care will be required to assist those disabled children with complicated or life-threatening conditions, or who require highly specialized tertiary care. 4. Improve Financing of Care The service system must adequately compensate providers and consumers using out-of-hospital facilities which are close to the patients' home com- munity and which meet established care standards. Funding mechanisms must also be made available for expensive out-of-hospital technical equip- ment that reduces the length of hospital stays. Planning and coordination of community services for complicated and serious disabililties must be recog- nized as a legitimate reimbursable expense. 5. Identifr Areas of Abuse Potential Actions and inactions can both contribute to abuse of the care system for the disabled child. Elimination of unnecessary, duplicated or inappropriate services assure quality care and control costs. Standards and regulations must be developed and monitored by qualified professionals familiar with the service delivery issues. Methods to provide parents and providers with information or optimal services for children with disabilities must be an es- sential part of the regionalized system. 6. Incorporate into Training Curricula Principles of Care For Children with Disabilities There is a need for the incorporation of clinical experiences relating to the care of disabled infants, children, and young adults into all levels of pre- service and in-service education for health professionals. Utilization of interdisciplinary methods in the training process encourages coordinated clinical care. Teaching models should enhance professional satisfaction in caring for disabled children. Methods to improve communication skills among patients, parents, and fellow workers must be inherent components of the training program. 7. Support Research in the Care of Children with Disabilities While our scientific understanding of specific disabling diseases and condi- tions is sophisticated, a great need remains to learn more about optimal meth- ods of health care provision for disabled children. Research should include in- vestigations into a) curricular revisions to better train professionals in evahta- tory methods and treatment techniques; b) methods to enhance communication and coordinating skills; c) procedures to improve financial reimbursement pro- cedures; d) methods to promote intra- and interagency understanding; and e) methods to immediately disseminate new information concerning the care of disabled children. Increasing concern for fiscal responsibiiity and accountabil- ity will dictate the wisdom of devoting significant portions of available resources to expand research and development endeavors. 52 SUMMARY OF THE WORKSHOP In the summer of 1982, Surgeon General C. Everett Koop, M.D. re- quested that a Workshop on Children with Handicaps and their Families be convened to seek out ways to lessen the handicaps imposed on disabled chil- dren and to promote child and family self-sufficiency and autonomy. The workshop was held at The Children's Hospital of Philadelphia on Decem- ber 13 and 14, 1982. Over 150 individuals, including handicapped patients, their families and those involved with their care, were invited to participate in the conference. An additional 100 people attended parts of the proceed- ings because of their interest in the welfare of handicapped children. All of the participants paid their own expenses or were supported by their own in- stitutions. Financial assistance was provided for participating patients and parents. The Workshop was called in response to the revolutionary transforma- tions in medical technology which have taken place during the past four decades. Discoveries and applications in the fields of antibiotics and other drugs, in vaccines, in computerized imaging procedures, in life-support and monitoring, in laboratory techniques, and in the understanding of basic physi- ology have altered the prognosis for innumerable children. The baby who is born premature, the infant with severe congenital defects of the major or- gans or skeleton, and the child who is damaged by severe trauma or infec- tion can now be supported by the combination of high technology and trained medical personnel. Many of these children now survive, and most of those who do can look forward to a productive