CISWH Project Resources

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 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.

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 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. 

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.

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.

The infographics share the experiences of families in the CMC CoIIN focus groups related to the impact of COVID-19 on their child and family and the benefits and challenges of telehealth. 

Panelists from the 10 CMC CoIIN state teams reflect on their learnings from their quality improvement projects in an interactive panel conversation. 

National Care Coordination Academy teams presented their project’s goals, accomplishments, challenges, and next steps in this final meeting.

A brief look at the benefits of Peer Family Navigation, who may support building it in the community and potential costs.