For three months, 32-year-old Tara Hegger has lived in the intensive care unit at Mercy Hospital.
She passes the time listening to music, visiting with family members and watching TV, mostly comedies. They keep her mind off of a painful decision that inches closer every day.
“The social worker came to me and basically told me I had to leave, because my days ran out," Hegger said, pausing between the pumps of oxygen provided by a ventilator next to her. "I had to make a choice.”
Like other Missouri patients in her situation, she will have to leave the state to find a nursing home that accepts her insurance — a dilemma tied to the state's low Medicaid reimbursement rate for long term care.
Hegger, a former kindergarten teacher, has a rare genetic condition called Von Hippel Lindau disease, which causes tumors to grow throughout her body. An operation two years ago left her paralyzed from the neck down, unable to breathe without a ventilator. But finding a skilled nursing facility nearby that will accept her has proven to be nearly impossible.
“It’s just frightening. It’s surreal,” said Hegger’s cousin, Lisa Pepper. “I feel like that’s why we’re still here now. We’re waiting for the real answer.”
In August, Mercy officials left a letter next to Hegger’s bed. Medicare would no longer pay $1,696 for every day that she spends in the ICU. Hegger or her other insurance provider, MO HealthNet, would be responsible for the cost, and she would have to move to a long-term care facility as soon as possible.
At first, Hegger and her family were given two options — a nursing home four hours away in Kansas, or one in Belleville, Ill. that has been cited for safety violations. Hegger’s family pulled her out of that facility last year, suspecting neglect. Home care also is an option, but her relatives say they cannot afford it. Frustrated and confused, her best friend built a website — helptara.org — to share her story.
“We want better options. We want Tara to feel safe,” Pepper said. “We’ve never really understood what, exactly, is happening.”
There are 21 Missourians who, like Hegger, are covered by Missouri’s Medicaid program, live in a nursing home, and need to use a ventilator to breathe. But every single one of them lives out of state.
Missouri nursing homes are rejecting these patients, saying their conditions are too complex, said Aimee Wehmeier, executive director of the disability rights nonprofit, Paraquad.“There are lots of skilled nursing facilities, but they can make their own decisions on who they admit and who they don’t admit,” Wehmeier said. “And although it doesn’t affect thousands of people, the people that it affects, it affects substantially.”
Advances in medical care are allowing people like Hegger to live longer, with more complex conditions. But Missouri’s network of nursing homes that take care of patients discharged from the hospital maintain that they can’t afford to meet the needs of patients needing ventilators with the payment provided by MO HealthNet.
“You have to have your staff specifically trained to take care of ventilator patients,” said Missouri Health Care Association spokesperson Harvey Tettlebaum. “You have to have the equipment available to take care of these folks.”
Accepting patients without being equipped to care for them, Tettlebaum said, is irresponsible. The suggestion that patients are refused because they pull in less money, he argued, is wrong.
“You’re putting the cart before the horse,” Tettlebaum said. “If you’re can‘t meet the needs of the resident because you don’t have the resources, then you shouldn’t be taking them.”
The numbers, however, show a clear disparity between Missouri and its neighbors. MO HealthNet pays nursing homes about $308 a day for patients who use a ventilator. In Iowa, the rate is two times that; between $606 and $640, according to the Missouri Department of Social Services. In Illinois, providers receive just over $374.
Ironically, Missouri’s Medicaid program still pays those higher costs to out-of-state providers when they take in patients from Missouri. But changing Missouri’s reimbursement rate to be more in line with other states would likely require action in the statehouse.
Missouri’s Department of Social Services did not make Joe Parks, the director of the Medicaid program, available for comment.
Washington University health economist Tim McBride, said the issue has not come up during meetings of the MO HealthNet Oversight Committee, which he chairs. In general, he said, Missouri’s Medicaid program pays providers less than most states for many services to keep costs down.
“When we reimburse lower than other states, it creates a ripple effect,” McBride said. “It’s sad, but it does speak to an access problem… When you pay so low, providers aren’t going to come out.”
In practice, this means that patients like Tara Hegger must live far away from home to secure a placement in a nursing home.
“I want people to know that this is bigger than just me. People are being shut up and shut out and thrown away from the rest of the world,” Hegger said. “I would give anything to get home and be close to my family and friends.”
Follow Durrie on Twitter: @durrieB.
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