JEFFERSON CITY, Mo. — Every day, Amanda Bisher suctions her three-year-old daughter’s tracheotomy tubes, checks her oxygen levels, adjusts the antennas on an implanted device that controls her diaphragm so she can breathe deeper and hooks her up to a ventilator that sends bursts of air through her airways, breaking up accumulated mucus.

At least once a week, Bisher calls a nursing agency, hoping they’ve hired someone to help her do the job.

Isabella Bisher has a rare breathing disorder that causes her to take shallow breaths, bringing in dangerously low levels of oxygen.

She’s one of hundreds of Missouri children who qualify for state-covered nursing services in their homes. With complex medical conditions or disabilities, they rely on sometimes around-the-clock care for everything from bathing to medications or the operation of life-saving machines and medical devices.

The state’s Medicaid program pays for the services. But the children don’t all get the help they’re approved to receive. Private nursing agencies under contract to provide the services have long struggled to hire for the jobs, facing a nursing shortage turned even more acute by the COVID-19 pandemic.

The approved shifts often go unfilled, leaving parents forced to either hospitalize their children or take on additional duties at home. Carol Hudspeth, executive director of the Missouri Alliance for Home Care, the state’s nursing agency association, said Missouri Medicaid officials have told her 75% of the hours approved get filled.

It’s a problem that in the past two years has landed Missouri in federal court, accused of “failing at a systemic level” to secure services for the approved children. Officials this year promised in court to improve the services to help parents find nurses.

One nursing agency is lobbying Gov. Mike Parson’s administration to try an additional approach by adopting a program to train and pay parents to take on some of the work — an effort that appears to be going nowhere despite lawmakers’ approval. The state has been silent on the status of the program, which is funded in the state budget.

Rebecca Woelfel, spokeswoman for Missouri’s Department of Social Services, which administers Medicaid, did not respond to repeated inquiries about the program’s status.

Isabella spent her first five months in the hospital. When she was cleared to be released, Amanda Bisher said the Florissant family couldn’t find any home nurses to cover her approved shifts. It kept Isabella in the hospital for another five months as Bisher got a “crash course” from the nurses on how to tend to her condition.

When she was finally able to bring Isabella home after securing a few nursing shifts, Bisher said the girl thrived. She described her daughter as loving and happy.

“She’s only behind physically, but cognitively, mentally she’s super smart, above and beyond milestones,” she said.

Now, Bisher considers herself lucky to have two nurses who cover six night shifts a week caring for her daughter. But Isabella is eligible for 16 hours of nursing every day, and gets only a fraction of that — just 48 of 112 hours per week are covered. Bisher and her mother fill in the rest of the time, on top of caring for and homeschooling five other children. Her husband, a GM plant employee, works extra to support the family.

With any of her remaining time, Bisher looks for more nurses. Sometimes, she writes social media posts about her daughter to help the nursing agencies recruit, emphasizing that the young patient is “so dang cute.”

“It’s really already a full-time job to be caring for my child with all of the extra things she has,” she said. “I really need to have 10 of me to cover the 10 full-time jobs I have.”

‘I was holding up by the Grace of God’

The shortage is neither new, nor confined to Missouri.

Since as early as 2002, parents of children with complex medical needs have been suing states in federal court, seeking to force officials to secure the home nursing services for which they’re eligible. In 2016, an Illinois federal appeals court ordered state officials to “take prompt measures to obtain home nursing” despite the nursing shortage, for families who sued.

Home nursing is among the profession’s lowest paying jobs. In Missouri, the job search site Indeed lists $18.29 an hour as the average salary for a private duty nurse, compared to $29.11 for nurses overall.

Because they are paid by the state, agencies are limited in their ability to raise wages, said Fred Johnson, CEO of Team Select Home Health, the nursing agency lobbying to start the family training program. Meanwhile, strained hospitals are paying traveling nursing agencies as much as $200 an hour to boost staff decimated by turnover from the COVID-19-driven patient surge.

Missouri this year agreed to take steps to address the home nursing shortages, after nine families sued the state in federal court in March 2020. Their attorney, Joel Ferber of Legal Services of Eastern Missouri, said the families each receive anywhere from 85% to zero of the nursing hours they qualify for.

Most of the children in the lawsuit, who are not named, depend on medical devices to live. Their parents in affidavits described losing jobs and experiencing constant stress from caring for their children to avoid sending them back to the hospital.

