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Program to aid disabled children isn’t yet operating

Included in this year’s state budget was nearly $3 million to fund a pilot program to train families to be certified home health aides

A state lawmaker who helped secure nearly $3 million in funding to launch a pilot program to provide medically fragile children with another avenue of in-home care is demanding an explanation as to why its launch has been delayed.

In a Thursday letter to state Budget Director Dan Haug, Sen. Brian Williams, D-University City, requested a detailed explanation for the state’s plan to implement a pilot program to train 50 parents to be certified home health aides and allow them to be paid to care for their children with disabilities who qualify for in-home care.

 Missouri Sen. Brian Williams, D-University City

“After more than a year’s delay, and after meeting the requests of MoHealthNet, I have yet to receive a clear answer explaining why a program the Legislature twice passed, and Governor Parson twice approved, continues to be delayed,” Williams wrote in the letter, a copy of which was provided to The Independent.

Thursday’s letter builds on questions the Arizona-based home health agency Team Select Home Care has been raising as to why the pilot program it lobbied for hasn’t gotten off the ground despite funding allocated in the state budget.

The company has said it was told by officials in the governor’s office and Office of Administration (OA), the agency that oversees state budgeting and purchasing, that the funding was diverted to respond to COVID-19 needs. 

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

Fred Johnson, Team Select Home Care’s president and CEO, said it’s the most recent barrier in a string of roadblocks the company has faced over the past three years in its attempts to get a pilot launched in Missouri.

“They’re basically digging their heels in and saying ‘We don’t want to.’ I can’t even speculate as to why at this point,” Johnson said, later adding: “It’s mind boggling, because the situation with these families is so bad. The 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 billed it as a program that will help children with disabilities receive the consistent care they need and avoid costly, long-term hospital stays while filling a shortfall of private duty nurses.

Ultimately, Johnson said he believes the model will save both the state’s Medicaid program and the company money.

Parents of children who require intensive medical care said they were struggling to get by without the full nursing services they are eligible for. For them, being trained under the program and hired as certified home health aides to care for their children makes sense, as they know their children’s needs best and are doing that work already.

Gabriella Cotton
 Gabriella Cotton, 3, requires assistance with many activities. Photo courtesy Stephanie Currie

For Stephanie Currie, it 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 has cerebral palsy, epilepsy, a global developmental delay and has experienced seizures.

“I am her only caregiver. We don’t have anybody else,” Currie said. “I don’t have help. I’m the only one.”

Budget issues

Included in the budget lawmakers passed this year for the Department of Social Services was a line item for nearly $3 million in CARES Act funds allocated to launch a pilot program to train 50 parents in the St. Louis area whose children are eligible for in-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 be paid to care for their children who need constant medical attention.

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

Bill Sczepanski​, Team Select Home Care’s vice president of government relations, said he was told during an Aug. 17 conference call with the governor’s policy director and Haug that the funds were unavailable because they were instead needed to respond to COVID. Sczepanski​ said Haug wouldn’t elaborate further on what the funds were specifically needed for.

“Here we are trying to give you an option that’s working in other states,” Sczepanski​ said. “And you won’t even pilot it.”

The nearly $3 million in federal money was slated to come from the State Emergency Management Federal Stimulus Fund. As of the end of September, the fund had a remaining balance of $131.3 million.

OA did not respond to questions on whether it believes the fund was over-appropriated, therefore warranting expenditures to be withheld.

Parson has not yet issued any budget restrictions for the fiscal year. It’s unclear if federal stimulus funds would be subject to the same withhold process as state general revenue funds.

Johnson claims the company was originally granted approval from top MO HealthNet officials in 2018 to launch a pilot program and from there began to train families. However, state officials later instructed the company in the spring of 2019 that the company instead needed to go through the legislative process to secure approval.

As a result, the company secured language and funding in the Department of Health and Senior Services budget bill lawmakers passed in 2020 that would allow as many as 100 parents to be trained in a pilot.

However, according to emails provided to The Independent, the company was informed later that fall by MO HealthNet officials that after discussions with Centers for Medicare & Medicaid Services it was determined the program would be unable to be implemented under private-duty nursing regulations.

So the company and lawmakers tried again this year.

“Per the request of MOHealthNet, the funding and authority was placed in the department’s Home Health Program as a pilot limited to the St. Louis metropolitan area,” Williams wrote in Thursday’s letter.

But since the budget bill went into effect July 1, Williams and Team Select Home Care have said they have since been unable to secure clear answers as to why the program has remained unimplemented.

Need for care

Home care agencies have long struggled to attract nurses to provide in-home care, in part, because of low reimbursement rates through Medicaid that result in low wages companies can offer compared to other health care settings, like hospitals.

And a shortage of nurses willing to provide in-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 calling nurses nonstop. And we haven’t been able to hire a nurse in Missouri for about six months.”

Amanda Bisher’s 2-year-old daughter Isabella was born with congenital central hypoventilation syndrome, a rare neurological disorder that results in impaired breathing. Isabella qualifies for 16 hours of in-home nursing a day as result to help with everything from securing her tracheotomy tubes to setting up a ventilator to go to sleep.

Isabella Bisher
Isabella Bisher, 2, with her younger sister, Elizabeth. Photo courtesy Amanda Bisher

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

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

Carol Hudspeth, the executive director of the Missouri Alliance for Home Care, said MO HealthNet has said that only about 75 percent of authorized nursing hours are fulfilled.

“So a little over a quarter of services go unprovided because the private duty nursing agencies have issues with staffing,” Hudspeth said.

It’s an issue that is the basis of a federal lawsuit filed against DSS last year in which nine children and their families sued the state, arguing it’s violating the Medicaid Act and Americans with Disabilities Act, in part, for failures to arrange for private duty nursing. As a result, the state has since agreed to a plan outlining steps it will take to ensure plaintiffs receive services.

This year, lawmakers also increased private duty nursing reimbursement rates under the Healthy Children and Youth program, from $33.44 an hour to $36.64. And a one-time increase with American Rescue Plan funds will also bump that up temporarily to $38.56 once approved by the Centers for Medicare & Medicaid Services.

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

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

Nursing shortages mean Team Select Home Care is only to match nurses for only about 30 children in Missouri currently, Johnson said. If the pilot isn’t implemented, the company may have to leave the state altogether, he said, “which is going to abandon a whole bunch more kids.”

This article by Tessa Weinberg is published from The Missouri Independent via a Creative Commons license.

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