Maternal and Child Health Bureau (MCHB) Grant for a National Center for CYSHCN Health Insurance & Financing

National leadership for ensuring the health of CYSHCN needs is provided by the Maternal and Child Health Bureau (MCHB) within the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA).  A key strategy for achieving optimal health for these children is providing and promoting family-centered, community-based, coordinated care for CSHCN and their families.  Progress toward achieving this goal is measured by six core outcome measures including the health insurance core outcome:  “access to adequate private and/or public insurance and financing to pay for needed health and health-related services for CYSHCN.”

The MCHB measures achievement of the health insurance core outcome using data from the National Survey of Children with Special Health Care Needs (NS-CSHCN), which has been administered in 2001, 2005/2005 and 2009/2010.  Over the last 10 years, there has been a significant increase in the number of CYSHCN who meet the health insurance core outcome.  However, disparities still exist in accomplishing this core outcome among underserved populations, especially Hispanic and African American children, older children and children with the most significant functional limitations.  Moreover, the adequacy of coverage has been decreasing over the last decade, especially for CYSHCN with private insurance.

Many provisions in the Patient Protection and Affordable Care Act (ACA) have already had a positive impact on health coverage for CYSHCN, such as Section 1001 that allows for an extension of private coverage for children under a parent’s policy until the age of 26.  However, even when the ACA is fully implemented, innovative strategies and policies will still be needed to continue to make progress on the health insurance core outcome.  For example, coverage in a few of the essential health benefit categories is limited for CYSHCN, including habilitative, behavioral health, pediatric vision, and pediatric oral health services.  States may choose benchmark plans that do not provide the comprehensive benefits needed by CYSHCN, putting families at financial risk to cover these services.  Families of CYSHCN also face challenges to pay for other services not covered by health insurance, such as respite care and nutritional supplements.

The National Center will focus on the following key strategies: 

Provide support and technical assistance to state Title V programs and their partners to maximize access for CYSHCN to health insurance and other relevant services as provided under the ACA and to other innovations in health care reform and the financing of health care delivery.
Engage Federal, state and community stakeholders and partners in ensuring that implementation of the ACA and other health care delivery financing efforts address the needs of CYSHCN.
Support efforts to improve coordination between Title V, Medicaid, and the Children’s Health Insurance Program (CHIP), especially related to care coordination, EPSDT coverage, enrollment, and quality improvement.
Identify and support policy and program initiatives at the state and Federal level to reduce disparities in health insurance coverage and other health care financing among underserved CYSCHN, including Hispanic and African American children, older children and those with the most significant functional limitations
Monitor, analyze and report on emerging Federal and state trends, legislation, regulations and other relevant policy proposals related to health insurance and other health care financing.
Identify and support innovative financing strategies to improve reimbursement for services used by CYSHCN.
Promote strategies and policies to finance additional services which generally are not covered by private and/or public insurance.
Monitor progress in achieving the health insurance core outcome and document the National Center’s impact on improving access to adequate health insurance.

Some examples of activities include the following:

Organize state teams which include State Title V programs, families, Medicaid, private payers and health professionals to collaborate and spread evidence-based models in their state that will improve access to adequate health insurance and financing for CYSHCN, especially for CYSHCN facing disparities.
Provide technical assistance and training to State Title V programs and their partners on ACA, health care reform, Medicaid and other health care delivery financing models as related to CYSHCN.
Develop and disseminate resources materials and products such as policy briefs, chart books, toolkits and issue papers to a range of partners and audiences, including State Title V agencies, families, State Medicaid Directors, Federal agencies, health plans, employers, national associations, and advocacy organizations as related to CYSHCN.
Convene and participate in expert work meetings and conference calls relevant to the improving health care coverage.
Maintain and update a repository of relevant materials and provide information and assistance to stakeholders such as State Title V programs, family organizations, grantees and providers.
Conduct training to State Title V on collecting, analyzing and using quantitative and qualitative data to generate evidence for the impact of improving health insurance and financing.
Coordinate activities with other MCHB funded National Centers, including participation on conference calls and expert meetings.
Collect, analyze, and expand the current body of evidence-based health insurance and financing models for CYSHCN, including periodic review of peer reviewed published and non-peer reviewed published literature, and materials from other grantees and disseminate those findings.