Few Iowans could be more thrilled to resume a normal activity than Kyle Stumpf was to return to work at a Dubuque pizza joint in early June. And few Iowans could be more nervous than Stumpf’s family was to see him step back out in public as the coronavirus continues to circulate.
Stumpf, 30, who has disabilities, is one of tens of thousands of Iowans who have medical conditions that make them particularly susceptible to the virus and to COVID-19, the disease it causes. Many of them have been locked down even tighter than the general public since March, when the virus began to surge and people were urged to stay home.
Some families have taken relatives with disabilities out of group settings and are keeping them at home, without the help of outside aides, to try to prevent infection.
Now, Iowans with disabilities and their families must decide whether to risk tiptoeing back into normal life. Is it worth facing the chance of catching the life-threatening virus?
For Kyle Stumpf’s family, the answer was a tentative yes.
Stumpf, who has Down syndrome, woke up at 6 a.m. on June 8, eager to start a 10 a.m. shift at Papa John’s Pizza. He doesn’t speak much, but he put on his Papa John’s hat, showing he was excited to start folding pizza boxes and setting up the store for a new business day.
“He’s elated. He just loves that job,” said his father, Bill Stumpf. The family determined that risk could be minimized, because the restaurant’s managers are taking extra cleaning precautions, their son would have little interaction with customers and he would always wear a mask. But they’ll keep a close eye on coronavirus trends in the community, and they will pull him back out of the store if infection numbers climb again.
“We’re just kind of taking it day by day,” Bill Stumpf said. “I think that’s all any of us can do right now.”
Decades ago, many people like Kyle Stumpf lived in large facilities, locked away from the rest of society. That is no longer true, thanks to civil rights advocates and federal laws requiring that Americans with disabilities be allowed to live in regular communities as much as possible.
Most live in private homes or apartments, with support from caregivers who visit regularly or may be present around the clock. People with disabilities routinely work jobs, meet with friends and go on outings.
But those freedoms were abruptly curtailed this spring, as the virus’s threat surged.
Even when sheltered at home, some Iowans with disabilities have been sickened as the virus crept past the safeguards. It was often carried unwittingly by staffers or family members who didn't realize they were infected.
Finding solutions, missing families
T.J. Burt was infected in April, as were the two other men with disabilities with whom he shares an east Des Moines house. Burt, who has Down syndrome, had lethargy and a racking cough that lasted for a month. One of his roommates also became ill. The third roommate tested positive for the virus but did not become sick.
Link Associates, the West Des Moines agency that provides care to the men, decided it would be best to have a couple of staffers stay in the home with the infected clients for up to two weeks, to minimize the risk of causing more infections by having employees rotate through.
Elissa Robinson-Young, a supervisor at Link, volunteered to take the duty. She decided she couldn't ask her staff to do something she was unwilling to do. So on April 28, she temporarily moved into the house with Burt and the two other infected clients.
"I was a little freaked out. I called my family and told them I loved them and that if anything happened to me, they should promise my kids would be taken care of," she recalled.
She spent the next 14 days in her clients' house, monitoring the men's health, helping them eat and bathe and trying to keep them calm and occupied with activities and Disney movies.
Robinson-Young has three children, ages 2, 3 and 9. They stayed home with her husband and her mother. They would stop by the clients' house, dropping off food and treats, and saying hello to her through the door. Her youngest, Mia, cried all the way home after the family left McDonald's takeout on the porch one day.
"She didn't understand why Mommy couldn't come to the car and couldn't come home," Robinson-Young said.
During her marathon caregiving stint, Robinson-Young slept on a couch at night, using sheets she brought from home. After another employee who'd been staying there became ill, staff member Chris Woods spent 10 days in the home with the men and Robinson-Young, who is his supervisor.
Throughout the 14 days, Robinson-Young wore a mask and gloves, washed her hands and changed clothes often. "I prayed a lot," she said. "By the grace of God, I never tested positive." Neither did Woods, her co-worker.
