After Harvey, questions remain about whether registry helped people with disabilities

One woman, in a wheelchair, sat in water to her waist when emergency responders arrived. They could not accommodate her chair and told her they’d come back. They never did.

A husband and wife were trapped in their home, with the wife recently out of the hospital and in a wheelchair. A man was turned away from a shelter that wouldn’t admit his service dog.

Those incidents, documented in emails during the frantic hours when Hurricane Harvey’s historic rains and flooding inundated thousands of Houston homes, show disability advocates and government officials scrambling behind the scenes to help disabled Texans trapped by the flooding.

Texas has a system in place to identify people with disabilities who will need extra help during a natural disaster. But it’s unclear whether any of the people described in the emails signed up for or even knew about it. It’s also unclear how many people actually received help through the State of Texas Emergency Assistance Registry, or STEAR, during Harvey.

But as the recovery continues a year after Harvey’s Aug. 25, 2017, landfall, there’s tension and confusion in the disabled community about whether the registry will actually work when they really need it. As of November, 75,733 Texans were registered with STEAR, according to the Texas Department of Public Safety. The registry allows people with disabilities and special medical needs to sign up to receive priority status for evacuations, shelters, wellness checks, power and water shutdowns and information on support services.

More than half of STEAR registrants have physical, sensory, mental health, cognitive, or intellectual needs that affect their ability to function independently. Many don’t have a vehicle and have no way to evacuate without assistance.

In a disaster, disabled people are more at risk: wheelchairs or walkers may be left behind during an evacuation, a shelter may not be able to fully accommodate needs like accessible showers for people with mobility impairment, quiet areas for people with autism or space for someone who weighs 350 pounds or more. Some cannot afford multiple nights in a hotel.

While the Texas Department of Public Safety’s Division of Emergency Management administers the registry, the agency does not provide direct services to STEAR registrants during emergencies. The agency’s webpage notes that there are no guarantees for help.

“Your information will be provided to participating local governments for their use in developing emergency management plans and to assist them in preparedness and response activities,” according to the website.

While local officials can use the registry to dispatch emergency personnel and plan ahead for who may need special assistance during an evacuation, there’s no requirement that they use the registry — and no protocols for how to use it.

Lex Frieden, a professor of biomedical informatics at the University of Texas Health Science Center at Houston and one of the authors of the American Disabilities Act, said “it’s just maddening, frankly” that the database was not used to its fullest potential during Harvey, which caused more than 90 deaths.

“It was a tacit contract that promised people who felt they might need help at some point and volunteered the information, they would be rescued if needed and checked upon after the disaster,” Frieden said.

Rick Flanagan, emergency manager for the City of Houston, said his office and emergency responders were fielding thousands and thousands of calls during the historic storm. Typically, the office uses STEAR five days or more in advance to tell registrants where to go and help them get out of the city. But with the magnitude of Harvey, Flanagan said they wound up not using the system. "We got really tied up with the different locations and multiple locations of events and the high call volumes," Flanagan said. "We did not use the STEAR structure as it could've been used." Asked if they hoped to use STEAR for future disasters he said: "Oh my god, do we want to use it? Yes we do."

Frantic calls for help

During Harvey, 911 responders and Houston’s 211 help hotline were overwhelmed with calls as huge areas of the city were submerged by floodwaters.

Emails obtained through a public records request to Gov. Greg Abbott’s office showed disability advocates and city and state officials trying to coordinate assistance for people with disabilities who called for help during Harvey.

“Several people have been calling us back at the hotline to say they still can’t get through and their situation is getting more dire. Should I resend their contact info?” Marcie Roth, president and CEO of Partnership for Inclusive Disaster Strategies, a company focused on people with disabilities and emergency management, wrote in an Aug. 27 email.

Ron Lucey, executive director for the Texas Governor’s Committee on People with Disabilities, replied that he “would get more worried when they stopped calling back.”

“I know we are hours away from using STEAR data to account for missing individuals who signed up for evacuation assistance since the focus is on known emergency rescue requests,” Lucey said. “However, if rescuers are within blocks of another STEAR registrant while conducting a rescue I would hope they would take the extra time to check on that individual and family. This may be happening. Thoughts?”

Paul Timmons, co-founder and chairman of Portlight Inclusive Disaster Strategies, an organization focused on disaster relief for people with disabilities, wrote back: “No need to worry at that point … they’re dead … this event has far outpaced the poor planning insufficient systems … this is EXACTLY why registries are such a bad idea.”

