Inter-agency data sharing and
protection: Measuring child wellbeing in the United States
Michael J. Lawler, MSW, PhD
University of South Dakota, USA
Gail S. Goodman, PhD, Ingrid M. Cordon, PhD, & Shay
O’Brien, MSW
University of California, Davis, USA
Measuring child well-being for child
welfare services in the US
Adoption and Safe Families Act (1997) +
Child Welfare Indicators Research (e.g., Land et
al., 2001) +
Evidence Based Practice (e.g., IOM, 2001)+
Belief in the impact of data (e.g., O’Hare, 2008)
= US Child and Family Services Reviews (first
round completed in 2004)
Child and Family Service Reviews
(CFSR) for child welfare services
• Safety – Lack of abuse, neglect
• Permanency – Home with family, adoption
• Family and Child well-being – Health,
Education, Mental Health, Criminal history
• Plus, many states adopted additional
measures and operational definitions
• No state met all CFSR standards for safety,
permanency, & well-being
Project Description
• California Department of Social Services
contracted with the University of California,
Davis for two phases of the project:
– Phase I: Inter-agency data sharing between
California Health & Human Services state and
county (58 counties) agencies (Wilson, Goodman,
& Lawler, 2006). Can we?
– Phase II: Data sharing and linkages between
agencies and national best practices (Goodman et
al., 2009). How can we?
Methods
• Review of research literature and federal and
state regulations
• Structured interviews with county, state,
tribal, and national agencies
• Case studies review
• Expert panels
Different levels of measuring child
welfare outcomes
• Safety – Federal reporting of child abuse and
neglect (individual and aggregate)*
• Permanency – Federal reporting of federally
supported child placements (individual and
aggregate)*
• Well-being – Decentralized across jurisdictions
(states, counties, cities, school districts). Some
data have federal reporting (mostly aggregate)
• *Measured well by UC Berkeley
Decentralized social welfare agencies
• California as an example:
• Health & Human Services –
– 6 state agencies (Mental Health, Social Services,
Alcohol and Drug Programs, Developmental
Disabilities, Health Care Services, Public Health)
– 58 counties with those same agencies
– Overall population of 36 million
– 90,000 children in out of home care (foster care)
Decentralized education
• California as an example:
• Education
– State department of Education
– 58 county Education offices
– Approximately 1,000 school districts and 9,000
schools
– 7 million students
Protections for child well-being data
• Health Insurance Portability and
Accountability Act (HIPAA) – Protects
healthcare information
• Family Educational Rights and Privacy Act
(FERPA) – Protects educational information
• Both protect rights but can prevent agencies
from sharing with each other, especially when
not mandated to share
Data challenges for agencies in the US
• Legally, agencies cannot act outside the power
delegated to them under statute (Dawes,
1996)
• HIPAA and FERPA, and potential litigation,
inhibit broader interpretations of statutes
• “Data people” and “program people”
designations may affect data quality
• Departmental and professional silos
Data sharing solutions
• Re-conceptualize data sharing in terms of both
client-oriented and operations-oriented to
reflect program and data
• Direct connections between case
management and performance management
contribute to better data quality and
commitments to data sharing
• Example - San Diego County, California
Data sharing solutions
• Short-range goal setting
– Memoranda of Understanding between entities
– Court-ordered agreements
– HIPAA Business Associate Agreements
– Small, focused data workgroups
– Sampling for some measures
– Examples – Los Angeles County, Santa Clara
County, California
Data sharing solutions
• Long-range goal setting
– Federal and state level advocacy for
reinterpretation of statutes
– Greater standardization of data elements,
collection processes, and languages
– Investment in human resources for data
management
– Bringing together technology, policy, and legal, as
well as political will
– Example – Colorado’s “Virtual Court”
Data sharing solutions
• Use of Centralized Date Warehouses
– Can be used as one-stop option for multiple data
sources entered and matched confidentially for
individual and aggregate data (McDonald &
Associates, 2008)
– Examples – Allegheny County, Pennsylvania,
National Center for Health Statistics, Department
of Health Care Services, California
References
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Adoption and Safe Families Act (1997). Public Law No. 105-89, 42 USC § 1305.
Dawes, S. (1996). Interagency information sharing: Expected benefits, manageable risks.
Journal of Policy Analysis and Management, 15, 377-394.
Goodman, G.S., Lawler, M.J., O’Brien, S., Wilson, K., Cordon, I.M., & Iandoli, C.C. (2009).
California Department of Social Services and Child Welfare Council Data Linkages
Project. Sacramento, CA: California Department of Social Services.
Institute of Medicine (2001). Crossing the quality chasm: A new health system for the
21st Century. Washington, DC: Author.
Land, K.C., Lamb, V.L., & Mustillo, S.K. (2001). Child and youth well being in the United
States, 1975-1998: some findings from a new index. Social Indicators Research, 56,
241-320.
McDonald, W.R., & Associates (2008). Analysis of existing data collection programs and
data warehouse efforts. Report submitted to Casey Family Programs on March 28,
2008. Sacramento: Author.
O’Hare, W.P. (2008). Measuring the impact of child indicators. Child Indicators
Research, 1, 387-396.
Wilson, K., Goodman, G.S., & Lawler, M.J. (2006). Interagency measurement of child
well-being. Sacramento, CA: California Department of Social Services.