life, though often impeded by residual disability. Modern American society has geared itself to almost unlimited support of this technology. But support for the essential services systems outside the tertiary care environment has not kept pace for the increasing numbers of children whose lives are being saved. Technology is expensive, essential sup- port services are also expensive, and funds are limited. Numbers of ques- tions require consideration. Can we maintain the technological support, yet improve the essential services with the funds available? Do we need more funds? Can we find ways of redistributing the funds now being spent? Can we devise strategies for providing more humane service with fewer dollars? Those attending the workshop concentrated on the severe, specific prob- lems of the ventilator-dependent child, and the findings for this prototype were extrapolated for their implications for all handicapped children. Dr. Robert G. Kettrick, Chairman of the Workshop, challenged the audi- ence to accept responsibility for insuring that all reasonable care alternatives be made available for ventilator-dependent children. He asked them to identify and correct the circumstances which prevent transfer from an acute facility to home or community alternatives and presented a number of illus- trated case histories representative of the progress which can be achieved by a child on home care. 53 Presentations of programs in Illinois, New York, and Pennsylvania ex- plored problems and progress in meeting the needs of increasing numbers of ventilator-dependent children. A parent, Mrs. Betty Wartenberg, presented a summary of the life of her nine-year-old son. She gave an account that re- called the years on ventilator support in an intensive care unit, the disrup- tions to family unity, and of the remarkable progress made after his transfer to home care. Following these presentations the participants were assigned to working groups where a mix of disciplines were used to assure an interchange of ideas and perspectives. Parents met insurance people, government execu- tives saw and talked with handicapped patients who were in wheelchairs and on ventilators, executives of service organizations walked the acute and in- termediate wards of the hospital and interacted with children who have lived there all their lives-3 or 4 years; legislative aides participated with physicians and hospital administrators. During this brief time a mechanism evolved which cut through the intermediaries of typed letters, impersonal phone calls, and layers of formalization. A consensus of the working groups' deliberations was reported to a final plenary session, which marked the close of the workshop. SYNTHESIS OF THE DELIBERATIONS AND THE SURGEON GENERAL'S RESPONSE The summaries and recommendations of the workshop groups reveal an overwhelming diversity of concepts and directions to be considered. Many ideas arose repeatedly during the two days of discussion and can be grouped within broad categories: o Developing regional systems of care o Defining the scope of the problem o Developing model standards for quality assurance o Incorporating principles of care for children with disabilities into current education curricula o Identifying areas of potential abuse o Supporting research on the care of children with handicaps o Improving financing of the kinds of care these children and their families need While the workshop did not focus specifically on ethical matters, the ef- fect of each participant's set of social values was always apparent during discussions. Interaction was influenced by each person's values, conscious or not, stated or unstated. Throughout the process one quality-humane- ness-permeated all. Humaneness, thus, was a common thread and a uni- versal motivation. Every expression of thought seemed to emanate from the theme, "What is best for the child?" 