Data Collection and Analysis

Collecting and analyzing data about CYSHCN populations allows Title V programs to understand population needs and tailor services accordingly. Collaboration on data collection and analysis with other agencies, such as Medicaid, can strengthen interagency partnerships and lead to the creation of cross-agency solutions. Many state CYSHCN programs use data collection strategies to track gap-filling services and improve the quality of services for families.

Data Sharing with Medicaid

Several state Title V agencies, including those in Kentucky, Maine, Puerto Rico, the District of Columbia, and Montana, have data sharing agreements with Medicaid. The Kentucky CYSHCN program uses Medicaid data to populate a data dashboard identifying CYSHCN by diagnosis and location across the state, and Montana’s epidemiologists use Medicaid data to track progress on Title V National Performance Measures. The Puerto Rico CYSHCN program uses Medicaid data to better understand health care utilization by the CSHCN population domain by sociodemographic characteristics, diagnoses, and/or other factors; to make informed decisions; to report annually to Title V; to have availability of special data in the case of emergent public health issues or special projects/research among others. In DC, the Title V agency works with Medicaid on the School Health Requirements Interagency Committee to ensure that families are engaging in routine primary and preventative care. Sharing data between the agencies allows for synthesis of student-level data, analysis of trends, and development of cross-agency strategies to address concerns and better target services for children enrolled in Medicaid.

The Ohio Department of Health, which houses the state’s Title V agency, and the Ohio Department of Medicaid have strengthened their relationship with joint decision-making made possible through data sharing. The two agencies have developed common metrics, created dual data reports, and developed processes for bi-directional data exchange. The agencies meet biweekly to support data sharing and advise on policy implementation and planning processes. This collaboration has assisted in coordinating health services, conducting outreach, determining program eligibility, and paying for services.

Using Data to Identify Children Served by Both Medicaid and Title V CYSHCN Programs

In North Dakota, the Title V CYSHCN program and Medicaid use the same payment system, which allows Title V to identify children who are enrolled in Medicaid and provide gap-filling services for those families.

New Hampshire’s Title V agency has access to New HEIGHTS, the enrollment management system for Medicaid recipients, which allows them to confirm eligibility when enrolling children in the CYSHCN program. Title V staff indicate enrollment in the CYSHCN program in New HEIGHTS, so that Medicaid is also aware of their involvement.

The Kansas CYSHCN program works with Medicaid MCO partners to work toward providing appropriate services and quality care coordination to dually enrolled clients. MCOs share data around authorized Medicaid services monthly, which allows CYSHCN staff to assist clients in scheduling appointments, filling prescriptions, and communicating with providers. Care coordinators from both agencies work together to address gaps or barriers in services.

Title V-Administered Data Collection

The Louisiana Department of Health collaborates with Louisiana State University to conduct a bi-annual statewide health insurance survey. The Louisiana Health Insurance Survey (LHIS) has been the primary source of health insurance related data for the state since 2003.

New York’s Title V CYSHCN program collects, analyzes, and publishes a report on data collected by local health departments. In addition to reporting on demographics and health conditions, the report synthesizes data on health insurance coverage, insurance adequacy, and family financial impacts and support needs. Reports are publicly available on the CYSHCN program website.

Illinois’s CYSHCN program conducted a survey of families raising CYSHCN modeled after the National Survey for Children’s Health (NSCH). They were able to collect responses from 1,005 families and compare the results to NSCH data on several outcomes, including insurance adequacy.

Financing and Coverage Related Quality Improvement

Iowa’s CYSHCN program is housed within the University of Iowa, which gives them access to the university health system’s infrastructure and resources. Title V-provided care coordination and direct patient care services are documented in the health system’s electronic health record system, and the university’s patient financial services staff regularly conducts reviews of the payor mix and reimbursement rates for these services. With this information, Title V can raise any concerns to the Iowa Medicaid Enterprise, which oversees the Medicaid MCOs.

On a yearly basis, the North Dakota CYSHCN program presents data about CYSHCN who utilize their services disaggregated by race, gender, special health care need or condition, and services utilized to a team of medical professionals. These professionals advise the program and assist in examining the gap-filling services Title V is providing. Because CYSHCN program eligibility is diagnosis-specific in North Dakota, Title V and the medical professional team use data from family requests to determine whether to add a diagnosis to their list of covered conditions.

Vermont’s Title V program reviews applications for gap-filling funding to examine trends in requests. If they notice that multiple families are requesting funding for the same service, or a service that should fall under the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit, Title V staff approach Medicaid about providing coverage for it.