State agencies for Part C and Part B 619 regularly receive requests for data from internal and external parties. Part C and Part B 619 programs should develop a data request policy to establish what data are available, to whom, in what formats, for what purposes, and how data requests are to be handled. In many cases, Part C or Part B 619 staff members can help the requestor better understand the strengths and limitations of the data and increase the likelihood that agency efforts are spent on fulfilling viable requests. This section contains topical information, a packet with a considerations worksheet and a policy template, and an option to request technical assistance.
Protection of personally identifiable information (PII) is paramount, yet appropriately sharing data can lead to innovations in research, policies, and practices—innovations that benefit children, families, practitioners, and teachers. Data requested may be for a summary about a subpopulation of children, such as trends in the number of children with autism over the last 15 years or the number of referrals received from neonatal intensive care units. An external researcher or a member of another state agency might request trend data for development of grant applications, or a state legislator may request data about the entire program population of children. Part C and Part B 619 programs must balance being responsive to data requests with ensuring data confidentiality and privacy to prevent violation of state and federal requirements. Therefore, a data request policy is a necessary part of comprehensive Part C and Part B 619 data governance.
A data request policy should outline the requirements for the release and use of requested data that are consistent with federal and state requirements. Part C and Part B 619 programs need to understand relevant federal and state agency regulations whether they are considering developing a new data request policy or are reviewing an existing policy.
A number of regulations apply when a data request involves releasing PII. Per federal Part C IDEA regulations, parents of referred children have the right to confidentiality of PII, including receiving written notice of, and providing consent to, the exchange of PII among agencies (34 CFR 303.401(a)). Further, IDEA regulations for Part C (34 CFR 303.414(a) and (b)) and Part B (34 CFR 300.622(a) and (b)) address the circumstances in which parental consent must be obtained and when information disclosure is authorized without consent by FERPA (34 CFR 99. 31). Finally, the Uninterrupted Scholars Act (USA) amended FERPA in January 2013 to permit education agencies to disclose PII from the education records of children in foster care placement, without parental consent, to an agency caseworker or other representative of a state or local child welfare agency or tribal organization authorized to access a child’s case plan when the agency is legally responsible for the care and protection of the child (20 U.S.C. § 1232g(b)(1)(L)). FERPA has additional exceptions to the release of PII without parental consent including the audit and evaluation exception that requires a data sharing agreement. These regulations at 34 CFR 99.31 describe permissive exceptions and apply to Part B and Part C as well as to FERPA.