54 In declaring the Workshop a success and accepting its recommendations, the Surgeon General praised the participants for their efforts and expressed his belief that the eventual outcome will be better health care for a more di- verse group of children with disabilities. In his closing remarks, Dr. Koop assured the participants: o That funds would be available for a small number of demonstration projects to develop the structure of a regionalized system; o That a study of the national prevalence of ventilator-dependent chil- dren would be encouraged; o That professional organizations would be encouraged to develop model standards for care; o That public and private institutions will be encouraged to incorporate principles of care for ventilator-dependent children into their curricula; o That abuses of resources will be identified and corrected; o That those public and private agencies which fund research will be made aware of the issues presented at the Workshop; and o That a primary focus of the federally-funded demonstration projects would be the issue of cost reimbursement from public, private, and voluntary sources; cost-reimbursement issues would continue to be discussed with insurers. "Where we have it in our power, we hope to make their handicaps tempor- ary, or, at least to ameliorate their severity. We will be using a variety of tech- niques to continue the momentum which has developed at the Workshop, and I will report back to you as we make progress on the various suggestions you have passed on to me as Surgeon General." "The Department of Health and Human Services has a very strongcommit- ment to improve services to disabled children and their families. And, as long as I am Surgeon General, disabled children have a very strong advocate in the Public Health Service." 55 APPENDIX A PARTICIPANTS Fred Abbey Policv Coordinator/Health Rm 825-H Hubert H. Humphrey Bldg. 200 Independence Ave., SW. Washington, DC 20201 Faye G. Abdellah, Ed.D. Deputy Surgeon General and Chief Nurse Officer U.S. Public Health Services Parklawn Building Rockville, MD 20857 Thomas Aceto, M.D. Chairman Department of Adolescent Medicine St. Louis University School of Medicine St. Louis, MO 63104 Augusta Alba, M.D. Associate Director Goldwater Hospital, Rehabilitation Division New York, NY 10044 Richard Apple General Manager Life Products, Inc. P.O. Box 3370 Boulder, CO 30307 Mary Ann Arty, R.N. State Representative 438 Baltimore Pike Springfield, PA 19064 Dan Baranowski, R.T.T. Department of Respiratory Therapy The Children's Hospital of Philadelphia 34th St. and Civic Center Blvd. Philadelphia, PA 19104 Michael Batten Presidential Correspondence The White House 1600 Pennsylvania Ave., N.W. Washington, DC 2ooo6 Constance U. Battle, M.D. Medical Director and Chief Executive Officer The Hospital for Sick Children 1731 Bunker Hill Rd., N.E. Washington, DC 20017 David Bauer The Conference Board 845 - 3rd Ave. New York, NY 10022 Mrs. Mark Beckett 2420 D. Ave., N.E. Cedar Rapids, IA 52402 Paul Bergan, M.D. Mt. Washington Pediatric Hospital Baltimore, MD 21209 Mr. and Mrs. Jan Berry 409 I Street La Porte, IN 46350 Marvin Berz Executive Service Corps of Chicago 208 S. Lasalle Chicago, IL 60604 Eugene Bilotti, M.S.W. Administrator, SSI-DCP 540 Iles Park Pl. Springfield, IL 62718 Mark Blitz ACTION 806 Connecticut Ave., N.W. Washington, DC 20525 Ruth Bock, R.P.T. Director, Home Care Team Children's Hospital National Medical Center Washington, DC 20010 Shirley Bonnem Vice President The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Evelyn Bouden, M.D. Director, Division of Parent, Child and School Health State Department of Health Harrisburg, PA 17108 56 Ruth Breslin, M.S.W., A.C.S.W. Chief Social Worker Maternal and Newborn Section Yale-New Haven Hospital New Haven, CT 06504 Benjy Frances Brooks, M.D. University of Texas Medical School at Houston Room 622 6431 Fannin St. Houston, TX 77030 John Brooks, M.D. Director of Pediatric Pulmonary Division University of Rochester School of Medicine P.O. Box 667 Rochester, NY 14642 Barbara Brown, R.N., M.S.N. Rehabilitative Clinical Specialist A.I. du Pont Institute Wilmington, DE 19899 Peter P. Budetti, M.D., J.D. Institute for Health Policy Studies University of California San Francisco, CA 94143 Danuta Buzdygan, M.D. 200 Jefferson Road Princeton, NJ 08540 Henry Cecil, M.D. Director, Division of Child Development and Rehabilitation The Children's Hospital of Philadelphia Philadelphia, PA 19104 Mrs. Terri Connors 5103 Greenridge Ct. Peoria, IL 61605 Camille Cook, M.S. Nursing Consultant Division of Maternal and Child Health Parklawn Bldg., Room 7-22 5600 Fishers Lane Rockville, MD 20857 Donald A. Cornely, M.D. Professor and Chairman Department of MCH The Johns Hopkins University School of Hygiene and Public Health Baltimore, MD 21205 