Some cities are starting to update their emergency response systems to include the half million Americans who rely on tubes for nutrition. In the face of the climate crisis, the change is urgently needed.
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Some cities are starting to update their emergency response systems to include the half million Americans who rely on tubes for nutrition. In the face of the climate crisis, the change is urgently needed.
October 11, 2022
After Hurricane María struck Puerto Rico in 2017, a woman cares for her 97-year-old mother, who uses a feeding tube to eat and sleeps in a room with no air conditioner. (Photo by Joe Raedle/Getty Images)
Kendra Kline’s five-year-old son, John Henry, has relied on a feeding tube his entire life. “He has never eaten food by mouth,” she says. Born at just 26 weeks, he needed home oxygen supplies in infancy. His parents worried about what to do in a power loss or other emergency without guidance from his medical team or local safety officials in Athens, Georgia. “Our planning,” she said, “was to go to the hospital.” In an odd twist, during Hurricane Irma in 2017 when “we . . . lost power for more than a day, he was already hospitalized [with respiratory failure]. He was already in the best place he could be.”
That was a fortunate outcome, but Kline says it’s “very terrifying” to plan for emergencies with limited support. And she’s far from alone in that predicament. An estimated half million Americans rely on feeding tubes to survive, and while the process of allocating food from stockpiles and donations can be a significant lifeline for many people who don’t eat by mouth—and their families—they are often left to their own devices in planning for and responding to natural disasters. They will likely struggle with these challenges more often as climate change intensifies and wildfires, hurricanes, floods, and “once-in-a-lifetime” events increase in frequency.
The two ways these folks receive nutrition are parenteral, which is delivered intravenously, and enteral, which involves using a tube surgically inserted or manually placed to deliver nutrition directly to the digestive tract, bypassing the mouth and esophagus. These can include nasogastric tubes (inserted via the nose), as well as gastric tubes (G-tubes), which are placed through the abdominal wall, anchored, and accessed through a small “button.” Depending on the specifics of someone’s needs, they may take some or all their nutrition through these feeding tubes in the form of specialty formula and/or blended foods.
Take Leyla Powis, a 26-year-old small business owner from South Yorkshire, for instance. Powis has difficulty swallowing because of her hypermobile Ehlers-Danlos syndrome, and can eat some food by mouth but says it’s “not enough to keep myself alive and healthy.” Powis has also perfected the art of traveling with her feeding supplies, a useful skill in emergencies.
While feeding tubes can require a significant adjustment, some experience the shift as liberating. “When I got my first feeding tube it made my life so much better,” said Powis. “I’d been slowly starving for a year–I had no energy, I could barely get out of bed, I couldn’t think clearly, and I’d given up on even trying to eat because it made me feel so bad. The difference when I started getting enough nutrition was huge. It gave me my life back,” she says.
People may need enteral or parenteral nutrition for any number of reasons, including difficulty swallowing, which makes it hard to eat safely, recovery from illness, and treatment of eating disorders. But this form of eating isn’t as simple as pouring some Ensure down a funnel. They need formulas and blended foods that meet their nutritional needs without making them ill, and many develop loyalty to specific brands and formulations that they know are effective.
“If you told me I had to switch formulas tomorrow, I’d honestly be terrified of how my body would react, not least because a lack of tolerance can range from mild discomfort to actual physical illness and distress,” said Kayla Whaley, a writer from Georgia who has spinal muscular atrophy, a progressive genetic disease that affects her motor neurons. People with this condition experience progressive muscle weakness that can lead to difficulty swallowing. (Whaley wrote about her experience in a 2018 essay in Catapult.)
Relying on enteral feeding also requires supplies, including bags and connection sets, while some people use pumps to slowly deliver nutrition over the course of hours. And that formula has to be a comfortable, i.e., warm, temperature. During a recent power outage, Whaley was forced to use cold formula with her G-tube, saying “I was already so cold and that just froze me from the inside out. It was nauseating.”
Disability-related feeding challenges during emergencies don’t stop with enteral and parenteral feeding. Some people, for example, experience dysphagia—difficulty swallowing—which can make some types and textures of food dangerous to eat. Some autistic people are very sensitive to texture, flavor, and taste, which may limit foods they can eat comfortably. While allergies are commonly understood, food sensitivities may make it challenging or impossible to eat an assortment of foods without pain or illness, and some of those sensitivities may be surprising—someone who can’t eat raw greens or vegetables, for example, may be viewed with skepticism.
All of these issues can pose difficulties at a disaster relief shelter or with community pickups and deliveries designed to help people access food during and after disasters. And with disasters on the rise due to climate change, a growing number of city emergency preparedness agencies are starting to incorporate the needs of disabled people in their planning efforts.
This issue falls under the larger umbrella of adequate and appropriate planning for the disability community, which Sarah Lana, emergency services coordinator for the city of Berkeley, California, describes as “underserved.” Some disabled people are electricity-dependent, for example, relying on electricity to power wheelchairs, ventilators, pumps, and other equipment. In the case of sustained power loss, they can be at significant personal risk. Some people may also have mobility disabilities that interfere with evacuation or make it hard to find a safe place to shelter. Others rely on medications that can’t be disrupted, or interventions such as tracheostomies, which require ongoing care—and sanitation when they need to change, maintain, or service the devices that keep them alive.