“When she is in the hospital, she misses her family so much,” said the father of a 17-year-old Ferguson girl who cannot walk, eat or breathe on her own. “After being there for years, she got depressed and they had to put her on psychiatric medication for her depression.”

The girl lived in the hospital for five years and “was clinically ready to come home a long time ago,” her father said, but couldn’t without skilled home nurses available. At the time the affidavit was filed, the family had a nurse for the girl at home a few nights a week.

“On the other three days of the week, I was doing the care around the clock,” her father said. “It was so stressful, and I did not know how I could manage. I was holding up by the Grace of God. After one week of (his daughter) being back home … I could feel myself getting weaker from lack of sleep … That will break a person. I knew (she) could not stay at home if I did not care for her. One person cannot do that much work. But I was doing it because I love my daughter.”

The lawsuit accused the state of violating Medicaid requirements and a section of the Americans with Disabilities Act. It requires people with disabilities to receive care in the least restrictive or institutional setting possible.

As part of the agreement, Missouri officials this year promised to provide better case management to help families find nurses. Among other things, they also pledged “a good faith effort” to provide telemedicine, so families can get virtual help with tasks such as reinserting a feeding tube rather than going to the emergency room.

Silence from state officials

Johnson, whose agency offers nursing services in 10 states, has been pitching Missouri on another potential solution.

Since 2018, Team Select, which operates one Missouri agency in Creve Coeur, has lobbied the state to allow the agency to hire parents as home health aides for their own children, paying them Medicaid-level wages for some of the tasks they already perform.

The intention is to keep parents at home if they choose, free up nurses for the more skilled tasks and avoid hospitalizing the children. The economic benefit would be significant. While Medicaid currently pays home nursing agencies close to $600 per 16-hour day (the maximum most children are approved for), it can pay up to $4,000 for each day the child spends in a hospital, according to the lawsuit.

The idea is unorthodox but not untested. Colorado has run a program within Medicaid for years allowing family members to become certified nursing assistants and be paid for their children’s care. Johnson pushed for a similar program’s passage in Arizona this year.

After a lukewarm response from Medicaid officials, Team Select went to the General Assembly. It got the attention of Rep. Jonathan Patterson, a Lee’s Summit Republican, who added a pilot program for 100 families into the budget the General Assembly sent to Parson last year.

“I thought it was a great idea,” he said. “Being in the hospital is the costliest aspect of medical care. If we could get these kids home and teach their parents to take care of them, that would save the system money.”

But months into the fiscal year last fall, Glenda Kremer, assistant deputy division director of the state’s Medicaid program, told Team Select in an email it couldn’t launch the program because federal rules require parents to be qualified as nurses in order to be covered by Medicaid. Kremer could not be reached for comment.

This year, lawmakers approved rewritten language classifying the services for the pilot program as “home health care” instead. The $3 million initiative using last year’s federal COVID-19 stimulus funds is small, allowing 50 families whose children are hospitalized, or likely to be, to be paid to care for them at home.

This summer, state officials told Team Select it again could not start the pilot because it had spent the stimulus funds on pandemic response, the nursing agency’s vice president of government relations Bill Sczepanski said.

The state’s budget office did not respond to a request for comment. As of late August, the Missouri’s CARES Act showed a $6 million balance, according to the state treasurer’s office.

Patterson said he was not aware the program was stalled and was trying to find out why from DSS.

“I understand that people want it proven to them” that the program would be effective, Sczepanski said. “But we’re not even being given the chance on a pilot.”

‘Thinking outside the box’

Hudspeth, of the Alliance for Home Care, has been taking more traditional routes to address the home nursing shortage.

The group has for years pushed lawmakers to increase reimbursement rates for Medicaid home care providers and to loosen regulations in the hopes more shifts can be filled. Last year, the state approved a new rule allowing family members of the children to be paid to perform the services — if they are also registered nurses or licensed professional nurses.

Medicaid reimbursement rates for the agencies have experienced a net 8% increase over the past five years.

The Alliance wasn’t involved in the pilot program, but with the pandemic worsening staff shortages, Hudspeth said other agencies are interested in seeing its results.

“We need to start thinking outside the box at more innovative ways to provide care,” she said. “Care in the home is vital. COVID brought that to the forefront.”

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