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Article History

Received: 31 July 2020

Accepted: 2 January 2021

First Online: 19 January 2021

Ethics approval and consent to participate

: All study procedures were approved by the University of Chicago Social Services Administration-Chapin Hall Institutional Review Board (SSA IRB). Participant consent procedures were approved by the SSA IRB. Written consent was obtained for all family and stakeholder interview participants. All focus group participants provided verbal consent. We obtained a waiver for written informed consent for the focus groups because the research presented no more than minimal risk of harm and involved no procedures for which written consent is normally required outside of a research context, and written consent would be the only record linking the subjects to the research. At each focus group, we asked subjects to affirm their agreement to participate in the study and to be recorded at the start of the audio recording.Families (adult parents/caregivers) provided written consent for researchers to access electronic health record and Medicaid claims data. Data sharing agreements and business associate agreements for sharing protected health information were executed with each clinic, health system, or state Medicaid agency and approved by the SSA IRB and in the case of one clinic as required, their hospital system IRB.

: Not applicable.

: The authors declare that they have no competing interests.