See also: Technology and Privacy
The Center for IDEA Early Childhood Data Systems (DaSy Center)
The DaSy Center is a national technical assistance center funded by the U.S. Department of Education, Office of Special Education Programs (OSEP). DaSy works with states to support IDEA early intervention and early childhood special education state programs in the development or enhancement of coordinated early childhood longitudinal data systems.
DaSy's presents a collection of resources on Privacy and Confidentiality on their web site.
OSEP Guidance on Privacy and Data Sharing
Letter to Nisha Kashyap (2016)
Addresses the question of whether the right to examine education records afforded by the IDEA is limited only to parents of children who already have been deemed eligible for special education services, or if the right also extends to children with suspected disabilities.
Provides guidance on the Uninterrupted Scholars Act (USA) (Public Law 112-278), which amends the Family Educational Rights and Privacy Act (FERPA). These changes affect the confidentiality provisions that apply to Parts B and C of the Individuals with Disabilities Education Act (IDEA).
OSEP Letter to Janice Breton (2014)
Provides guidance in response to a question about the use of email to provide parents with their child's individualized education programs (IEPs) and related documentation, such as progress reports, provided the parents and the school district agree to use the electronic mail option, and the States take the necessary steps to ensure that there are appropriate safeguards to protect the integrity of the process.
Provides clarification about the applicability of FERPA and HIPAA as those legal authorities relate to the early intervention records of a toddler who received early intervention services under Part C of the Individuals with Disabilities Education Act (IDEA Part C).
Provides clarification on whether the use of the term early intervention records under Part C of the Individuals with Disabilities Education Act (IDEA) regulations is the same as education records for purposes of IDEA, the Family Educational Rights and Privacy Act (FERPA), and the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.
Provides guidance regarding whether a State must provide parents with a copy of a test protocol that contains personally identifiable information about their child as part of their child's Part C IDEA records.
OSEP Letter to Rick Ingraham (2009)
Provides guidance on when parental consent must be obtained for changes in the Individualized Family Service Plan (IFSP).
Provides clarification in response to a question about restricting physical access to education records.
OSEP Letter to Mary Elder (2004)
Provides clarification about whether parental consent is required to disclose referral information from a lead agency under Part C of IDEA to the State education agency or local education agency about children who will shortly turn three and transition from receiving early intervention services under Part C to potentially receiving special education and related services under Part B.
Provides clarification about the State lead agency's child find responsibilities under Part C of IDEA and whether a hospital can disclose information regarding an infant or toddler to a State's lead agency.
Federal Privacy Regulations: FERPA and HIPAA
These regulations address such issues as confidentiality, maintaining and sharing educational records and disclosure of information. These regulations apply to both Part B and Part C, because the confidentiality requirements in the Part B of IDEA (34 CFR 300.560-300.576) incorporate by reference the regulations in 34 CFR Part 99. Additionally, the confidentiality sections of Part B are also to be used by public agencies to meet the confidentiality requirements under Part C of IDEA (34CFR 303.460). Therefore, FERPA is also incorporated by Part C.
This crosswalk tool from U.S. Department of Education provides a side-by-side comparison of the primary legal provisions and definitions in the Individuals with Disabilities Education Act (IDEA) Parts B and C and the Family Educational Rights and Privacy Act (FERPA) that relate to the confidentiality of personally identifiable information of children served under the IDEA.
This brief provides answers to commonly asked questions about the sharing of sensitive child-level data and summarizes seven key points to know about FERPA and the Health Insurance Portability and Accountability Act (HIPAA) on sharing education and health data - with an emphasis on data obtained and used by early childhood education programs. It is based on a webinar sponsored by the Early Learning Challenge Technical Assistance (ELC TA) program on April 21, 2014.
From the Legal Center for Foster Care and Education explains how recent changes to FERPA make it easier for child welfare agencies to obtain the education records of children with whom they work.
The Impact of Privacy Regulations: How EDHI, Part C and Health Providers Can Ensure that Children and Families Get Needed Services (2008)
A White Paper by National Center for Hearing Assessment and Management (NCHAM), explaining privacy regulations, specifically HIPAA, FERPA, and the IDEA Part C regulations that incorporate confidentiality provisions under FERPA. The paper offers recommendations for sharing information and ensuring access to services.