 |
QUEST Volume 12, Number 5, SEPTEMBER/OCTOBER 2005
Plan Ahead
for
Emergencies
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.
|
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
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.
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 |
|
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.
|
|
|
![[QUEST]](/publications/images/q_logoh1.gif)
![[MDA - Muscular Dystrophy Association]](/publications/images/foot_pubs.gif)
