Home care for ‘medically fragile’ children remains uncovered by Medicaid

Missouri Gov. Mike Parsons signed legislation to help parents of medically fragile children provide in-home healthcare in June. However, Medicaid will not cover a program that could help them and their families with life-saving care.

The Family Home Health Aide Program (FHHA) Program provides parents the opportunity to become trained, certified and hired caregivers for their loved one while operating under the supervision and guidance of a registered nurse case manager. 

The problem is that Missouri Medicaid does not cover the FHHA program, which currently prevents hundreds of Missouri kids from leaving overcrowded hospitals to receive care in their homes.

Stephanie Currie is a Missouri mom of six kids. At the age of three, her youngest child Gabriella, or Gabby, is a special needs child who needs around-the-clock care. 

“She requires full time care with almost everything,” Currie said. “She cannot sit on her own; she’s G-2 dependent so she does not eat by mouth but through a feeding tube, and she is nonverbal.” 

One of the biggest challenges Currie faces is not having enough time in the day. She takes care of Gabby full-time, so she doesn’t have time to work.

“We’re involved with her from the time she wakes up until the time she goes to bed, making sure she’s happy and has everything that she needs, gets to her weekly doctor’s appointments on time, and gets play time in,” Currie said. “With everything that Gabby requires, I have chosen not to work.” 

“Because she requires a significant amount of physical therapy and doctor’s appointments, I didn’t feel like having a regular ‘9 to 5’ job would work for me.”

One of Gabby’s conditions is epilepsy, which requires Currie to be available to take her to get medical care. Currie’s husband is responsible for the family’s income, which sometimes requires him to work seven days per week.

“It’s hard to take care of a family of eight on one income,” Currie said. “With dad working seven days a week, more than 50 hours, it’s hard for the kids especially Gabby; she deserves to spend time with both of her parents.” 

A group of parents and caregivers have filed a federal lawsuit against the Missouri Department of Social Services to compel the state to ensure coverage of in-home nursing care these children need. Currie is a part of this lawsuit.

“[The] majority of the families in the group have a hard time finding quality healthcare for their children along with reliable, dependable nurses to come into the home,” Currie said.

“Gabby is nonverbal so she can’t tell me if the nurses aren’t taking care of her properly. I worry about what goes on when I’m not around.” 

With the FHHA Program, parents are required to go through the state and Board of Nursing mandated schooling to become a certified nursing assistant. They can potentially get hired by an agency to provide physician-ordered, skilled personal care to their child. 

All facets of employment will adhere to state regulations, board of nursing rules, labor laws, accreditation standards, and agency policies and procedures. 

Team Select Home Care offers this type of training and development through the FHHA Program to help medically fragile families and caregivers. This program takes the pressure of the already challenged nursing system, while allowing parents of medically fragile children to get paid for the work they are already doing.  

“The problem is that Missouri does not want to ‘pay people to raise their kids’ although that is not the intention of this program,” Bill Sczepanski, vice president of government relations at Team Select Home Care, said. “This program educates parents in addition to giving children the medical attention they need.”

Sczepanski talked about the value of the Family Home Health Aide program.

“The way this program works is by sending either a licensed professional nurse or a registered nurse into homes to care for children with different acuity levels, ranging for a couple of hours a day to 24 hours,” Sczepanski said.

Although it is a global problem, nursing workforce data shows that in Missouri, shortages currently exist in certain areas of the state, according to the Department of Commerce and Insurance.

“This issue is particularly severe in Missouri, resulting in hospitals being so full that children are having to be sent out-of-state,” Sczepanski said. “Some children have been in hospitals for over five years, just waiting for proper nursing staff so they can come home.” 

Additionally, Sczepanski talked about how the nursing shortage impacts medically fragile children. Nurses in this line of work are often paid significantly less than other nurses.

“An agency can pay a nurse somewhere between $20-$24 per hour to provide care through this program,” Sczepanski said. “The problem is that it is an incredibly low wage for a nurse which makes it harder to recruit nurses when travel nurses in Missouri are being offered up to $200 per hour.” 

The nursing shortage is forcing families to hospitalize children since there are not enough private duty nurses to care for them at home. With its successful track record, the FHHA program could potentially keep kids at home while receiving the medical care they need.