Privacy and Confidentiality

The use of quality early intervention and education data enables policymakers, administrators, educators, service providers and parents to design and implement effective practices to improve child and family outcomes. While the benefits of data use are clear, there are growing concerns about the scope and type of child data collected, as well as the protection and sharing of those data. This page provides resources, including federal guidance, on practices and policy regarding the privacy and confidentiality of early childhood data.


Resources from the U.S. Departments of Education and Health & Human Services

Relevant Federal Privacy & Confidentiality Regulations

FERPA Regulations
IDEA Part B Regulations
IDEA Part C Regulations

For more information on the Famiily Educational Rights and Privacy Act (FERPA), visit the U.S. Department of Education’s Family Policy Compliance Office (FPCO) website.

Guidance, Memos, & Policy Letters

FERPA and the Coronavirus Disease 2019 (COVID-19)

The U.S. Department of Education has provided answers to questions that school officials may have had concerning the disclosure of personally identifiable information from students’ education records to outside entities when addressing the Coronavirus Disease 2019 (COVID-19).
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Joint Guidance on the Application of FERPA and HIPAA to Student Health Records

The U.S. Department of Education and the Office for Civil Rights at the U.S. Department of Health and Human Services released updated joint guidance addressing the application of the Family Educational Rights and Privacy Act (FERPA) and the Health Insurance ...
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Confidentiality ToolkitConfidentiality Toolkit

This resource tool from the U.S. Department of Health and Human Services’ Administration for Children and Families (ACF) supports state and local efforts by bringing greater clarity to the rules governing confidentiality in ACF and certain related programs by providing ...
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Resources from ED-Funded Technical Assistance Centers

General

Early Childhood Data Privacy resourcesEarly Childhood Data Privacy resources

The U.S. Department of Education’s Privacy Technical Assistance Center (PTAC) has developed a collection of early childhood data privacy resources. View Early Childhood Data Privacy Resource List
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Privacy Collaboration! The Latest Resources from DaSy, PTAC, and IDCPrivacy Collaboration! The Latest Resources from DaSy, PTAC, and IDC

Presenters: Baron Rodriguez, Jeff Sellers, & Jennifer Tschantz This 2014 presentation shares how DaSy, IDC, and PTAC are collaborating to address state questions around data sharing, privacy, and security and provides an overview of new resources recently developed by ...
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Current State Analysis on FERPA and HIPAA Challenges to Accessing Early Intervention and Early Childhood Special Education DataCurrent State Analysis on FERPA and HIPAA Challenges to Accessing Early Intervention and Early Childhood Special Education Data

Conference: Conference on Research Innovations in Early Intervention (CRIEI) Date: February 2014 Presenters: Baron Rodriguez, Donna Spiker & Missy Cochenour This poster presents multiple case studies from across the country to highlight promising practices about researcher access to state data ...
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Data Sharing

Lessons Learned from Developing Data Sharing AgreementsLessons Learned from Developing Data Sharing Agreements

This 2015 webinar shares common challenges and pitfalls in developing data sharing agreements, as well as effective strategies and best practices for developing these agreements. Presented by Baron Rodriguez, Sharon Walsh, Jill Singer, & Nicholas Ortiz in September, 2015 Webinar Presentation Webinar Recording
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What do IDEA and FERPA tell us about Data Sharing?What do IDEA and FERPA tell us about Data Sharing?

This 2014 webinar is a reprisal of a popular session from our 2014 Improving Data, Improving Outcomes conference. Presenters from the U.S. Department of Education share information on current issues and guidance on IDEA and FERPA requirements regarding data sharing ...
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Data Sharing Agreement Checklist for IDEA Part C and Part B 619 Agencies and ProgramsData Sharing Agreement Checklist for IDEA Part C and Part B 619 Agencies and Programs

This 2014 document is an adaptation of the 2012 release of “Data Sharing Agreement Checklist” intended for K-12 audiences. Presented as a checklist, the document summarizes the requirements for the written agreements under the audit or evaluation exception that is ...
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Data Security & Access

Student Privacy 101: FERPA for Parents and StudentsStudent Privacy 101:  FERPA for Parents and Students

This 2013 short video highlights the key points of the Family Educational Rights and Privacy Act (FERPA) for parents and students. Student Privacy 101 (Video)
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IDEA and FERPA Privacy Provisions: Understanding the BasicsIDEA and FERPA Privacy Provisions: Understanding the Basics

Conference: Division for Early Childhood Date: October 2015 Presenters: Ross Lemke & Sharon Walsh This 2015 DEC conference presentation informs viewers of the privacy provisions under IDEA Part C, IDEA Part B, and FERPA. It covers the basics surrounding the ...
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Data De-identification: An Overview of Basic TermsData De-identification: An Overview of Basic Terms

This 2014 document is intended to assist early intervention service programs and providers and preschool special education programs and agencies in maintaining compliance with privacy and confidentiality requirements under IDEA and FERPA. It reviews the terminology used to describe data ...
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Data Governance

Avoid the Pitfalls: Benefits of Formal Part C Data System GovernanceAvoid the Pitfalls: Benefits of Formal Part C Data System Governance

This 2016 brief promotes formal data governance for Part C data by describing lessons learned from other industries; outlining the risks of informal data governance and benefits of formal data governance; and providing action steps to support state Part C ...
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Data Governance Demystified: Concepts to RealityData Governance Demystified: Concepts to Reality

Presenters: Bruce Bull, Sharon Walsh, Denise Mauzy, Christy Cronheim, Rick Harris, & Maria Synodi This 2014 presentation focuses on the role of Data Governance in protecting data and facilitating improved results. State successes and challenges will be explored: authority, accountability, ...
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Data Governance and StewardshipData Governance and Stewardship

This 2011 brief provides guidance on how to successfully manage complex data systems by establishing a comprehensive data governance approach. Data governance principles discussed in this paper apply to a large number of audiences and can be used to improve ...
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For more resources on data privacy and confidentiality please visit the Privacy Technical Assistance Center (PTAC). Funded by the U.S. Department of Education, PTAC provides resources for education stakeholders to learn about data privacy, confidentiality, and security practices related to student-level longitudinal data systems. PTAC partners with DaSy on privacy issues related to IDEA Part C and Part B 619.