Berniece Cramer, M.A. MCH Nursing Consultant Region V 300 S. Wacker Drive, 33rd Floor Chicago, IL 60616 Glenna Crooks, Ph.D. Deputy Assistant Secretary for Health Planning and Evaluation HHH Bldg. Room 703-H 200 Independence Ave., S.W. Washington, DC 20201 Leonard Davis Blue Cross of Greater Philadeluhia 1333 Chestnut St. Philadelphia, PA 19107 Carolyn M. Del Polito, Ph.D. American Society of Allied Health Professionals One DuPont Circle Washington, DC 20036 Mrs. Fitz Eugene Dixon, Jr. Board of Managers The Children's Hospital of Philadelphia Philadelphia, PA 19104 Mary Elizabeth Donar, R.N. Head Nurse, PICI The Children's Hospital of Philadelphia Philadelphia, PA 19104 Paul Donelan, J.D. Deputy Director/Government Relations American Medical Association I 110 Vermont Ave. Washington, DC 20005 JoAnne S. Downes Administrator, Hospice Program Pennsylvania Hospital 8th and Spruce Streets Philadelphia, PA 19107 John J. Downes, M.D. Anesthesiologist-in-Chief Department of Anesthesia The Children's Hospital of Philadelphia Philadelphia, PA 19104 Bonnie Eddington Health Planning Specialist Room 401, New Jersey Department of Health Trenton, NJ 08625 Paul S. Entmacher, M.D. Vice President'and Chief Medical Director Metropolitan Life Insurance 1 Madison Ave. New York, NY 11010 Jill Eshleman R.D. 2. Box 84 Nottingham, PA 19362 57 Mrs. Rose Eshleman R.D. 2, Box 84 Nottingham, PA 19362 Suzanne Feetham, Ph.D., R.N. Associate Director Nursing Education and Research Children's Hospital National Medical Center Washington, DC 20010 Allen I. Fields, M.D. Division of Critical Care Medicine Children's Hospital National Medical Center Washington, DC 20010 Dennis Filipovitch Pennsylvania Department of Health P.O. Box 90 Harrisburg, PA 17120 Judson Force, M.D. Chief. Division of CCS Department of Health and Mental Habilitation 201 W. Prescott St. Baltimore, MD 21201 Mrs. Bruce Forsberg Chairman-Elect, Board The National Association of Children's Hospitals and Related Institutions, Inc. 1601 Concord Pike Wilmington, DE 19803 Renee C. Fox, Ph.D. Professor of Sociology 507 McNeil/CR University of Pennsylvania Philadelphia, PA 19104 Charles Frame 5843 North West Circle Chicago, IL 60631 Albert C. Fremont, M.D., M.P.H. Director, Child Development Clinic 751 South Bacom Ave. San Jose, CA 95128 David E. Gagnon, Ph.D., M.P.H. Vice President for Planning Women's and Infants' Hospital 50 Maude St. Providence, RI 02908 John Gamaldi, M.S.W. Social Work/Consultant Pennsylvania Department of Health P.O. Box 90 Harrisburg, PA 17108 John Garrison, M.P.A. Executive Director National Easter Seal Society 2023 W. Ogden Ave. Chicago, IL 61612 Myron Genel. M.D. Robert Wood Johnson Fellow Institute of Medicine National Academy of Sciences Washington, DC 20418 William Gibson, M.D. Executive Director Elizabethtown Hospital and Rehabilitation Center Elizabethtown, PA 17022 Allen I. Goldberg, M.D. Director, Division of Respiratory Care Children's Memorial Hospital 2300 Children's Plaza Chicago, IL 60614 George Gwilliams R.D. #2, Box 487 Harvey Lake, PA 18618 Alfred Healy, M.D. Chairman, Division of Developmental Disabilities University Hospital School University of Iowa Iowa City, IA 52242 Ruby Hearns, Ph.D. Robert Woods Johnson Foundation P.O. Box 2316 Princeton, NJ 08540 Hannah Hedrick, Ph.D. Assistant Director, Department of Allied Health Education and Accreditation American Medical Association 535 N. Dearborn Chicago, IL 60610 Susan L. Hughes, D.S.W. Assistant Professor. Community Health _._~.~~ , and Preventive Medicine Northwestern University Medical School Evanston, IL 60201 Vince L. Hutchins, M.D. Director, Division of MCH Department of Health and Human Services Parklawn Bldg., Room 7-39 5600 Fishers Lane Rockville, MD 20857 Joseph Ichter, M.D. Vice President for Medical Affairs Pennsylvania Blue Shield Camp Hill, PA 17011 58 Roseanne Langham, Dr. P.H., R.D. Administrator, Nutrition Services Louisiana Department of Health and Human Resources New Orleans, LA 70160 Frank Jirka, Jr., M.D. American Medical Association 535 N. Dearborn Chicago, IL 60610 Margaret Jones Southeastern Chapter Local MDAA Patient Service Coordinator Morelin Plaza 111 Street Road Southampton, NY 18966 Ray Kalinsky AAMED Inc. 1215 S. Harlem Ave. Forrest Park, IL 60130 Anne Keller, M.D. Director, Division of Rehabilitation Bureau of Professional Health Services State