S. HRG. 107–92 SPECIAL OLYMPICS REPORT HEARING BEFORE A SUBCOMMITTEE OF THE COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE ONE HUNDRED SEVENTH CONGRESS FIRST SESSION SPECIAL HEARING MARCH 5, 2001—ANCHORAGE, ALASKA Printed for the use of the Committee on Appropriations ( Available via the World Wide Web: http://www.access.gpo.gov/congress/senate U.S. GOVERNMENT PRINTING OFFICE 71–288 PS WASHINGTON : 2001 For sale by the U.S. Government Printing Office Superintendent of Documents, Congressional Sales Office, Washington, DC 20402 COMMITTEE ON APPROPRIATIONS TED STEVENS, Alaska, Chairman THAD COCHRAN, Mississippi ROBERT C. BYRD, West Virginia ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii PETE V. DOMENICI, New Mexico ERNEST F. HOLLINGS, South Carolina CHRISTOPHER S. BOND, Missouri PATRICK J. LEAHY, Vermont MITCH MCCONNELL, Kentucky TOM HARKIN, Iowa CONRAD BURNS, Montana BARBARA A. MIKULSKI, Maryland RICHARD C. SHELBY, Alabama HARRY REID, Nevada JUDD GREGG, New Hampshire HERB KOHL, Wisconsin ROBERT F. BENNETT, Utah PATTY MURRAY, Washington BEN NIGHTHORSE CAMPBELL, Colorado BYRON L. DORGAN, North Dakota LARRY CRAIG, Idaho DIANNE FEINSTEIN, California KAY BAILEY HUTCHISON, Texas RICHARD J. DURBIN, Illinois MIKE DEWINE, Ohio TIM JOHNSON, South Dakota MARY L. LANDRIEU, Louisiana STEVEN J. CORTESE, Staff Director LISA SUTHERLAND, Deputy Staff Director JAMES H. ENGLISH, Minority Staff Director SUBCOMMITTEE ON DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES ARLEN SPECTER, Pennsylvania, Chairman THAD COCHRAN, Mississippi TOM HARKIN, Iowa JUDD GREGG, New Hampshire ERNEST F. HOLLINGS, South Carolina LARRY CRAIG, Idaho DANIEL K. INOUYE, Hawaii KAY BAILEY HUTCHISON, Texas HARRY REID, Nevada TED STEVENS, Alaska HERB KOHL, Wisconsin MIKE DEWINE, Ohio PATTY MURRAY, Washington MARY L. LANDRIEU, Louisiana ROBERT C. BYRD, West Virginia (Ex officio) Professional Staff BETTILOU TAYLOR MARY DIETRICH JIM SOURWINE ELLEN MURRAY (Minority) Administrative Support CORREY DIVINEY CAROLE GEAGLEY (Minority) (II) CONTENTS Page Opening statement of Senator Ted Stevens .......................................................... 1 Statement of Cindy Bentley, Special Olympics athlete, Wisconsin, USA ........... 3 Prepared statement .......................................................................................... 4 What is Special Olympics? ............................................................................... 4 Statement of Timothy Shriver, Ph.D., president and CEO, Special Olympics, Inc. ......................................................................................................................... 5 Prepared statement .......................................................................................... 8 Statement of David Satcher, M.D., U.S. Surgeon General, U.S. Public Health Service, Department of Health and Human Services ....................................... 12 Prepared statement .......................................................................................... 15 Statement of Sue Swenson, Commissioner of the Administration for Develop- mental Disabilities, U.S. Department of Health and Human Services ........... 18 Prepared statement .......................................................................................... 20 Statement of Karen Perdue, commissioner, Alaska Department of Health and Social Services ............................................................................................... 26 Prepared statement .......................................................................................... 29 Statement of Jeff Jessee, Alaska Mental Health Trust Authority ...................... 57 Prepared statement .......................................................................................... 59 Statement of Judith Kleinfeld, professor, University of Alaska, Fairbanks, AK .......................................................................................................................... 63 Prepared statement .......................................................................................... 65 Statement of Loretta Claiborne, PA, Special Olympics athlete and global messenger ............................................................................................................. 67 Prepared statement .......................................................................................... 69 Statement of Hon. Rosario Marin, councilwoman, Huntington Park, CA .......... 70 Prepared statement .......................................................................................... 72 Statement of Dr. Steve Perlman, global clinical director, Special Olympics, Special Smiles Program ....................................................................................... 