Adapt and survive

10 simple steps to prepare for a disaster with a disabled kid

“There's very little research on the topic. The disabled population needs to be considered and taken into this conversation around climate change and climate change risks.” — Aleksandra Kosanic [1]

Over the course of the hour my mother and I spent talking to her oncologist about her options, the white walls of the small medical office had been getting closer and closer together.

Or, at least that’s how it felt.

There was so much to think about, there just didn’t seem to be enough space for it. There were options for chemotherapy and options for surgery. There were Latin words and made-up pharmaceutical words. There were questions with answers and questions without answers.

Eventually, my mom stared down at her hands. I think the doctor and I could both tell that she was no longer processing the conversation. 

“OK,” I said, gearing up for my final question: “So what happens if none of that works? What does that look like?”

“Well, the body cavity fills with tumors and organs shut down,” the oncologist said. “At the end, it looks like a lot of medical emergencies that happen closer and closer together.”

That is what happened. After a year and a half of increasingly serious and frequent medical emergencies, my mom died.

I tell you this because I see that pattern happening to our planet now, too.

Fifteen years ago, I was a cub reporter on the Oregon coast and attended several talks by environmental scientists about sea level rise. As now, they said they couldn’t predict exactly what climate change would look like. But they said that generally it would mean stronger and more frequent storms, droughts and infectious diseases. 

Over the course of the last year, in a suburb of a major American city, my family has weathered nine days of extremely hazardous air quality from unprecedented forest fires, seven days without power from a historic ice storm, and three days of wildly unusual high temperatures.

All this while hiding from a global viral pandemic.

As may be obvious to some, disabled people are especially vulnerable to the effects of climate change. Think about the phrases used to dismiss COVID-19 fatalities: “pre-existing condition,” “underlying health condition,” etc. What fancy ways of saying disabled.

The majority of emergency planning neglects to account for the needs of disabled people, such as mobility equipment access or life-or-death needs for electricity. This is according to Nobody Left Behind, a research project started after disabled people died stranded in the Twin Towers on 9/11.

“People with disabilities have had high rates of illness, injuries, or death from these types of events,” echoes an Environmental Protection Agency fact sheet on climate change and people with disabilities. “For example, almost half of deaths from Hurricane Katrina were people over age 75 (even though they only represented less than 6% of the population in the area), with over 10% of total deaths occurring in nursing homes. Most of those individuals had medical conditions and disabilities that made them vulnerable.”

There is a lot of information out there about disaster preparedness. This list was the best I found in my research. Also, if you live in my state, here is Oregon’s disaster toolkit for disabled people. It’s 154 pages….

I know. I’m busy and overwhelmed. You are busy and overwhelmed. So, if you want to dive into the above links, please do, but in the meantime, here are 10 simple things you can do to tweak your current routines to be more prepared when disaster strikes. 

  1. Sign up for your local public alerts system. This is probably something your county manages, such as through an emergency management department. Google it.

  2. Schedule an hour sometime in the next week to pack up a go-bag. No one can plan for every emergency in one hour but the time limit could help keep it from feeling like an overwhelming task. Some planning is better than no planning.

  3. Think about and pack the sort of comfort items your child may need — headphones, a small pop-up tent, candy — to soften the strangeness of a disaster or incentivize compliance in an emergency.

  4. For those who can, try to keep a shelf of staples (rice, beans, flour, cornmeal, sugar, peanut butter, vinegar, oil, salt, canned goods, nutrition bars) separate from your kitchen food. “Shop” from that shelf and restock from the real grocery store when the shelf supply gets low. That way you always have a rotated source of emergency food. Don’t forget to store water! At least three gallons per person and some for pets.

  5. Always get prescriptions refilled as soon as possible. Ask doctors to prescribe emergency supplies of any critical medicines. 

  6. Practice with your kids. All children (and adults) need practice to keep their cool during an emergency. Depending on the disability, your child may need extra practice to know how to evacuate, to listen to first responder instructions, or to repeat memorized phrases, such as: “I have mental disability. Please help me find a quiet place. I will be OK.” 

  7. Talk with your child’s school, daycare facility or other places to make sure they are including your child in evacuation plans. Is your child being left in the building during fire drills? Is there a place for them to hide during shooter drills? 

  8. If you have a case manager, ask them if there are programs to pay for emergency supplies, such as a generator, an air filter or an air conditioner. Ask equipment suppliers how long equipment batteries last without power. 

  9. Think about your unofficial support community (friends, family, religious community) and start having conversations with them now. Who could you ask for help? Is there a house you could stay at? Who could provide transportation?

  10. Acknowledge the trauma. Planning for and imagining all the terrible things that could happen — especially if you’ve already seen your child or another loved one close to death — is hard. Really hard. Give yourself grace, dedicated time and space, and a healthy reward for getting through it.

There are many, many more ways to, as the Girl Scouts say, “be prepared.” But hopefully this gives you a starting point and information specific to your needs as person raising disabled children. Hopefully you won’t need it soon.

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What I’m reading this week

A round-up of news for parents of disabled children.

• From The New York Times: 8-Year-Olds in Despair: The Mental Health Crisis Is Getting Younger

Kate, who lives in Colorado, was in the third grade when she told her parents that she didn’t want to live anymore. For much of her childhood, she has suffered from sensory processing disorder, attention deficit hyperactivity disorder and anxiety, and she was bullied in elementary school.

“I felt like I was just a waste of space,” Kate, who is now 12, said in an interview. “I was in so much pain.”

Back when she was 8, her parents took her to the emergency room, where they stayed for about 12 hours until it was determined that Kate would be safe at home.

“You just feel like, gosh, what have I done wrong as a parent? How am I not supporting my kid?” said Hope, Kate’s mother.

“Don’t feel shame,” she advised other parents. Instead, take a deep breath and call the pediatrician or a crisis line, Hope said, “so that you don’t feel alone.”

• From The Oregonian: Oregon hospitals struggle to deal with jammed emergency rooms after exodus of nurses

It’s a recipe for disaster that is unfolding at hospitals across the country: Blend emotionally exhausted caregivers with emotionally disturbed patients, throw in a wave of street violence and the departure of some of the most experienced workers on the wards due to fatigue and burnout, and voila, America has its latest health care crisis.

Many employees argue there is another key ingredient added by the hospitals that makes the end result particularly toxic: A penny-pinching mentality that allows the understaffing to develop in the first place.

• From The Lund Report: Most Oregon Hospitals Didn’t Need 2020 Bailout: They Had The Stock Market

In fact, even without the CARES Act money, many Oregon hospital systems would have reported profits for 2020, thanks mostly to their big investment returns, the reports show. Some systems, such as PeaceHealth, Salem Health and Asante, have reported huge profits for the latter part of 2020, as patient revenues recovered and outsized investment returns kicked in.

Critics have suggested wealthy hospital systems didn’t need the CARES Act money because they already had rich investment portfolios as a backstop. In a remarkable move last year, the massive California-based Kaiser Permanente hospital system handed back $500 million in CARES Act money to the federal government. Non-profit Kaiser, with 2020 investment gains of over $4 billion, said it would do fine without the taxpayer cash.

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