A kindergarten teacher, completely paralyzed and dependent on a ventilator is running out of time to find someplace to care for her. As Five On Your Side's PJ Randhawa found, she's one of hundreds of similar Missouri patients.
Paralyzed and now helpless.
"I don't want to be shipped away and kicked out by my own state," said Tara Hegger, a quadriplegic, and ventilator patient at Mercy Hospital.
Hegger's fear is real.
She's on a ventilator and paralyzed. At 13, doctors told Hegger her life would be short. She was diagnosed with Von Hippel-Lindau syndrome, a condition that causes tumor growth.
Mercy Hospital, where she's been living for several months, is now saying she needs to find a new facility because Medicaid isn't footing the bill anymore. But in Missouri, disability advocates say finding any care as a ventilator patient is a problem.
"There's no place for them to go," said Aimee Wehmeier, President and CEO of Paraquad. "No facility in Missouri has elected to provide that service. there's concerns about liability and staffing issues."
Across town — in a home instead of a hospital room — Sharon Hanewinkel, 69, spends each day taking care of her ailing husband, Steve. He's suffering from ALS, and has been on a ventilator for more than a year.
"I told him I'd take care of him as long as I could, but I've had breast cancer, a bypass," said Hanewinkel.
Hanewinkel worries her husband will have nowhere to go if she can no longer care for him.
"It's been over a year taking care of him. But just in case, that I can't keep going, if something happens to me, what happens to him?" said Hanewinkel.
Dr. Tim McBribe — chairman of the state's Medicaid Oversight Committee, or MOHealthNET — says the problem is money.
"We don't pay the providers very well so they're not that thrilled about taking Medicaid patients. Nationwide, there's estimates of about 45 percent of providers saying 'I don't want medicaid patients,'" said Dr. McBride.
With no proposed plan to expand Medicaid , both Tara and Steve may soon be forced to seek care outside of the state and away from their loved ones.
"There needs to be a place for individuals to go. Right now their only option is to warehouse our citizens of Missouri to other states," said Wehmeier:
"I think about her all the time, she's too young for that. there's still hope for her," said Hanewinkel.
"My wish to is to have my freedom back, have a wheelchair. I just wish I could go home," said Hegger.
According to her caretakers, the cost to keep Hegger at home would be upwards of $14,000 a month- something her family can't afford. But we've put in calls to lawmakers about Tara and others like her. as soon as we hear from them, you'll hear from us.
For more information on Tara's case, visit HelpTara.org