Services for CYSHCN During Natural Disasters
October 2017

Collaboration Across Maternal and Child Health

Paige Bussanich, MS
Senior Program Manager, CYSHCN

Cassandra G. Pasley, BSN, JD
Director, Division of Children’s Medical Service
Florida Department of Health

Rachel Jew, MPAff
Title V CYSHCN Director, Maternal and Child Health Section
Texas Department of State Health Services

Natural disasters such as the hurricanes that devastated parts of the country this fall put all children and families at risk, and create especially difficult challenges for children and youth with special health care needs (CYSHCN). Title V leaders in two of those storm-stricken areas, Florida and Texas, offer fresh insight into how collaboration helped them continue to serve those children.

First, some context: Approximately 19.4 percent of U.S. children ages birth to 18 (nearly 14.2 million children) have a chronic and/or complex health care need (e.g., asthma, diabetes, spina bifida) requiring health care services and supports beyond what children require normally. 

Ensuring that all children and youth with special health care needs (CYSHCN) receive care in a comprehensive, high-quality system of care has been one of the most challenging and pressing priorities for state health policy leaders and other stakeholders such as pediatricians and family physicians, health plans, state Medicaid and CHIP agencies, state Title V CYSHCN programs, and families.

In the aftermath of recent hurricanes, Title V leaders in Florida and Texas reflected on their states’ responses to ensuring comprehensive services and care for CYSHCN, including examples of collaboration across federal, state, and local partnerships:


The Florida Department of Health’s Division of Children’s Medical Services (CMS) uses an integrated approach when providing services to children with special health care needs. This function becomes increasingly complex during natural disasters, requiring collaboration between local, state, and federal partners.

During Hurricane Irma, the Newborn Screening Program exemplified local and state collaboration. When a newborn from a mandatory evacuation area had an abnormal screen result, the program located the family, and linked the newborn to a second and third genetic referral center in different parts of the state, ensuring necessary diagnostic testing and continuation of services to the newborn and family.

Surveillance for threats to public health is a critical function of the department. One way it carries out this function is through the Florida Poison Information Center Network. During the hurricane, the network worked with other states to ensure continued coverage of poison center services. Carbon monoxide poisoning, a risk during power outages, was monitored especially closely. When a need arose, related safety messages were quickly released to the public and emergency responders through social media and other outlets to heighten awareness of this danger.


CYSHCN and their families have additional needs when preparing for and recovering from natural disasters. The Texas Title V program promotes disaster preparedness for CYSHCN and their families with education and resources, including emergency document bags and emergency supply kit checklists. These items were developed through the initiative and are important for CYSHCN with prescription medications, technology needs, and functional limitations.

Title V CYSHCN community-based contractors engage families in disaster preparedness activities year-round, including helping families register with the free State of Texas Emergency Registry, which provides local emergency planners and emergency responders with additional information on the needs of people with disabilities. Other activities include contractor participation on emergency preparedness committees in local areas, and assessing and developing goals related to emergency preparedness needs of families receiving case management.

In the recent aftermath of Hurricane Harvey, the Texas Title V program coordinated with Department of State Health Services regional social workers, Title V contractors (such as Texas Parent to Parent), and other organizations (such as the Association of University Centers on Disabilities) to identify needs of CYSHCN, mobilize volunteers, ensure care coordination for displaced families, and share resources to assist in recovery efforts.


These are just two examples of how states respond to the complex needs of CYSHCN in the event of a natural disaster. For more information on technical assistance for disasters, see the following resources:

The Substance Abuse and Mental Health Services Administration’s Disaster Technical Assistance Center (DTAC) provides technical assistance, training, and consultation to states, territories, tribes, and local entities as they prepare for both natural and human-caused disasters and implement behavioral health responses in the aftermath. DTAC’s library of resources supports groups as they develop their disaster behavioral health plans and respond to emergencies and facilitates information exchange between peers and experts in the fields of disaster response and behavioral health.

Association of University Centers on Disabilities (AUCD)’s disaster response efforts continue in partnership with the  Office of Disability Integration and Coordination (part of the Federal Emergency Management Agency), Portlight Strategies, the Partnership for Inclusive Disaster StrategiesPass It On Center, and AT3 Center, along with many other national and local organizations and governmental agencies. See other AUCD Resources for information about, for example, how and where to send people who lost their equipment and supplies in the flooding.