With vote on Medicaid expansion looming, home health care also needs a boost
Expansion of Missouri’s Medicaid program will be up for a vote in August. For one Boonville family, the program also needs expanded access to care, particularly for those who receive home health care services.
When Dwight Green was just an infant he was shaken, leading to a traumatic brain injury associated with shaken baby syndrome. He now is 13 and needs near round-the-clock care.
He is nonverbal, blind and a quadriplegic, and due to an inability to swallow, has a tracheostomy tube to remove fluid so that he does not drown in his own saliva. He also needs assistance to dress and sit up.
Despite all of this, Dwight still finds ways to express himself and loves being around his family. His adoptive parents, Beth and David Green, are part of a team with nurses from Bayada Home Health Care to take care of his needs.
Dwight and his twin brother, Luis, and older sister, Alondra, all were adopted 13 years ago. The Greens also have three biological children — Nathan, D.L. and Katherine.
“He came into our care when he was 7 weeks old,” Beth Green said. “He came back into our care to stay when he was 6 months old. When he was about two, we adopted him. He basically has required 24/7 care the entire time.”
The Greens always knew they would want to have a larger family. They also wanted to help children who did not have a family, which is why they became foster parents. Beth advocates for Dwight and his care to state lawmakers through Bayada.
“I think sometimes they don’t realize just how time-consuming the care of a person with this level of need is,” she said. “I think they are thinking, ’Well, we have had toddlers and they require a lot of time,’ but you can lay a toddler down for a nap and maybe pull weeds in a flower bed. That’s not true for Dwight. You have to be able to hear him at all times.”
The most a person typically can do is use the restroom or get a quick drink from the kitchen when caring for someone in Dwight’s condition, she said.
LIMITED REIMBURSEMENT RATE
A federal lawsuit filed in March seeks to improve conditions for disabled children receiving at-home care.
Medicaid allows up to 125 hours, or slightly less than 18 hours per day, of in-home care through private duty nursing for Dwight, which leaves about 43 hours per week for family care.
The level of care for private duty nursing is determined by a service coordinator nurse from whichever company a family uses for home health care.
“There is a scale the state of Missouri uses and the nurse will take that scale in conjunction with his or her assessment of the client and that will determine how many hours the client is authorized,” Bayada Office Director Jada Holmes said. “They also take into account the family life. Who is in the home.”
For Dwight, that means nurses from Bayada tend to most of his needs. They receive $33.44 per hour reimbursement from the state. That amount will reduce to $31.52 per hour once Dwight turns 21, Holmes said. The higher rate is for pediatric care, while the reduced rate is for medically fragile adults.
“They used to be the same and they eventually moved apart and the adult rate became lower than the pediatric rate,” she said.
This reimbursement rate limits Dwight’s access to care. While he is a unique case, who right now receives the optimal hours of care from nurses and his parents, not everyone has the same story.
Missouri’s reimbursement rate for nurses also means there is high turnover in the home health care industry.
“We get good nurses, but they leave for better paying jobs,” Beth Green said.
A lot of the work to care for Dwight includes his positioning so he does not develop bed sores. He enjoys the outdoors, as well, so he needs to be lifted in and out of bed. Nurses also make sure he receives his medicine on time and help with bathing and other personal needs, including preparing his nutrition through a feeding tube to his stomach.
“He is very social, so he is not happy just being left in a bed,” Green said. “While he doesn’t talk, he enjoys being around other people. He is smiling and laughing when he is in their presence.”
Making home health care a viable option for nurses, rather than a stepping stone, is what is needed to maintain this section of the health care industry, Green said.
“For most [nurses] it can’t just be their full-time job. They need something that pays a bit better,” she said.
IN-HOME CARE LESS EXPENSIVE
If there were to be cuts to Missouri’s Medicaid program, it would mean Beth or David would either have to switch to part-time employment or leave their jobs with Saints Peter and Paul School or the state, respectively, to allow more time to care for Dwight when a nurse is not available. Cuts also likely would mean fewer at-home nursing hours for Bayada and other home health service companies.
Bayada serves upward of 70 families in Missouri, and even then, some families use more than one service provider, Bayada Director of Government Affairs Melissa Allman said. Despite some families using more than one provider, that does not mean they receive the max number of hours of in-home care, she said.
Bayada, in its work to advocate for home health, does grassroots awareness on issues in the industry, Allman said. They do this through lawmaker education and establishing in-home and virtual visits, so lawmakers can see all the work a home health nurse does in a day. Families also make trips to the Missouri Capitol to meet with lawmakers, the governor and lieutenant governor.
“We take for granted just to jump in the car and drive to Jefferson City for the day,” Missouri Alliance for Home Care Executive Director Carol Hudspeth wrote in an email. “These families have to plan out the trip well in advance. They get on the road sometimes before the crack of dawn to make a 10 a.m. meeting with their legislator.”
This means they often are packing a stroller, portable vent, suction supplies and everything else they may need to keep their child comfortable.
“They do this for all of the [private-duty nurse] families out there,” Hudspeth wrote.
The goal of the Missouri Alliance for Home Care is to continue to provide facts and put real stories and faces in front of legislators and budget leaders so home health is not just a dollar amount or line item in the budget, she wrote.
State Medicaid programs are supposed to work for the good of the people, Allman said.
“Right now, because of the low reimbursement rate, we are not able to provide the services that are physician directed and authorized because we do not have the staff to be able to do it,” she said.
In-home health care costs the state less than a night’s stay in a private or public hospital, according to information provided by the Missouri Alliance for Home Care. Citing Kaiser State Health Facts, an average one-night stay is between $2,000-$2,500, or more, depending on if it is a state-run, nonprofit or for-profit hospital. This cost can increase upward of $5,000 for neonatal intensive care units.
An in-home private duty nurse working 16 hours receives $535.04 through the Medicaid reimbursement for elderly or disabled home care.
While Dwight currently has nearly optimal access to care, he is a unique case. He has two parents and other family members willing to help. In other cases, it is a single parent, who still works a full-time job, and has family members unwilling to help, Holmes said.
“[Missouri] can set what we get reimbursed and that makes it hard to compete with other like services,” Allman said.
Some states can require private-duty nursing as a covered benefit through private insurance, she said. Missouri does not.
“Even if [private insurance coverage] is temporary, part of the year or several months, it would help offset some of the costs Medicaid has to provide,” Allman said.