For Daisy Lopez of Oakland, preparing her five-year-old daughter, Ximena, for a day out is no easy feat.
On a recent morning, ahead of an all-day, outdoor birthday party at her mother’s house in San Lorenzo, Lopez checked the weather for the day – temperatures in the 70s to 80s. She laid out a lace party dress, a custom cooling vest decorated with unicorns, a long-sleeve shirt and black leggings for the evening, and matching pink sweatpants and sweatshirt for the cooler nighttime temperatures. Lopez also packed the refrigerated formula and medications that Ximena needs to manage her various health conditions.
“I have to pack for three seasons in one bag,” said Lopez. “We have to be prepared for all sorts of weather in one day.”
Ximena, who has cerebral palsy, diabetes insipidus, epilepsy and dysautonomia, among other conditions, is particularly sensitive to heat and cold because she cannot sweat to regulate her body temperature.
Lopez manages this by adding or removing layers of clothing depending on her body temperature and the weather. That means Lopez must plan ahead anytime Ximena goes out. With the weather becoming hotter and more unpredictable as a result of climate change, Lopez said keeping her daughter’s body temperature in check is increasingly challenging.
After a morning bath, Daisy Lopez carefully studies the day’s weather forecast before dressing her daughter Ximena (4) and wraps her in a blanket to keep her warm until it’s time to go to school. Ximena, suffers from cerebral palsy, diabetes insipidus, epilepsy and dysautonomia, among other conditions, and is particularly sensitive to heat and cold because she’s unable to sweat to regulate her body temperature.
Climate change is a growing threat to people like Ximena, who live with disabilities. Not only is the weather getting hotter, but Californians are facing more frequent wildfires, poor air quality, evacuations and power outages.
These events are particularly difficult to navigate for people with complex medical conditions, as well as those who care for them. Yet, researchers and policymakers have historically overlooked this vulnerable population when it comes to emergency planning, said Alex Ghenis, former research and policy analyst with World Institute of Disability, during a podcast last year.
But that’s beginning to change. In the aftermath of major climate disasters, cities in California and beyond are recognizing that people with disabilities and complex medical needs are at risk of being left behind. Public officials are beginning to include the disability community in disaster planning, said Ghenis. Inclusion is one of the simplest and most effective strategies for improving how to respond to the needs of people with disabilities in times of natural disasters, he said.
It’s not just environmental disasters like wildfires that leave children with disabilities vulnerable. The uptick in hotter days and controlled power outages leave California families with medically vulnerable children susceptible to the daily volatility of climate change, even when they’re not faced with a cataclysmic event.
Experts interviewed by the California Health Report said building resilience in the face of climate change for families with children with medical complexities requires changes to local, state, and federal policies to strengthen emergency response infrastructure, such as ensuring accessible hotel rooms are available for disabled evacuees and providing families with emergency generators or other power sources. Families themselves must also prepare safety plans for times of disaster and day-to-day weather extremes.
Out of power
A power outage can be a life-or-death situation for families caring for children and adults with complex medical needs.
“When people lose power, people with disabilities get stuck,” said Stuart James, director of the Center for Independent Living in Berkeley, a Bay Area-based nonprofit organization that advocates for people living with disabilities and connects them to services.
James pointed out that many people living with disabilities rely on electricity to keep medications cold, operate breathing machines, and power wheelchairs, harness systems, and specialty beds necessary for mobility.
“When those go down, you’re down,” James said. “It’s not good if [power is] out for hours, and it’s really bad if [it’s] out for days.”
Hot, dry weather and powerful winds caused California utility company PG&E to turn off power to millions of customers in October and November 2019. These “public safety power shutoffs,” which utility companies continue to deploy, are intended to prevent wildfires. But they can also leave medically vulnerable residents, including those with disabilities, in a precarious situation.
James recalled a flood of families in Berkeley and Oakland calling the center during the 2019 outages, some experiencing life-threatening emergencies because they lacked electricity.
“It’s not good when you’re talking to someone on the phone who is desperate, and the only solution you have is: you’re probably going to have to go to the emergency room because there’s no place else for you to go,” James said.
The California Public Utilities Commission (CPUC) has since raised concerns about how utility companies handle these power outages, including whether vulnerable residents receive adequate advanced notification and assistance obtaining backup power. Additional questions have come up about whether electricity providers are doing enough to inform emergency responders about impending outages .
After the 2019 shutoffs, for example, CPUC criticized PG&E for withholding information from counties about residents enrolled in the company’s medical baseline program, which provides discounts on utility services to customers who depend on power for certain medical needs.
While not an official emergency response list, it’s a reliable indicator of who is particularly vulnerable during outages. Without that information, counties struggle to identify where people who require electricity for lifesaving devices are located, hindering local emergency response, according to the commission.