74 Statement of James E. Ervin, Albany, GA, Lions Club International ................ 74 Statement of Arnold Schwarzenegger, chairman, President’s Council on Phys- ical Fitness ............................................................................................................ 75 Prepared statement .......................................................................................... 78 Promoting Health for Persons With Mental Retardation—A Critical Journey Barely Begun ........................................................................................................ 80 The Health Status and Needs of Individuals With Mental Retardation ............ 91 Prepared statement of Jane V. White, president, American Dietetic Associa- tion ........................................................................................................................ 156 Prepared statement of Paul Berman, global clinical director, Special Olympics Lions Clubs International Opening Eyes ........................................................... 158 Questions submitted by Senator Ted Stevens to: James Ervin ...................................................................................................... 159 Dr. Timothy Shriver ......................................................................................... 161 Dr. Steve Perlman ............................................................................................ 162 Dr. David Satcher ............................................................................................. 164 (III) SPECIAL OLYMPICS REPORT MONDAY, MARCH 5, 2001 U.S. SENATE, SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES, COMMITTEE ON APPROPRIATIONS, Anchorage, AK. The subcommittee met at 10:05 a.m., in Sheraton Anchorage Hotel, Anchorage, AK, Hon. Ted Stevens presiding. Present: Senator Stevens. OPENING STATEMENT OF SENATOR TED STEVENS Senator STEVENS. Thank you all very much. I noticed the bul- letin board as we came in said the downhill is canceled for bad weather. Welcome to all the skiers. Today our Committee on Appropriations is convening this special field hearing of the Subcommittee on Labor and Human Services and Education to receive from the Special Olympics the report on the health status and needs of persons with mental retardation. I have here with me Bettilou Taylor, who is the chief clerk of that subcommittee. The chairman is Senator Arlen Specter, and I am conducting the hearing today for him. I understand that many of you have important information to present to us today. Before you do, I want to express my apprecia- tion to the Special Olympics for holding the 2001 Special Olympics World Winter Games here in Anchorage. That was a marvelous be- ginning last night, and I want to thank my son Ben, the president and CEO of the 2001 Special Olympics, the World Winter Games Organizing Committee, Patty McGuire, who is the president and the board of the Special Olympics World Winter Games here in An- chorage. It has been a long trail to this time, and everything is coming together in a marvelous way. We are here today to receive the report and hear from some wit- nesses who will help us understand the special health needs of per- sons with mental retardation. It is worth noting the remarkable history behind this organization. The Special Olympics began in 1968, when Eunice Kennedy Shriver organized the First Inter- national Special Olympics, held at Soldiers Field in Chicago. You might say that the flame that lights the Special Olympics was sparked by Ms. Shriver at that time, in her deeply held convic- tion that individuals with mental retardation are far more capable in sports and physical activities than experts were willing to recog- nize then. We are honored to have with us today Eunice and Sar- gent Shriver. Thank you very much for being here. (1) 2 I might say, as some of you know, I was on the other end of that situation. I was raised by my aunt and uncle, who had a daughter with mental retardation, and I saw then how people with those conditions were treated in the days of the thirties and forties. It is a wonderful change that has been brought about today. All of us who have family members, Ms. Shriver, thank you very much for all you have done to bring attention to this condition. Fueled by her vision, the Special Olympics has grown into an international program of year-round sports training and athletic competition for 1 million children and adults with mental retarda- tion. Special Olympics programs now exist in 160 nations. New pro- grams are continuing to be developed around the world. The only thing more remarkable than the Special Olympics itself are the people