The toughest part, Robinson-Young said, was seeing how much the men missed their families, and how hard it was for them to understand what was happening. They visited their loved ones by phone and video, and families would drop off treats on the porch, but it wasn't the same. At one point, after the men were on the mend, Robinson-Young and Woods loaded them into a van and drove them past their families' homes, so they could wave.
By early June, all the men had recovered, and Robinson-Young was able to deliver some good news. She came out on the front porch, where Burt was visiting with his sister, Jill Clothier, who stood a few yards away on the lawn. The two were speaking via cell phones, because Burt is hard of hearing.
Clothier describes her brother as "the heart of our family." For years, she had picked him up every Sunday and brought him to her Pleasant Hill house for dinner. During his nearly three months of isolation this spring, he often called her several times a day, asking when he could come over. All she could tell him was she hoped that day would come soon.
On June 10, Robinson-Young told them the day had almost arrived. The agency had decided clients could start visiting their families' homes starting that weekend, if everyone took precautions such as wearing masks and staying 6 feet apart as much as possible.
Clothier, stood on the lawn, beaming at the news. "Oh look," she said, holding out her arm. "I just broke out in goosebumps."
Burt's face lit up as his sister said she would bring him to her house Sunday.
"What time?" he asked.
"Noon," she said.
He grinned. Robinson-Young asked him: "Are you going to do your happy dance?" He obliged, shuffling his feet and swinging his arms in a joyful jig as his sister laughed.
Linda Dunshee, executive director of Link Associates, said the three men in Burt's house were among 13 people out of 95 in the agency's residential program who tested positive for the virus. Seventeen staffers out of about 300 also tested positive. Most had no symptoms or showed relatively mild illness, she said. None died.
The danger is on the minds of everyone who works with disabled people, many of whom have multiple chronic health conditions that could make them susceptible to deadly complications of COVID-19. According to a National Public Radio analysis of data from New York, which had the nation's biggest outbreak, people with developmental disabilities were more than twice as likely to die from the virus as those without disabilities.
If the virus counts spike...
Families and caregivers know the easing of restrictions might be temporary. If the virus counts spike again, many Iowans with disabilities will have to go back into isolation. Even now, some families are still keeping them separated, caring for them at home without the help of outside aides.
In turn, some direct-care workers have stopped working, afraid they'll pick up the virus and unintentionally spread it to their vulnerable clients or their own families, said Di Findley, executive director of the professional group Iowa CareGivers.
"It's horrible what some of them are experiencing, the fear and anxiety," Findley said.
Findley's group estimates Iowa has more than 39,000 direct-care workers, including nursing assistants, home health aides and personal care attendants. More than 90% are women. They make an average of just $13.40 per hour, and many work multiple jobs.
The skimpy pay is often blamed on low reimbursements from Medicaid, the government program that covers many services to disabled and elderly Americans. Many Iowans with disabilities are covered by Medicaid, including nearly 27,000 who are on "waiver programs" that pay for support services in people's homes.
When the coronavirus pandemic began, many agencies and individuals who hire direct-care workers scrambled to find protective equipment, such as masks, gloves and gowns. They were competing with hospitals and nursing homes, which were often seen as more important priorities.
Advocates and care agencies say the supply of such equipment for direct-care workers has improved in the past few weeks, with the help of state and local health officials, private donors and the managed-care companies that run Iowa's Medicaid program. But they worry that a shortage could reappear if there's another COVID-19 spike.
Jenn Wolff, a disability rights activist from Waverly, said she knows Iowans with disabilities who are still staying home and going without any assistance from outside aides.
"They're in survival mode," said Wolff, who trained as an occupational therapist and uses a wheelchair.
Wolff, 49, said Iowans should consider the fact that anyone could become disabled, especially as they age. Anyone could wind up needing assistance to live at home and be productive members of society. She hopes the public will watch how government leaders address shortcomings exposed by the pandemic, and vote accordingly.
"Government and society need to stop looking at it as a cost and see it more as an investment," she said.
Tony Leys covers health care for the Register. Reach him at tleys@registermedia.com or 515-284-8449.
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