by Donna Albrecht


In 1986, my older daughter, Katie, who had spinal muscular atrophy type 2 (SMA2), was ill and stayed home from eighth grade. Abruptly, she went into respiratory arrest. I gave her CPR, called 911, and gave her some more CPR. The paramedics stabilized her, and we left immediately for the hospital.

Now you may be thinking that this was the emergency, but it was only half of it. My younger daughter, Abby, was in school and my husband was overseas on business. What was going to happen to Abby (who also has SMA2), when sixth grade let out and the bus brought her to our empty house?

Id heard from a bus driver that my school districts policy was that if a parent or caregiver wasnt at home, the driver was to take the child to juvenile hall.

Juvie! Not my idea of a good place for a fragile child. This was the kind of situation that kept me awake nights, so Id done some planning for the event of an emergency.

After consulting my daughters aides, I wrote a letter for each girls school file outlining what to do in an emergency, be it a medical crisis or lack of a caregiver. (See Write Your Own Letter.)

My letter said that if I couldnt be found, my girls should be put in the care of their school aides even if it meant leaving their wheelchairs secured at the school. So, when Katie and I went to the hospital, Abbys letter went into effect. Abby spent the night with her aide, making it to school the next morning in borrowed clothes but she made it.

Have you planned for an emergency or disaster? With all the stresses and details of coping with everyday life with a neuromuscular disease, it can be tempting to leave emergency planning at the bottom of your to-do list. But for the safety and comfort of yourself and your loved ones, its wise to begin or update your emergency plan today. (See Make an Emergency Kit.)

Community Disasters

In 2004, Hurricane Charley was expected to cross Florida on Friday the 13th of August. In Punta Gorda, Pat Rowland and her adult sons, Ty and Mike Heick (who have Friedreichs ataxia), had extra supplies and planned to ride out the storm at their home. They felt confident because forecasts said the storm wouldnt come close to them.

Suddenly, within a 20-minute period, everything changed. Charley grew from a Category 2 to a more serious Category 4 storm, made a sharp turn and headed right for the Rowlands.

With no time to load up Tys scooter and Mikes wheelchair and look for other shelter, the family watched as the storm blew away the screened enclosure for their pool and blew out a glass slider door. They headed for the laundry room where they were sheltered safely for the next two-and-a-half hours as their roof was blown off and a 30-foot oak tree fell in front of the house (protecting the home somewhat from the 125 mph winds).

In St. Petersburg, Paula Orandash, MDAs heath care service coordinator, was worried about MDA families. After the storm, she called or sent letters to everyone. Ten days later, the letter finally reached the Rowlands.

What a godsend, Pat recalls thinking. The storm had damaged Tys scooter and it would only turn right. After reading Orandashs letter, Pat called a local dealer, who contacted Orandash and got verbal approval to give Ty a new scooter. Pat called her sister and gave her directions to Access-Able in Port Charlotte, where she could pick up the scooter.

Just that fast, Tys 10-day scooter ordeal took a turn for the better.

Better Planning

Orandash now is working with Floridas Committee for the Americans with Disabilities Act Working Group to improve emergency planning for people with disabilities before the next disaster.

She notes that one of the problems during the 2004 hurricanes was that special needs shelters brought out many people with different kinds of disabilities. But the only service these shelters offered was oxygen.

People who needed hospital beds, lifts or ventilators, or who were hoping for shelter for their service animals or personal pets, had to be turned away. She also recalls that some people called 911 for ambulances to help them evacuate and were shocked to discover that they were responsible for the ambulance charges.

Orandash urges people with disabilities or their caregivers to contact their local emergency preparedness office to find out about their own communities plans. If no appropriate listing can be found in the phone book, call the nonemergency phone number for the police or fire department and ask where to get more information about local disaster plans and how to register in any directories for residents with special needs.

Donna G. Albrecht is the author of Raising a Child Who Has a Physical Disability (Wiley, 1995). She and her family live in Northern California.
 
Make an Emergency Kit

After the Loma Prieta, Calif., earthquake in 1989, a governmental study looked at the emotional and physical effects of disasters on people with disabilities. The good news, according to the study, is that people with disabilities have a psychological advantage in disaster situations because they negotiate with altered and sometimes difficult physical and environmental limitations on a daily basis.

The bad news, the researchers said, is that physically disabled persons may have less opportunity to access their personal items and emergency medical supplies after the shaking has stopped.

This is exactly where careful planning comes into play.

  • Do you have a plan for emergencies a stocked emergency kit or evacuation bag, a mapped-out exit route, a way to live for a time without ready access to electricity, medications or other special needs?
  • Do important people know their roles and what you expect from them?
  • Do they know which medications or pieces of equipment are needed and how to get them?

Emergency planning can take many forms: talking with friends and relatives, gathering supplies, making lists, packing an evacuation kit. Here are some areas to cover:

Medications

Never get down to less than a one-week supply. If you put medications in an emergency kit, replace them at least twice a year (when daylight-saving time changes). Also change sterile medical supplies in the kit.

Personal care items

What would you need if a wheelchair-accessible bathroom wasnt available a portable urinal, wet wipes? Does someone need adapted silverware, or a supply of straws? If you might be evacuated, have essential adaptive personal items packed and ready to go.

Electricity

Ty Heick

Ty Heick lost his mobility for 10 days after his scooter was badly damaged in Hurricane Charley, which took its toll on his home in Punta Gorda, Fla. Once contacted, MDA was able to quickly get him a replacement scooter.

How will you adapt to an extended loss of power for wheelchairs, humidifiers, respirators, lifts, or any number of other devices for life support or comfort? List each item and come up with a plan. Should you decide to get an emergency generator, be sure everyone in your home knows how to use it (including the person with the disability so he or she can instruct others if necessary).

 

 

 

Support network

Family, neighbors, caregivers, aides, and others who support you or your child are members of your personal support network. Give each a copy of vital information (see Write Your Own Letter) and a list of names and phone numbers of other members of your network so they can coordinate during an emergency.

 Hurricane damage from Hurricane Charley

If all this sounds overwhelming, it doesnt need to be. Make a list of all the ideas in this article that relate to your situation, and add any special needs that werent covered. Post the list where you cant miss it, and commit to dealing with one or more issues every day until your emergency plan is complete.

Youll sleep better, and you and your family will be much safer!
 

Expert Emergency Advice

Everything about your household is unique and no single article can cover the specific needs of every person. If youre working with an occupational therapist, rehab specialist or other health care professional, ask them to come by your home and demonstrate ways to make it safer in an emergency or disaster.

You also may want to consult:
 

Write Your Own Letter
Memo pad

Schools, daycare centers and other facilities arent likely to honor childrens statements about where they should go in an emergency. Adults with communication problems who attend day programs may have the same difficulty.

In an emergency, the adults in charge will make a decision based on their understanding of the facilitys regulations, unless youve given them a letter in advance. Be sure your child or adult with a disability knows such a letter exists and where it can be found.

In your letter include:

  • Your childs full name and date of birth
  • Your childs medical provider(s) and phone number(s)
  • Medical record or insurance policy numbers and contact information
  • Your childs allergies or other special needs
  • Permission to treat your child in an emergency (your doctor or hospital may have a form for this)
  • Names and contact information for people who can take custody of your child
  • Instructions on what to do with medical equipment if it cant stay with the child
  • Your name, phone, work phone, cell number and e-mail
  • Your signature on the letter
  • Keep a copy of the letter handy at home and give copies to the school, teacher, school aide, bus driver, doctor and the people who may be contacted in an emergency.