Medical Home Portal - Planning for Emergencies

Emergencies and disasters can happen anytime and any place. Disasters and emergency situations can result in power outages, limited access to medical attention, medications, and a need for supplies. We must do our best to plan for our family's safety and care during an emergency. All families should have an emergency plan in place; families of children with special needs will need an emergency plan that addresses the unique needs of their child. For example, the plan should address what to do if your child or youth:

depends on electricity --- to breathe, be fed, stay comfortable
cannot be moved easily because of his medical condition or attachment to equipment
uses a wheelchair, walker, or other device to move
cannot survive extreme temperatures, whether hot or cold
becomes afraid or agitated when sudden changes happen
cannot independently get out of an emergency for physical or emotional reasons

Careful planning for emergency situations is necessary and can prevent a bad situation from becoming worse. Take some time to prepare your family and home.

Emergency Information Form (EIF)

The Emergency Information Form, developed by the American Academy of Pediatrics (AAP) and the American College of Emergency Physicians, will help you and your child’s physician develop an emergency plan for your child with complex conditions. The form can be downloaded from the AAP website in an interactive format so it can be saved on your family’s home computer and easily updated, or you can print it. Start by filling out this simple 2-page emergency form. Distribute the completed form to the places your child goes regularly. The form is available here: Emergency Information Form for Individuals with Special Health Care Needs (EIF)

Thinking Ahead

We all hope we’ll never need to use our emergency plans, but the time to prepare for a disaster is before it happens. Use this checklist to assist you in making sure that you have done everything possible to prepare for a disaster and prevent serious outcomes, should one affect your community. The checklist includes considerations for your child with special needs, your family, and your home.

Your Child with Special Needs

Do you have a current care plan and list of medications from your child's physician?
Do you have an emergency information form (EIF) filled out with your child's information?
Do you have a two week supply of medication and supplies for your child?
Do you have back-up systems or plans for medical equipment that require electricity?
Have you discussed with your child's doctor what the best place is for your child in the event of a disaster?
Are your local emergency management team and neighbors aware that you have a child with special needs and are they familiar with those needs?
Do you have a disaster plan for your child while he is at school, day activities, church, etc?

Your Family

Does your family have a disaster plan? Have you practiced the plan?
Do you have a disaster supply kit for your family?
Have you designated a "meeting place" and central point of contact should your family be separated during a disaster? Have you shared the location of your meeting place with all family members and neighbors?
Have you discussed disasters and preparation with all your children?
Have you considered making a picture board or communication page if your child with special needs or a young child has limited understanding? (These pictures could include first response workers in uniforms/ fire gear.)
Have you made plans for your pets?

Your Home

Have you checked your home (inside and out) for materials and items that might pose a hazard during a disaster?
Have you located and learned how to turn on and off utilities such as gas, water, and electricity in your home?
Do you have working smoke and carbon monoxide detectors in your home?
Does your home have necessary resources such as water hoses, fire extinguishers, generators, etc.?
Have you developed a plan with your neighbors for how you will assist one another in case of disaster?

Disaster Supply Kit

Preparation is the key to surviving a disaster and managing the chaos that occurs afterwards. There are many considerations in preparing for a disaster that are applicable to all families. In addition, families with special needs must be prepared to manage their needs under undesirable conditions. One way to prepare is by making a disaster supply kit. When a disaster hits, you won't have time to shop or search for supplies. If you've gathered supplies in advance, your family can better handle an evacuation or home confinement. Also, talk with your child's physician about things you will need specifically for your child when preparing your kit.

When putting together your disaster supply kit, consider how you would meet your child's needs if there was:

no electricity, phone, heat, air conditioning, computer
no water
no local access to prescription refills or health care products*
no refrigeration
separation from family
evacuation to a shelter or elsewhere
confinement to home
limited health care access
lack of transportation
limited emergency rescue services

*A Note about prescription medications and monthly home health supplies – many insurance plans, including Medicaid, allow prescriptions to be refilled every 25-28 days. By refilling each prescription as early as possible, over the course of several months you can build a surplus of medication and supplies to use in an emergency. As always, it is critical that you maintain a system of rotation for medications that allows you to use any medication before it expires or loses its potency. Ask your insurance company about how often you can refill prescriptions, and talk to your pharmacist about expiration dates and proper rotation of medications.

For more information about creating a supply kit, go to: Special Needs Supply Kit and Additional Steps to Prepare for Emergencies.

Medical Emergencies and Children

Every child faces some risk for severe or life threatening injury or illness that can cause permanent harm. For children or youth with chronic illnesses, disabilities, or special needs, the risk can be far greater. Planning for emergencies before they happen can help assure that your child gets the quickest and best possible treatment and care. This is especially true if a medical emergency occurs when your child is not with you. In those situations, responsible adults should have information about your child's special health care needs and your emergency plan.

