Stay on the Linking Path: Don’t Forget Privacy May 18th, 2017 #LinkingWeek

Objectives Increase understanding of important steps related to privacy and confidentiality as you plan for linking Part C and Part B 619 data Increase understanding of the FERPA policies relevant to linking Part C and Part B 619 data Learn about strategies that North Carolina is using to address privacy and confidentiality considerations

Baron Rodriguez, DaSy and PTAC Barbara Simpson, NC Part C Joining us Today Baron Rodriguez, DaSy and PTAC Barbara Simpson, NC Part C Kelley Blas, NC Part B Sharon Walsh, DaSy POLL: What is your role?

Consider Two Scenarios Scenario A Scenario B Single lead agency, Education, two separate data systems for Part C and 619 Two different lead agencies, Health for Part C and Education for 619 – each has its own data system

Privacy Considerations Where does the data reside as a result of your inventory? What data will need to be shared AND how will the data flow? What federal, state, and local laws apply to data sets? What data sharing agreements need to be in place? Requirements? ? NECTAC/ECO/WRRC 2012

Step 1: FERPA/IDEA Crosswalk Why it matters to you: What does it address? Will help you understand the differences between definitions, protections, and requirements around IDEA Part B & Part C and FERPA. Will help differentiate the statutes and provide comparisons for the shared definitions.

What Records Are Covered? IDEA Part C Early Intervention Records IDEA Part B Education Records FERPA All records regarding a child that are required to be collected, maintained, or used under Part C [303.403(b)] The type of records covered under the definition of “education records” in FERPA Records that are collected, maintained, or used [300.611(b)] Records that are – Directly related to student; and maintained by an educational agency or institution or by a party acting for the agency or institution [99.3]

Step 2: FERPA Applicability? FERPA Exceptions Summary Why it matters to you: What does it address? The various exceptions to FERPA can be confusing and difficult to keep track of. This gives you a simple two page or large single page “at-a-glance” view of FERPA exceptions. It is intended be a handy visual aid to help look at what FERPA exception applies to the data sharing work you are trying to do.

FERPA/Part C Crosswalk of Terms IDEA Part C Education Record Early intervention record Education Early intervention Educational agency or institution Participating agency School official Qualified early intervention service (EIS) personnel/Service coordinator State educational authority Lead agency Student Child under IDEA Part C

Disclosure of PII From Education Records under FERPA FERPA permits non-consensual disclosure of PII from education records under several exceptions Staff or employees who need access to perform duties School official exception “Legitimate educational interest” External entities Studies exception Audit or evaluation exception Uninterrupted Scholars Act Other (e.g., court order, health or safety emergency)

Note on the Studies Exception The "Audit/Evaluation” exception in 34 CFR §§99.31(a)(3) and 99.35 is the most appropriate exception under IDEA and FERPA for data sharing arrangements for the IDEA early childhood community. In the very limited instance in which IDEA Part C or IDEA Part B section 619 agencies or programs propose to consider using the “Studies” exception under FERPA, such agencies and programs will want to consult with the Department’s Office of Special Education Programs (OSEP) and Family Policy Compliance Office (FPCO) regarding how the proposed data sharing would meet the requirements in 34 CFR §§99.31(a)(6) and 303.414 (for IDEA Part C) and 34 CFR §§99.31(a)(6) and 300.622 (for IDEA Part B Section 619).

IDEA Safeguards Each participating agency must protect the confidentiality of PII at all stages. One official at each participating agency must assume responsibility for ensuring the confidentiality of any PII. All persons collecting or using PII must receive training on state’s privacy procedures. Each participating agency must maintain a list of employees with access to PII.

Scenario A: One lead agency, Education, two separate data systems for Part C and 619 Overall Agency Data Governance Part C Data Stewardship Provisions 619 Data Stewardship Provisions

Scenario B: Two different lead agencies, Health for Part C and Education for 619 Multi-agency Governance Health Agency data stewardship input Required: Data Sharing Agreement Audit/Eval Exception ED Agency data stewardship input

Helpful Resource: Data Destruction Best Practices Why it matters to you: What does it address? Given the large volume of child data collected by providers, it is important to understand responsibilities and best practices in destruction of data no longer needed. It details the life cycle of data and discusses legal requirements of destruction of data destruction under FERPA as well as examples of methods for properly destroying data.

NC Context Part C in Health (DHHS) Part B 619 in Education (DPI) Participation in DaSy Linking C/619 Data Cohort starting February 2016

North Carolina’s Part C and Part B 619 Linking Data Work Preparation for Linking Data Sharing Agreements/MOUs Data Elements Unique ID

North Carolina Linking – Agreements Challenges/Barriers: What is the format/language for the necessary agreement/MOU? Interagency Agreement on Transition (DHHS/DPI) ECIDS MOU Other approved agreements within Part C or Part B 619 Solutions/Lessons Learned Leverage existing MOUs/Agreements (ECIDS, Current Interagency Agreement on Transition)

North Carolina Linking - Agreements Challenges/Barriers: Who needs to be involved in the MOU/Agreement process? Separate agencies = Redundancies of roles (Lawyers from Part C, Lawyers from Part B) Who are the decision-makers? Are they at the table? Separate data systems Involving Data Governance groups Solutions/Lessons Learned Start early with meetings with key people Membership of core linking group is key

North Carolina Linking – Agreements Current Status Current Status: Amendment to current Interagency Agreement Under Review Utilized language from other accepted agreements Includes information on: Why to link data FERPA guidance and exceptions for sharing Personally Identifiable Information (PII) Joint Data Committee (decision-making body) “Legalese” – data requests, re-disclosure, security considerations, permissions, etc.

North Carolina Linking – Data Elements Challenges/Barriers: ECIDS data elements were insufficient No referral data No Child Outcomes data from Part B 619 Other data not included Solutions/Lessons Learned: Start with lists from ECIDS MOU Add in fields relevant to critical questions Include in Amendment

North Carolina Linking – Unique ID Challenges/Barriers: No C/619 unique ID currently exists Solutions/Lessons Learned: Standard ID currently used by DPI for all students is also ID used for ECIDS ECIDS ID is in DHHS Data Warehouse, working on getting Part B 619 data staff access

North Carolina Linking – Next Steps Approval of Amendment to Interagency Agreement Joint Data Committee/Joint Data Governance Permissions Secure data transfer Secure storage Link Data Use Data To Answer Critical Questions Generate Reports/Data Visualizations for Stakeholders

POLL: Biggest Challenges

Overview of Linking Week Activities Monday - Governance and Technical Considerations Tuesday- Critical Questions Wednesday- State Data Thursday- Privacy and Confidentiality Friday- Linking Resources Check out the blogs, resources, linking video and visuals! Evaluation will be sent out on Friday (5/19) for all webinars

Final presentation slide Visit the DaSy website at: http://dasycenter.org/ Like us on Facebook: https://www.facebook.com/dasycenter Follow us on Twitter: @DaSyCenter

Acknowledgment The contents of this presentation were developed under a grant from the U.S. Department of Education, # H373Z120002. However, those contents do not necessarily represent the policy of the U.S. Department of Education, and you should not assume endorsement by the Federal Government. Project Officers, Meredith Miceli and Richelle Davis.