Kylie Thompson has quadriplegia and has never allowed it to define her life, which is becoming more difficult during COVID-19.

The 31-year-old Tempe resident lives independently, attended Arizona State University, uses public transportation, and supports herself with a full-time job.

Like many Arizonans with chronic illnesses and disabilities, Thompson would be at high risk for having complications, including hospitalization and death, if she contracted SARS-CoV-2, the virus that causes COVID-19.

While the general public has had to get accustomed to wearing masks and adjust to limiting social activities, high-risk Arizonans like Thompson must take greater precautions.

“For me, getting any sort of exposure to this is terrifying because it could — it probably would — kill me,” Thompson said. “Even if I wanted to go somewhere, I can’t. I’m not willing to risk taking public transportation.”

Some families who have a loved one with chronic health needs are foregoing essential home health care, including specialized nursing services, over the fear of infection.

Not only are people with certain disabilities and chronic conditions more susceptible to getting severely ill from COVID-19, many argue that they also face discrimination in the health care system.

Two Arizonans and several advocacy groups recently filed a federal complaint that argues the state’s crisis standards, allowed because of COVID-19, discriminate against older Arizonans, people of color and those with disabilities.

The crisis standards guide the allocation of scarce resources to patients based on factors such as their likelihood for survival.

No transportation during COVID

Most people will not get seriously ill from COVID-19 — about 80% of people who become infected won’t need medical intervention and some won’t show any symptoms at all, research indicates.

Younger people are far less likely to get sick and die from COVID-19 than people who are older than 65. But those rules do not apply to individuals considered high-risk because of certain chronic health conditions.

Before COVID-19, Thompson made a point of telling people not to feel sorry for her. She hates pity. She hates asking for things.

So it was with a great deal of reluctance that Thompson in mid-May began an online campaign through the national non-profit Help Hope Live to purchase a modified, wheelchair-accessible van with hand controls so that she would be able to drive herself to and from work and other essential trips like medical appointments. She so far has raised $4,205 of her $50,000 goal.

“I never want to use my disability to guilt people into helping me,” said Thompson, whose efforts to get medical insurance and government programs to help with the cost went nowhere.

“I’m asking now because this van will literally change my life. I could see more of my city and state, move up at work, drive myself to physical therapy,” she said. “Not being able to have any kind of safe transportation is debilitating and scary. Transportation is a luxury that’s so easy to take for granted.”

She’s working from home now, but Thompson foresees a time when she’ll go back to her job on the merchandising team at the Tempe offices of the online used car dealer Carvana.

Thompson doesn’t intend to go back to using the public bus she took, nor will she feel comfortable using rideshare services until, “well, after there is a vaccine,” she said.

‘We get forgotten about’

COVID-19 means Glendale resident Rachael Robinson spends all of her waking hours as a caregiver for her seven-year-old grandson, Bentley Rana, who has multiple health problems, including severe cerebral palsy.

Since March 7, Robinson, 51, and her 19-year-old son, Zachary have taken on the full share of caring for Bentley. Robinson’s husband Glen, 53, helps too, though he’s working full-time in construction.

One positive for the family: Zachary was already certified as a direct care worker for Bentley. But Zachary is not trained to respond if Bentley has a seizure or a sudden drop in oxygen and Robinson is not comfortable having Bentley’s regular nurse come into her home.

“I’m not without help but I’m without my nursing services. And nursing services are a big part of Bentley’s life because he is a critical-care patient,” Robinson said.

Before the pandemic, the nurse provided specialized care to Bentley for 40 hours a week, and often did overnight shifts. He also received about 14 hours per week of regular respite nursing care.

Bentley is enrolled in the Arizona Department of Economic Security’s Division for Developmental Disabilities and in the Arizona Long Term Care System.

“So it’s like 54 hours per week we’d be able to service out,” Robinson said. “It’s a significant loss.”

Now it seems too risky, said Robinson, who adopted Bentley after her daughter died at the age of 23. When she adopted Bentley, Robinson also gave up her job as a hair stylist.

“This is very hard for a lot of families like ours. We are not the only family that has decided to take on the extra work and eliminate outside care,”  Robinson said.

“We’re just trying to do the best for Bentley and our whole family,” she said. “Families like ours, I just sometimes think that we get forgotten about.”

Bentley misses interactions with people outside his family, his grandmother said.

“His quality of life is deteriorating because he’s stuck inside. … My little guy needs to be able to move out in the world,” Robinson said. “A huge part of his life is going to the library and going to the grocery store and going to the mall and just looking around at how people interact and how things sound.”

She did include a caveat. In a recent and positive development through the state, Bentley has been able to do speech, physical and occupational therapy online and his grandmother said he responds extremely well to seeing his direct care wokers via technology. He loves seeing them, she said.

Bentley was born with difficulties related to congenital cytomegalovirus infection, which is a condition related to a virus his mother contracted while she was pregnant.

He is partially hearing impaired, legally blind and can’t walk. A seizure disorder means he has seizures from one to 200 times a week. He’s fed by a tube and communicates with an eye gaze device, Robinson said.

