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Family-Centered Care for Children Needing Specialized Health and Developmental Services

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Family-Centered Care for Children Needing Specialized Health and Developmental Services DOCUMENT RESUME ED 381 926 EC 303 372 AUTHOR Shelton, Terri L.; Stepanek, Jennifer Smith TITLE Family-Centered Care for Children Needing Specialized Health and Developmental Services. Third Edition. INSTITUTION Association for the Care of Children's Health, Bethesda, MD. SPONS AGENCY Health Resources and Services Administration (DHHS/PHS), Washington, DC. Maternal and 2hild Health Bureau. REPORT NO ISBN-0-937821-87-X PUB DATE Sep 94 CONTRACT MCJ-115039 NOTE 132p.; For an earlier edition, see ED 288 321. Photographs may not reproduce well. AVAILABLE FROMAssociation for the Care of Children's Health, 7910 Wooamont Ave., Suite 300, Bethesda, MD 20814 ($15, non-members, Order No. 3233N; $12, members, Order No. 3223M; plus $3.50 shipping and handling; quantity discounts available). PUB TYPE Guides Non -Classroom Use (055) EDRS PRICE MF01/PC06 Plus Po.,;tage. DESCRIPTORS *Agency Cooperation; Check Lists; Community Programs; *Cooperative Programs; Cultural Differences; Delivery Syste.as; Developmental Disabilities; *Disabilities; Family involvement; *Family Programs; *Family Role; Health Services; *Program Development; Public Policy; Special Health Problems; Standards; Values ABSTRACT This monograph articulates eight key elements of a family-centered approach to policy and practice for children needing specialized healt` and developmental services. An introductory section reviews the development of the first edition of the monograph in 1987 and its widespread dissemination and acceptance since that time. Each of the following eight chapters then addresses one of the following elements:(1) recognition that the family is the constant in the child's life, while the service systems and support personnel within those systems fluctuate;(2) facilitation of family/proFessional collaboration at all levels of hospital, home, and community care;(3) exchange of complete and unbiased information between families and professionals in a supportive manner;(4) respect for cultural diversity within and across all families including ethnic, racial, spirituai, soci. 1, economic, educational, and geographic diversity:(5) recognition of different methods of coping and promotion of programs providing developmental, educational, emotional, environmental, and financial supports to families;(6) encouragement of family-to-family support and networking:(7) provision of hospital, home, and community service and support systems that are flexible, accessible, and comprehensive in meeting family- identified needs; and (8) appreciation of families as families, recop,nizing their wide range of strengths, concerns. emotions, and aspirations beyond their need for specialized hedllh and developmental services and support. Checklists for evalnatir. these elements are attached. (Contains16(I references.) (DB) DEPARTUENT OF EDUCATION nai Research end Imerevyncnt us , .Terri L. Shelton Jennfer'Stnith Stepanek (0. the Clik of Cbihrrehtsfien.lth. !;upport.li'afn. \filvimil.zilt,1 cladI -It'111., h Jii is S'etN BEST COPY AVAILABLE Published by: Association for the Care of Children's Health The Association for the Care of Children's Health (ACCH) is an international education and advocacy organization that promotes family-centered care policies and practices addressing the comprehensive needs of children and youth, and their families, in hospital, home, and community program settings. The ACCH Community of family members, mul- tidisciplinary providers, administrators, educators, and researchers, is dedicated to defining a better way of providing health and developmental services for children and their families ...with a distinctive human touch. For information about ACCH's many educational and advocacy resources, as well as membership in the ACCH Community, contact: Association for the Care of Children's Health 7910 Woodmont Avenue, Suite 300 Bethesda, Maryland 20814 301/654-6549 800/808-ACCH This publication was supported in part through a grant to the Association for the Care of Children's Health for the National Center for Family-Centered Care (#MCJ 115039), from the Maternal and Child Health Bureau, U.S. Depart- ment of Health and Human Services. While contractors and grantees are encouraged to express freely their judgements on professional and technical matters, points of view do not necessarily represent those of the Department of Health and Human Services. This publication is presented for information purposes only, and no claims of accuracy are made. Mention of trade names, commercial products, or organizations does not constitute endorsement by the U.S. Govern- ment. Tne content of this publication was subject to extensive peer review. Every