Federal Privacy Regulations and the Provision of Early Hearing Detection and Intervention Programs

Abstract

To be successful, Early Hearing Detection and Intervention (EHDI) programs require individually identifiable information about children to be shared among people who are responsible for screening, diagnosis, early intervention, family support, and medical home services. Pediatricians and other stakeholders in the EHDI process often point to federal laws that were passed to ensure privacy and confidentiality in health care and educational programs as major obstacles to achieving efficient and effective EHDI programs. In this article we summarize the provisions of 3 federal laws (the Health Insurance Portability and Accountability Act [HIPAA], the Family Education Rights and Privacy Act [FERPA], and Part C privacy regulations of the Individuals With Disabilities Education Act [IDEA]) that most directly affect information-sharing in EHDI programs. We suggest strategies for sharing the information needed to operate successful EHDI programs while remaining in compliance with these laws, including obtaining signed parental consent to share information between providers, including an option on the individual family services plan for parents to permit sharing of the plan with pediatricians and other providers, and giving copies of all relevant test results to parents to share with providers as they wish.