Friday, September 5, 2014

Preparing for an #Emergency for Children with Special Healthcare Needs or #Disabilities #family2family

By Kerry Bonney, Health Information Specialist 

This is a good time of year for you to review your family’s emergency preparedness plan.

When an emergency situation occurs, we have to possibly be self-sufficient and perhaps spend several days without utilities, medical aid or communications. As a parent caring for a child with special needs, you have extra things to think about.

Jan Labas, an American Red Cross volunteer, states that “the most important rule is to have a
plan.” To begin formulating a plan, ask yourself the following:

1. Will I leave my home?

You may choose to stay at home, if possible, without water, phone, and/or electricity. Think
about what your family would need to be self-sufficient and safe. Water, food, and food
preparation, warmth, and medical supplies would need consideration.

2. If I must leave or choose to leave, where will I go and how will I get there?

Wheelchairs, beds, and other medical equipment may require electricity or special accommodations. Consider that modes of transportation or usual routes of travel may be inaccessible.

3. What will I need while I am there?

Basic necessities are usually provided within a short time in a shelter setting, but what might
your child need that may not be readily available, such as refills for prescriptions, health
products, or special foods.

4. What will I do while I am there?

Confinement to a shelter would make for a miserable time in my case, if I did not take some
comforting items and something for my child to do. A deck of cards, books, and small toys
for distraction and play would certainly help to pass the time and help with the adjustment.

We, at Family Voices Indiana, recently had a discussion regarding preparedness, realizing that
“everyday” emergencies occur more frequently than disasters, and so it would be prudent to be
prepared for these times as well.

These are suggestions that were given to increase safety of our children:

Jennifer Akers, Project Coordinator for FV Indiana, states, “When my daughter was younger and
had a trach, I knew many first responders might not be trained to look for a trach in a car
accident. I also worried that I wouldn't be able to tell them things if I was injured.” Jennifer
completed a medical record for her daughter and placed it in a plastic bag with a smaller-sized
tracheostomy tube, manual suction, etc. and pinned it to her daughter’s car seat so it would be the
first thing emergency responders would see when opening the door. She marked “Emergency!
Medical Info and Trach” in red marker on the bag.

One parent uses a flash drive with her kid's medical information on her keychain. Another
suggests giving a copy of paperwork for all members of the family, including medical records,
birth certificates, and the like, to a trusted family member or friend in another location in case
you experience a total loss.

For times when the child is out in public, it was recommended that consideration be given to
medic alert bracelets and Runner ID systems that can be attached to the child’s shoe. Temporary
tattoos with phone numbers and bead bracelets with the cell phone number on the beads are
available for use when in crowds and on school trips.

Notifying local emergency officials of your child’s special needs was advised. Some towns,
such as Bloomington, offer a form for families to complete in order to be identified immediately
by the 911 system. Local emergency management officials should also be informed of the need
for special accommodations in the event of a disaster.

In addition, utility companies should be made aware of CYSHCN in the home that require
electricity for their medical equipment. Priority is then given in the case of a power outage.

It would be impossible to plan for every scenario, but having prepared in advance for a situation
allows for families to maintain some sort of order in the chaos would otherwise ensue. In fact,
for families with children with special needs, it could mean the difference between life and
death. Begin taking steps to complete or update your family’s plan today!

For more information on emergency preparedness and for comprehensive plans, visit the FEMA
website:, the American Red Cross website:, and
the National Organization on Disability:

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