NEW ORLEANS — Every summer, Sue Bordelon starts to worry.

Her son Clarke, 28, has autism and a chromosomal disorder that makes him medically fragile. When hurricanes come, it’s hard to go without power. But the horror of evacuating for Katrina taught them it’s even more difficult to leave.

After Hurricane Ida struck their Algiers home last year, they lost $1,600 of bone marrow medication when the electricity went out for two weeks. Day after day, Bordelon and her sister took turns fanning Clarke to keep him cool and encouraging him to read as a distraction. As she sat in sweltering temperatures, keeping a close eye on a manual feeding tube, Bordelon felt a familiar sense of despair.

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“I told my sister, the next hurricane, I wish it would come right this way, completely take us out,” she said, breaking into tears. “Then we wouldn’t have to figure out what to do.”

In the aftermath of Ida, caregivers for the medically fragile who rely on ventilators and other medical devices panicked as the hours stretched into days and weeks without electricity. The city encouraged seniors and desperate families to call 311 and sign up for its special needs registry, but little was done in the days following the storm. Seven seniors died in their apartment homes before the city evacuated the buildings.

“As hard as it is to say, this was a gap,” said Dr. Jennifer Avegno, city health director, of the senior deaths.

Since then, the city has worked on dismantling the special needs registry and replacing it with another system called Smart911. A new ordinance requires senior apartment homes to have plans and communicate with city officials about what they are. But as residents stare down another active hurricane season, one that experts predict will result in 6 to 10 hurricanes and 3 to 6 major hurricanes of Category 3 or greater, advocates and vulnerable people wonder if these changes will make a difference.

Bordelon, a 63-year-old widow and former chemotherapy nurse who stopped working so Clarke could meet income requirements for federal insurance, said she just doesn’t have the money to go to a hotel for weeks.

Even evacuating to a relative’s house is out of the question. After Katrina, they decided to come back to a flooded house because Clarke, who doesn’t do well without routines or in crowds, sprinted for the highway in a town outside of Lafayette. She and her sister chased after him, landing in the mud. She held onto him by the foot. He told her he was just trying to get back home.

Bordelon said she has called 311. Her son is on the registry. But she’s never heard of Smart 911.

At this point, she expects no help.

“I don’t even bother,” she said.

The transition to Smart911

The special needs registry was started in 2013. Over the next few years, the city went door-to-door in low-income apartments to find vulnerable people. Officials also used Medicare data to pinpoint how many people might need help powering life-sustaining medical devices.

But what started with good intentions has become unmanageable. The list grew from 750 to 4,800 people by the time Ida rolled through, according to Meredith McInturff, the city’s public health emergency coordinator.

“It kind of became this tool that was being promoted by all city leadership as, if you need any sort of assistance during a hurricane, you should get signed up for it,” she said in a presentation to advocates.

But the system didn’t have the organization or workforce to follow through on that.

It set up an “unrealistic expectation,” said McInturff, “that every single person signed up would be evacuated out during a storm.”

Although special needs registries have caught on in disaster-prone states like Florida, Texas and California, they rarely work, said June Kailes, a disability policy researcher.

“Nobody can keep it updated,” said Kailes. “People who need it don’t register anyway. There’s no data that says it works.”

In that sense, the Smart911 system, a communication platform that allows residents to create profiles detailing everything from whether they have a COVID infection to needs like medical equipment and ventilators, is an improvement.

The city can also use the system for other purposes, such as alerting emergency responders that the person calling may be hard of hearing or pregnant. It allows an entire household to sign up, and tech-savvy family members can assist others in the process, said McInturff.

But advocates say the changes are not enough to address the thousands who need extra help in disasters. Smart911 offers an easy way to text or contact registrants, but it requires them to renew every six months. Participants need a smartphone to download the app or have the ability to register on a clunky interface on a computer.

“It almost is no change,” said Claire Tibbetts, the administrative manager of Autism Society of Greater New Orleans. “Instead of trying to fix the problems, they were just gonna eliminate the registry and dial back to only the thing that they were willing to provide in the first place.”

A new ordinance with lax compliance

The City Council also passed a new ordinance for low-income senior apartment homes that requires that property owners communicate with the city about their emergency plans and whether they have back-up generators to power elevators on site. That way, Avegno said, the city has eyes on who needs help.

But it does not require that the building owners have generators.

Augustus Johnson, 88, uses a walker to shuffle along the scuffed hallways in the Flint Goodridge apartments in Central City, a former hospital built in the 1930s that has been turned into low-income apartments for seniors. In the days following Ida, Johnson was stuck on the fourth floor when the lone elevator stopped working. Outside, the heat index was 105. After a dead body was found in the building, the result of the loss of power that left a resident without a working oxygen machine, Johnson was carried down the stairs and evacuated to Shreveport.

