AEGiS-BKREV: HIV Infection and Developmental Disabilities: A Resource for Service Providers

HIV Infection and Developmental Disabilities: A Resource for Service Providers

Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, MD 21285-0624. 292p., illus., bibliog., index. ISBN 1-55766-083-2. $47.00. (Contributors to this volume: Allen C. Crocker, Children's Hospital in Boston; Herbert J. Cohen, Rose F. Kennedy Center Univ.; Theodore A. Kastner, Morristown Memorial Hospital; Gitta Acton, Robert Wood Johnson Medical School; Gary R. Anderson, Hunter College School of Social Work; J. Burt Annin, Child Welfare League of America; Ronald Berchert, Bureau of Community Services; Arnold Birenbaum, St. John's Univ.; Edna Bolivar, New England Hemophilia Center; Doreen B. Brettler, New England Hemophila Center; Gerard A. Cabrera, Young Adult Institute, New York; Marklyn P. Champagne, Moonstone Group of Rhode Island; Stephen Chanock, Harvard Medical School; Curtis L. Decker, National Assoc. of Protection & Advocacy Systems; Gary W. Diamond, Albert Einstein College of Medicine; Raymond Dinoi, New England Hemophilia Center; Patricia Driscoll, Project WIN; L. Jean Emery, Child Welfare League of America; Patricia M. Forand, New England Hemophilia Center; Ann D. Forsberg, New England Hemophilia Center; Geoffrey B. Garwick, Ramsey County Mental Health Clinic; Michele Granger, Children's Hospital of New Jersey; Jenny Grosz, Albert Einstein College of Medicine; Meredith Hinds Harris, Northeastern Univ.; David C. Harvey, National Assoc. of Protection & Advocacy Systems; Karen Hopkins, Albert Einstein College of Medicine; Judith Hylton, Oregon Health Sciences Univ.; Raymond Jacobs, Young Adult Institute; Elaine Jurkowski, Winnipeg West Central Region; Piotr B. Kozlowski, Institute for Basic Research in Developmental Disabilities; Elissa M. Kraus, New England Hemophilia Center; Joel M. Levy, Young Adult Institute; Philip H. Levy, Young Adult Institute; Allen G. Marchetti, Brook Run; Brigitta U. Mueller, National Cancer Institute; Ruth S. Nathanson, Morristown Memorial Hospital; Philip Pizzo, National Cancer Institute; Shirley A. Rees, Bureau of Community Services, Washington, DC; Sharon Rennert, American Bar Assoc.; Martha F. Rogers, Centers for Disease Control; Sheri Rosen, Children's Hospital of New Jersey; Arye Rubinstein, Albert Einstein College of Medicine; Anne F. Rudigier, American Assoc. of Univ. Affiliated Programs for Persons with Developmental Disabilities; Perry Samowitz, Young Adult Institute; John F. Seidel, Pediatric AIDS Program; Marc J. Sicklick, Albert Einstein College of Medicine; Robert J. Simonds, Centers for Disease Control; Elaine Durkot Sterzin, Foundation for Children with AIDS; Claudia K. Swanson, Ramsey County Community Human Services Dept.; Leslie Walker-Hirsch, Moonstone Group of New York; Geneva Woodruff, Foundation for Children with AIDS; Terrence P. Zealand, AIDS Resource Foundation for Children)
Edited by Allen C. Crocker, Herbert J. Cohen, Theodore A. Kastner. 1992.

The goal of this book "is to speak to primary service providers, public planners, families, and students about the meaningful link between developmental disabilities and the presence of HIV infection." The contributors have assembled a large mass of information that deals with HIV infection as it is related to persons with genetic disorders, birth defects, complications of preterm delivery, certain chronic illnesses, and exposures to toxins, injuries, and infections. The goal is to "ensure that HIV infection can be prevented in persons with disabilities, and if accidental infection occurs that effective programs can be maintained." Although this is a difficult goal to achieve, the information that is presented should be quite helpful to those who are working with persons with disabilities. Discrimination has to be eliminated, personal empowerment needs to be provided, and the quality of life of these individuals has to be enhanced.

Part 1--"Child and Family"--focuses on children with congenital HIV infection. The epidemiology of HIV infection is described as is the neuropathology of the disease, the transmission, neurodevelopmental consequences and the circumstances of families in which a child has HIV infection. There are 13 short, but very informative chapters covering such topics as tretment, school programs, habilitative and rehabilitative needs of children, child welfare concerns, barriers in the service system, and hemophilia and HIV infection. The chapters are concise and technical with long bibliographies at the end of each. Suggestions on how to handle each situation are given and numerous case examples are presented.

Part 2--"Youth and Adults"--consists of eight chapters. These are very serious presentations since we are dealing with individuals who in many cases are unable to think quickly enough to make the right decisions, ending up having unsafe sex or participating in drug activity. "Addressing the socio-sexual needs of people with developmental disabilities should be one of our highest priorities." Discussed in this section are such topics as comprehensive sexuality policy, procedures, and standards; HIV education programs; stopping AIDS through functional education; evaluation of HIV prevention programs; and treatment of sex abusers with developmental disabilities and HIV infection. These chapters should be essential reading for all care providers.

Finally, part 3--"Policy Considerations"--deals with the real issues of accuracy regarding transmission of the virus, protection of information, maintaining programs, fair play in the functions of public agencies, funding, feelings of care providers, guidelines, human response, drug problems, and problems of being disadvantaged. These twelve chapters cover legal rights and benefits; policies and procedures in confidentiality; state guidelines, financing developmental services; training; public opinion, discrimination, and integration; substance abuse; and prevention of HIV infection. These are very brief chapters but full of facts, figures, and suggestions. This is an excellent book in presenting an overview and providing plans of action. Some will say it is not comprehensive enough and it is not if just considered by itself. It is, however, intended to be used with other sources and probably more than anything, it is intended to raise the consciousness of anyone working with developmentaly disabled individuals. In the epilogue Allen C. Crocker states "There is reason to hope, as this second decade begins, that the biomedical front will see important gains regarding control of HIV infection. Eleven versions of vaccine are now in some degree of human trial, and one hundred drugs for treatment are in human testing. In the immediate future, however, science alone will not save the day. There is a great deal of unfinished business in organizing our present capacity for effective assistance." This is a recommended book for all medical, academic, and large public libraries. (H. Robert Malinowsky)

Keywords: Children and AIDS, Developmentally Disabled Children, Developmentally Disabled Diseases; Education)

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Copyright © 1993 - The University of Illinois at Chicago. All materials in the journal are subject to copyright by the Board of Trustees of the University of Illinois and may be reprinted or redistributed for the noncommercial purpose of scientific or educational advancement granted by Sections 107 and 108 of the Copyright Revision Act of 1976. For other reprinting, redistribution, or translation, address requests to H. Robert Malinowsky, University of Illinois at Chicago Library, PO Box 8198, Chicago, IL 60680 or electronically to hrm@uic.edu.

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