Early Intervention Program rules (Part C): confidentiality, access, consent, amendment, safeguards and destruction for personally identifiable information of infants and toddlers

Section 60-50-938 of the NMI Administrative Code provides that participating agencies, including the Public School System and early intervention service providers, comply with the Part C confidentiality procedures in sections 303.401 through 303.417 of title 34 of the Code of Federal Regulations.

A participating agency is any individual, agency, entity or institution that collects, maintains or uses personally identifiable information to implement Part C with respect to a particular child, and includes the lead agency and any individual or entity that provides any Part C services, but does not include primary referral sources or public agencies or private entities that act solely as funding sources for Part C services.

When a child is referred under Part C, the Public School System must give parents notice that is adequate to fully inform them of the children on whom personally identifiable information is maintained, the types of information sought, how it is gathered and used, the policies on storage, disclosure to third parties, retention and destruction, their rights under the Part C confidentiality provisions, and the extent to which the notice is provided in the native languages of the population groups in the state.

Each participating agency must comply with a parent's request to inspect and review early intervention records without unnecessary delay and in no case more than 10 days after the request has been made.

The parent's right to inspect and review includes the right to request copies of the early intervention records if failure to provide them would effectively prevent the parent from exercising the right to inspect and review, and the right to have a representative of the parent inspect and review the records.

Each participating agency must keep a record of parties obtaining access to early intervention records, except access by parents and authorized representatives and employees of the participating agency, including the name of the party, the date access was given, and the purpose for which the party is authorized to use the records.

A participating agency may charge a fee for copies of records made for parents if the fee does not effectively prevent the parents from exercising their right to inspect and review, may not charge a fee to search for or retrieve information, and must provide at no cost a copy of each evaluation, assessment of the child, family assessment and individualized family service plan as soon as possible after each plan meeting.

A parent who believes that information in the early intervention records is inaccurate, misleading, or violates the privacy or other rights of the child or parent may request that the participating agency amend the information, and the agency must decide within a reasonable period of time and, if it refuses, inform the parent of the refusal and of the right to a hearing.

On request the participating agency must provide parents with the opportunity for a hearing to challenge information in their child's early intervention records to ensure that it is not inaccurate, misleading, or otherwise in violation of the privacy or other rights of the child or parents.

If the hearing shows the information to be inaccurate, misleading or in violation of the privacy or other rights of the child or parent, the participating agency must amend the information accordingly and inform the parent in writing.

Prior parental consent must be obtained before personally identifiable information is disclosed to anyone other than authorized representatives, officials, or employees of participating agencies collecting, maintaining, or using the information under Part C. A participating agency may not disclose personally identifiable information to any party outside the state's Part C system without parental consent unless authorized under the listed federal Part C provisions or an exception in section 99.31 of title 34 of the Code of Federal Regulations, which the rule expressly adopts for Part C. The Part C program must disclose to the Part B program and the local educational agency where the child resides the child's name, date of birth, and parent contact information, including parents' names, addresses, and telephone numbers.

The CNMI has not adopted a policy permitting a parent to object to the disclosure of personally identifiable information. Each participating agency must protect the confidentiality of personally identifiable information at the collection, maintenance, use, storage, disclosure, and destruction stages, one official at each participating agency must assume responsibility for ensuring its confidentiality, and all persons collecting or using it must receive training or instruction.

Each participating agency must maintain, for public inspection, a current listing of the names and positions of the employees within the agency who may have access to personally identifiable information. The participating agency must inform parents when personally identifiable information collected, maintained, or used under Part C is no longer needed to provide services to the child, and the information must be destroyed at the request of the parents.

A permanent record of a child's name, date of birth, parent contact information including address and phone number, names of service coordinators and early intervention service providers, and exit data including year and age upon exit, and any programs entered into upon exiting may be maintained without time limitation.