Improving the availability and quality of surveillance data on foster care youth

Project Name: Improving the availability and quality of surveillance data on foster care youth

Project Status: Proposed

Point of Contact: Rebecca T. Leeb

Center: National Center on Birth Defects and Developmental Disabilities

Keywords: Foster care, Surveillance, Child welfare, Data linkage

Project Description:

Objectives & Stakeholders: We propose a multi-agency project to improve the availability and quality of surveillance data on youth transitioning from foster care to independent living. Funding will provide supplementary support for the RI Department of Children, Youth and Families (RIDCYF) to enhance an emerging data integration system (RI DataHUB). Specifically, RIDCYF will partner with a multi-agency federal team to examine the usability of the RI DataHUB and availability of multi-source administrative data on indicators of health and well-being of youth as they age out of the foster care system within RI DataHUB. This project will also assess current gaps in data availability and explore the interoperability and feasibility of adding administrative data sources to an existing data warehouse.

Background: There are more than 405,000 children, 0-20 years old, in the United States foster care system. Of these, approximately 10% will emancipate each year – or “age-out” –  from the foster care system when they reach the age of majority in the state in which they reside (usually age 18, but 20 or 21 in some states). Immediately upon aging out, foster care, youth lose all housing benefits and financial assistance provided to wards of the state. They may also lose access to healthcare and their assigned case manager or social worker. As a result, and in combination with high rates of childhood trauma, they are at disproportionately high risk compared to their peers to be homeless, unemployed, and uninsured, as well as to require and use medical, psychological, and other social services (Chapin Hall, 2016; Emam & Golden, 2014; Kaiser Family Foundation, 2010 ). Medicaid costs for these youth are estimated to be twice to three times that of other Medicaid youth (Howell et al., 2013).

Data on the health and well-being of youth in foster care and as they age-out of the foster care system are fragmented across multiple state-level agencies and multiple administrative data sources. Each source contains some, but not all of the information needed to provide a full understanding of the complex picture of the needs and strengths of these youth. State-level initiatives designed to integrate administrative data sources are emerging, but the utility of integrated data systems to provide high quality epidemiological information about the health and well-being of vulnerable youth has not been examined, and gaps in essential data have not been systematically identified.

The Rhode Island Providence Plan (ProvPlan) DataSpark initiative (1, 2) maintains one of the largest data warehouses in the state of Rhode Island (RI DataHUB) (3). The Rhode Island Department of Children, Youth and Families (RIDCYF) has a history of partnering with ProvPlan and, with the support of the CDC Surveillance Innovation program, is uniquely poised to pilot test the usability of the RI DataHUB to examine the availability of multi-source administrative data on indicators of health and well-being of foster care youth, and to identify gaps in the data that are available through the RI DataHUB.

Methodology: RIDCYF will work with the ProvPlan DataSpark RI DataHUB to access relevant administrative data from child protective services, education, health department, labor and training, and criminal justice data sources. In collaboration with the multi-agency federal project team (including representation from CDC, Administration for Children, Youth and Families, Centers for Medicare and Medicaid Services, Substance Abuse and Mental Health Services Administration and Family Services of Rhode Island), RIDCYF will determine key indicators of health and well-being for this population, as well as areas in which gaps exist in key data sources. Available multisource data will be aggregated for analysis. Analyses will focus on clarifying the complex picture of risks and strengths of this population. Where gaps in key data sources are identified, RIDCYF will explore the interoperability, feasibility, and logistics involved in linking new administrative data to the data currently available through RI DataHUB.

Impact: Pilot testing the usability of linked data available through RI DataHUB and examining the feasibility and interoperability of linking additional data sources to the current warehouse will permit a better understanding of the usefulness of linked administrative data to enhance our understanding of the health and well-being needs of high-risk youth transitioning to adulthood. With this knowledge we can better target health services to improve the well-being of this population and reduce the disproportionate cost burden this population places on the health care and social welfare systems.

Scalability: Experience and lessons learned from the proposed pilot project can be applied to other state-level initiatives to integrate administrative data sources in order to elucidate the epidemiology of complex social health problems. Knowledge gained from exploring linkage of new administrative data to established data integration systems can provide a foundation for best practices that can be used by agencies and organizations expanding their data integration systems.

Measure(s) of Success: By completion of this project, (1) RIDCYF will have systematic documentation of the available data for, and data gaps to, understanding the strengths and needs of youth transitioning from the foster care system to successful and healthy independent living; (2) a federal interagency collaborative team will be established that is capable of assisting other state-agencies to evaluate the utility and interoperability of integrated data systems to assess complex social health issues; and (3) documentation of the processes and necessary resources to add data sources to existing data integration systems will be available.

For more information about this project, please contact the CHIIC at chiic@cdc.gov or Maria Michaels at maria.michaels@cdc.gov