CISWH Project Resources

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. 

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.

This tutorial gives a broad overview of Medicaid and CHIP, the many different populations these programs serve, the changes they are undergoing under health reform, and some details to help readers think about opportunities to improve access to coverage for CYSHCN through communication and collaboration with Medicaid and CHIP staff. The tutorial starts in section 1 with an overview of how definitions of CYSHCN may vary by agency or program. This is followed by eleven additional sections that address major topic areas and recommendations for steps Title V programs can take to build successful partnerships with public insurance programs.

Every state has a Newborn Screening (NBS) Program which screens newborns for a variety of health conditions, including selected inborn errors of metabolism (IEMs) and other genetic disorders. Individuals with genetic conditions identified through NBS programs often require Modified Low Protein Foods (MLPFs), medical foods, dietary supplements, or other dietary treatments as well as enteral feeding supplies. Due to the wide-ranging funding mechanisms across states, coverage for these categories of products and supplies varies based on type of insurance coverage (e.g., public or private), type of health plan (e.g., individual, group, HMO), and any coverage and or related services that Title V or other state programs may fund.

This resource provides information about state-specific legislation that mandates the coverage of medically necessary foods by employer-sponsored health insurance and Medicaid, and coverage and related services funded by other state programs such as Title V or relief funds. It also details the covered services as well as any benefit limits or age and income restrictions. This report builds on a 2008 report of the same name by Alissa Johnson, and an update to that report from the Catalyst Center and the National Coordinating Center for the Regional Genetics Networks (NCC) published in 2016.

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.

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.

Under the Families First Coronavirus Response Act, state Medicaid programs are eligible to receive an additional 6.2 percent federal funding match provided they meet certain Maintenance of Effort (MOE) requirements. One of these requirements includes providing continuous eligibility to enrollees through the end of the month in which the Public Health Emergency (PHE) ends. After the PHE expires, states will need to redetermine the eligibility of over 80 million Medicaid enrollees, including an estimated 37.3 million children.

This Catalyst Center explainer describes how the end of the MOE requirement under the PHE could impact children and youth with special health care needs (CYSHCN), and outlines specific actions state Title V programs can take to help ensure continuous coverage for CYSHCN.

In 2014, the Centers for Medicare and Medicaid Services (CMS) reversed the 1997 Medicaid policy known as the Free Care Rule, which limited the ability of schools to bill Medicaid for student health care services. In this explainer, the Catalyst Center provides an overview of the Free Care Rule reversal, outlines actions states have taken to implement the policy change resulting from the reversal, and describes how State Title V Maternal and Child Health (MCH) and CYSHCN programs can collaborate with stakeholders to expand access to services in schools through Medicaid reimbursement.

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. 

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) had the unique opportunity to study the experiences of health care providers and families of CMC in 2020 as care delivery quickly transitioned to telehealth. Now, as in-person services have returned, reflecting on what we have learned can help shape the future of telehealth for CMC.

This package includes:

1. A telehealth learnings infographic on strategies for success, family perspectives, and centering equity.
2. A short podcast interview with the Kentucky CMC CoIIN Team about their experience expanding telehealth during the COVID-19 shut down and the benefits of telehealth for children and families they serve.
   1. Podcast Producer/Host: Candace Jarzombek, Graduate Research Fellow
   2. Featuring:
      1. Donna Croslin, Nurse Administrator
      2. Davenna Bales, Nurse Administrator
      3. Sondra Gilbert, Director, Family 2 Family Information Center & Parent Consultant