Financing Care for CYSHCN in the Next Decade: Reducing Burden, Advancing Equity, and Transforming Systems

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Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), presented by the Maternal and Child Health Bureau at the Health Resources and Services Administration, outlines principles and strategies that can be implemented at the federal and state levels and by health systems, health care providers, payors, and advocacy organizations to achieve a strong system of care for children and youth with special health care needs (CYSHCN). The vision for the financing of services outlined in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and their Families is one in which health care and other related services are accessible, affordable, comprehensive, continuous, and prioritize the wellbeing of CYSHCN and their families. There are several barriers caused or exacerbated by health care financing policies and structures that pose significant challenges for families of CYSHCN, including finding appropriate and knowledgeable provider care teams, ensuring adequate and continuous coverage for services, and ensuring benefit adequacy. Racial disparities and societal risks all exacerbate these challenges. This article outlines recommendations for improving financing for CYSHCN, including potential innovations to address barriers, such as state Medicaid expansion for CYSHCN, greater transparency in medical necessity processes and determinations, and adequate reimbursement and funding. Financing innovations must use both current and new measures to assess value and provide evidence for iterative improvements. These recommendations will require a coordinated approach among federal and state agencies, the public sector, the provider community, and the families of CYSHCN.