Life Turned Upside Down

Katrina highlights need for disability disaster planning

by Christina Medvescek on November 1, 2005 - 9:47am

QUEST Vol. 12, No. 6

When Hurricane Katrina devastated the Gulf Coast region in late August, she blew destruction equally upon all in her path. Yet those with disabilities endured additional challenges and dangers both during and after the storm.

Many people with disabilities faced more difficulty in evacuating, greater inconvenience — and in some cases life-threatening danger — because of the loss of electrical power and severely limited housing options.

Once the immediate crisis had passed, people with disabilities who relied on personal care assistants (PCAs) or service/medical/support networks struggled to piece together fragmented resources in order to replace the assistance essential to their everyday lives.

Hurricane damage at Barbara Twardowskis house
Barbara Twardowski's home in New Orleans suffered damage to the roof and the interior.

Both individuals and disability advocacy groups say the lesson of Hurricanes Katrina and Rita is the critical need for much better-coordinated disaster preparation and response systems for people with disabilities. (See “Improving Emergency Preparedness.”)

No room at the inn

Imagine that every single thing in your life is turned upside down,” says Barbara Twardowski, 45, of Mandeville, La., a New Orleans suburb.

Twardowski, who has Charcot-Marie-Tooth disease and uses a power wheelchair, is a freelance writer who often contributes to Quest. When Katrina loomed, she, husband Jim and teenage son Weston fled to Lufkin, Texas, about six hours away, where they have friends.

Meanwhile, a tornado spawned by Katrina hurled pine trees through their home’s roof, punching holes that let in the pouring rain. The home was about 40 percent destroyed.

In the storm’s aftermath, Twardowski says, she quickly learned how much she took for granted. There were the obvious frustrations: nonfunctional cell phone and ATM card, no mail service, lack of access to prescriptions.

Barbara Twardowski
Barbara Twardowski

But one of the biggest challenges was — and continues to be — accessible housing. In Lufkin, Twardowski stayed in a hotel rather than with friends because of bathroom accessibility. Three weeks later she returned to Louisiana and faced the same problem, except this time there were no available hotels.

Although their contractor warned against it, the family decided to stay in the undamaged part of their house. Even with no hot water, no kitchen, warped floors, gaping holes and insulation falling out of the ceiling, it’s the most accessible place available to her wheelchair.

“The housing market here has gone absolutely crazy,” Twardowski said in late September. “There’s nowhere to live. The one place with accessible apartments is totally filled. Friends’ homes are not accessible to me. So, the game plan is to stay here while they make repairs. It’s not an ideal situation.

“This just shows how much we need universal design. We need to build for ‘visitability.’”

Power to breathe

Although Hurricane Katrina wasn’t at full strength when it passed over Florida, it still packed quite a punch — enough to knock out Shelley Obrand’s power for over 50 hours.

Obrand, 48, of Davie, Fla., is a former member of MDA’s National Task Force on Public Awareness and works at Nova Southeastern University in Fort Lauderdale. She has a nonspecific type of muscular dystrophy, is unable to move and relies on BiPAP ventilation at night.

Shelly Obrand
Shelley Obrand

“I wouldn’t be alive without my BiPAP,” she says simply. “It’s not an option to go without it.”

The power outage truly threatened her survival.

She and her mother, Suzanne, had purchased two extra wheelchair batteries to run the BiPAP, but didn’t anticipate the length of the power outage. With the batteries running low, Obrand called her local fire department. Within 10 minutes a fire fighter was at her door. Fire fighters picked up, recharged and delivered batteries to Obrand several times before power came back on.

“In hindsight, I should have set this up in advance,” Obrand says. Now she’s considering purchasing a generator in anticipation of future storms.

It’s very difficult for her and her mother to evacuate, because Obrand needs not only a constant source of electrical power, but a caregiver, special mattress and accessible bathroom. The only place for her to go is a hospital, but staff wouldn’t allow her mother to stay with her there.

“The best option is for me to stay put in my own home if I can,” she says.

Creating a coordinated response

The National Council on Disability (NCD), an independent federal agency that advises the president and Congress on issues affecting 54 million Americans with disabilities, has proposed several actions to mitigate Katrina’s effect on people with disabilities.