Department of Health P.O. Box 90 Harrisburg, PA 17108 Robert Kettrick, M.D. Department of Anesthesiology and Critical Care The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Arthur Kohrman, M.D. Director, LaRabida Children's Hospital and Research Center E. 65th St. at Lake Michigan Chicago, IL 60649 C. Everett Koop, M.D. Surgeon General U.S. Public Health Service HHH Bldg. 200 Independence Ave., S.W. Washington, DC 20201 George Kouba Care for Life Program 2300 Children's Plaza Chicago, IL 60614 Sheila Kun, R.N., P.H.N. Discharge Coordinator Children's Hospital of Los Angeles 4650 Sunset Blvd. Los Angeles, CA 90027 Fern Kupfer 607 Lynn Avenue Ames, IA 50010 William Lassek, M.D. Regional Health Administrator DHHS Region III P.O. Box 13716 Philadelphia, PA 19106 Mary Ann Lee, M.D. Pediatric Attending Division of Community Medicine St. Vincent's Hospital and Medical Center New York, NY 10011 Mathew H.M. Lee, M.D. NYU Medical Center Goldwater Memorial Hospital Franklin D. Roosevelt Island New York, NY 10044 David R. Linney Medical Financial Counselor Great Lakes Hemophilia Foundation 1701 W. Wisconsin Ave. Milwaukee, WI 53233 Edward Lis, M.D. Director, Division of CCS 540 Iles Park PI. Springfield, IL 62718 George Little, M.D. Chairman, Department of MCH Dartmouth Medical School Dartmouth-Hitchcock Medical Center Hanover, NH 03755 Robert P. Losey, M.D. Past President of PAC/LAC Perinatal Advisory Council Los Angeles Communities 11 I S. Central Ave. Glendale, CA 91204 Bryan Lute Director, Office of Research and Demonstrations Health Care Finance Administration 330 Independence Ave., S.W. Washington, DC 20201 John MacQueen, M.D. Iowa Specialized Child Health Services University of Iowa Hospitals and Clinics Iowa City, IA 52242 59 Phyllis R. Magrab, Ph.D. Director, Chid Development Center Georgetown University Hospital 3800 Reservoir Rd., N.W. Washington, DC 20007 Barbara Maidhof, R.N. New York City VNA 166-07 Hillside Ave. Jamaica, NY 11432 Kathleen McCormick, Ph.D. Assistant to the Chief for Research Nursing Department NIH, Bldg. 10, Room 8N202 Bethesda, MD 20205 Brian McDonald, M.S.W. Director of Social Work Children's Seashore House Atlantic City, NJ 08401 Merle G. McPherson, M.D. Medical Officer Division of MCH Parklawn Building, Room 7-22 5600 Fishers Lane Rockville, MD 20857 Solbritt Murphy, M.D., M.P.H. Director, Bureau of MCH State Department of Health Albany, NY 12237 Richard P. Nelson, M.D. Director of Developmental Disabilities Gillette Children's Hospital 200 E. University Ave. St. Paul, MN 55101 Harold O'Flaherty Special Assistant on Disability Policy Office of the Surgeon General HHH Bldg. 200 Independence Ave., SW. Washington, DC 20201 George Peckham, M.D. Director, Division of Neonatology The Children's Hospital of Philadelphia 34th St. and Civic Center Blvd. Philadelphia, PA 19104 Rosanne Perez, R.N., Ed.D., C.P.N.A. Professor and Chairman Department of Pediatrics, Family and Women's Health Nursing University of Indiana School of Nursing Indianapolis, IN 46202 James Perrin, M.D. Medical Director Primary Care Center Assistant Professor of Pediatrics Vanderbilt University Medical Center Nashville, TN 37232 Ann Pettigrew, M.D. Consultant California Children's Services 524 Van Ness Ave. Santa Cruz, CA 95060 Russell C. Raphaely, M.D. Director, Pediatric Intensive Care The Children's Hospital of Philadelphia Philadelphia, PA 19104 Frances Ritter, B.S.W. Director of Child Life Department The Children's Hospital of Philadelphia Philadelphia, PA 19104 Ron Rosenberg Vice President of Planning and Development Upjohn Health Care Services 2605 E. Kilgore Kalamazoo, Ml 49002 Thomas M. Russo Director Medical Assistance & Health Services New Jersey Department of Human Services 324 E. State St. Trenton, NJ 08625 Arthur Salisbury, M.D., M.P.H. Vice President. Medical Services March of Dimes Birth Defects Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 John Sargent, M.D. Child Guidance Clinic The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Thomas Scanlin, M.D. Division of Pulmonology The Children's Hospital of Philadelphia Philadelphia, PA 19104 Madelyn Schultz, M.Ed. Program Analyst Administration on Developmental Disabilities HHH Bldg. Room 349F 200 Independence Ave., S.W. Washington, DC 20201 60 Tom Schworles Congress of Organizations of Physically Handicapped- 803 Monticello