CPUC continues to press PG&E and other California utility providers on how they plan to mitigate risk to medically vulnerable residents during public safety power shutoffs. In an August letter, the commission’s president, Marybel Batjer, asked the state’s utility companies to project the number of public safety shutoffs anticipated in 2021. The letter also requested an update on the number of medically vulnerable residents served by each company and risk models that account for climate change. She also asked for information on company programs to provide back-up batteries to customers dependent on powered medical equipment.
“What is the total number of batteries that will be deployed and the timeline to achieve full deployment of the batteries?” she wrote. “Please explain in detail how you educate the customers on operating the batteries and how your company services or replaces batteries that are not working. What is the size and duration of each battery?”
The CPUC posted responses from each utility company on its website earlier this week.
PG&E offers rebates on battery-operated generators to customers in the medical baseline program who live in an eligible fire zone. However, James said this program is imperfect because it relies on families obtaining the batteries and generators themselves, and these don’t last very long before needing a charge.
Richard Skaff, executive director of Designing Accessible Communities, a Bay Area-based organization that aims to promote accessible products and design, said high-quality generators are expensive, making it difficult for many families caring for people with disabilities to afford them.
A more effective solution, said James, would be for utility companies to directly provide vulnerable families with high-powered, clean battery storage systems.
For Ximena, access to power is essential. Refrigeration keeps her medications cold, air conditioning keeps temperatures at home cool and stable, and power runs her gastrostomy tube and respiratory treatments.
To date Ximena’s family, hasn’t had to deal with a power outage, but Lopez worries about what she’d do if one occurred, particularly given the hot temperatures this summer. If the electricity goes out, Lopez said, she will have to pack up Ximena’s things and go to the home of a family member who has power.
“As of right now, I don’t have a plan. Hopefully the power doesn’t also go out in San Lorenzo or San Leandro or Emeryville, or other places where I have family that I can go to,” said Lopez. She said power companies and public health officials need to give medically vulnerable families as much advanced notice as possible so they can plan for rolling blackouts.
The challenge of planning ahead
Keep the car fueled up. Get a backup supply of medications. Keep a go-bag full of emergency supplies by the door. Have an exit strategy. Buy a generator.
These are some of the emergency planning tips healthcare experts and advocates recommended for families caring for children with disabilities. But many acknowledged these families often struggle to plan ahead because their day-to-day reality is already so challenging and unpredictable.
Ximena and Daisy leave home to go for a walk around Lake Merritt in Oakland. Daisy prefers to wait until later in the day to go out with Ximena as the temperature is typically cooler making it easier to keep Ximena comfortable by adding or removing layers. Ximena enjoys riding in the car because the air conditioning can closely control the ambient temperature.
Families caring for children with special healthcare needs tend to face high medical and caregiving costs, which makes them more likely to live in poverty. It’s challenging to get families thinking about climate change preparations when they’re already worried about how to buy food and medications, and pay for rent and utilities, said Kausha King, operations director of Family Resource Navigators.
Family Resource Navigators, an organization in San Leandro where Lopez works, aims to make it easier for families to get help caring for their children with medical complexities. This includes providing assistance with emergency planning. King said the organization provides an emergency preparedness checklist, and she advises families to keep an emergency backpack by the door that includes medications, personal protective equipment for COVID-19, spare batteries, and more. Family Resource Navigators distributes some supplies about once a month that familes can use for emergencies, but each household has individual needs they must prepare for, King said.
As the mother of an adult son who is very medically complex, King said she herself has struggled to get backup medications in the past due to insurance restrictions. She was personally able to solve this by taking advantage of an option to request a month’s worth of medication in advance when her son transitioned from pediatric to adult care. But, she acknowledged, this solution won’t work for all families.
“I think this is something we really need to push the healthcare system on figuring out,” King said.
Another challenge is that some families don’t take the threat of climate change and natural disasters seriously and, therefore, don’t prepare, she added.
“[They] are just like, ‘Oh, you know, it’ll be fine. These things will never happen to me,’” she said. But “the way things are going in the world right now, we don’t know.”
Back in Oakland, Lopez said she has been trying to create an emergency plan and kit for her family, but it’s been a struggle. Before the pandemic, she worked with a nurse to get backup medications for Ximena. But during the COVID-19 crisis, she ended up having to use those supplies when access to her regular medications was disrupted.
For now, Lopez said she’s focusing on the day-to-day complexities of caring for her daughter and keeping her body temperature in check, no matter what the weather — and climate change — brings.
Ximena and Daisy walk around Lake Merritt in the late afternoon.
This story was produced in partnership with the California Health Report.