“NCD believes there is a dire need for urgent action by the U.S. Department of Homeland Security (DHS) to assist people with disabilities,” Chairperson Lex Frieden wrote to DHS Secretary Michael Chertoff on Sept. 19.

These actions include appointing a “point person on disability” to coordinate relief and recovery actions for people with disabilities; developing a disability-specific federal recovery plan; establishing a disability advisory group; and ensuring that there are adequate funds and resources to meet the needs of survivors with disabilities.

Rapid assistance is needed to restore organizations that serve people with disabilities, identify temporary and permanent accessible housing, and ensure coordination among social, health and education services.

NCD also urged that all rebuilding be done in accordance with the Americans with Disabilities Act, with a focus on universal design.

Some areas already have made improvements to their disability disaster plans. Paula Orandash, MDA’s health care service coordinator in St. Petersburg, Fla., notes that Pinellas County encourages people with disabilities to pre-register to determine where they should take shelter.

“You know exactly where you’re going ahead of time, and that shelter, hospital, nursing home or other facility knows you’re coming,” Orandash explains, noting there’s a move to make this a statewide requirement.

Lessons learned

Federal and state planning are crucial, but Katrina pointed out a few things that individuals can do as well, say Twardowski and Obrand:

  • Designate a contact person who lives far away from you, so if telephone service is knocked out in your area there still is someone to coordinate information on people’s whereabouts.
  • If you’re evacuating, bring the assistive equipment that makes your life easier. Many people, thinking they would go home soon, left behind wheelchairs, canes, walkers and other items. Twardowski says she dearly missed her tub transfer bench and portable ramp.
  • If you don’t have power but other areas do, pay an extended visit to an air-conditioned mall or store. Obrand even brought along her BiPAP and plugged it in at a helpful shop.
  • Contact your local electric power company to ensure you’re on a priority list for power restoration.
  • Get to know your local fire fighters. “Drop by, say ‘hi, I’m here,’ and get a relationship going,” Obrand advises. “Sometimes they may ask you to do talks for other fire fighters.” The International Association of Fire Fighters is MDA’s largest sponsor, and fire fighters across the country work closely with MDA programs.
  • Don’t be ashamed to ask for or receive help.

Although Twardowski’s life has been turned upside down by Katrina, she knows “equilibrium will return as we do something to rebuild our life, our house, our church, our neighbors.” Both she and Obrand say they feel blessed by the help they’ve received and by the things in their lives that still work as they should.

“And one other good thing has happened,” Twardowski laughs. “Now that we don’t have a kitchen, we’re getting all kinds of dinner invitations.”

Improving emergency preparedness

People with disabilities are more vulnerable in disasters — but certainly not helpless.

In case you missed it, check out Quest’s article “Plan Ahead for Emergencies.” The article outlines ways in which people with disabilities can prepare for unexpected events like power outages, natural disasters and small daily disruptions that can have serious consequences.

The National Council on Disability (NCD) wants to know how well the system worked for Katrina survivors with disabilities and the organizations that serve them. NCD advises the federal government on disability issues, and earlier this year published a report called “Saving Lives: Including People with Disabilities in Emergency Preparedness” (

NCD's questions raise issues all communities must consider in disability disaster planning:

  • How were you provided with information about the severity of the emergency, how to prepare for it and how to evacuate?
  • Did you have access to your personal assistant, service animal, assistive equipment or alternative communication device during and after the hurricane?
  • Were accessible housing, shelter and transportation available? Was accessible medical or mental health care available?
  • Did schools offer accommodations to students with disabilities?
  • What immediate, short-term and long-term aid did private, civic, faith-based and advocacy organizations provide?

Responses and comments may be sent to NCD at Suite 850, 1331 F St. NW, Washington DC, 20004, or e-mail

MDA and Hurricane Katrina relief

In addition to helping raise money for immediate hurricane relief, MDA staff, families and volunteers responded quickly and compassionately to the needs of hurricane survivors. MDA clients displaced by the storm needed loans and repairs of equipment, transportation, clinic appointments, help with finding housing and more.

To read more about MDA’s efforts and the experiences of people with muscular dystrophy affected by Katrina, see “Katrina Sends People Served by MDA Scrambling for Help” at

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