Place Evanston, IL 60201 Edward Sewell, M.D. Thomas Jefferson University Department of Pediatrics 1025 walnut St. Philadelphia, PA 19107 May Shayne. A.C.S.W. Liaison Officer and Research Associate Institute for Public Policy Studies Vanderbilt University Nashville, TN 37212 Benjamin K. Silverman, M.D. Co-Editor. Clinical Pediatrics 66 Mt. Lucas Rd. Princeton, NJ 08540 Ira Singer, M.S.P.H. Policy Analyst Project Hope Center for Health Information Carter Hall Millwood, VA 22646 James Snipe Chief. Policy Division OCHAMPUS Department of Defense Aurora, CO 80010 Ruth Stein, M.D. Associate Professor of Pediatrics Bronx Municipal Hospital Center Jacobi Hospital Bronx, NY 10461 Leon Sternfeld, M.D., Ph.D. Medical Director United Cerebral Palsy. Inc. 66 E. 34th St. New York, NY 10016 Jim Stith, M.H.A., M.P.H. Planning Consultant LaRabida Children's Hospital E. 65th St. at Lake Michigan Chicago, IL 60649 Richard D. Wood Chairman, Board of Managers The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Daniel R. Thomas Assistant Director for Consumer and Professional Relations Division Health Insurance Association of America 332 S. Michigan Ave. Chicago, IL 60604 Phvllis Zucker, M.P.H. Chief, Resources Branch Division of Policy Analysis Office of Health Planning and Evaluation 200 Independence Ave., S.W. Rm. 740-G Washington, DC 20201 H. A. Thompson President, Thompson Respirator Company 1630 Range St. Boulder, CO 80301 Theodore D. Tjossem, Ph.D. Chief, MRDD Branch NICHD, NIH 7910 Woodmont Ave. Bethesda, MD 20205 Edward van Amerongen President, American Home-Health Services 515 E. Gulf Rd. Suite 201 Arlington Heights Chicago, IL 60005 Bette and Don Wartenberg 1010 Pearson Dr. Joilet, IL 60435 Terry White Assistant Vice President Rockford Memorial Hospital Rockford, IL 61103 William G. Williams Director, Health Care Relations Provident Mutual Life P.O. Box7378 Phildelphia, PA 19101 Ann Wilson, Ph.D. Congressional Fellow Office of Senator Dale Bumpers Dirksen Senate Office Bldg., Room 3229 Washington, DC 20510 Elizabeth and Charles Wingel 46 Wildwood Avenue Landsdowne, PA 19050 Alexandra and Charles Wiseley 354 Harford Rd. Somerdale, NJ 08083 61 APPENDIX B FACILITATORS *Winifred Betsch, R.N. Director of Operating Room Services *A. Michael Broennle, M.D. Senior Anesthesiologist Suzanne Bronheim, Ph.D. Psychologist Child Development Center Georgetown University Hospital Washington, D.C. Eveline A. M. Faure. M.D. Medical Director Care for Life Chicago, Illinois Elly Henig, M.Ed., C.R.C. Director of Vocational Rehabilitation Education Rehabilitation Institute of Chicago Chicago, Illinois Vicki Karlin. L.C.S.W. Acting Director, Department of Social Work Child Development Center Georgetown University Hospital Washington, D.C. *Russell C. Raphaely, M.D. RECORDERS David Green, M.B.A. Trainer Acting as Recorder Director of Training and Staff Development Children's Memorial Hospital Chicago, Illinois Ann Kotterla, M.B.A. Trainer Acting as Recorder Training Coordinator Department of Human Resources Michael Reese Hospital Chicago, Illinois Mary Lou Box, M.S.N. 905 Wenrick Avenue Harrisburg, Pennsylvania *Margaret Cohen, M.S.N. Department of Nursing *Margie Forbes, C.S.W. Ventilator-Dependent Children Home Program Pediatric Critical Care Services Director, Pediatric Intensive Care Complex Ray Snarski, R.R.T. Special Projects Coordinator Division of Respiratory Care Children's Memorial Hospital Chicago, Illinois *David B. Swedlow, M.D. Anesthesiologist Carol Vaughn, R.N. Nursing Coordinator Care for Life Chicago, Illinois Patricia Gibbons, M.D. Fellow, Department of Anesthesia and Critical Care Services William Greeley. M.D. Fellow, Department of Anesthesia and Critical Care Services Barbara Kane, C.S.W. Department of Social Work Staten Island Hospital Staten Island, New York * Connie O`Brien, M.S.N. Ventilator-Dependent Children Home Program Pediatric Critical Care Services o Marianne C. Raphaely Chairperson Executive Council of Volunteer Organizations * Dolores Vorters, A.C.S.W. Department of Social Work *The Children's Hospital of Philadelphia 62 APPENDIX C PROTOTYPE HOME PROGRAM REVIEW FOR VENTILATOR-DEPENDENT CHILDREN The Children's Hospital of Philadelphia 1. GOALS o To provide safe respiratory support within the home environment o To resolve problems of cash flow for payment of services II. INITIAL STAGE A. Service