Missouri lawmaker demands explanation for stalled disabled children’s home health program

A Missouri lawmaker is demanding that the state budget office explain why officials haven’t started a program, passed twice by the General Assembly, that would pay parents of disabled children to care for them amid a shortage in-home nurses.

“After more than a year’s delay, and after meeting the requests of MO HealthNet, I have yet to receive a clear answer explaining why a program the Legislature has twice passed, and Governor Parson twice approved, continues to be delayed,” Sen. Brian Williams, a University City Democrat, wrote to Budget Director Dan Haug on Thursday.

The state has been slow to start the program and silent on its status, The Star reported last month.

The initiative is for the families of Missouri children with severe disabilities or conditions that qualify them for nursing services at home, paid for by the state’s Medicaid program, MO HealthNet. Even before the pandemic exacerbated a nationwide nursing shortage, the care was hard to find.

Nursing shifts often go unfilled, forcing parents 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 last month that Missouri Medicaid officials have told her 75% of the hours approved get filled.

“It’s really already a full-time job to be caring for my child with all of the extra things she has,” one mother, Amanda Bisher, told The Star last month.

Bisher’s daughter has a rare breathing disorder and relies on nearly around-the-clock care. With nurses covering just 48 of the 112 hours a week her daughter qualifies for, Bisher and her mother do the work the rest of the time, suctioning tracheotomy tubes, checking oxygen levels, adjusting an implanted device in the girl’s diaphragm and hooking her up to a ventilator. They also care for five other children.

Nine families have sued Missouri in federal court over the lack of services. Their attorney said those families get anywhere from 85% of their nursing hours staffed to none.

An Arizona-based home health care company, Team Select Home Care, has been lobbying the state on an alternative solution, a pilot program in MO HealthNet that would allow the agency to hire parents as home health aides for their children. It would free up nurses for more skilled tasks, keep parents at home with their children and avoid putting them in the hospital at a higher cost to the state, advocates say.

Lawmakers put money for a 100-family pilot program into the budget last year, but Team Select’s CEO said state Medicaid officials told the company the program could not be launched because federal rules require parents to be qualified as nurses in order for their work to be covered by Medicaid.

So lawmakers tried again, this year writing in the budget a $3 million initiative, classifying the services as “home health care” and restricting participation to a St. Louis County agency. The changes were made “per the request of MO HealthNet,” Williams wrote Thursday.

The program approved this year would use last year’s COVID-19 relief funds and be limited to 50 families whose children are either already hospitalized or at risk of being sent back to the hospital because of the lack of home nurses.

It still hasn’t started. Last month, Department of Social Services spokeswomen ignored multiple inquiries about the program.

“Because no clear answers have been provided by MO HealthNet, and because this matter relates to an appropriation in the budget, I am formally requesting, in writing, a detailed explanation for the program’s delay and the administration’s plans for its implementation,” Williams wrote.