REPORT OF THE SURGEON GENERAL'S WORKSHOP ON FHILDREN WITH HANDICAPS AND THEIR FAMlL[ CASE EXAMPLE: THE VENTILATOR- Presented by the U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Public Health Service Health Resources and Services Administration Bureau of Health Care Delivery and Assistance Division of Maternal and Child Health In Conjunction With THE CHILDREN'S HOSPITAL OF PHILADELPHIA DECEMBER 13TH AND 14TH 1982 M-6 PUBLICATION NO. PHS-@3-50194 It is profound& important for our society that we tend to these issues of disabled children, that these children not be forgotten or pushed aside, and that we retain our belief in the strength of the American family. -C. EVERETT KOOP, M.D. SURGEON GENERAL The Surgeon General's Workshop on Children With Handicaps and Their Families was supported by grants from the U.S. Department of Health and Human Services, The Widener Memorial Foundation, and Heron Respiratory Services, Inc. Photos Courtesy of The Children's Hospital of Philadelphia THE WHITE HOUSE December 10, 1982 Dear Friends: This brings my special greetings to each of you participating in the Surgeon General's Workshop on Children with Handicaps and Their Families. I want to encourage you in this very important endeavor. For many children facing physical difficulties, there is no place like home and no substitute for being close to a loving fam- ily. I am hopeful that ways can be found to make it possible for many more children on life-supportive devices to go home. It will mean more than we know to both the children and their parents. The entire family will derive untold strength from being together. I thank you from the bottom of my heart for your interest in helping our special children. You have my warmest best wishes for a success- ful workshop. Sincerely, The Surgeon General's Workshop on Children with Handicaps and Their Families The Children's Hospital of Philadelphia Philadelphia, Pennsylvania PREFACE The Surgeon General's Workshop on Children With Handicaps and Their Families recognizes our continuing interest in assisting the family as the prime source of nurture, support, protection, and guidance to the grow- ing child. Children with handicaps and their families frequently require long-term medical, social, educational, vocational, habilitative, and com- munity service assistance. This concept is essential to the provision of com- prehensive services to children with special needs. Families of these children, including siblings, often need significant psy- chosocial support, but community support services are often lacking or not visible. Without the needed support, the family will have difficulty in help- ing the child, a growing individual moving through predictable developmen- tal stages, achieve maximum development within the limitations imposed by a disability. The goal of the participants at this Surgeon General's Workshop was to develop recommendations for strategies to recognize the special burden and challenges borne by the parents and siblings of children with disabililties and to stimulate the provision of resources to safely support these children in their communities. The achievement of this goal will, ideally, minimize the problems of children with disabilities. C. Everett Koop, M.D. Surgeon General . . . 111 - 1 ,a-. . PLANNING COMMITTEE Planning Committee for the Surgeon General's Workshop on Children With Handicaps and Their Families WORKSHOP CHAIRMAN WORKSHOP DIRECTOR COMMITTEE MEMBERS Robert G. Kettrick, M.D. Department of Anesthesiology and Critical Care The Children's Hospital of Philadelphia Merle G. McPherson, M.D. Medical Officer Division of Maternal and Child Health Department of Health and Human Services Michael D. Batten White House Aide Presidential Correspondence The White House Shirley Bonnem Vice President The Children's Hospital of Philadelphia Camille Cook, M.S. Nursing Consultant Division of Maternal and Child Health Department of Health and Human Services Glenna Crooks, Ph.D. Deputy Assistant Secretary for Health Planning and Evaluation Public Health Service Washington, D.C. Judson Force, M.D. Chief, Division of Crippled Children Services Department of Health and Mental Habilitation Baltimore, Maryland V COMMIT-I `EE MEMBERS Allen I. Goldberg, M.D. (continued): Director, Division of Respiratory Care Children's Memorial Hospital Chicago, Illinois Alfred Healy, M.D. Chairman, Division of Developmental Disabilities University Hospital School University of Iowa Iowa City, Iowa Vince L. Hutchins, M.D. Director, Division of Maternal and Child Health Department of Health and Human Services Rockville, Maryland Anne Keller, M.D. Director, Division of Rehabilitation Bureau of Professional Health Services State Department of Health Harrisburg, Pennsylvania John MacQueen, M.D. Iowa Specialized Child Health Services University of Iowa Hospitals and Clinics Iowa City, Iowa Phyllis R. Magrab, Ph.D. Director, Child Development Center Georgetown University Hospital Washington, D.C. Benjamin K. Silverman, M.D. Co-Editor, Clinical Pediatrics Princeton, New Jersey Phyllis Zucker, M.P.H. Chief, Resources Branch Division of Policy Analysis Office for Health Planning and Evaluation Washington, D.C. vi WORKSHOP PROGRAM December 13, 1982 8:oo a.