Lawmaker demands answers on why Missouri’s program to help children with disabilities is not working • Missouri Independent

State lawmaker who helped secure nearly $ 3 million in funding to launch pilot program to provide medically fragile children an alternative route to home care asks for an explanation of why its launch was delayed .

In a letter to state budget director Dan Haug on Thursday, Senator Brian Williams, D-University City, called for a detailed explanation of the state’s plan to implement a pilot program to train 50 parents in become certified home health aides and allow them to be paid. to care for their disabled children who are entitled to home care.

Missouri Sen. Brian Williams, D-University City (photo courtesy of Missouri Senate Communications).

“After more than a year of delay, and after responding to requests from MoHealthNet, I still have not received a clear answer as to why a program that the Legislature has passed twice and Governor Parson has approved twice times, continues to be delayed, “Williams wrote in the letter. , a copy of which was provided to The Independent.

Thursday’s letter builds on questions that Arizona-based home health agency Team Select Home Care has raised as to why the pilot program it lobbied for failed to get started despite allocated funding. in the state budget.

The company said it was informed by officials from the governor’s office and the Office of Administration (OA), the agency that oversees the state’s budgeting and procurement, that funding was diverted to meet needs. of COVID-19.

OA and the Department of Social Services, which oversees the state’s Medicaid program, ignored repeated requests for comment on the program for several weeks. Neither the agency nor the governor’s office responded to questions emailed Thursday afternoon.

Fred Johnson, president and CEO of Team Select Home Care, said it was the most recent hurdle in a series of hurdles the company has faced over the past three years in its operations. attempts to start a pilot project in Missouri.

“Basically they dig their heels and say ‘We don’t want to.’ I can’t even speculate why at this point, “Johnson said, later adding,” It’s mind-boggling because the situation for these families is so bad. Hospitals are overflowing.

Johnson said Team Select Home Care has already administered a similar program in Colorado since 2012, and will soon launch in Arizona. He touted it as a program that will help children with disabilities receive the consistent care they need and avoid expensive, long-term hospital stays while filling the gap in private duty nurses.

Ultimately, Johnson said he believed the model would save both the state’s Medicaid program and the company’s money,

Parents of children in need of intensive medical care have said they find it difficult to cope without the comprehensive nursing services they are entitled to. For them, being trained under the program and hired as certified home helpers to care for their children makes sense, as they know their children’s needs better and are already doing this job.

Gabriella cotton
Three-year-old Gabriella Cotton needs help with activities like sitting and standing (Photo courtesy of Stephanie Currie).

For Stephanie Currie, that would mean being able to help her husband support their family of eight in St. Louis as she cares full-time for their three-year-old daughter, Gabriella Cotton, who suffers from cerebral palsy. epilepsy, a global developmental problem. late and experienced seizures.

“I am his only caregiver. We don’t have anyone else, ”Currie said. “I have no help. I am the only one.”

Budget issues

Included in the budget lawmakers passed this year for the Department of Social Services was a budget item of nearly $ 3 million of the CARES Act funds allocated to launch a pilot program to train 50 parents in the St. Louis area whose children are eligible for home nursing services or are admitted to a pediatric hospital.

The goal of the program: Parents can be trained and become certified home health aides and be hired by agencies like Team Select Home Care to get paid to care for their children who need constant medical care.

The budget came into effect for the fiscal year beginning July 1. But more than three months later, the program has yet to launch.

Bill Sczepanski, vice president of government relations for Team Select Home Care, said he was told on an Aug. 17 conference call with the governor’s director of policy and Haug that the funds were not available because rather, they were needed to respond to COVID. Sczepanski said Haug would not further explain what the funds were specifically needed for.

“Here we’re trying to give you an option that works in other states,” Sczepanski said. “And you won’t even fly it.”

The nearly $ 3 million in federal funds was to come from the state’s Federal Emergency Management Stimulus Fund. Since the end of September, the fund had a remaining balance of $ 131.3 million.

OA did not respond to questions on whether she believed the fund had been over-allocated, therefore justifying the expenditure to be withheld.

Parson has yet to issue budget cuts for the year. It is not clear whether federal stimulus funds would go through the same withholding process as state general revenue funds.

Johnson says the company initially received approval from senior MO HealthNet officials in 2018 to launch a pilot program and from there began forming families. However, state officials later told the company in the spring of 2019 that the company should instead go through the legislative process to gain approval.

As a result, the company obtained language and funding from the Department of Health and Seniors Services. the legislators of the finance bill adopted in 2020 which would allow up to 100 parents to be trained in a pilot project.

However, according to emails provided to The Independent, the company was informed later that fall by officials at MO HealthNet that after discussions with the Centers for Medicare & Medicaid Services, it was determined that the program could not be implemented under the regulation of private nursing.

So the company and lawmakers tried again this year.

“At the request of MOHealthNet, funding and authority has been placed in the department’s home health program as a pilot limited to the St. Louis metro area,” Williams wrote in Thursday’s letter.

But since the budget bill went into effect on July 1, Williams and Team Select Home Care have said they haven’t been able to get clear answers as to why the program didn’t. not implemented.

Need care

Home care agencies have long struggled to attract nurses to provide home care, in part because of low reimbursement rates through Medicaid which translates into low salaries that companies can offer compared to other health care facilities, such as hospitals.

And a shortage of nurses willing to provide home care has only been exacerbated by the pandemic, Johnson said.

“It’s almost impossible to hire a nurse,” Johnson said. “We have two recruiters who call nurses all the time. And we haven’t been able to hire a nurse in Missouri for about six months.

Isabella, the two-year-old daughter of Amanda Bisher, was born with congenital central hypoventilation syndrome, a rare neurological disorder that results in impaired breathing. Isabella is entitled to 16 hours of home nursing care a day to help her with everything from securing her tracheostomy tubes to putting on a ventilator to fall asleep.

Isabelle Bisher
Isabella Bisher, two, with her younger sister Elizabeth (Photo courtesy of Amanda Bisher).

In the two years that Isabella has been at home full-time, the 16 hours of care were never met, Bisher said.

“So it’s a battle,” Bisher said. “And it’s hard to find good nurses.

Carol Hudspeth, executive director of the Missouri Alliance for Home Care, said MO HealthNet said only about 75 percent of RN hours are met.

“So just over a quarter of the services are not being provided because the private nursing agencies have staffing issues,” Hudspeth said.

It is a problem that is the basis of federal lawsuit against DSS last year in which nine children and their families sued the state, claiming it violates Medicaid law and the Americans with Disabilities Act, in part, for failing to organize private nursing care. As a result, the state has since agreed to a plan outlining the steps it will take to ensure that complainants receive service.

This year, lawmakers have also increased reimbursement rates for private nursing under the Healthy Children and Youth program, from $ 33.44 to $ 36.64 per hour. And a one-time increase in US bailout funds will also temporarily increase that amount to $ 38.56 once approved by the Centers for Medicare & Medicaid Services.

Last year MO HealthNet has also implemented a new regulation which allows family members who are currently registered nurses or licensed practical nurses to be hired by a private nursing agency and paid to care for their family members.

“Anything that would bring more resources to the private service nursing industry, we are very supportive as an association,” Hudspeth said of the proposed pilot program.

Nursing shortages mean Team Select Home Care can currently only match nurses for about 30 children in Missouri, Johnson said. If the pilot is not implemented, the company may have to leave the state altogether, he said, “which will abandon a whole bunch of extra children.”

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