Serving CYSHCN Through State Medicaid Managed Care and Title V Partnerships

This presentation, developed by the National Academy for State Health Policy (NASHP) in collaboration with the Catalyst Center, aims to support Title V programs in understanding Medicaid managed care (MMC), how it impacts Children and Youth with Special Health Care Needs (CYSHCN), and how to leverage MMC to improve the care delivered to CYHSCN. Each slide contains speakers notes providing more detail on the slide contents. Title V programs can consider adapting the slide deck to present to their respective audiences. 

The supplemental resources document lists additional resources describing how to leverage Medicaid managed care to improve the care delivered to CYSHCN.


Leverage Opportunities + Speak the Medicaid Language: A Workbook for Title V

Leverage Opportunities + Speak the Medicaid Language: A Workbook for Title V focuses on Medicaid as an important element of the system of services for Children and Youth with Special Health Care Needs (CYSHCN), as it is the single largest payor for CYSHCN and provides a robust benefits package for children. The workbook includes didactic sections that describe elements of the Medicaid program, as well as questions to guide users through the process of mapping the Medicaid system in their own state.

The purpose of this resource is to:

  • Increase Title V program staff knowledge about topics related to financing and the system of services for CYSHCN, especially Medicaid
  • Increase Title V staff ability to describe their role in financing and the system of services for CYSHCN
  • Facilitate the identification of financing-related strategic priorities for state Title V programs.

The Workbook is a fillable PDF, you may digitally enter information to answer the questions. You may also print the entire document, or specific chapters.

Strategies to Improve Continuous Medicaid Coverage for Children and Youth with Special Health Care Needs (CYSHCN)

Continuous health insurance coverage is critical for ensuring access to care for children and youth with special health care needs (CYSHCN). Lapses in coverage for CYSHCN can result in forgone medical care, unmet health needs, and family financial hardship. Within Medicaid, approximately 10% of all enrollees experience churn, meaning they are disenrolled and re-enrolled within a short period of time. Several factors contribute to churn, including short term changes in employment status or earnings, and challenges completing the process of renewing Medicaid coverage, sometimes known as administrative burden.

This explainer provides an overview of state strategies to ensure continuous coverage for children enrolled in Medicaid and presents opportunities for Title V to promote continuous coverage for CYSHCN in particular.

The Impact of the 2021 Expanded Child Tax Credit (CTC) on Families Raising Children with Disabilities

The 2021 expanded Child Tax Credit (CTC) provided temporary enhancements to the existing CTC for the tax years 2021 and 2022, including increasing the credit’s maximum value and removing the minimum income criterion for refundability. As a result, even households with no income were eligible for the full credit. These temporary changes supported families who were at higher risk of financial hardship, such as those raising children with disabilities.

In this report, researchers at the Catalyst Center at Boston University, the Social Policy Institute at Washington University of St. Louis, and Appalachian State University use a nationally representative survey of US families to explore the impacts of the CTC on families raising children with disabilities. The report describes the receipt, usage, and perceived impacts of the CTC payments for families raising children with disabilities, and how these elements compared with those of families without children with disabilities. The report also presents data on differences in usage among families raising children with disabilities based on race/ethnicity and income. The policy brief, designed for advocates and policymakers, summarizes the findings of the full report. 

Health Home Services for Medicaid Enrolled Children with Medically Complex Conditions

Children with medically complex conditions (CMC) rely on a variety of services both in and outside of the health care system. Comprehensive care planning, assuring access, and coordinating these services for CMC is critical for their well-being. The Centers for Medicare and Medicaid Services (CMS) created a state plan option for Health Homes through Section 1945A of the Social Security Act which was established by the Advancing Care for Exceptional (ACE) Kids Act of 2019.

Section 1945A establishes a state plan option for Health Homes specifically for CMC. State implementation of this option became available on October 1, 2022. This policy explainer describes the details of the 1945A state plan option and current CMS guidance to interested state agencies, including state Title V and Medicaid programs.

