Special needs shelters save lives during hurricanes. Could they work for blizzards?

The West Seneca clinic served 47 patients who needed dialysis three days per week.

“Someone can go for five days without dialysis – most people can who have end-stage renal disease,” said Dr. Richard Quigg, clinic medical director. “You go beyond that, then you start to have problems that you can’t undo.”

The DaVita staff had to improvise. They opened early Friday as the blizzard gathered steam and treated all of their 60 dialysis patients, regardless of whether they normally had an appointment on Fridays. More than half made it back on Tuesday and the clinic was pretty close to normal by Wednesday.

“We knew in advance what was going to happen, so we planned as best we could,” said Quigg, also chief of the Division of Nephrology in the University at Buffalo Jacobs School of Medicine and Biomedical Sciences.

Thanks in large part to the clinic staff’s quick thinking, DaVita’s dialysis patients all managed to weather the storm. But there may be an easier way for some of those dialysis patients – as well others with pressing medical needs – to get care they need during future blizzards: special needs shelters equipped to help those who need specialized care and medical equipment that requires electricity.

Many counties in Florida, including Miami-Dade and Broward, open and provide transportation to special needs shelters during hurricanes and other disasters. People who may need the shelters are encouraged to apply in advance and treat them as a “last resort” if they have no other options.

Special needs shelters have found their way north, too. Suffolk County has a similar program in place for natural disasters.

The City of Buffalo established several daytime warming shelters for the general population during the December blizzard, but two of them in the Lovejoy District lost power and there were none in the Old First Ward, according to a New York University blizzard report commissioned by the City of Buffalo. Officials also failed to tell city residents how they could safely get to a shelter.

The NYU report noted that Buffalo has since started establishing more warming shelters with backup generators for use during future storms.

Dr. Geovanny Perez said some of his patients used Florida’s “robust” special needs shelters when he was a medical resident at Miami Children’s Hospital.

“They already know the trajectory [of the hurricane], so they will move all our ventilator patients,” said Perez, a pediatric pulmonologist at Oishei Children’s Hospital in Buffalo and chief of the Division of Pediatric Pulmonology at the UB Jacobs School.

Miami-Dade hospitals make room for some of these patients, as do hotels that have power generators, thanks to a collaboration between the government and regional health care system.

Perez said most of his patients in Western New York can get through blizzards with existing resources. They will stay with an out-of-town family member, buy a generator ahead of time or come up with other arrangements. Health care providers pitch in by helping patients and caregivers create a backup plan before they leave the hospital. Providers also give electric and gas companies a list of homes where someone needs electricity to survive.

Still, patients fall through the cracks “from time to time,” he said.

“Usually, those gaps are with families that are either underserved or are poor, or they might not have access to go anywhere,” Perez said. “Buffalo has seen an influx of refugees and immigrants, so they might not know the system, or they might not have anybody else around, and that’s difficult.”

Erie County already has one component needed to start a special needs shelter. Residents with disabilities or medical needs can add themselves to a “functional needs registry form” through Erie County’s website so county workers can assist before, during and after an emergency situation.

“Individuals who are on dialysis, who are on oxygen, who have developmental disabilities, who are deaf, they can fill out that form, so we have that information prior to an emergency situation happening,” Deputy County Executive Lisa Chimera said.

With or without a registry, special needs shelters will only help if storm warnings are widely and clearly communicated to people in need and the temporary lodgings are implemented correctly, said Lindsay Peterson, research assistant professor in the School of Aging Studies at the University of South Florida.

Peterson was part of a research team that received a National Institutes of Health grant to study the effects of Hurricane Irma in Florida in 2017 on nursing home and assisted living residents, which led her to become more curious about disaster preparedness as it relates to caregiving. She is familiar with special needs shelters run by counties across Florida.

Overall, she said, many caregivers in Florida are not necessarily inclined to go with a loved one to a shelter.

When Hurricane Irma struck the state’s Gulf Coast and the even-more-destructive Hurricane Ian wreaked havoc in southwest Florida nearly a year ago, places including Palmetto Ridge High School in Naples became special needs shelters.

That shelter has a capacity of 764. During Hurricane Ian, it housed 354 people and 11 animals, said Betsy Clayton, director of the Lee County Office of Communications.

This raises questions about the extent of its use. Do communications and awareness of the availability of special-needs shelters need to be enhanced? Such shelters are promoted by agencies serving older residents, such as the Area Agency on Aging for Southwest Florida website, but is that sufficient?

One insight disaster officials and researchers have come to is that many people prefer to ride out a storm at home.

According to the Reuters news agency last year, many southwestern Floridians chose to stay at home rather than go elsewhere as Hurricane Ian approached.

“Some who had had their loved ones in a shelter had bad experiences of the person they were with being disoriented and upset,” Peterson said. “And others were just frightened by the thought of the person they care for being in this environment, that it is a shelter, but it’s chaotic. It’s noisy. There’s no privacy.”

Some caregivers worry their loved one would not be near a restroom, she said, or that they might wind up having to change clothes in the view of others. She cited the experiences of people in an assisted living facility who were evacuated during one storm at the last minute to a shelter.

“The people there didn’t know where they were, they didn’t know why they were there,” Peterson said. “They didn’t feel comfortable. Many of them were crying. And so this is an area of concern.”

Available water and electricity are key to make shelters thrive, she said, but her research also points to the need for accurate and timely natural disaster forecasts, a more robust public embrace well in advance of an emergency about how to sign up and where to go for help, and a better understanding of those who operate and serve at shelters about how “to create a sense of normalcy.”

Peterson cited supplying foods the person needing care likes, and in some cases making it possible to be sheltered with a pet. Perhaps more important, she suggested shelters follow the “comfort room” model seen at airports that offer “quiet, soft environments” for people with dementia and anxiety.

“Special needs is more related to a specific health care or medical need,” Peterson said, “not so much a mental health need or emotional health need. And that’s what I think is lacking.”Special needs shelters served as many as 9,600 people during Hurricane Katrina, but a 2006

report by the National Council on Disability

found many were unequipped or unwilling to help people with disabilities, sometimes separating families. Many didn’t have enough staff, beds or supplies, including oxygen tanks or wheelchairs. Some in need were unable to get to a shelter because they lacked accessible transportation.

“Despite the inaccessibility of many shelters to people with disabilities, other shelters succeeded and can be used as models for further success,” the report reads. “The operators of those shelters were not experienced emergency managers; rather, the key to their success was their attitude of inclusiveness.”

Grant Ashley is a reporter with The Buffalo News and Justice Marbury is a reporter with the Rochester Democrat and Chronicle.

This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The reporting is supported by the Solutions Journalism Network. Read related stories at nymisojo.com, where you also can find a detailed Caregiving Resource Guide with links to online information about various issues of interest to caregivers.