Disaster and Emergency Planning : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.

Disaster and Emergency Planning

by RNE submissions on 03/03/18

By Joanna Mechlinski

The challenges of an ordinary day can be difficult enough for those with a chronic illness or disability to navigate, let alone one where there’s an emergency or disaster. Unfortunately, due to the times we live in, individuals with special physical, medical, sensory or cognitive needs must plan ahead to the best of their ability, anticipating what may happen in the event of a sudden evacuation or other emergency.

The American Red Cross recommends that each person with special needs create a personal support network or self-help team. This should include individuals from your home, school, work or other places where you spend a significant amount of time. These helpers should be people familiar with your needs and abilities, who would be able to help you both escape an emergency situation and in dealing with its aftermath. Red Cross recommends a minimum of three people in your network, in the event that someone is not available when needed. Decide on a place where you will meet.

There should also be an out-of-town contact, as it is often easier to call someone long distance versus locally after an emergency or disaster. It is recommended that individuals text if at all possible, so they do not tie up phone lines for emergency personnel.

To document all your contacts, as well as relevant information such as food/drug allergies and medications, FEMA offers wonderfully concise forms  for individuals to download:  https://www.fema.gov/media-library/assets/documents/34330  There are versions for both adults and children. Red Cross also has a downloadable emergency contact form for the wallet or purse:  http://www.redcross.org/images/MEDIA_CustomProductCatalog/m4240194_ECCard.pdf

 It is recommended that individuals review their information every six months.

The person should then create a personal assessment, based upon the lowest anticipated level of functioning. For example, do you need help with personal care or grooming? If you use equipment that requires electricity, such as a power wheelchair, what will you do if it’s not possible to use it? Can you purchase an extra battery, or is there a lightweight manual chair you can store as backup? Or, if you need an elevator to leave a building, is there someone who can help you down the stairs?

If you are vision impaired, deaf or hard of hearing, who will convey emergency information to you if you are unable to use the TV, radio or phone? In addition, this person should be able to communicate with first responders on your behalf.  Consider keeping pre-printed phrases or a word board if you feel you might benefit from them.

If you use a service animal, what will his or her needs be? Keep your animal’s medical information on hand, as well as any documentation certifying that he or she is indeed a service animal.

These questions and many others are imperative to your safety and well-being in case of emergency.

Many communities have programs with which a special needs individual can register beforehand. That way, emergency personnel will be able to put a priority on reaching you. Reach out to your local police or fire departmentl to find out if your area has one.

Of course it isn’t possible to plan ahead for every conceivable scenario that might occur. But that doesn’t mean you shouldn’t make as many preparations as you can! While none of us can avoid danger or disaster, at the very least we can give ourselves some peace of mind in being as prepared to fight it as we can.


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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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