Medicaid’s Transportation Benefit and Children and Youth with Special Health Care Needs (CYSHCN)

Transportation is essential for children and youth with special health care needs (CYSHCN) to regularly access health care and support chronic health conditions that require ongoing treatment. However, CYSHCN are significantly more likely to delay care due to transportation barriers than children and youth without a special health care need. State Medicaid agencies are required to administer the non-emergency medical transportation (NEMT) benefit, which provides coverage for rides to and from medical appointments for all Medicaid beneficiaries. States determine when a ride is necessary (e.g., a beneficiary has a mental or physical disability). Knowledge of the NEMT benefit can assist state health officials, including state Title V program staff, in supporting access to care for CYSHCN enrolled in Medicaid.

Medical Necessity Webinar Series

In April, May, and June of 2022, the Catalyst Center and the National Coordinating Center for the Regional Genetics Networks, two programs supported by the Health Resources and Services Administration (HRSA), hosted a three-part webinar series to help the genetics community and other interested parties better understand how to navigate medical necessity and the prior authorization process. The webinars utilize a therapeutic case study as well as family and provider perspectives. 

Part one of the series explores the definition of medical necessity and shows how evidence is used to help inform medical necessity criteria and policy.

Part two discusses EPSDT, the Title V and Medicaid relationship, and defines the first steps in the process of getting prior authorization for medically necessary services. 

Part three provides a practical application of medical necessity, including understanding the prior authorization process, requesting authorizations, and navigating denials and appeals.

Click below to access the recordings, slides, and Q&A from each of the three webinars. 

If you are interested in Continuing Medical Education (CME) credits The Medical Necessity Webinar Series is also available through the Genetics Academy, until May 31, 2024. Credits offered include: 3 CME (AMA) Credits, 3 CME (Other) Credits, and 3 Certificate of Participation Credits. Please see the course page on the Genetics Academy website for more information. 

Medicaid Reimbursement of Title V Care Coordination Services

Care coordination can help children and youth with special health care needs (CYSHCN) and their families navigate the health care system while avoiding unnecessary costs and duplicative services. States have longstanding efforts to finance care coordination services for CYSHCN and their families through Medicaid, the state Title V Maternal and Child Health Services Block Grant (Title V), and other federal and state programs.  Some states have leveraged these programs as part of unique health care delivery systems and financing structures, including Medicaid reimbursement of care coordination administered by Title V programs.

This brief, developed by the National Academy for State Health Policy (NASHP) in collaboration with the Catalyst Center, describes how State Title V and Medicaid programs in Arkansas, Illinois, and Iowa have partnered to finance and deliver care coordination for CYSHCN.

Medicaid 101 Webinar

As the single largest source of health coverage for Children and Youth with Special Health Care Needs (CYSCHN), with robust benefits and cost-sharing limits, Medicaid provides critical coverage of health care services to CYSHCN. State Title V programs are uniquely positioned to collaborate with Medicaid to promote access to the system of services for CYSHCN.

The Catalyst Center hosted a webinar on June 14, 2022, that presented foundational knowledge about Medicaid for Title V staff and their allies. Catalyst Center staff explained the basics of Medicaid including the eligibility pathways to Medicaid coverage for kids and a benefit for children unique to Medicaid called EPSDT that is crucial for access to care for CYSHCN. 

Please click the links below to access the webinar recording, slide deck, and a document with follow-up resources and Q&A responses. 



COVID-19 Resources for Children and Youth with Special Health Care Needs Library Archive

The Catalyst Center curated a collection of COVID-19 resources from numerous reputable organizations on a variety of financing and coverage related topics. This resource library previously was available as a unique page on the Catalyst Center website. In April 2022, the Catalyst Center decided to archive these resources and highlight information related to the end of the COVID-19 Public Health Emergency, available here. The resources in this archive document were last reviewed on April 26, 2022.