Keeping Medicaid’s Promise: Strengthening Access to Services for Children With Special Healthcare Needs

Prepared in partnership with the Robert Wood Johnson Foundation and the Lucile Packard Foundation for Children’s Health

Medicaid covers about half of all children with special healthcare needs in the U.S., playing a central role in addressing the complex physical and behavioral challenges of this particularly vulnerable population.1 Although federal law requires that Medicaid provide all beneficiaries under age 21 with comprehensive pediatric healthcare services through provisions known as Early and Periodic Screening, Diagnostic, and Treatment (EPSDT),2 children with special healthcare needs and their families face numerous challenges when seeking to access services. Almost a fifth of families of children with special healthcare needs report at least one unmet need (such as access to preventive or specialist care)—and that number increases to 44% for children who are medically complex.3

How can state Medicaid agencies, families, advocates, providers and other stakeholders partner to improve access to services for Medicaid-enrolled children with special healthcare needs? To answer this question, Manatt Health, the Robert Wood Johnson Foundation and the Lucile Packard Foundation for Children’s Health have developed a new issue brief that:

  • Reviews the complex and diverse challenges faced by children with special healthcare needs
  • Provides an understanding of Medicaid’s commitment to children, including an overview of EPSDT, with a detailed look at Medicaid’s unique definition of medical necessity for children
  • Lays out eight best-practice strategies state Medicaid agencies can implement to improve access to healthcare for children with special healthcare needs
  • Offers real-world examples of innovative initiatives states are executing to enhance services, screening, communication, care coordination, and monitoring for children with special healthcare needs and their families

Read the full issue brief here. Read the executive summary here.

1 Henry J. Kaiser Family Foundation, Medicaid’s Role for Children with Special Health Care Needs: A Look at Eligibility, Services, and Spending (June 12, 2019), available at https://www.kff.org/medicaid/issue-brief/medicaids-role-for-children-with-special-health-care-needs-a-look-at-eligibility-services-and-spending/ (last visited on May 28, 2019).

2 Social Security Act § 1905(r); 42 U.S.C. § 1396d.

3 Dennis Z. Kuo, et al., Health Affairs, Inequities In Health Care Needs For Children With Medical Complexity (December 2014), available at https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2014.0273 (last visited on May 28, 2019).