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COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs

This week, our In Focus section reviews a new report from Health Management Associates, COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs: What to Keep, Modify, or Discard?. In response to the COVID-19 pandemic, the federal government and states rapidly established new, temporary regulations and flexibilities, while providers deployed innovative technologies to connect with their patients. The report examines how COVID-19 and the responses by federal and state governments, health systems, and providers affect health care for children and youth with special health care needs (CYSHCN).

With support from the Lucile Packard Foundation for Children’s Health, an HMA team of principals Sharon Silow-Carroll and Helen DuPlessis, Consultant Elaine Henry, and Research Associate Samantha Di Paola conducted a comprehensive review of policy changes and identified those with particular implications for CYSHCN. These included flexibilities in Medicaid eligibility and reimbursement, access to services, and in particular, telehealth. The team discussed these policy changes and their impact on CYSHCN with frontline clinicians, legal and family advocates for CYSHCN, researchers, program leaders, and other public and private stakeholders.

The report identifies key policy flexibilities and the regulatory and administrative mechanisms used enact them during the public health emergency (PHE). It summarizes stakeholders’ perspectives about the impact of the flexibilities on CYSHCN and their families and providers. The report and a series of issue briefs also present recommendations for continuing certain temporary policy changes after the PHE and suggests new policies to support CYSHCN and better prepare for future emergencies.

The study’s findings include the following:

Policies that expanded reimbursement for telehealth have significantly affected and been largely advantageous to CYSHCN and their families. These included flexibility in services provided via telehealth, patient and practitioner location, technologies used, and types of providers.
Expansions in telehealth also highlighted disparities, however, as many low-income and rural families face language barriers or lack broadband access, technologies required for telehealth, and safe locations from which to conduct visits in private, or training on how to request or use telehealth. Further, states, health systems, and providers did not consistently adopt the flexibilities and make telehealth opportunities universally available, suggesting additional access challenges and inequities that warrant further study.
To soften the pandemic’s negative consequences on access to care, the federal government and state governments also relaxed provider enrollment, eligibility, and out-of-state licensure requirements for Medicare and Medicaid; broadened the scope of practice for certain health care workers; reduced administrative requirements for accessing specialty care and services; and expanded the ability of states to pay family caregivers for providing personal care to CYSHCN.
The sudden and long-term school closures, isolation, cessation of many in-person clinical visits and home care visits (both home health and personal care/direct services), lack of child care and respite care, rampant unemployment, and social determinants of health (SDOH) that have been created or exacerbated by the pandemic have put tremendous strains on CYSHCN and their families. While use of telehealth for behavioral health services increased significantly during the PHE, there has been a dearth of policies or flexibilities focused on identifying and addressing the stressors on CYSHCN and their caregivers – many of which will continue beyond the PHE.

Recommendations for improving care for CYSHCN beyond the PHE include to:

  • Continue policies supporting telehealth in Medicaid through payment parity and reimbursement for services provided through telehealth including audio-only telephone access and asynchronous contact, therapies provided by appropriate therapists, care coordination. Extend flexibility for originating and distant sites, and in out-of-state licensing for telehealth providers.
  • Target funding to reduce disparities in access to telehealth through providing telehealth equipment and training for families and providers, extending broadband coverage, and ensuring the availability of interpretation services during telehealth visits. 
  • Collect and disseminate best practices for implementing or expanding telehealth in school-based health centers and settings.
  • Reassess the workforce (specialists, therapists, etc.) serving CYSHCN to identify gaps, and consider addressing these shortages by continuing expanded scope of practice for certain non-physician clinicians with clinical and training standards.
  • Address shortages in the home care workforce through a combination of strategies, such as: funding education programs for professional and paraprofessionals, increasing Medicare and Medicaid reimbursement rates, establishing or continuing home and community based service waiver program retainer payments, ensuring availability of basic materials, and expanding flexibility to pay family caregivers for providing personal care and health-related services to CYSHCN with appropriate training and ‘guardrails” to ensure quality and program integrity
  • Secure and increase Medicaid reimbursement for care coordination services for CYSHCN and consider covering care coordination by certain paraprofessionals and other service providers.
  • Establish tools, protocols, and incentives to promote routine screenings for SDOH, especially for CYSHCN.
  • Include family members and advocates of CYSHCN in emergency preparedness planning, and develop communication channels that provide timely, accurate, and reliable information to all families of CYSHCN to offer guidance about accessing needed services during a PHE.
  • Encourage and incentivize more routine behavioral health screenings and services, including screening of caregivers of CYSHCN for mood disorders.

Efforts to improve our future readiness for pandemics must include an understanding of the broader socioeconomic ramifications of pandemics and other emergencies on high-risk groups.  Systematic evaluation is needed to assess and document the impact of the temporary policy flexibilities during the COVID-19 PHE on access, utilization, child/caregiver experience, physical and behavioral health, and developmental outcomes of CYSHCN and other at-risk populations. This will equip policymakers and practitioners with evidence-based data to further inform decisions about policies to modify, cease, or expand further. 

The full report, a brief presenting recommendations, and short briefs with recommendations for specific stakeholders are available on the HMA website including:  

Recommendations for Federal Government Actions

Recommendations for States

Recommendations for Public Health and Maternal and Child Health Programs

Recommendations for Medicaid Managed Care Plans

Recommendations for the Health Care Community

Recommendations for the State of California

The Lucile Packard Foundation for Children’s Health will be hosting a webinar featuring this report and COVID-19 telehealth policies affecting CYSHCN, on Tuesday, July 6 at 1:30 p.m. EDT. The webinar will offer an engaging discussion on policy changes that are important to retain and how to apply lessons learned during the pandemic moving forward. Speakers will discuss their experiences with how telehealth flexibilities have affected CYSHCN, families, providers, and health systems. They will reflect on what is important to retain and how to apply lessons learned moving forward  

Report Author:

Sharon Silow-Carroll, MSW, MBA, Principal, Health Management Associates


Cara Coleman, JD, MPH, Director of Public Policy and Advocacy, Family Voices

Alison Curfman, MD, MBA, Clinical Director of the Pediatric Operations, Mercy Clinic

Cheryl Roberts, JD, Deputy of Programs and Operations, Virginia Department of Medical Assistance Services


Ed Schor, MD, Consultant, Lucile Packard Foundation for Children’s Health