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. 

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

This brief presents evidence on the cost effectiveness of comprehensive service delivery models to improve care for children with medical complexity (CMC) and describes the unique challenges in cost effectiveness evaluations for this population. It also points to Medicaid policy opportunities that provide financial support for a developmental period, whether focused on model development or systems building expansion. This information is offered as a resource to help make the financial case for further development and expansion of service delivery models for CMC.

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. 

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.

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.