According to the American Community Survey 2016 5-year estimate, nearly 861,000 people with disabilities lived in areas struck by Harvey. But the Federal Emergency Management Agency has “no way of knowing” how many people with disabilities were impacted by the hurricane, agency spokesperson Lauren S. Hersh said in an email.

“We only know about survivors who registered with FEMA and even then, not all disabilities are obvious and not all of those with disabilities choose to reveal that information,” Hersh said.

Maria Town, head of the Houston Mayor's Office for People with Disabilities, ran a disability disaster survivor hotline during the storm and for nine months after it ended with help from the Partnership for Inclusive Disaster Strategies. They called on disability advocates to coordinate resources like helping people apply for FEMA assistance and and getting supplies to people with disabilities in shelters. They’re also still hosting calls with advocates to help people find housing, food and navigate FEMA’s complex bureaucracy.

“I know that in disasters disabled people die, and I didn’t want people to die needlessly because of a system failure or because something wasn’t accessible,” Town said.

She said the city worked with the county to access the state registry and pushed them to make calls to registrants in evacuated areas, but added that “there is a kind of false expectation that is created” when people sign up for the registry — they think help is automatically coming during a disaster.

Town said her team fielded many calls on the disability disaster survivor hotline from people asking for help, saying “I registered, I was proactive.” She said they heard from people who use breathing machines, power wheelchairs or home dialysis equipment who called and said, “I called 211, I registered and no one helps me.”

“In some ways I think maintaining registries like this can be a liability for states and localities and counties, because again you have people who may need life-saving rescue and because the evacuation wasn’t ordered, the assistance never came,” Town said.

Rita set stage for Harvey

During Harvey, Houston Mayor Sylvester Turner decided against ordering a mass evacuation, citing public safety.“You cannot put, in the city of Houston, 2.3 million people on the road. ... That is dangerous,” Turner said at the time. “If you think the situation right now is bad — you give an order to evacuate, you create a nightmare."

The reluctance to order evacuations in many coastal cities was colored by the experience of Hurricane Rita in 2005.

After watching more than 1,800 die in New Orleans during Hurricane Katrina that August, more than 3 million Texans fled the coast ahead of Rita. But people still died when the roads became overwhelmed with evacuating people and gas stations ran out of fuel. Of the 139 deaths that the state linked to Rita, 73 occurred before the storm hit Texas, including 23 who died in a bus fire and 10 who died from hyperthermia due to heat exposure.

“I know people with disabilities who died because they were stuck in that traffic,” Frieden said. “They didn’t have the medicine they needed, in one case I know of a man whose batteries went down after being stuck in traffic hours and hours … they rigged him up to a car battery, which is just a shame.”

Frieden says since Rita, there’s been a push for people to shelter in place with supplies during natural disasters.

Which is why it’s so important for STEAR to work, advocates say.

Roth, of the Partnership for Inclusive Disaster Strategies, said people with disabilities during natural disasters are “vulnerable because of a lack of planning, consideration and engagement.” She said the registry was “ineffective” as a rescue tool and recommended the money earmarked for STEAR be given to local disability organizations that have better strategies for helping the disabled community in a disaster.

“If I can’t reach you by phone or if there’s no power and your phone died or if your phone is under two feet of water, what else is part of the plan other than a phone call?,” Roth said.

Lucey, the executive director of the governor’s disability committee, said there are efforts underway to overlay disaster maps with the addresses of people with disabilities to help first responders reach them faster.

The committee also released policy recommendations in 2017 that included having the Texas Division of Emergency Management hire a full-time disability coordinator, requiring all local emergency management jurisdictions to hire a data person to manage STEAR data and encouraging state health and human services agencies to discuss emergency preparedness and evacuation planning with people with disabilities.

The disabled community also has expressed concern about having to re-register for the database every year, saying many people either don’t know it’s necessary or forget to do it. The 2017 committee report noted that sign-ups for the registry are hindered by the need to re-register every year.

Officials say re-registering helps prevent emergency personnel from going to old addresses after people move or die.

Lucey said he understands the concerns around the registry, adding that it should “never be a replacement emergency plan.” He said the best thing local jurisdictions can do is connect with the disabled community and be transparent about how they’re going to use STEAR data during disasters. He said there have been success stories of local officials using STEAR for search and rescue and helping restore power for people who rely on electricity to stay alive.

“Most people, whether it’s Hollywood movies or whatever, they always see this big command center or operation center and they believe that disasters are run from the top down, and they’re really from the bottom up,” Lucey said.

Morgan Smith contributed to this report.