Nearly 1 out of every 5 children in the United States has a special healthcare need. Children and youth with special healthcare needs (CYSHCN), also known as children with special healthcare needs (CSHCN) require more care for their physical external developmental, behavioral, or emotional differences than their typically developing peers. A special healthcare need can include physical, intellectual, and developmental disabilities, as well as long-standing medical conditions, such as asthma, diabetes, or a muscular dystrophy.
All children have unique needs in emergencies, but care for children with special healthcare needs is often more complex because of their various health conditions and extra care requirements. They may have a hard time moving from one place to another, urgent or constant medical needs, difficulty communicating or have trouble with transitioning to different situations. A disaster can present all these difficulties at once. Knowing what to do can help maintain calm and keep your family safe. Read more about the real stories of children with special healthcare needs preparing for and responding to emergencies.
Planning is key. It is important for families to have an emergency care plan in place in case a public health emergency like a natural disaster, act of terrorism, or disease outbreak occurs. If there is a child with special healthcare needs in your family, you and your family can prepare by developing a written emergency care plan and practicing your plan. For example, a plan can include medicines or assistance devices that your child needs. If possible, let your child help make the plan. Healthcare providers can work with families of children with special healthcare needs to make sure the child’s needs are covered in the family emergency plan and to identify support networks in your community.
Appropriate response. Stay as connected as possible with children and with others, as these connections can help in providing care and support in an emergency while distracting children to lessen their worries and anxiety. Talk to children about what is happening in a way that they can understand. Keep it simple and consider the child’s age and type of disability. For example, it may be hard to know how much information a child with autism is learning through television and conversations. Adults may have to look for clues that provide information on the feelings and fears of these children.
Emergency Kit Checklist
Use the checklist to help your family prepare for an emergency. Children with special healthcare needs may need special support services, including medicine and medical equipment, which typically are not available in traditional emergency shelters. In addition, children requiring medical services are not legally able to provide consent for treatment. If your child has specific equipment needs, and/or the needed equipment requires electricity to operate, notify local Emergency Medical Services and other responders of these needs in advance of an emergency. The American College of Emergency Physicians (ACEP) and the American Academy of Pediatrics (AAP) developed an Emergency Information plan to help emergency care professionals and healthcare providers give appropriate care for children with special healthcare needs during an emergency. These children should also have access to appropriate resources for safe transportation during an emergency. Families can learn more about safe transportation for their child with special healthcare needs in AAP’s Transporting Children With Special Health Care Needs.
After the disaster.
A disaster can have long-term effects on the mental and emotional health of all children. Coping with a disaster can be particularly difficult for children with disabilities. Children who have serious emotional and behavioral problems are at high risk for severe stress after a disaster or traumatic event. In many cases, it may help to maintain as much of a normal routine and environment as possible. It is important that parents, caregivers, and healthcare providers know how to help children cope after an emergency to support their health and well-being.
Checklist for Families with Children with Special Healthcare Needs:
Do you have all of your childs medical information and general supplies?
- A current copy of your child's medical information and records, including the following:
- An electronic copy (on a CD, flash drive, or phone app)
- A paper copy in a waterproof bag
- Special dietary foods and supplies (7-10-day supply minimum).
- Items or toys that calm or entertain your child - An extra medical alert bracelet or necklace for your child
- Identification to be carried by each child in your family in case your family members become separated Do you have back-up power and supplies?
- An AC adaptor for your car to charge small electrical equipment, such as a nebulizer - Battered powered versions of medical equipment your child uses
- Extra batteries for medical equipment, hearing aids and communication devices
- Back up chargers for cell phone (such as a hand-cranked USB cell phone charger, a solar charger, or a battery pack; some weather radios have a built in hand crank charger)
- Back up chargers for a laptop or tablet (such as a 12v USB adapter that plugs into a car, in inverter, or into a battery jump pack with a USB port)
- If your family has a generator for backup power supply support, never use a generator indoors due to deadly fumes.
- If available to your family, consider backups for non-electrical equipment, such as a manual wheelchair or other walking aids Do you know how to get emergency medical supplies and medicines for your child?
- Talk with your child's doctor about how to get an emergency supply of medicines. If your child takes medicine given by a clinic or hospital, talk with their staff about how to plan for a stoppage due to a disaster.
- Ask your pharmacist how long each medicine can last and storage needs of the medicine
- Keep a copy of your child's prescription information in your wallet and car, including the name, location, and phone number of out of town pharmacy in case your regular pharmacy is closed. Do you have all the medical supplies and medicines for your child?
- Two-week supply of all prescription medicines your child will need (consult your child's doctor on the recommended amount(s) to keep in your kit.
- Two week supply of medical care items, such as needles, nasal cannulas, bandages, etc.
- Cooler and chemical ice packs for storing and keeping medicines cold.
- A copy of all prescription information for your child's medicines and the phone number of an out-of-town pharmacy in case your regular pharmacy is closed.
Tips and reminders to make sure your family emergency kit is always ready to go:
• Keep canned or packaged food in a cool, dry place (check the expiration dates at least twice per year)
• Store boxed food in tightly closed plastic or metal containers
• Replace water supply every six months
• Review your needs every year and update your kit as your family’s needs change (update medical and personal records at least once per year)
• Prepare separate kits for your home, work, and your vehicle since you never know where you’ll be when an emergency happens
• If you can’t contact your doctor or pharmacy in a disaster, ask for help from emergency responders or staff at emergency shelters or service centers
Never take no as the answer. Keep preparing and keep charging.
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