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BY Jolene

How to Create an Emergency Plan for Your Child with Special Needs

Way back when my husband and I learned our first child was on his way, we thought our combined skill set was perfect for the job. We were both young, healthy, and nurturing. I was creative, a planner, and eager to introduce our little one to the world of ideas and literature. My husband was patient, spontaneous, and eager to introduce our baby to the great outdoors and science.

And then our son was born. Complete with special needs that required hospital stays, appointments with specialists, prescription medications, and medical equipment. That’s when we discovered our skill set lacked a crucial element: the ability to organize the flood of paperwork that is part and parcel of caring for a child with special needs.

We never really nailed that skill during our parenting years, though it did improve. Now that our son is grown and on his own, I finally have the time to research and create organizational systems that make life easier for caregivers. This is the first of several articles about how to organize caregiver paperwork. Today’s post kicks off the series with suggestions about how to create an emergency information packet.

What to Include in an Emergency Packet

Whatever method or forms you use, be sure to include the following:

  1. Personal information: your child’s name, address, and birthdate
  2. A physical description: your child’s height, weight, sex, eye color, and blood type
  3. Other pertinent information: allergies, dietary restrictions, diagnoses, primary language, and organ donation
  4. Names of caregivers, their relationship to the child, and their contact information
  5. Primary, second, and third emergency contacts, along with each contact person’s name, relationship to the child, address, email, and phone number
  6. Advance Directive forms such as a living will, do not resuscitate (DNR), and do not intubate (DNI)
  7. Medical and dental insurance policy numbers and phone numbers

How to Make the Packet Work for You

Here are some simple tips that will make it easier for you to maintain emergency information and for others involved in the care of your child to access it.

  1. Record the information in pencil if you use a binder or notebook. That makes updating the information easier as it changes.
  2. Once the emergency packet is completed, flip ahead three months in your calendar and make a note to review the packet and make necessary updates. After each update, flip ahead and mark your calendar again.
  3. Make copies of the emergency packet and give them to anyone who provides care for your child: babysitters, day care providers, respite workers, school personnel, relatives, or neighbors.
  4. Black out or remove Social Security numbers from the packets distributed to others.

Tech Savvy Planners

For those who are comfortable around apps and web based planning tools here are some options you should consider.


VestiddVestidd is a tool for those who have a child or loved one with special needs. It helps organize important information and share it with key people in their life. Vestidd also helps you prepare for life transitions. Although originally meant for more long term planning and for creating a letter of intent. Vestidd is perfect for storing crucial emergency information. For more information about Vestidd read this article or visit their website.

Medical Day Planner

The Medical Day Planner on the App Store on iTunesIf downloading forms isn’t your thing, check out Tory Zellick’s Medical Day Planner. It’s available as a hard copy notebook and as an app. While Zellick created for those caring for adults with medical needs, it can be adapted for children.

Whatever you decide, this series will return in a few months with tips about how to use a calendar to organize paperwork and the details that are part of caring for a child with special needs.

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Written on May 6, 2014 by:

Jolene Philo's first child, Allen, was born with a life-threatening birth defect that required 7 surgeries from birth to age five. She taught students with special needs in a variety of settings during her 25 years in education. Her book, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs was released by DHP in November of 2011. She also blogs about special needs at

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