Plan

Even the best efforts cannot always prevent emergencies from happening. What you can do is plan. Here are some questions to help guide your preparations.

What is available in the way of Emergency Medical Services (EMS) for my child at home, at school, or other places she might be? Do the EMS providers have training with children with special health care needs?
How are decisions about emergency transport handled? What choices do I have?
Which hospitals might receive my child on an emergency basis?
What rules or policies apply when my child is not with me in regards to things such as health care plans, preferences, rescue medications, Do Not Resuscitate orders, and disaster assistance?

Prepare

Begin by discussing emergency preparations with your child's doctor:

Ask about special health risks for your child or symptoms that should be watched for.
Discuss whether it is appropriate for your child to wear identifying medical jewelry health information.
Ask for your doctor's help in completing an Emergency Information Form (EIF) for your child.
Discuss who should have a copy or your child's EIF. Consider relatives your child may stay with, EMS providers (fire department, paramedics, police station), and responsible adults at school, daycare, camp, and other places your child may go.
Review and update your child's EIF annually or more often as needed.
Discuss with the physician about using signed consent for treatment forms (EIF). (You can get a sample form at the American College of Emergency Physicians Emergency Information Form for Individuals with Special Health Care Needs (EIF)).

Emergency planning also means knowing what provisions your child's health insurance plan includes for urgent and emergency care. If the event is not a clear emergency, the plan may not cover the trip to the Emergency Room. Make sure outside caregivers understand when to call 911.

Emergency preparations should include having a well-stocked first aid kit in your home and car. Also, post emergency phone numbers on or near all your telephones. Some families also post the house address and nearest cross street in case you have a caregiver caring for your child in your home.

Visit the EMS providers in your area and make them aware of your child's special needs. Find out how they respond in emergencies and ask what you can do to help them care for your child in an emergency. State or local agencies may provide registries for children with special needs to determine equipment needs for local EMS provider and help them prepare for serving your child. Agencies may have separate registries for disaster planning.

Take a course in CPR (cardiopulmonary resuscitation) and first aid techniques. Encourage family members to sign up with you.

In an Emergency

When an emergency or crisis occurs, it is important to stay calm, especially for your child's sake.

Know who and how to call for help. Dial 9-1-1 or your local emergency services number.
Have your child's EIF form available for the EMS response team.
Comfort and reassure your child. Listen to your child and help him understand what is happening.

Resources

Information & Support

For Parents and Patients

Coping with Crisis--Helping Children with Special Needs
Coping strategies for crisis affecting children with special needs, from the National Association of School Psychologists.

Emergency Information Resources for People with Disabilities
Emergency information resources for people with disabilities from the Utah State University Center for Persons with Disabilities

Physician Orders for Life Sustaining Treatments (POLST forms)
The National POLST Paradigm is an approach to advance care planning developed for patients with one or more serious advanced illnesses, with emphasis on patients’ wishes about the care they receive.

Emergency Health Information System for CSHCN Utah
This link to the Utah Emergency Medical Services for Children (EMSC) website contains an online form for CSHCN that can be filled out by parents, inserted into a provided tube, and placed in the main fridge of the home. This allows emergency medical service (EMS) providers to quickly find medical information and provide immediate care, before they reach the hospital, for children with complex medical conditions in the event of an emergency or disaster.

Emergency Health Information Form - Utah
This form, front and back for use by Utah emergency medical services, helps parents record information for their child including diagnoses, procedures to avoid, allergies, and medications. Utah Department of Health, Utah Family Voices, and Utah Collaborative Medical Home Project.

Emergency Medical Information Form - Contact Information Utah
Contact information for use by Utah emergency medical services, that helps parents record information for their child. Utah Department of Health, Utah Family Voices, and Utah Collaborative Medical Home Project.

CHIRP - Children's Health Information Red Pack
A registry of Children with Special Health Care Needs (CSHCN) for routine emergency medical services; developed by the Utah Department of Health.

Special Needs Registry
This registration website allows residents with special needs an opportunity to provide information to emergency response agencies so those agencies can better plan to serve them in a disaster or other emergencies. Provided by United Way of Northern Utah, Utah 211, Utah Citizen Corps, and the Utah Department of Public Safety.

Help Families with CSHCN Prepare for Emergencies ( PDF Document 224 KB)
Tips for families: be informed, make a plan, build a kit, get involved and resources. Prepared by Family Voices, New Mexico.

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Authors

Author:

Tina Persels - 10/2013

Reviewing Authors:

Alfred Romeo, RN, PhD - 11/2014
Gina Pola-Money - 10/2013

Content Last Updated:

11/2014