- ASPE’s Office of Human Services Policy and the Administration for Children and Families - Office of Planning Research and Evaluation (ACF/OPRE)
- Linking of Clinical and Other Data for Research
- Use of Clinical Data for Research
STATUS: Active Project
Research has demonstrated that parental substance use has negative impacts on child health and other outcomes later in life, including child maltreatment, medical, and behavioral health issues. Substance use disorders (SUDs) affect parents’ ability to effectively carry out parental responsibilities, and as a result is a leading determinant of child maltreatment and foster care placement. Child welfare-involved parents with SUDs are an especially vulnerable population facing additional barriers to receiving SUD treatment that are important to understand in order to provide successful treatment and sustain recovery. Some of these barriers include: 1) ability to pay for treatment; 2) adherence to treatment and the inability of courts to monitor adherence effectively; and 3) inadequate recovery supports for individuals receiving treatments and their families. A family’s involvement in the child welfare system can be an opportunity to get connected to integrated, evidenced-based treatment and services to support their path to recovery.
Understanding the correlation between treatments, additional supports provided by the child welfare system, and a return to successful daily functioning and family stability, is central to assessing positive patient outcomes for parents receiving treatment. State child welfare agencies generally track outcomes of children involved in their systems, including permanency outcomes (such as reunification with family or adoption/guardianship), and regularly monitor outcomes as youth transition to adulthood; however, health outcomes for child-parent dyads involved with the child welfare system are rarely tracked regularly and consistently, and this impedes the ability to understand how a parent’s SUD affects child-welfare involved youth.
Many states link Medicaid and child welfare case records for children in the foster care system, as it is required for new Comprehensive Child Welfare Information Systems (CCWIS), case management information systems for child welfare programs. CCWIS is currently under development in most states, as a result of federal regulations published in 2016; however, states do not typically link parent Medicaid records to the CCWIS for research. Little is known about use of Medicaid for treatment of SUD or mental health within the population of parents who have children in the child welfare system (this can mean a child protective services investigation for maltreatment or placement in foster care), or how that treatment may be associated with child welfare outcomes (including repeated maltreatment, family reunification, and later health and wellbeing outcomes). There is also a gap in knowledge around how services provided by child welfare agencies align with those paid for by Medicaid. Few if any states have the capacity to monitor SUD treatment outcomes of parents with children in child welfare systems, as adequate data on parents are rarely collected.
Two major barriers to developing the evidence are: 1) a lack of comprehensive data relating SUD diagnoses and treatment to parents involved with the child welfare systems and, 2) a lack of funding to implement SUD treatment programs in child welfare systems. The latter problem is being addressed by recent federal legislation, the Family First Prevention Services Act (FFPSA), signed into law in February 2018. This project will address the former challenge, and subsequently aid in implementing FFPSA.
PROJECT PURPOSE & GOALS
The purposes of this project is to enhance data infrastructure and increase data availability for research on a set of parents that have children in the child welfare system and are in need of treatment for opioid use disorder (OUD), other SUDs, or behavioral health issues.
The overall objectives of the project are to:
Develop datasets that link records from State Medicaid and from child welfare systems in two to four states. These data sets will contain linked patient-level data including Medicaid enrollment, patient diagnoses, services, and claims, along with child welfare outcomes.
Prepare a single, harmonized research use dataset and develop a process for external researchers to access the data.
Develop an approach for states to have an ongoing link between Medicaid and child welfare data systems, including integrating Medicaid eligibility, enrollment, and claims data with the new CCWIS. In addition, create a roadmap for other states to follow that documents the process as well as lends insight into lessons learned, challenges and successes.
Design, conduct, and encourage analyses on the research use linked dataset created in the research use dataset.