to speak in heartfelt words to Senator Stevens about her own struggle to get quality medical care. She also spoke about her current situation, in which she cannot secure surgical treatment for her injured knee because of her disabilities and her healthcare provider's disregard for her situation.

Mayor of Huntington Park, California, and Chair of the California State Council on Developmental Disabilities, the Honorable Rosario Marin, said, "the time has come to shed light on what properly could be called a scandal. People with mental retardation suffer unnecessarily from preventable and manageable diseases and conditions. Their lives are shortened; their dignity diminished; their opportunities unduly denied. This hearing is extremely important for bringing critical issues to light."

"There's a black market in this country among parents of children with mental retardation," said Sue Swenson, Administration on Developmental Disabilities in the Administration for Children and Families in the Department of Health and Human Services. "When we find a physician who will see us, it's as if it was a secret resource."

"The harsh statistics and data contained in this report are sobering," says Arnold Schwarzenegger, actor and former chair of the President's Council on Physical Fitness. "People with mental retardation live an average of 10-20 years less than the general population. Individuals with mental retardation suffer from a wide range of chronic and acute diseases and conditions."

"It is my hope and dream," says Claiborne, "that within a decade, no person with mental retardation will live one day less because they were denied some treatment or care that was available to others. I want everyone to know that while I and others like me may learn slower or in different ways, that does not mean we are stupid or that we do not care about our health. When you design health education materials, think about us. When you create Web pages, think about us. When you teach doctors about caring for patients, think about us."

Some findings and recommendations of the Special Olympics' Special Report on the Health Status and Needs of Individuals with Mental Retardation:

* Individuals with mental retardation suffer from a wide range of chronic and acute diseases and conditions. In many instances, they experience more frequent and severe symptoms than the general population. This is not solely a result of the primary disability of mental retardation, but reflects more fully the totality of risk factors and risk reduction opportunities made available to or denied them.

* Evaluating isolated categorical health deficits or conditions in people with mental retardation through simple disease/condition comparisons with the general population is not, in itself, adequate for assessing health status or the need for health improvement. Health must be seen in overall functional terms, especially for populations with disabilities.

* Notwithstanding the increasing focus on personal and population health promotion and disease prevention, both in the US and elsewhere, people with mental retardation have received little consideration. Further, there is a scarcity of information on specific disease prevention and health promotion interventions that could improve the quality and length of life for people with mental retardation.

* Even in situations where people with mental retardation experience similar levels of disease to people without mental retardation, access to timely and appropriate healthcare often is not adequate and generally poorer than for the overall population. This leads to unnecessary suffering, functional compromise, and costs to individuals, families, and society.

* The majority of health professionals, who are otherwise qualified to treat people with mental retardation, fail to do so. This is largely the result of a lack of appropriate, specific training; inadequate reimbursement policies; fear; and prejudice.

The Report also makes recommendations to improve access to and the quality of healthcare for people with mental retardation. Among the recommendations are:

* All public and private programs, initiatives, and reports that address the health needs of the general public should explicitly examine the unique needs of people with mental retardation.

* An expert working group should be convened by the Secretary of the US Department of Health and Human Services to address equity gaps and opportunities that exist to better characterize the health needs of people with mental retardation. If necessary to stimulate action, public hearings should be convened by Congress to garner necessary focus and priority.

* A focused effort to create health literacy enhancement opportunities for people with mental retardation needs to be undertaken.

* The NIH (National Institutes of Health) and other federal agencies with a health research mission should allocate increased levels of funding to issues critical to understanding all dimensions of mental retardation, and where research opportunities exist, to pursue the prevention and rectification of the primary and secondary effects of mental retardation.

* Special Olympics should convene a blue ribbon corporate health advisory group to develop a strategic and integrated corporate strategy for maximizing the impact of corporate contributions (intellectual, technical assistance, in-kind, cash) for the betterment of people with mental retardation.

For the full Report and testimonies, log on to Special Olympics' Web site at:

http://www.specialolympics.org, and click on "Unprecedented Health Report"; or, contact Special Olympics at: 1325 G St., NW, Ste. 500, Washington, DC 20005. Phone: [phone]; Fax: [phone].