Improving Preparedness for Children and Youth with Special Needs
Pediatricians can be strategic in the way they communicate with families about children and youth with special health care needs (CYSHCN). Parents know their child best and can greatly benefit from their pediatrician’s help with planning before an emergency or disaster. Begin the conversations with families about potential disasters in their area, and identify what each child would need to safely cope with the disaster. Tell a story of how a family was successful in their planning to illustrate the importance of preparing in advance. Developed in partnership with Family Voices, below you will find two videos of real life stories that will hopefully educate and spread awareness to improve emergency preparedness for CYSHCN.Written Plans
Research shows that pediatricians who raise the topic of disaster planning with families can achieve results. Families that talked with their child’s pediatrician were much more likely to take action to prepare for a disaster. Families may not be familiar with preparedness planning or they may not consider it a priority. If they have never been through a disaster situation, they will not know what to consider.
Even if families seems reluctant to move forward, pediatricians can help them understand what’s important, and with a little guidance, they may find a way to move forward.
Encourage the development of written preparedness plans. Or, ask families to consider the important steps in the planning process as outlined by the Federal Emergency Management Agency (FEMA): be informed, make a plan, build a kit, and get involved. Start by talking with families about their current planning process. Some families may lack the resources to handle certain planning tasks, or may not be able to afford them. Help point them in the direction of community or state-wide groups that might help them. Disaster Supply Kit
Reinforce the need for every family to have a Disaster Supply Kit. Certain components of the Disaster Supply Kit might be particularly important for CYSHCN. Discuss items that your patients might need, like:
- Medication: Obtaining necessary supplies such as medications might become a critical issue in a disaster, especially if a family does not have extra medication on hand. It is important to consider the types of medications (asthma-related and others) and supplies (eg, inhaler) that a child might need to have unexpectedly. Brainstorm with each family, depending on their health insurance plan options and current needs. Help identify which medications can be stored for longer periods, and help come up with a plan for the family to get the medications that can’t be acquired ahead of time and stored.
- Power Supply: Does the child need a power source for medical equipment or refrigeration for special supplies or food?
- Food and Supplies: Does the child have allergies? Is there a need for special food, baby food, formula, bottles, or a breast pump with extra batteries? Is there a special cup or plate the child “must” have to feel comfortable eating? Plan in advance to address these situations.
- Transportation: Will the child need alternative plans to get from one place to another (e.g. manual wheel chair, stair chair, or slide)? Consider whether a special vehicle will be needed.
Recognize that while some families may not be able to afford a complete kit right away, this is still a good, practical place to start the planning process.
Coping and Adjustment
Emergencies or disasters are difficult for families, but for those that include a CYSHCN, the ability to manage or cope can be even more challenging. Families of children with complex needs are often focused on meeting the day-to-day needs of their child. It is important for them to consider their child’s needs in a disaster or emergency. You can offer suggestions as to how they might get started or which actions are a priority for them to take on first. The AAP Promoting Adjustment and Helping Children Cope Web page offers additional information and resources.
Choosing to take shelter is necessary in certain emergencies or disasters. Mass sheltering facilities are not always in place all of the time, as most of them are set-up after a disaster has occurred. Some shelters have accommodations for children (and pets) while others do not. Certain shelters are set up for individuals who have special needs. See www.ready.gov/shelter and talk to emergency management personnel in your area to learn more about available shelters. Once you know about realistic options, discuss in advance possible solutions for sheltering with families.
When treating CYSHCN, it is important to connect with Emergency Medical Services and other responders in advance to notify them if the child has a particular need for equipment that requires electricity. Because different regions may utilize different approaches, it is critical to determine what resources are available and how families can access them, especially if hospitalization or transportation is required.
It is also essential to prevent CYSHCN from being exposed to situations where they might become even more vulnerable. One example relates to seasonal influenza. It is essential that children with chronic medical conditions, such as asthma, diabetes mellitus, hemodynamically significant cardiac disease, immunosuppression, or neurologic and neurodevelopmental disorders, receive the seasonal influenza vaccine as soon as it is available and have a plan in place so they can get treated early and aggressively if they develop influenza-like illness. This is another key topic for pediatricians to discuss with families.