attempt was made to accurately describe the policies, programs, and practices presented. Checklists (pages 106-114) and The Key Elements (page vii) may be reproduced with proper citation of the authors and publisher. Excerpts from the book may be printed in connection with published reviews in periodicals without permis- sion. No other part of this book may be reproduced by any means without the written permission of the Association for the Care of Children's Health. Copies of the book may be ordered from the publisher at the address given above. ISBN 0-937821-87-X Copyright 1994, Association for the Care of Children's Health ACCH Humanizing Health Care for Children and Families 3 BEST COPY AVAILABLE Family-Centered Care for Children Needing Specializedealth andevelopmental Services Third Edition* September, 1994 by Terri L. Shelton and Jennif3r Smith Stepanek Association for the Care of Children's Health 7910 Woodmont Avenue, Suite 300 Bethesda, Maryland 20814 301/654-6549 -1 *Formerly titled Family-Centered Care for Children with Special Health Care Needs Foreword by William Sciarillo, ACCH Executive Director The 1987 publication of Family-Centered C'are for Children with Special Health CareNeeds (Shelton, Jeppson, & Johnson, 1987), the initial edition of this current update Family-Centered Care for Children Needing Specialized Health and Developmental Services, marked: ..the beginning of a new era in the delivery of health care services to children and their families ... they delineated eight elements of care that, taken together, consti- tute a philosophy about how health care practices,policies, and systems would need to change if they were to become family-centered (Trivette, Dunst,Allen & Wall, 1993, pp. 241-242). In large part through the leadership and support of former Surgeon: General C. EverettKoop and the U.S. Maternal and Child Health Bureau, much has happened in thefamily-centered care movement since then. Our hope in 1994 is that all childrenthroughout North America will benefit from a standard comprehensive health benefits package. However, universal coverageand other proposed health care reforms will not necessarily assure quality care for children whorequire specialized health and developmental services. Quality care for such children requiressomething more than access and financing strategies . ..it requires the synergy that's possible when service administrators, multidisciplinary providers, and families work together for change with respect to the individual child, as well as at the program andpolicy levels. Simply stated, that's what this book is about. As discussed in the Introductory Chapter, this updated edition of a landmark resourcehas slightly revised and reordered the Key Elements of Family-Centered C'are,with each succeeding element building on the previous one. Consequently, the Key Elements takentogether represent a conceptual framework, rather than simply a listing or checklist approach, which canguide us in our practice, teaching, and research. Inevitably, one must raise the critical issue as to the place of family-centered servicesin a managed care environment. Although there is a paucity of research examining thespecific effects of family-centered care on health care costs, a growing body ofresearch documenting the effect of family factors on the health of its members provides a strong rationale formanaged care systems to recognize that consideration of a family's values, resources,and needs within the context of providing services to a child may be an effective cost containment measure (Consortium of Family Organizations, 1994). In fact: . .. cost-saving measures which do not provide the education and supportive services required by the family /caregivers and do not take into account the specific needsand resources of individual families may result in arigid, inflexible ,system and result in poor, ineffective and cost-inefficient treatment rp. 171. References: Consortium of Family Organizations (1994) Principles of family-centered health care A health care reform white paperThe ACCH Advocate, 1( 2) 13-20 Trivette, C., Dunst, C J., Allen, S., & Wall, L. (1993). Family-centeredness of the Children's Health Carejournal. Children's Health Care, 22,(4) 241-256. Acknowledgements This monograph represents the collaborative effort of many family members and professionals with diverse backgrounds and experiences. The heart and spirit of family-centered care in prac- tice is truly evidenced by their valuable input and assistance, and their clear commitment to the total health and well-being of children with illnesses and physical, mental, or em. tional disabili- ties. These individuals have formally or informally reviewed, advised, encouraged, supported, or otherwise helped to make this a better resource for others who are also striving to incorporate into policy and practice the philosophy of
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