Last updated: January 18, 2022

The following COVID-19 resources offer information for families, caregivers, state agencies, and advocates of children or specifically children with special health care needs. Links are regularly updated.  

For Families

Centers for Disease Control and Prevention
Coronavirus Disease 2019 (COVID-19) Frequently Asked Questions: Children with Special Health Care Needs
Basic information on COVID-19 and how to support children and families.

Parents Helping Parents, Inc.
COVID-19 Resources for Families
This website features several videos on how to support children with special health care special needs and their families during the pandemic.

National Health Law Program and Family Voices of California
Access to Care Through California Children’s Services During COVID-19
This fact sheet answers key questions about access to care through California Children’s Services during COVID-19. It also provides information on free legal assistance. The fact sheet is available in English, Chinese and Spanish.

For Caregivers

Centers for Disease Control and Prevention
COVID-19 Materials for People with Intellectual and Developmental Disabilities and Care Providers
The materials on this page were created to help make communicating about COVID-19 a little easier. Choose from videos, posters, social stories, and interactive activities to best meet your communication needs. The materials are also available in Spanish.

National Association of Councils on Developmental Disabilities
Get Out the Vaccine
Information to help people with disabilities and their families make decisions about being vaccinated for COVID-19

American Academy of Pediatrics
The Impact of the Pandemic on Households with CYSHCN
The American Academy of Pediatrics collaborated with other agencies to conduct a Family Snapshot Survey that asked about how families’ financial, educational, and relational lives have changed during the pandemic. This report highlights responses from families of children and youth with special health care needs.

Pediatric Nursing
Mental Health Needs During COVID-19: Responses in Pediatric Health Care
This article highlights the profound effect the pandemic is having on children’s mental and emotional health and outlines resources for nurses to share with families.

Center for Health Care Strategies
Ensuring COVID-19 Vaccine Equity for Children: Considerations for Pediatric Teams and Community Partners
This blog post offers considerations for pediatric medical care teams and community partners to ensure more equitable COVID-19 vaccine distribution among children.

Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity
Tips for Designing an Inclusive Interprofessional ECHO
With the goal of building capacity for providers and interprofessional teams to care for children with medical complexity and their families during the pandemic, the American Academy of Pediatrics and the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity developed the Extension for Community Healthcare Outcomes (ECHO) project, an evidence-based collaborative model of medical education and peer mentoring. This infographic, the first in a series, shares lessons learned from the project.

For State Agencies

Health Management Associates
COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs
This report identifies key policy flexibilities enacted during the public health emergency and summarizes stakeholders’ perspectives about the impact of the flexibilities on CYSHCN and their families and providers. Also see a related webinar about telehealth policies and webinar about behavioral health policies.

For Advocates

Manatt
Executive Summary: Tracking Telehealth Changes State-by-State in Response to COVID-19
A federal and comprehensive 50-state tracker for policy, regulatory and legal changes related to telehealth during the COVID-19 pandemic. This executive summary outlines recent federal and state developments. The full tracker with details for each state is available through Manatt’s subscription service.

Center for Connected Health Policy
Telehealth in the time of COVID-19
Up-to-date information on how the federal government and each state are adjusting their policies to address the need to make telehealth more available.