Practical Considerations
Emergency Preparedness

Emergency Tips
Emergencies; something we should all think about ahead of time but often don’t. However when you have a child with special health care needs planning for emergencies becomes essential. Here are a few tips I’ve picked up over the years.

1.        Notify your fire or police department that you have a child with special health care needs so that in case of a major disaster or emergency they know that you need to have priority for assistance or rescue. This is especially important if your child is dependent on machinery (ventilator, oxygen, nebulizer etc) of some sort or other.

2.        Especially if your child is on a ventilator, notify your electricity department and find out (AHEAD OF TIME) what you should do if the power goes out-other than buy a generator. One family I know of is on a special priority list.

3.        A generator is a good idea if you are in an area that is prone to storms and power outages.

4.        Plan with your family and with the help of your local fire department escape routes in the case of a fire or other emergency. How will you get your disabled child out? Where will you go? If it requires a rope ladder or blankets to be used, have them ready at all times.

5.        Put together an emergency pack. This is really important if your child is tube fed or on medication. In most situations you/we’ll be rescued and be able to get food wherever we’re taken. It is highly unlikely they are going to have formula and tube feeding equipment there as well. Have any medications for you, your child with hydranencephaly or anyone else in your family in this pack as well. Note on the outside when it’s contents need to be discarded by-formula usually has a date on the bottom of the can.

6.        Ideally, you should have an emergency pack at any exit you might take in an emergency. Also, one should be at school or in your vehicle.

7.        ALWAYS (if at all possible) have a back up gtube, trach, etc.

8.        It is a good idea to have a medic alert or similar type identification for your child both that he/she wears and attached to his/her chair, stroller or car seat. There are several programs available that provide identification stickers. I am providing an address here for CHAD* (provides stickers that are put on a child’s car seat or wheelchair) and Medic Alert.

9.        You should always have a sheet that has your child’s full name, medical number, your name, phone numbers, emergency #s, and all medical information about your child with all emergency packs you have. I tried to keep an up to date sheet near the door too, just in case of an emergency. If you’re like me, you’re not thinking very straight when you need to call 911 or take your child to the ER. Also, like Kayda, many of our kids have multiple health concerns, allergies, medications, etc. I found it much easier to just hand this piece of paper to people when they started asking ?s.

10.     If your child is on oxygen or has major allergies such as to latex; put a sign on the outside of your door

11.     Make sure your address is clearly marked and visible from the street in either direction to make it as easy as possible for emergency vehicles to find you.

12.     A light that flashes is a good idea as long as it’s visible from the street.

*Here is a link with more information on the CHAD stickers. It also has a
good picture of what this sticker looks like.
http://www.mindspring.com/~tpatxdiv/chad.htm

 CHAD stickers can be ordered from:
http://www.mindspring.com/~tpatxdiv/sftymtl.htm

Travelers Protective Association of America
Texas Division
633 West Bedford Rd.
P.O. Box 338
Hurst, TX 76053-0338
(817) 280-9234
(888) 284-8691

The info on the website says that they are $2.00/100 stickers. There are also a number of other safety materials listed on this website that can be ordered for reasonable prices.

MedicAlert: website: http://www.medicalert.com/join.html

Order by phone:  1-800-432-5378.
I don’t have an address for them at this time. I ordered my daughter’s via the phone

Emergency Information from the American Academy of Pediatrics and the American College of Emergency Physicians:
http://www.aap.org/advocacy/emergprep.htm

Here are a couple of Emergency contact forms for children with special needs, developed by the American Academy of Pediatrics

http://www.aap.org/advocacy/blankform.pdf    This one is in pdf format, and can be printed and filled out.

http://www.aap.org/advocacy/eif.doc  This is a Word file and can be filled out from your computer.

http://www.aap.org/advocacy/epcparent.htm