Provision o Consultation with institutions planning home care for the ventilator-dependent child o Supervision of respiratory care of program participants o Home visits by health care team . Telephone access to health care team o Referral to appropriate service agencies o Coordination of inter-agency and family contract o Development of resource list o Development of parents' support group o Coordination of consultative services, i.e., nutrition, respi- ratory therapy, rehabilitation, etc. o Classification of nursing needs for third party payers o Crisis intervention o Supportive counseling (i.e., bereavement, effects of chronic illness on siblings, etc.) o Liaison between Commonwealth of Pennsylvania-Depart- ment of Health and Welfare and families o Liaison with vendors o Disbursement of Commonwealth of Pennsylvania-Depart- ment of Health and Welfare funds in order to meet legislative intent of Appropriation Act 17A sf 1980 B. Educational Services o Development and supervision of family and home care- givers pre-discharge training program o Provision of post-discharge parent education o Education for parent advocacy o Education for parent assertiveness o Education of health professionals regarding home-care for ventilator-dependent children o Liaison between families and school districts 63 C. Documentation and Investigation Needs o Patient classification of nursing care needs o Nursing assessment o Developmental assessment o Parents' Guide for Home Care o Interview guide for parents when hirit,: home-care givers o Nutritional assessment o Pre-discharge Social Work Protocol o Post-discharge Social Work Protocol o Individual Service Plan o Patient population survey o Resource list for parents and professionals o Documentation of program costs for ventilator-dependent children o Documentation of family costs for the care of a ventilator- dependent child D. Policy Guideline and Procedure Development o Eligibility review o Enrollment criteria o Equipment and supply lists o Motor vehicle accessory lists o Purchase agreements for equipment o Acquisition of capital equipment o Reimbursement for electricity bills III. SECONDARY STAGE A. Service Provision o Consultation with institutions planning home care for venti- lator-dependent child o Provision of nutrition consultant o Provision of a home visit by a member of the home health care team at least annually o 24-hour 7-day-a-week telephone access to medical personnel o Education of parents about community service agencies and their services o Provision of a forum for peer support o Provision of and payment for services of home care person- nel, i.e., nurses, respiratory therapists o Provision of an objective analysis of nursing care needs for prescriptions and negotiation with third-party payers o Exploration of resources for crisis intervention o Exploration of local resources for supportive counseling o Provision of library resource or bibliography on chronic ill- ness and related effects o Provision of expertise and cash flow to families for acquisi- tion of capital equipment, disposable and non-disposable supplies for health care and rehabilitation needs o Resolution of cash-flow dilemma o Provision of payment for necessary care not reimbursable by established third-party mechanisms 64 o Liaison with third-party payers to investigate and consider cost-effectiveness of home care vs. long-term institu- tionalization B. Educational Services o Development of instruction manual for hospital use in edu- cating and testing families in home health care of ventilator- and/or oxygen-dependent children o Development of a parent organization o Development of continuing education programs for health professionals involved in care of ventilator-dependent children o Proper placement within an educational system C. Documentation and Investigation Needs o Resolution of conflict between families and third-party payers relative to appropriateness of nursing care o Documentation of nursing needs o Development of program for acquiring comprehensive nurs- ing data base o Documentation of developmental profiles o Provision of hospital-based education to insure comprehen- sive education of families who will care for ventilator- dependent children o Documentation of nutritional status and interventions o Development of protocol for social workers who may be