for people with disabilities, few good disaster options | Louisiana News
By EMILY WOODRUFF, The Times-Picayune / The New Orleans Advocate
NEW ORLEANS (AP) – It was four days after Hurricane Ida, and Grace Hollins feared her son could endure another day in the heat.
Carl, 28, suffers from severe intellectual and developmental disabilities. His seizures were made worse by the heat and Hollins only had one diazepam syringe to treat them. Adult diapers, usually delivered on the first of the month, were almost sold out. Ida had smashed a window and made a hole in her roof in the St. Roch neighborhood of New Orleans, and the mosquitoes were entering. She didn’t know who to turn to.
“It was scary. It was horrible. My son didn’t understand,” said Hollins, 55, who is also disabled from a back injury. “He just couldn’t grab it. couldn’t grab it either.
In the aftermath of a hurricane, it is difficult to do without electricity. But for people with disabilities and their families, temporary discomfort can threaten their health and their lives. At the same time, evacuation can be almost impossible for some, whether due to a lack of money, transportation, or few accommodation options for people who need a lot of help. equipment or special conditions to survive.
Ida outlined the flaws in Louisiana’s special needs response and how the state approaches situations where a prolonged power loss or other slow-burning consequences can have devastating consequences. Despite a steady stream of natural disasters in Louisiana, each hurricane reveals flaws in the system. The systems in place, such as special needs registers, do little to address situations that deteriorate once the power goes out and conditions are unlivable.
“They have to have some type of plan, of service for them – period,” said Deatra Hollins, Carl Hollins’ cousin and a licensed practical nurse who was trying to help from afar after evacuating her own family. “They have been forgotten.
New Orleans and other parishes have lists of residents with special needs. Deatra Hollins added her cousin to the registry right after Ida and tried to put him and his mother in a shelter, but she didn’t receive a callback until five days later. The call operator apologized and said the special needs shelters were full of nursing home patients who had been rescued from an evacuation warehouse in Independence.
According to the state, the medical shelter in Alexandria has never been full and no one has been turned away. But Deatra Hollins heard otherwise, and she didn’t want her cousin and aunt to risk a long trip if there was no room.
Entergy Corp. also has a register to which residents can register via a doctor’s note. But it is not known whether it is used to prioritize food restoration. Entergy did not respond to questions about how many people are on the registry and how the company uses it.
“Here’s the end result,” Entergy rep David Freese wrote in an email. “While our teams are dedicated to restoring power, customers need to have a backup system and plan for power outages or other emergencies. “
The state verifies families through a waiver service program that provides home and community care as needed. Each family that receives a waiver also has a support coordinator, who makes sure the family has an evacuation plan. There are around 630 coordinators for around 20,000 people with disabilities severe enough to need help with daily living, said Julie Foster Hagan, assistant secretary of health for the Bureau of Citizens with Developmental Disabilities.
“With a storm the size of Ida, cell phone service and contact was made difficult,” Hagan said. In these cases, the state relies on volunteers from the Louisiana Emergency Management Disability and Aging Coalition to help those in need. Helping people with disabilities in emergencies often involves a patchwork of neighbors, parents with sufficient resources, and other families with parents with disabilities.
But even the best plans put together by those most familiar with the medical system and hurricanes can go wrong, officials acknowledged. Coordinators are expected to reach out before and after the storm, but they themselves are often hampered by the damage caused by the storm. Officials said coordinators reached out before Ida, but many families said communication was spotty after the storm.
In the far east of Livingston Parish, Ruth Kennedy, 67, thought she had a good plan for her 53-year-old adopted sister, Regina, who needs help dressing, bathing and walking. Regina’s support coordinator checked in before the storm and confirmed they had a generator and 100 gallons of fuel to share with a close relative.
But as the days of no electricity dragged on, the fuel ran out. Regina’s home caregivers were stuck in their own homes or had left town. Kennedy decided to evacuate with his sister. But she worries about people who don’t have the money or the ability to leave.
“I have the resources to get up and drive to Birmingham,” said Kennedy, former director of Medicaid for the Louisiana Department of Health. “But look at the people who maybe don’t have those kinds of resources. What did they go through?
