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A PANDEMIC STRIKES: Parents ask 'Visits when?'

Virus disrupting residents’, families’ lives in state centers for people with disabilities by Kat Stromquist | March 8, 2021 at 7:29 a.m.
Jonesboro Human Development Center resident Danny with dad Terry Johnson and dog Fred. Families of the centers' clients are anxious for off-campus visits to resume. (Special to the Arkansas Democrat-Gazette)

This series, “A Pandemic Strikes,” examines the impact of covid-19 in Arkansas. The state’s first cases and deaths were confirmed in March 2020.

When Terry Johnson used to pick up his son Danny for a visit, the pair had several favorite stops: a Target store for sunglasses, the bowling alley for games, Ruby Tuesday restaurants for cheesecake.

Danny, a 39-year-old resident of the Jonesboro Human Development Center, might spend the night with Johnson at a nearby hotel. Sometimes they’d run down to Little Rock to visit Danny’s grandmother.

The covid-19 pandemic interrupted outings for clients of Arkansas’ state-run centers for people with developmental disabilities starting last March. Now, with most clients vaccinated, parents ask when days on the town will resume.

[EARLIER: A year later, Arkansas covid-19 survivors see ills linger » arkansasonline.com/covidyear/]

State officials, however, say unknowns about whether vaccinated people can spread the virus and quarantine rules that strain staffing are in the way — disappointing parents and depriving clients of joyful trips to “Mickey D’s.”

“We haven’t been able to do any of that, and [Danny] doesn’t understand why,” said Johnson, president of the Family and Friends of Care Facility Residents advocacy group. “They’ve all had their vaccines. Do they get to come home now?”

Off-site visits for the roughly 850 human development center clients are the latest bone of contention around visit policies for residents of long-term care facilities, who were known to be at serious risk when covid-19 struck last spring.

In Arkansas and around the country, regulators locked down care centers to keep the virus out. But when weeks of closures became months, families grew distressed, fearing for isolated loved ones’ well-being.

Some joined online support groups or petitioned lawmakers to agitate for more contact. Last week the Arkansas House of Representatives passed a bill aiming to strengthen caregivers’ visitation rights in health care settings.

[How is the coronavirus affecting you in Arkansas? Tell us here » arkansasonline.com/coronavirus/form/]

The state’s five Human Development Centers closed to visitors last March. They reopened for short, masked visits in late July, reuniting clients who have intellectual and other disabilities with their parents or guardians.

Families lately say they’re anxious for more, dismayed by a crisis that’s still unfolding.

“It’s been a year since she’s been home, and she used to come home every week for at least one night,” said Jan Fortney of her daughter Kim, 45, who lives at Conway Human Development Center.

It’s “disheartening,” Fortney added. “She still wants to come home and see Mom and Dad.”

QUARANTINE WORRIES

During a Feb. 24 meeting of a board overseeing the human development centers, Division of Developmental Disabilities Services Director Melissa Stone said she’d reached out to the Arkansas Department of Health about home visits and outings.

She wrote to the health agency’s top officials a few days earlier, records show, asking about updates to quarantine policies. Previously, she wrote, residents who went home to visit or out to restaurants had to quarantine for 14 days afterward.

“We chose not to allow any patient to leave because we do not have the capacity to do this,” she said in the Feb. 22 email, obtained by the newspaper through an open-records request.

With most clients now vaccinated, Stone wrote, “if we allow those patients to leave campus for a few hours/ overnight home visit, can we just monitor them for symptoms rather than fully quarantine them?”

Just an hour later, the Health Department’s medical director for infectious disease, Dr. Naveen Patil, replied in the negative. Vaccines and visitations are not interrelated, he wrote.

“Vaccination does not mean resumption of business as before. We do not have enough data to justify this,” he wrote.

Patil explained a main concern is that scientists don’t know whether vaccinated people can contract and pass the coronavirus to others who didn’t get shots. At the care sites, that includes some staff members, a handful of adult clients and children, for whom no vaccine is approved.

Stone relayed Patil’s response to the board and several parents who listened to the conference call. She said her agency is “getting a lot of desperate, anxious calls [from parents] lately … This is putting us in a really bad spot.”

Officials are trying to come up with alternatives to allow for longer, more engaging visits on campus, she said, while complying with state and Centers for Medicare and Medicaid Services health rules.

Stone later wrote to a reporter that an off-campus visit’s “emotionally distressing” aftermath in two weeks of quarantine is a dilemma.

“It is less about potential staffing issues, and more about our overall concern with clients being alone in a room with one on one staff, in full PPE, for a 14 day quarantine,” she wrote in an email.

VACCINATION HOPES

Complicating matters, human development center workers have not universally embraced vaccinations, officials said during the board meeting in late February.

At that time, fewer than 40% of staff members at the Booneville, Conway and Warren sites had agreed to be vaccinated. Some workers reportedly cited religious concerns or fears about the physical effects of the vaccine.

Larger percentages of workers were vaccinated at the Jonesboro and Arkadelphia facilities, 50% at Jonesboro and 60% at Arkadelphia.

Hundreds of staff members and clients also tested positive for covid-19 during outbreaks across the centers this past year. At least two clients and one worker died of the illness, Health Department data show.

Stone said staff members’ slow vaccination rate is not a factor in the campus visitation policies. In remarks at the recent meeting, she said she’d been “hopeful” that client vaccinations would allow officials to “really open up the campus.”

With off-site outings still paused, parents of human development center residents said they’d likely participate in more activities on-site if offered, such as longer visits during a monthly family day.

Deborah Rainwater, whose 19-year-old son Kirk lives at the Conway facility, says she does not bring him home for overnight visits, but she very much misses attending on-campus events such as dances, where he loves the music.

“It’s been difficult, as far as not getting to be there for all the different things we used to get to be there for,” she said.

Johnson, the parent of a Jonesboro facility client, said he just wants to know what the “end goal” for resuming outings is, whether it’s a certain percentage of staff being vaccinated, “herd immunity” or something different.

“Everybody in the world probably has the same question: When can we get back to normal?” he said.

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