March 30, 2020
Suzie Hessman's daughter has osteoporosis, has had open heart surgery twice, five hip surgeries and her thyroid removed.
If she got COVID-19, the 27-year-old who also has autism would need a hospital bed and a ventilator. Hessman is sure of it.
The new coronavirus hits particularly hard at people with pre-existing health conditions. And health care systems nationwide are expected to allocate limited life-saving equipment to those they believe are most likely to survive. Advocates fear these measures will discriminate against people with disabilities.
But there is little Hessman, or her daughter Boston Kensington, can do to protect her from falling ill. Her safety is in the hands of a state-contracted group home that is running out of bleach wipes, paper towels, gloves and toilet paper.
Thousands of Arizona group home residents like Kensington, and the caregivers who work with them, are in peril because group homes are struggling to find personal protective equipment and cleaning supplies, don't have a realistic way to prevent outbreaks and little ability to protect residents and staff if there is an outbreak.
Advocates and disability services providers say the state hasn't given enough guidance on how to manage the crisis, nor has it taken measures to cancel programs that serve large groups of people with disabilities all at once.
For group home residents like Kensington, isolation is not an option. Caregivers come and go in three different shifts a day. Hessman has no clue if they are taking social distancing seriously when they're off work.
And so many staff members are taking off work that the group home can't meet required staff-to-resident ratios. So they might have to consolidate residents in fewer homes, which could present more opportunities for exposure to the virus, Hessman fears
When she asked for a copy of her group home's state-mandated pandemic plan, the director asked her why she wanted to see it. He sent her a plan, but he acknowledged later to The Arizona Republic that he'd written it after the coranavirus started spreading.
Unable to sleep, Hessman last week wrote an email to state employees asking how they're helping group homes for people with disabilities prepare for the pandemic.
An employee responded with links to webpages about COVID-19 symptoms and prevention. He also included links to recommendations for group homes: screen everyone including staff who enters the home for potential illness; establish disinfectant schedules; make a plan to distance symptomatic patients from other residents.
He assured her that every group home must have a pandemic plan. That plan should include solutions for a sudden loss of workers, methods to get supplies and a list of company contacts and organizational charts, the staffer wrote.
"All very tied up with a bow," Hessman said. "As I read it, I'm going, 'Wow this is really great but I can bet you when it comes to logistics it isn't going to work.'"
Her bet is right
'No way to protect' against in-home spread
Group home staff and advocates said containing the virus in a group home setting seems like an impossible task. How do staff maintain 6 feet distance when their job is to help people go to the bathroom or dress themselves? How do group homes prevent other residents from getting sick if one falls ill?
How do staff explain social distancing to residents who don't understand it? And how do they manage behavioral problems that will arise when residents get anxious because their usual daily activities outside the home have been canceled?
No one really knows.
"It's highly likely that anybody who brings (the virus) in is going to share it with everybody else there, and there is virtually no way to protect against that," said Jon Meyers, executive director of the Arc of Arizona, an advocacy group for people with intellectual and developmental disabilities.
Following the state's recommendations has proven difficult.
The state suggested screening employees.
The Guthrie Mainstream Services group home in Mesa takes employees' temperatures before they come in, but they're running out of covers. Staff are waiting for a thermal thermometer to arrive in the mail.
The director for Chandler Gilbert Arc has been waiting for a shipment of thermometers for a long time. The homes don't have any.
"We're just interviewing people," said executive director Billy Parker. "If anybody makes any indication that they don't feel good then they don't come in. But we're not taking people’s temperatures before they come in."
Chandler Gilbert Arc has eight group homes in the East Valley and two in Prescott Valley.
'Can't get out of the loop'
Even one of the state's largest group home providers, Aires LLC, faces dire shortages and uncertainty.
"There is a pandemic plan requirement," said Wendy Shaw, president and CEO of Aires, LLC. "But I think in this environment we're all finding that we were not prepared for this."
The state never asked to see her plan before the pandemic. She said she doesn't think there was ever a "measuring stick" to evaluate such plans
Aires' plan assumed that staff could replenish supplies from other sources if local supplies ran low.
Instead, gloves are so scarce that Aires might run out of large and extra-large gloves in two weeks. That means some employees might have to change adult diapers without protection.
Staff at group homes earn minimum wage.
Cleaning supplies are so hard to find that when Shaw was able to purchase floral-scented bleach from Amazon, she drove from Phoenix to Tucson to meet a group home staffer from Benson who needed it.
Aires' pandemic plan also didn't account for personal protective equipment. Each group home has one kit with a disposable mask with a face shield, gloves, a paper gown and shoe covers. No more.
She expects hospitals not to have capacity to accept the number of group home residents who could get sick. So that means employees will have to take care of people at home.
She has been searching for masks to no avail.
"I believe it was the governor's office that said that there was going to be a supply delivered to the county health departments. We've reached out to all the county health departments and they tell us to call that 211 COVID hotline. And you call that hotline and they refer you back to the county health department," she said. "It's a loop. We were hoping we would be able to get on a list, to get in line ... We can't get out of the loop."
Group home administrators everywhere are having similar struggles, Meyers said.
Meyers said the government has provided group homes with a lot of the same information that is available to the general public, without real support.
"I'm disappointed with the failure of the system to better prepare for this," he said. "We've been talking about this pandemic for months now. We should have seen something coming."
But the Arizona Division of Developmental Disabilities did not help group homes stock up on supplies and has not yet offered help. And as public health officials pleaded with the general public to limit social gatherings, the division has not said whether day treatment programs should close.
Day treatment programs serve large groups of people with disabilities, offering educational activities and life skills coaching. Most group home residents regularly attend these.
Some agencies closed anyway, unsure if their contracts would be severed. Others waited, hoping for guidance on how they could replace these crucial services, Meyers said.
For many services, that guidance has yet to come, Meyers said.
The division introduced on March 25 an option for residents to receive some in-home services from day treatment providers, but Meyers said it came too late and is inadequate.
"They are making decisions incrementally, it's just too slow to meet the rapid pace at which things are changing in the real world," Meyers said. "The longer providers go without an edict from the state, the more day program participants are going to be exposed to this and the more staff are going to be exposed to this."
Public health officials have been calling on people to stay home for weeks.
Ultimately, the Centers for Medicaid and Medicare Services will determine whether it covers all requested changes related to the coronavirus, which is expected to happen but it's not certain, Meyers said.
But Meyers said state leaders should just approve the changes to save lives.
The state did not immediately respond to questions.
'You wonder who we'll be serving'
Advocates worry about the long term effects of the coronavirus on the network of care for people with disabilities. Meyers said altering residents' schedules could result in behavioral problems that caregivers are not prepared to manage.
Providers already struggle to keep employees. Direct caregivers take on high stress, physically and emotionally exhausting work for minimum wage. At Aires, only 30% of employees stay longer than six months.
Before the pandemic began, Aires had 55 vacancies for direct caregivers. That number is likely to grow.
"Now we're asking these minimum wage workers to risk themselves if we get somebody positive for this illness, to really place themselves in jeopardy," Shaw said.
She also reflected on the grim reality that group homes residents could die.
"This is going to be an illness that profoundly affects older people and people who are vulnerable," Shaw said. "You have to wonder who we'll still be serving."