*. - I I:45 a.m. Plenary Session Joseph Stokes Auditorium The Children's Hospital of Philadelphia Presiding Merle G. McPherson, M.D. Chief, Habilitative Services Branch Division of Maternal and Child Health United States Department of Health and Human Services-Public Health Service Welcome Noel E. Kroncke, President The Children's Hospital of Philadelphia Ginny Thornburgh Advocate for the Handicapped James A. O'Neill, Jr., M.D. Surgeon-in-Chief The Children's Hospital of Philadelphia Thomas W. Langfitt, M.D. Vice President for Health Affairs University of Pennsylvania 8:30 a.m. Keynote and Charge Robert G. Kettrick, M.D. Director, Pediatric Intensive Care Unit Intermediate The Children's Hospital of Philadelphia C. Everett Koop, M.D. Surgeon General 9:00 a.m. Ventilator-Dependent Children: The Problem Robert G. Kettrick, M.D. 9:45 a.m. The Child at Home Mrs. Bette Wartenberg Parent of a Ventilator-Dependent Child Joliet, Illinois IO:45 a.m. Comprehensive Repmnahzed Care: New York Exnerience Mathew H.M.Lee. M.D. Professor and Director, Howard A. Rusk Resoirator Rehabilatation Medicine Depar'tment of Rehabilitative Medicine New York University Medical Center Goldwater Memorial Hospital New York, New York vii ll:IS a.m. Towards a Consortium: The Illinois Approach I I:45 a.m. Question Period 12:IS p.m. Presidmg Invocation Children with Disabilities- Implications for Care 2:00 p.m. Background for Work Group Discussion 2:30 - 5:30 p.m. December 14, 1982 8:fKl a.m. 2:00 p.m. - 5:00 p.m. Plenary Session- Summation Presiding Presentations from Wc Groups Synthesis of Recommendations Presentation to Surgeon General Acceptance of Recommendations Conclusion Allen I. Goldberg, M.D. Director, Division of Respiratory Care Children's Memorial Hospital Chicago, Illinois Arthur F. Kohrman. M.D., Director LaRabida Children's Hospital and Research Center Chicago, Illinois Eugene Bilotti, Administrator Supplemental Security Income (SSI) Disabled Children's Program Springfield, Illinois Morning Speakers Luncheon Salons A and B Hilton Hotel of Philadelphia C. Everett Koop. M.D The Reverend William Atkinson. O.S.A. Alfred Healy. M.D. Chairman, Division of Developmental Disabilities University Hospital School Universtty of Iowa Iowa City, Iowa Phyllis R. Magrab. Ph.D. Director, Child Development Center Georgetown University Hospital Washington, D.C. Workshops Work Groups Joseph Stokes Auditorium The Children's Hospital of Philadelphia Robert G. Kettrick, M.D. ,rk John MacQueen, M.D. Director Iowa Specialized Child Health Services University of Iowa Hospitals and Clinics Iowa City, Iowa Robert G. Kettrick. M.D. C. Everett Koop, M.D. Richard D. Wood, Chairman Board of Managers The Children's Hospital of Philadelphia . . . Vlll CONTENTS Page INTRODUCTION.. ......................................... WELCOMING ADDRESS .................................... EXCERPT FROM KEYNOTE ADDRESS. ...................... PRESENTATIONS OF PROGRAMS FOR CARE OF VENTILATOR-DEPENDENT CHILDREN. .................. The Pennsylvania Program .................................. The New York Experience ......... i. ........................ The Illinois Plan ........................................... TheChildatHome ......................................... WORK GROUP RECOMMENDATIONS ....................... Introduction to Work Groups ................................ Recommendations. ......................................... CHILDREN WITH OTHER HANDICAPS ..................... Children with Disabilities: Implications for Care ................ Implications for Care: The Title V Perspective .................. Implications of Workshop Recommendations .................. SUMMARY OF THE WORKSHOP ............................ APPENDICES A-Participants. ........................................... B-Facilitators and Recorders. ............................... C-Prototype Home Program Review for Ventilator-Dependent Children ........................ D-Selected Readings. ...................................... 11 11 17 20 27 31 31 32 41 41 48 50 53 56 62 63 67 ix