Supports for Children with HIV Infection in School: Best Practices Guidelines
Crocker, Allen C., Lavin, Alison T., Palfrey, Judith S., Porter, Stephanie M., Shaw, Deirdre M., Weill, Kenneth S., Journal of School Health
Children with congenital HIV infection are surviving in increasing numbers to reach school age. In the school setting they also join others who have acquired HIV infection, including a significant number of youth now in their teen years. The Maternal and Child Health Bureau, U.S. Dept. of Health and Human Services, requested a review of the circumstances and needs of these children, as well as the challenges experienced by educators and administrators. The project began with a questionnaire and phone call survey of the nation's largest school districts. Principal information from this survey is reported in two companion publications.|1,2~ Of particular interest was the finding that schools now have partial information only about HIV infection among the student enrollment. The amount of disclosure regarding the diagnosis, or information transfer, is much reduced. Where such knowledge does exist, the maintenance of confidentiality is earnestly pressed. Hence, generalizations about the number and distribution of students with HIV infection may be difficult for a school or district to make. This greater current anonymity, when present, has some shielding effect regarding possible prejudicial experiences. In the survey work, and in clinical and personal contact, these children emerged as engaging and valued, and their families as caring and courageous. Society is evolving regarding beliefs and attitudes about pediatric HIV infection; this is true as well for educational and health care professionals. These Guidelines are formulated to be supportive to all of these parties, and to be instructional and protective. We hope that these objectives are achieved. Duplication and distribution of the BEST PRACTICES GUIDELINES are authorized and encouraged. Material on which the Guidelines are based derives from a legal and cultural legacy relating to personal opportunity in the setting of special needs. This setting includes especially the Section 504 amendment of the Rehabilitation Act of 1973, Public Law 94-192, Public Law 99-457, the Americans with Disabilities Act, and precepts of the Centers for Disease Control and Prevention and OSHA. The leadership is noted as well of homologous publications from the American Academy of Pediatrics, Child Welfare League of America, American Bar Association, National Association of State Boards of Education, and the American Association of University Affiliated Programs for Persons with Developmental Disabilities. The history of these rules and benchmarks is presented in a related book.|3~
In areas where the prevalence of HIV infection is low, or in smaller school districts, it may be appropriate to combine some Advisory Committee and curriculum activities for HIV infection with other school health and education functions. Where higher prevalence creates greater urgency, a richer and more diverse representation would be needed.
We are indebted to a large number of colleagues and collaborators who joined in a national conference -- Boston, Mass., April 1, 1993 -- and in other contacts, to work on several editions of revisions of these Guidelines. A list of these allies is appended; their support for this final draft is as individuals, rather than as organizational representatives. Comments would be welcomed for consideration in possible future editions. This has been a large and hopeful adventure, carried out in a spirit of fellowship.
1. Palfrey JS, Fenton T, Lavin AT, et al. Schoolchildren with HIV infection: A survey of the nation's largest educational districts. J Sch Health. 1994;64(1):22-26.
2. Lavin AT, Porter SM, Shaw DM, Weill KS, Crocker AC, Palfrey JS. School health services in the age of AIDS. J Sch Health. 1994;64(1):27-31.
3. Crocker AC, Cohen HJ, Kastner TA. HIV Infection and Developmental Disabilities: A Resource for Service Providers. Baltimore, Md: Paul H Brookes Publishing Co; 1992.
I.PREPARATION OF THE SCHOOL SETTING