Muscular Dystrophy Won't Stop Christin Bates from Theology PhD, but Texas Medicaid Might
Christin Bates, in her apartment at Dallas Theological Seminary, where she is pursuing a doctoral degree.
Christin Bates is an anomaly. She is the only woman in her doctoral program at Dallas Theological Seminary, a conservative institution in a field -- evangelical Christian scholarship -- that is slightly more progressive on gender equality than 17th century Massachusetts. When she completes her dissertation in five years or so, she will become the 11th female theological studies PhDs in the the seminary's 90-year history, at which point she hopes to become one of the only female evangelical theology professors in the country.
Bates, 31, is also 80 pounds, can't use her legs, and needs help getting dressed, going to the bathroom -- basically everything except brushing her teeth and putting on makeup. As an infant she was diagnosed with spinal muscular atrophy, a form of muscular dystrophy that has left her intellect untouched, capable of digesting Greek, Latin, Hebrew and dozens of dense monographs on premillenial dispensationalism, but rendered her body frail and all but useless.
Dallas Theological Seminary has accommodated her physical limitations graciously. The school put her in a ground-floor apartment separated from campus by a little-traveled side street, with a second bedroom to house a caregiver (currently her mother, on a much-extended visit) and made it so Bates can open her unit with a handheld clicker, like the key fobs that unlock car doors.
The state of Texas has been less pleasant to work with. For the past eight months, Bates has waged a frustrating and so far futile battle with the Texas Health and Human Services Commission, its contractors and sub-agencies over what level and type of care the government should be obligated to provide her.
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Bates wants Texas to pay for round-the-clock, in-home care while she finishes her studies. Texas would rather put her in a nursing home, a proposition Bates finds insulting. "Am I personally OK with sitting in a corner somewhere collecting a check from the state to just barely survive, and that's my existence? Absolutely not."
Bates insists she isn't looking for a handout, merely asking the state to do it's job. In Olmstead v. L.C., the U.S. Supreme Court frowned on institutionalizing disabled persons and ruled that states must seek alternative treatment settings if at all possible. And Bates has received help before, albeit in more limited form. A few years ago while she was pursuing her master's degree at a seminary satellite campus in Houston, Vocational Rehabilitation, a state program aimed at helping disabled Texans learn job skills, paid for personal-care attendants to accompany Bates on the trip to campus from Beaumont, where the family had recently settled because it was roughly equidistant to campus and her father Carter's marine engineering job in Lake Charles, and assist her with lunch, bathroom breaks and the like while she was on campus.
Bates expected that VR would cover her care, or at least a portion of it, once she arrived in Dallas for her PhD. She knew of others who had received round-the-clock care from VR while they were in college, including a fellow muscular dystrophy sufferer who now works as a teacher in Houston. If VR couldn't help 24/7, Bates assumed Medicaid would fill in the gaps. In the meantime she would be cared for by her mother, who planned to return to Jacksonville, where the family now lives, by Thanksgiving at the latest.
But when Bates arrived in Dallas last August, VR denied her request on the grounds, she says, that it considered her sufficiently qualified to get a job. Medicaid, when she finally enrolled and underwent the requisite battery of evaluations and assessments, would offer just over 30 hours of in-home personal care per week, which, for someone in Bates' condition, is scarcely better than nothing.
And so, for the past eight months, Bates has juggled the time-consuming demands of first-year doctoral work with a master's class on Texas' state health programs -- DARS, DADS, Medicaid, STAR+PLUS -- which rival her theology texts in their inscrutability. The academic work she has managed just fine. During a recent seminar, she led a round-table discussion of Mark Noll's The Scandal of the Evangelical Mind. Her professor and mentor at the seminary, Glenn Krieder, says Bates has proved herself more than capable of handling the workload.
Navigating the state's health bureaucracy has been another matter. Despite countless hours on the phone with representatives of her Medicaid provider, Superior Health Plan, and a barrage of calls and letters to state officials and politicians, there has been only one positive development: after U.S. Senator John Cornyn's office inquired about her case with HHSC, the number of weekly personal-care hours was increased to 47, which is still effectively worthless. The state remains willing to pay to put her in a nursing home.
Stephanie Goodman, a spokeswoman for Texas HHSC, says the state's Medicaid providers must comply with federal "cost neutrality standards." So, Superior is able to pay for in-home care up to a limit -- in Bates' case 47 hours -- but can't exceed that. "Over and above that, it would actually cost the state more than it would in an institutional setting" and thus would violate the cost-neutrality rules. A few states, Goodman says, have programs that can supplement in-home care hours for people like Bates, but Texas isn't one of them.
Bates is frustrated, but she doesn't plan on giving up. She and her family are accustomed to plowing through bureaucratic roadblocks. When she was entering middle school, the Jacksonville school district wanted to send her to the campus that had been designated for kids with severe mental and physical disabilities, which was a 90-minute bus ride each way. The Bates family fought -- and eventually succeeded -- to allow her to go to the neighborhood school.
"The system's broken. I get it," Bates says. "This goes back a long way in my life. People are not going to say 'We don't want disabled to be a part of our community.' .. .What they are doing is they're tying my hands as a disabled person and they're saying, 'Sure we want you to be part of the community, but we'll make you do it in this nursing home."
Correction: This article initially stated that Bates is the only woman pursuing a PhD at Dallas Theological Seminary. In fact, there are 13 women currently pursuing doctorates at DTS.
Send your story tips to the author, Eric Nicholson.
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