TRACY CITY, Tenn. - Donnie Higgins can speed up her driveway, her electric wheelchair spitting pieces of gravel back as she goes. She moves the chair with toes on her right foot.
This makes her smile.
So do the flitting hummingbirds that visit the feeder on her front porch, bumblebees that seem to dance above a wide green lawn and the cool April breeze blowing off the Cumberland Plateau and across her face as she sits outside the Tracy City, Tenn., home she helped build on her grandfather's land.
What the 62-year-old can't do is all of the other things that most healthy people can - brush her teeth, change her clothes, feed herself or even talk.
She's had ALS, also known as Lou Gehrig's disease, for 17 years. For about five years she's had a nurse by her side to hoist her into a sling to use the bathroom, to clean the tracheotomy tube in her throat and to hook up the ventilator at night so she doesn't suffocate in her sleep.
Two years ago TennCare told Higgins that it no longer would pay for that nurse, that she would have to move into a nursing home.
"I believe it will actually kill her," said Higgins' sister, Ruth Sanders, 63.
Since then the decision has been appealed by Higgins, reversed by TennCare, then reimposed by TennCare.
Last month, TennCare representatives issued a directive to Higgins that raised questions about its handling of severely disabled patients. It so incensed an administrative law judge in Chattanooga that he ordered the agency to withdraw its motions, and he threatened to report the TennCare attorney's conduct and require her and the agency to pay Higgins' legal expenses.
A BRIEF BATTLE
In February, Higgins, Sanders and a nurse sat in a room with the judge as a TennCare lawyer in Nashville participated over the phone.
The conference call didn't go well.
The TennCare lawyer couldn't reference certain documents. Higgins' Legal Aid representative later asked to have an in-person hearing with the TennCare lawyer and got a favorable ruling from Administrative Law Judge Anthony Adgent.
TennCare attorneys later filed motions stating that they were not required to be physically present for the hearing and that Higgins had to have a lawyer, not a paralegal, to represent her.
Adgent ruled against those motions, citing federal health care laws allowing paralegal representation, a common practice, and the constitutional right of due process regarding the in-person hearing, according to court documents.
That's when things got more complicated.
TennCare attorney Leslie Bruce notified Higgins that a new hearing had been scheduled for April 1 in Nashville and she was required to attend.
This likely would have moved Higgins' hearing out of Adgent's control.
The judge didn't agree that was in Higgins' best interest.
"(Bruce's) position appears to be that it is more of an 'inconvenience' for its attorneys (all of whom I assume to be much less handicapped than the Petitioner) to travel to a sight [sic] outside of Nashville than to place the requested case hearing on the routinely scheduled Chattanooga docket," Adgent wrote in his motion filing.
Adgent denied and dismissed Bruce's motions and ordered her and TennCare to pay court costs. He also threatened to report her and her managing attorney, Robert Hagan, to the Board of Professional Responsibility for the attempts to "skirt" his orders.
"This court will not consider nor waste time listening to baseless arguments supporting a meritless motion so obviously filed to defy and skirt the previous order," Adgent wrote.
Seven days later Bruce withdrew the motions. TennCare officials declined to comment on the case, citing privacy laws.
TennCare Director of Member Services Tracy Purcell said TennCare began limiting its attorneys' travel about a year ago to save money.
She said the vast majority of TennCare appeals traditionally have been handled through telephone conference. Even when an in-person hearing is requested and all parties are with a judge or in the patient's home, the TennCare attorney usually participates from the agency's Nashville office.
Purcell could not give an estimate of savings from limiting travel. But she said travel also affects productivity because attorneys can't work on other cases while they are away from the office.
She estimated there were 2,800 hearings between March 2010 and this March, including requests for in-person hearings. In only one case did a judge require the TennCare attorney to be present in person.
But some attorneys for TennCare enrollees question the practice of TennCare attorneys participating in appeals hearings only by phone.
Christopher Coleman is an attorney with the Tennessee Justice Center, a nonprofit that helps low-income and needy families.
"We've been worried and kind of monitoring for a while whether people's due-process rights to an in-person hearing have been granted," Coleman said in a recent phone interview.
Coleman said appealing a TennCare's decision becomes more of a burden when the enrollee is homebound or severely disabled, and portions of the Americans with Disabilities Act come into play.
"I don't think we know enough to say there is a trend, but we are aware of a significant number of instances with people who are housebound who simply can't leave their homes to come to a hearing," he said.
"I think TennCare definitely needs to educate their attorneys that people have a right to in-person hearings and this type of gamesmanship can't go on," he said.
Purcell said TennCare meets the need of its enrollees through the teleconferences.
"We don't believe we have a due-process issue in our current procedure and over the past issue where we have not traveled," she said.
As Sanders and Higgins wait for a new hearing date, Sanders worries for her sister.
"She gets nervous the day before these hearings," she said as she stood in the yard watching Higgins roll up and down the driveway.
She has researched the nursing home TennCare chose for her sister. It's in Maryville, nearly four hours away. Most of Higgins' family lives nearby; Sanders is less than two miles up the road.
Distance isn't the only concern.
After researching state and federal ratings on the home, Sanders said it's likely that certified nurses would be able to spend only about three hours a day with her sister.
It takes longer than that for Higgins to start the day, she said.
If her tracheotomy tube isn't cleaned or she has trouble breathing, there isn't an easy way for her to tell someone.
Higgins answers questions through ever-so-slight head nods and shakes or raised and lowered eyebrows. Her sister or a nurse can help her communicate exact words using a laminated sheet with rows of letters and numbers.
If Sanders needs a word from her sister, she first points to a row and asks if the letter is in that row. When she finds the correct row, Sanders' finger traces along until she touches the right letter. It takes a long time to spell a single word.
When asked what she felt when she finally got a full-time home nurse after nearly 10 years of intermittent help from family, friends and others, Higgins spelled out a three-letter word through her sister - J-O-Y.