Published August 25th, 2020 at 6:00 AM
Twenty-six years old. Twenty-six surgeries.
That hasn’t quelled Shacara Pearson’s lust for life, though. Pearson, who has cerebral palsy, flashed a wide smile during a Zoom interview. She uses a wheelchair as a result of her disability.
“Growing up wasn’t the easiest, but I just love my life,” she said, then proceeded to list what she loves most.
Her favorite things to do are go to church, hang out with friends and learn professional skills at the library. But that’s all changed.
Pearson is one of the roughly 61 million adults in the U.S. living with a disability. They make up 26% of the population, according to the Centers for Disease Control and Prevention. In Kansas and Missouri combined, nearly 104,228 residents have a disability who are anywhere from 18 to 60 years old, according to the Social Security Administration’s most recent count of county data.
And for those who typically require assistance such as in-home health providers, nurses and other aids, the current public health crisis has presented additional complications. For instance, the COVID-19 pandemic added a few restrictions on what Pearson can do for leisure. Now, library staff bring her books to read. Instead of hanging out with friends indoors, she dons a mask to take walks outside of her apartment, which she recently moved into.
“I moved smack dab into someone else’s space,” Pearson said, but assuringly added that she and her roommate have adjusted well, considering.
She and her roommate maintain their six-foot distance from one another and do their best to respect each other’s space. While she acknowledged the difficulty, she never strayed far from positive affirmations.
Pearson explained she is in control of her day-to-day decisions. Her disability services coordinators provide assistance with meal preparation, medication and transportation to doctor appointments.
“I try to be as independent as possible,” she said, adding that she considers the care providers to be her friends. The best part, she added, is they let her advocate for herself.
When this all subsides, she dreams of becoming a public speaker. When asked what message she’d give to the world right now, Pearson said:
“Keep a smile on your face. You still have to be thankful for today.”
For service coordinators, no day is the same.
Coordinators like Kandice Walker typically have a caseload of nearly 40 people who have a range of different disabilities and are between the ages of 11 and 60 years old. Pre-pandemic, Walker would have been doing check-ins with about seven different folks per day. Over the past several months, Walker has seen first hand how the pandemic disrupted the lives of the people she helps at EITAS, a developmental disability service for Jackson County.
“There are so many ways that this (pandemic) is really affecting people,” Walker said. “I love my job very, very much. I tend to like when there’s a problem to solve. But it has been harder.”
Now that it’s been a few months of what she calls “the new normal,” she decided to share some of what she’s seen in homes and group homes around the county.
Back in March, one of her clients – who was going through chemotherapy and living in the hospital – had to move suddenly. The hospital (which she didn’t name) was poised for a spike in cases and had to empty beds for potential COVID-19 patients, forcing her client to scramble for a new place to live.
After chemotherapy, patients are typically considered immunocompromised. That put Walker’s client in a vulnerable place. Complicating things further, the client’s mother is a nurse contracted to care for COVID-19 patients, so she was unable to house her own daughter.
“The social worker and I looked everywhere for her and we had to find a place quickly and then figure out how to get her moved in there,” Walker said.
Other folks with behavioral issues are doing well for the most part, but they live in group homes, where spats break out. It’s natural when a lot of people are confined to one space but one client who has a developmental disability was unhappy.
“(They lack) a lot of coping mechanisms that you or I would have,” she said. “You can’t get away.”
As a result, her client engaged in self-injurious behavior, which sometimes looks like hitting oneself or biting.
Another example, she said, shines a light on individuals with cognitive disabilities who are unable to understand or verbalize their fears when they learn about the novel coronavirus.
One of Walker’s clients who has an intellectual disability kept watching TV news about the pandemic. The more she watched, the more she grew afraid of going outside her door because she thought the virus would bite her.
“Think about it, you know, somebody who can’t understand that,” she said.
So an agency worked with her and taught her how the virus looks. They even drew pictures of the virus. The workers explained safe activities and the ones that aren’t, such as large gatherings or public spaces such as stores.
Now she calls it the “store virus,” Walker said.
These are just a few examples of the struggles the disability community faces that are not as visible. Among the issues are staff members getting the virus and the complications that ensue, such as caring for clients while figuring out how to quarantine.
“It’s been very rough on the agencies,” Walker said.
Initially, she said it was scary.
“I thought people were going to die and I wouldn’t be able to help them or save them. It’s a little easier now,” she said.
These days, she conducts wellness checks on Zoom. But Walker is concerned about one other thing: funding. Many people that EITAS helps have no other source of income and rely on federal aid, which comes in the form of a waiver.
Jake Jacobs, EITAS executive director, confirmed that the organization was able to secure assistance for personal protective equipment for their staff from the state of Missouri for lost Medicaid revenue. But things are limited.
She’s learned that there’s a growing waitlist, so people who need services such as transportation or housing might need to wait. People like her client who’s mom couldn’t take her in.
“What’s going to happen to people? How are we going to help people without that funding?” she asked. “There are people out there without another option.”
“I don’t know that they really understand what people are faced with sometimes. They don’t know, if you don’t see it every day.”
Day in and day out, Janet Schaaf and her husband, Tom, seesaw responsibilities to care for their son with Angelman Syndrome.
Tom is a CT technologist and is exposed to COVID-19 during his 12-hour-long shifts at the hospital. The clothes he wears to the hospital go straight to the washer to be disinfected in hot water. Shoes are left in the garage.
Janet is a copy editor and writer who works from home, so she takes the day shifts. The most difficult part of the pandemic has been their son Erik’s inability to attend the day program she signed him up for pre-public health crisis. The program closed, reopened and closed again after a couple of staff reported exposure to the coronavirus.
“All of my plans flew out the window,” she said. “It’s just been a difficult situation.”
As a result of his disability, Erik struggles to sleep, has a low attention span and is on the lower end of development, Janet explained.
“We always joke and say he has a broken halo,” she chuckled. “He really is a happy guy.”
Erik, who is 23, no longer gets in-home therapy, such as occupational speech and physical therapy. Those services ended when he was 21 and graduated the school system. These days he gets in-home help for hygiene, meals and daily living. Although his main in-home care provider is still able to care for him, she says they opted out of extra help because of the risks posed by having strangers in the home.
Socially, he is struggling to understand why he can’t go to the library. And he will not wear a mask.
“He does not get it,” Janet said.
That’s why they don’t go out and decide to entertain at home.
This year was supposed to be a stepping stone for her family, one that prepares her and her husband for the time when they can no longer care for their son. The plan is to find a group home that she knows will take good care of Erik.
She’s painfully aware of that looming issue, especially these days with her own aging parents. At 50 years old, she didn’t imagine she’d be a caregiver for her 22-year-old son. So pandemic limbo is her time to plan.
“I know we are lucky,” Janet said, hopeful that they can put their son in the day program when things are safe again.
“Erik so, so wants to go back to school.”
Correction: In an earlier version of this article, we misspelled “Angelman Syndrome.” We also misidentified Tom Schaaf’s job title. He is a CT technologist, not a radiologist, and works 12-hour shifts, not 15-hour shifts. Last, we have updated the services Erik Schaaf receives for his disability.