in- volved in discharge planning of ventilator-dependent children o Development of a protocol for social workers involved in the home care of ventilator-dependent children o Development of individual service plans for all children within the program o Definition of the number of acute-care institutions currently involved in the care of ventilator-dependent children o Development of family financial profiles o Documentation of medical and social services not being met by third-party payers o Definition of services mandated by existing State and Federal programs D. Policy and Procedure Development o Development of policies and procedures to provide uniform services to families enrolled in program E. Contingency Planning o Development of contingency plans to help families to deal with termination of money IV. FINAL ST-AGE A. Service Provision o Institutionalize a program within the Commonwealth of Pennsylvania, Department of Health and Welfare to insure that the needs of ventilator- and/or oxygen-dependent children and their families are met 65 B. Educational Services o Provide or insure access to an educational system as pro- vided for by the Commonwealth of Pennsylvania and Federal Law (PL 94-142 and Rehabilitation Act of 1973 Sec- tion 504) o Provide a comprehensive education program for profes- sionals involved in the care of ventilator-dependent children o Define a comprehensive continuing education program for families of ventilator-dependent children C. Documentation and Investigation Needs o Develop and prepare standards of care, costs, policies and procedures for the care of ventilator-dependent children o Investigate and document advantages and disadvantages of disposition alternatives for ventilator-dependent children o Investigate and document the effect of a ventilator-dependent child on family functioning 66 APPENDIX D SELECTED READINGS Better Health for Our Children: A National Strategy. The Report of The Select Panel for the Promotion of Child Health to the U.S. Congress and the Secretary of Health and Human Services (HHS) Volume I-Major Findings and Recommendations. Volume II-Analysis and Recommenda- tions for Selected Federal Programs. Volume III-A Statistical Profile. Volume I V-Background Papers. USGPO, Washington, DC, 1981. Child Health and the Community. Robert J. Haggerty, Klaus J. Roghmann and Iran B. Pless. John Wiley and Sons, Inc. New York, NY, 1975. "Collaborative Projects for the Health and Educational Care of Handi- capped Children." Supported by U.S. DHHS, Bureau of Community Health Services (BCHS), Public Health Service, Health Services Adminis- tration and U.S. Education Department, Office of Special Education and Rehabilitative Services, Rockville, MD. Community Workbook for Collaborative Services to Preschool Handi- capped Children. Prepared by American Association of University Affili- ated Programs for the Developmentally Disabled. Phyllis Magrab, Elynor Kazuk, and Lorne Green. Washington, DC, November 1981. Coordinating Services To The Handicapped: A Handbook for Interagency Coordination. Edited by Jerry 0. Elder and Phyllis Magrab. Paul H. Brooks Publishers. Baltimore, MD 21204, 1980. "The Cost Effectiveness of a Shared-Management Delivery System for the Care of Children with Cancer." F. Strayer, T. Kisker, and C. Fethke. Pediatrics 66:6 (Dee), 1980. "A Creative Approach to Caring for the Ventilator-Dependent Child." Barbara D. Schraeder. MCN: The American Journal of Maternal Child Nursing, 4~3 May-June, 165-170, 1979. "Developing a Community Team. " Prepared by American Association of University Affiliated Programs for the Developmentally Disabled. Phyllis Magrab, Jerry Elder, Ellie Kazuk, John Relosi, and Ronald Wiegerink. Washington, DC, 198 1. 67 Guidelines for Early Intervention Programs. Based on a conference- Health Issues in Early Intervention Programs. OMCH/DHHS. College of Nursing, University of Utah, May 1980. Handicapped Children, Strategies for Improving Services. Garry D. Brewer and James S. Kakalek. McGraw-Hill Book Company. New York, NY, 1979. "Hospital or Home Care for Severely Disabled: A Cost Comparison." A.L. Creese and P. Fieden. British Journal of Preventive Social Medicine 31:116, 1977. Illinois Home Care Survey. University of Illinois, Division of Services for Crippled Children. 1982. 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