“He is a very sweet little boy. His favorite things are actually people,” Robinson said.

“Grandpa can do anything and Bentley will start laughing, he’ll light up … He motivates him so much. Zachary, his uncle, can bring in a helicopter toy and the two of them can just play for 20 to 30 minutes and have a great time.”

Mocked at the grocery store

Robinson said Bentley’s nurse is someone who has cared for him for nearly three years and has become a close family friend.

It was a tough decision to cancel her services.

But it’s difficult enough with Glen working in construction outside the home. Glen “goes through the wringer” every day when he comes home, carefully decontaminating by taking off his clothes and showering before he touches or sees anyone, Robinson said.

Bentley has gone through some medical difficulties during the pandemic, though he has not contracted the virus. He had a bout with pneumonia that required external oxygen to help him breathe.

“This is without him having coronavirus. He probably had a cold and it went into his lungs and he’s having a hard time,” Robinson said. “Our family is always super-careful and having even a small chance of elevating Bentley’s chance of getting coronavirus scares the devil out of me.”

Last month Bentley began pediatric hospice care, not because he is actively dying, his grandmother said, but because she does not want her grandson’s frail body to endure aggressive medical treatments. 

A pediatric hospice nurse visits the home now once every two weeks. But that’s as much outside help as Robinson is comfortable with coming in the home.

Zachary helps Bentley shower every night and does a lot of his stretching and massaging every day. Bentley wears bells on his arms 24/7 to alert his family when he has a seizure, and he wears a pulse oximeter that measures his oxygen saturation and heart rate.

“Some nights I may get up six times because he has six different seizures or the oxygen alarm will go off,” she said. “You do the best that you can. … With nursing help I was able to check out for six or eight hours and go to sleep.”

Robinson’s daughter, Tiffany Rana, died nearly three years ago.

“We lost our daughter, Zachary lost his sister, Bentley lost his mother to the heroin epidemic,” Robinson said. “You rely on so many people when society is falling to an epidemic. Now we have a pandemic and we’re relying on the world to behave rationally and thoughtfully of others.”

Before masks were required in Glendale and much of Arizona in June, Robinson became extremely nervous when she saw people who weren’t wearing them. In May, someone in a grocery store called Glen a “sheeple” for wearing a mask, she said.

“Until we all get a handle on where all this is going, people like Bentley and their families can’t really move about. … There are a lot of us, a lot of people depending on the goodness of everybody else,” she said.

“You are not wearing the mask for yourself. You are wearing it for someone else, just in case you are in that two-week incubation period. It’s just in case.”

Robinson and her family want to get back to normal life as badly as anyone else, she emphasized.

“We miss being normal. We miss our helpers … We are not super-high-maintenance so it’s not like we’re missing vacations or stuff like that, she said.

“But it is critical for all families of someone as special as Bentley to step away and do it guilt-free and know their person is taken care of and I don’t know when I’m going to be able to do that again.”

‘It’s the isolation part — you feel very trapped.”

Thompson has been unable to walk or fully use her arms since she was involved in a car accident in Kingman in 2006 when she was 16. A semi-trailer truck ran the car she was driving off the road, killing her 6-year-old stepsister and injuring Thompson, her brother, her father and her stepmother.

The impact of the crash severed Thompson’s C7 vetebra.

“It was a complete sever so there was no way of it recovering or healing,” she said.

Thompson has had numerous medical problems since her injury, including skin breakdowns, bladder surgeries, reconstructive surgeries on her neck, and complications from a tracheostomy that left her with a tear in her esophagus that resulted in a half dozen surgeries over an eight-year period before it got fixed.

Taking public transportation wasn’t always easy for Thompson because people with spinal-cord injuries have problems with regulating their body temperature. If the wheelchair ramp on a public bus didn’t deploy, she’d have to wait for the next one, and if it was summer in Arizona, that was a problem.

On more than one occasion she ended up in the hospital for being overheated while waiting for the bus. There’s no way she’s going to risk that now, not with the persistent threat of COVID-19, particularly when it’s widespread in Arizona.

If Thompson needs to cough, she has to thrust herself forward to push air up. After a while it gets exhausting. Since she can’t move around a lot when she’s sleeping she has to sleep upright when she has a cough, so that fluids don’t go into her lungs.

“I don’t have very strong lungs, and that’s what the virus attacks,” she said. “If I get short of breath, I really get short of breath.”

Other than taking her dog outside in areas where there are no other people, Thompson is staying indoors.

Her attempts at going grocery shopping and doing other errands ended early on in the pandemic because she did not see enough people wearing masks and taking social distancing precautions.

Remaining inside is an act of self-preservation that she views as necessary, though it’s also really frustrating.

Her time at ASU opened up a new world, when she met a group of friends she’d love to see in person again.

“It makes me go a little stir crazy,” Thompson said. “It’s the isolation part — you feel very trapped.”

Reach health care reporter Stephanie Innes at [email protected] or at 602-444-8369. Follow her on Twitter @stephanieinnes

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