Sue Roeskey, 61, who lives in Metairie, has suffered her fair share of hurricanes. Her 31-year-old daughter Lauren, who doesn’t speak with cerebral palsy, was airlifted out of Tulane Medical Center’s New Orleans campus after Hurricane Katrina in 2005. A few years later, she tried to evacuate to Houston to get out of the storm’s path. . But the journey took 17 hours, excruciating time for Lauren to be strapped into the van.
Now it’s even more difficult, as Lauren is taller and uses a bed lift, shower chair, and various devices such as a feed tube and vacuum machine that require electricity and power. cabinets full of drugs and supplies. If she goes more than six weeks without filling a special implant in her abdomen with medication – which not all hospitals can do – she has 24 hours before she can die.
“All of these things that people take for granted – ‘Oh, I can just sweat for a few days’ – that’s not an option for Lauren,” Roesky said. When Lauren begins to sweat and becomes dehydrated, she can deteriorate quickly.
During Ida, Lauren and her mother stayed in their house. But two days later, still without power, Lauren was not doing well in the heat. Caregivers provided by the state’s waiver program had also been evacuated, and 24-hour work fell to Roesky.
Finally, another relative brought a generator, window air conditioner and gasoline from Lafayette. His brother in Texas went halfway to refuel.
“We were lucky this time,” Roesky said. “We’ve talked about buying a whole house generator, but it’s a lot of money.
Roesky asked if the state would allow the money generally available for home modifications, like wheelchair ramps, to be allocated to a more permanent power solution, but he was told no.
The state has received numerous requests for money for more stable energy sources for people like Lauren, said Hagan, assistant secretary of health. “It’s something that we’ve stepped up and tried to look at, but it’s not something that we can use Medicaid dollars for,” she said.
Every family with a disability is different, says Karen Scallan, a Medicaid counselor who helps families navigate the mountains of paperwork and obstacles to overcome when seeking services. Universal escape plans don’t work for people in such different situations.
Scallan and his 20-year-old son, who has Down syndrome and autism, were first evacuated to Shreveport. They stayed in a hotel with his elderly mother and sister, four of them in one room. It was tight, but a shelter doesn’t work for a lot of people with autism, Scallan said. They are overwhelmed by other people, noises and smells. Scallan also cannot stay in his home in St. Charles Parish, where there is no running water, sewage, or the Internet.
“When all of these things are disrupted it creates tremendous anxiety in them, which makes it difficult to deal with the daily things to come: trying to find gas for the generator, or food or water,” said Scallan.
Until they get services in St. Charles, they split up a condominium in Gulf Shores, Alabama with a friend. They can stay until October, but it will be a big expense. Scallan estimated that she had spent up to $ 4,000 so far.
People who live paycheck to paycheck are worse off, she said. People with disabilities who are not in the waiver system are not screened; for them, it takes an emergency before anyone notices.
From a relative’s home in Alabama, Kathy Dwyer scoured social media posts across Louisiana after Ida, looking for people like Grace Hollins. Louisiana State Advisory Committee on Developmental Disabilities volunteer chairperson Dwyer had evacuated from Metairie with her 44-year-old daughter Jen, who is also disabled. And she knew there would be people who needed help.
Dwyer stumbled across a Facebook post from Deatra Hollins, who said she and Grace Hollins were out of breath after making over 100 phone calls for help for her disabled cousin. They called 911, their church, the Federal Emergency Management Agency, the New Orleans Special Needs Registry, and the Cajun Navy, but no one could find them a place to go.
Finally, on September 6, eight days after the storm, they left New Orleans. Dwyer called the Developmental Disorders Office, where an employee knew of a nonprofit that could donate two bus tickets to Atlanta.
“I’m just trying to keep my head above the water and not overthink too much,” Grace Hollins said. She was not reimbursed for the money she spent on their hotel room. Her FEMA candidacy, which Deatra Hollins helps her complete, was not approved. She said she made do with around $ 300 a month after her rent and electricity were paid. Last week, she spent $ 60 on adult diapers. She replaces all the food that went awry in the house during the storm’s power outage and buys Pedialyte and special nutritional drinks for her son Carl.
“I do everything,” Hollins said, as she walked back from the corner store in the rain on Friday. “And you think I’m not broken?”
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