A lone security guard brought food for residents and kept their phones charged, said Johnson. Without him, they would have “caught holy hell,” he said.

“They don’t care about you in this building,” said Johnson. “They don’t give a damn about nobody.”

After the evacuation, Johnson was hospitalized for a prostate issue he attributed to the long bus ride to multiple shelters.

The residents haven’t heard anything about a new plan. They’d like to see a generator, or just have the peace of mind to know someone is looking out for them.

“Who can we call on if something happens to us?” said Johnson. “We have to go through the same thing, begging somebody to come here to help us.”

The city is working on getting emergency plans from more than 70 buildings, but only 41 have complied so far. HRI Properties, the New Orleans developer that owns Flint-Goodridge, did not respond to messages. The Archdiocese, which owns several low-income apartments for seniors, also did not respond to questions about a new plan.

Johnson and half a dozen residents around the building this month had never heard of a special needs registry or Smart911.

SMART 911 pitfalls

For those who have heard of Smart911, the sign-up has proved to be difficult.

Jack Dee, an 80-year-old retired Marine who lives in Gentilly, called 311 to register for the new system from his government-issued flip phone recently. But the woman who answered the phone wanted him to pick a password with multiple symbols and numbers.

“I said, ‘What? I’m 80. I’m technology challenged. I wouldn’t know how to create a number on this Obama phone if you paid me a million bucks,'” said Dee.

He gave up on the Smart911 profile, even though he’s got walking issues and was hospitalized for heat stroke after Ida last year. His sister in Oklahoma offered a plane ticket before the storm, but he didn’t think the flight would go well. A toolbox on his front porch serves as his mailbox because a short walk to the street is hard on him.

After being treated for heatstroke, Dee was dropped back off at his powerless home, where he lives alone. He went to a cooling center on the corner of Fillmore and Marconi at a NORD facility, but there was no air conditioning, water or food. Neighbors with a generator took him in until his power was restored weeks later. He worries about other people his age.

“You’re going to have thousands of senior citizens get lost in the shuffle,” said Dee. “They’re going to try to sign up, they’re going to hit that brick wall, and that’s going to be it. They’re just going to fade away.”

‘Will the same thing happen?’

Even if evacuation is offered, it often doesn’t work for families.

Charlie Nero, 36, signed up for the special needs registry because her daughter has cerebral palsy and relies on several medical devices. But when she got the offer to evacuate with Chloe, 6, before Ida, she was told she could only bring one bag. Her 13-year-old daughter wouldn’t be allowed on the bus. The equipment Chloe requires to live — multiple chairs, suction devices, bottles of milk, diapers, feeding tubes and a pump — would take up an entire van.

“Chloe has so much stuff,” said Nero. “You can’t just say I’m gonna have just one bag. It won’t work like that.”

Nero evacuated with family instead, who were able to pay for a hotel room. But this year she’s concerned because Chloe no longer fits in her car seat, and she can’t get reimbursed for another one until she’s 14. The only way she can transport Chloe, who uses a trach to breathe, is by holding her in the backseat. Nero will have to depend on her mom to drive. She’s never heard of the Smart 911 system.

Advocates welcome some of the changes, but worry Smart911 may have the same issues as the registry, said Nicole Williams, the education advocate for Families Helping Families NOLA. Williams, who has spina bifida, is on the registry herself.

“When I first signed up for special needs registry, I was under impression when a hurricane situation happened, someone from the city would start calling families,” said Williams. “Those phone calls never happened. Will that same thing happen switching over?”

Even if the communication platform does work better, services fall short. For Williams, it highlights just how difficult it is to have a disability in New Orleans. She knows families who have moved to cities with fewer disasters and more assistance. When asked if New Orleans is a good place for people with disabilities, she doesn’t hesitate in her answer.

“I’m born and raised here. I love my city,” said Williams, who lives in New Orleans East. “But no. Even though the resources are there, they are slow to reach out to families. They make you jump through hoops and go through miles and miles of red tape.”

As Bordelon prepares for another season, she’s thinking back to Katrina. She wishes she got out of the city then.

“I would leave here in a second,” said Bordelon. “Disabled people are not respected here.”

But she can’t. So she waits, hoping for a summer without electric fans or 311 or tracking the slow drip of food into her son’s feeding tube in the dark, keeping watch so it doesn’t get clogged without the pump.

“Every beginning of summer it’s on our mind,” said Bordelon. “When is it coming?”

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