Lana acknowledges the challenges of balancing the needs of disabled residents with the needs of others in the community. Disabled people say they feel the burden of planning is falling on them as individuals instead of on the systems that might support them. For example, emergency planners tell disabled members of the public that they should have a stockpile of shelf-stable medical supplies, including formula if necessary, for emergencies.
Planning isn’t always as simple as tossing a few extras into a go bag, however. Formula, when covered by insurance, is doled out in very small quantities; insurance companies will not cover an extra two weeks of supply for disaster planning, for example. The high-profile baby formula shortage in 2022 also made it harder to locate and store other types of formula.
“We literally can’t [stockpile],” said Kendra Kline. “You can’t buy this formula at the store, and only so much is covered. Since the recalls, we’ve been living week to week trying to find formula.”
In addition, Stacy Staggs noted that while historically her insurance would send full cases, leaving her with some extra to store, that changed with shortages and has not shifted back as the supply chain has begun to stabilize.
Staggs, the Director of Community Engagement at Little Lobbyists, an advocacy group for disabled children and families, was told that in an emergency she should go to a hospital with her child, even though a hospital might be closed, overloaded with patients, or stressed by infectious diseases that would make it dangerous to bring her daughter there for help. That’s if the hospital has what she needs at all: “If the [G-tube] button comes out, we’re supposed to hope the hospital has a supply. It’s not just what she eats but how she eats that is at risk.”
The stakes of failing to plan for disabled people in evacuations and sheltering are high, especially when it comes to basic needs like eating. Germán Parodi, co-director of the Partnership for Inclusive Disaster Strategies, explains that emergencies can trigger an 1135 blanket waiver, which is designed to streamline service delivery. But it also can lead to situations where people are hospitalized because community shelters cannot meet their needs, and then placed in a long-term care facility because the hospital cannot accommodate them. “After a disaster,” he said, “lose community services, and you’re in a nursing home.”
Some disabled people and caregivers, such as Staggs, report some success with turning to social media for help. A lively trade exists as people give and swap supplies; one child who no longer needs her trach, for example, may donate her supplies to parents who need them. Another who uses a different size feeding bag might offer up a box of old ones on social media. If someone stops tolerating a given formula, they might trade it with someone else. Others post pleas on social media sites. These kinds of informal networks are common in the disability community, where some feel abandoned by the larger community as well as the medical establishment. But they aren’t sufficient or ideal for emergency planning, especially in the midst of a crisis.
A growing number of disaster planners are considering disability in their work. Maria Town, formerly of the Houston Mayor’s Office of People with Disabilities, played a key role in the city’s Hurricane Harvey response and reforms to the its emergency response, an issue that happened to be personal for her as a member of the disability community. Other cities, including New York and San Francisco, have versions of the Mayor’s Office of People with Disabilities that similarly assist with emergency planning and response, and agencies like FEMA are expanding their disability guidance.
Berkeley’s efforts highlight how smaller cities are integrating lessons from larger ones, and from disaster response overall, into their disability strategy. “We have three people [in our department],” said Lana. “We recognize community-based organizations as force multipliers . . . In disaster preparation, they help us be connected and a partner to our community.” Local initiatives there, such as the BEACON Program and Community Resilience Centers, cultivate strong connections with community organizations that reach underserved populations.
During an extended planned electricity shutoff coordinated by California utility company PG&E in 2019, for example, they worked with a mobile wheelchair maintenance company, Easy Does It, to identify customers in affected areas who use power chairs, reaching out to them to ensure they didn’t get stranded in their homes.
“We want to meet [the community’s] needs through experts on their own situations,” said Lana. At the same time, they encourage residents to plan as much as they are able, with help from those same organizations.
The city also works with state Functional Assessment Service Teams, which send representatives into shelters to better understand and serve people’s needs at the point of service delivery, rather than trying to broadly predict what people might need. That might include noting that someone needs formula and feeding tube supplies and delivering them from the state’s stockpile or another source. These teams are available for disasters across the state and the same model is used all over the country.
State officials, meanwhile, need to make calculated decisions about maintaining and deploying emergency supplies, with an eye to issues such as expiration dates and storage requirements. In the case of formulas, it would be nearly impossible to stock every single possible formula that people in an unknown population might need; instead, the state must rely on a selection of options that serve the greatest need, and a collective of neighborhood organizations who specifically know the needs of their residents.
Parodi noted that things such as oxygen and feeding tube supplies are not necessarily required in state and national stockpiles, which is another issue: Without the supplies they need, people may not be able to access nutrition. And stockpiling alone isn’t enough; those stockpiles also need to be maintained. While responding to Hurricane Maria in Puerto Rico in 2017, for example, he identified rusty, dented cans being provided on flats from FEMA.
Parodi said this isn’t just a state or personal problem. “There needs to be emergency planning for continuity of provision,” he says, noting that insurance companies bear responsibility as well in making sure their customers’ needs are met. This includes creating a framework for storing relief supplies as well as a method for rapidly delivering replacement prescriptions and supplies after a disaster, as for instance in 2018 when Paradise Fire survivors could replace lost prescriptions at no cost if they had accounts with chain pharmacies, thanks to the state’s activation of the Emergency Prescription Assistance Program.
In the wake of 2022’s hurricanes, fires, and floods,—and with other catastrophes in our collective future—the inclusion of disability in disaster planning is, overall, on the rise. People like Kayla Whaley and Stacy Staggs’ daughter hope planners will remember to pack them a lunchbox.
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