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MEETING YOUR CHILDS NEEDS

Planning for Emergencies

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Emergencies and disasters can happen any time and any place. These situations can result in power outages, limited access to medical attention and 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, hot or cold
  • becomes afraid or upset when sudden changes happen
  • needs help to get out of an emergency for physical or emotional reasons
  • takes daily medications that cannot be missed
Careful planning for emergencies is needed and can prevent a bad situation from getting 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 doctor make an emergency plan for your child with complex needs. The form can be downloaded from the AAP website in a format that can be saved on your home computer and easily updated, or you can print it. Start by filling out the simple two-page emergency form. Give the completed form to the places your child goes regularly (school, daycare, activities, family). The form is available here: Emergency Information Form (EIF) for Individuals with Special Health Care Needs (PDF Document 61 KB).

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 help you make sure that you have done everything possible to prepare for a disaster, should one affect your community. The checklist includes concerns for your child with special needs, your family, and your home.

Your Child with Special Needs

  • Do you have an up-to-date care plan and list of medications from your child's doctor?
  • Do you have an emergency information form (EIF) filled out with your child's information?
  • Do you have a month of supplies and medications for your child?
  • Do you have back-up systems or plans for electric medical equipment?
  • Have you discussed with your child's doctor what the best place is for your child to be in the event of a disaster?
  • Are your local emergency first responders 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 she 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 talked about 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, masks, gloves, face shields.)
  • Have you made plans for your pets?

Your Home

  • Have you checked your home (inside and out) for materials and items that might be dangerous during a disaster?
  • Have you found 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 help one another in case of disaster? Would they be willing to learn about how to specifically help your child with special needs?

Disaster Supply Kit

Preparation is the key to surviving a disaster and managing the chaos that occurs afterwards. There are many things when preparing for a disaster that apply to all families. Families with special needs must also 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 doctor about things you will need specifically for your child when preparing your kit.
When putting together your disaster supply kit, think about 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 safe place
  • confinement to home, shelter in place, isolation, quarantine
  • 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.

Medical Emergencies and Children

Every person 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.
In situations like a viral outbreak or pandemic, if family members were infected they would need to be quarantined somewhere while sick. It is a good idea to have a plan in place of how that will work for your family, and where they could isolate to keep everyone safe. Someone who is medically fragile or has underlying conditions may need to be in the hospital if they are ill. It is a good idea to create a communication plan for them and set up supports by video and phone with family.

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 they 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

Start 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 or tags with health information.
  • Ask for your doctor's help in filling out an Emergency Information Form (EIF) for your child if needed.
  • Discuss who should have a copy or your child's EIF. Think over 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 doctor about using signed consent for treatment forms (EIF). (You can get a sample form at the American College of Emergency Physicians Emergency Information Form (EIF) for Individuals with Special Health Care Needs (PDF Document 61 KB)).
Emergency planning also means knowing what details 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.
Planning for emergencies should include having a well-stocked first aid kit in your home and car. Also, post emergency phone numbers somewhere in your home that everyone knows about, and enter those numbers into each family member’s cell phone. 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 class in CPR (cardiopulmonary resuscitation) and first aid techniques. Encourage family members to sign up for the class 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 or Care Notebook 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

Rhode Island Special Needs Emergency Registry (RIDOH)
The information submitted to the Rhode Island Special Needs Emergency Registry is shared with local and state first responders and emergency management officials. Your information is held confidentially and only accessed to assist in your safety and well-being. The Department of Health and Rhode Island Emergency Management Agency have worked with E-911 to notify first responders when they are responding to a household that may have someone enrolled in the Registry. While enrolling in the special needs registry does not guarantee assistance, this notification allows first responders additional time to consider how to best respond to that incident. Please note that strict confidentiality is maintained at all times and only those who have a reason to access the information are authorized to do so; Rhode Island Department of Health.

Rhode Island Special Needs Emergency Registry (PDF Document 1.0 MB)
A registry developed as a service to Rhode Islanders with chronic conditions, disabilities, and other special healthcare needs. The enrollment process can be completed online or by mail.

Rhode Island Special Needs Emergency Registry - Spanish (PDF Document 1.0 MB)
A registry developed as a service to Rhode Islanders with chronic conditions, disabilities, and other special healthcare needs. The enrollment process can be completed online or by mail. Information on the service in Spanish.

Rhode Island Crisis Preparedness Passport (Word Document 59 KB)
This form is specifically designed to equip First Responders and Police with specific information that would be helpful in deescalating a crisis situation with an individual with special needs/disabilities. It can also be provided to staff in settings such as a hospital or other out-patient facilities to assist the individual in a mental health crisis. This form was designed by two Rhode Island LEND (Leadership Education in Neurodevelopmental Disabilities) trainees who are also parents of individuals with special needs/disabilities in collaboration with the Office of Special Needs at the RI Department of Health.

Rhode Island Crisis Preparedness Tips for Families of Individuals with Special Needs/Disabilities (Word Document 24 KB)
Families of individuals with special needs/disabilities have a great deal of knowledge learned from lessons with their own child/youth/adult that can be of great value to other families who could be in similar circumstances and benefit from shared experiences. Authors and Parents: Vaibavi Nandakumar and Pamela Donor shared these tips learned through their own journey in hope that they can provide helpful tips for other families.

Rhode Island National Grid Contact Us
National Grid maintains a list of customers relying on life-sustaining equipment in their homes—such as chest respirators and kidney machines. Individuals who are dependent on such medical technology or have a member of their household or a tenant that is dependent on such medical equipment, can use the Contact form to be included on the list.

Emergency Communication Board (PDF Document 1.2 MB)
For use during emergencies to help people communicate.

Make a Plan: Individuals with Disabilities (Ready.gov)
Preparing for disasters and emergencies for people with disabilities and special needs; from Ready.gov and FEMA.

SAMHSA Disaster Distress Helpline
SAMHSA’s Disaster Distress Helpline provides 24/7, 365-day-a-year crisis counseling and support to people experiencing emotional distress related to natural or human-caused disasters.

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.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: October 2013; last update/revision: May 2020
Current Authors and Reviewers:
Author: Tina Persels
Authoring history
2014: revision: Alfred N. Romeo, RN, PhDR
2013: first version: Tina PerselsA; Gina Pola-MoneyR
AAuthor; CAContributing Author; SASenior Author; RReviewer