published Sunday, April 24th, 2011

Woman with ALS fights state

Ruth Sanders, standing, uses an alphabet card and points to a letter to communicate with her sister, Donnie Higgins, at her home in Tracy City, Tenn.
Staff Photo by Tim Barber/Chattanooga Times Free Press
Ruth Sanders, standing, uses an alphabet card and points to a letter to communicate with her sister, Donnie Higgins, at her home in Tracy City, Tenn. Staff Photo by Tim Barber/Chattanooga Times Free Press

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.

LEGAL QUESTIONS

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.

WHAT’S LOST

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.

about Todd South...

Todd South covers courts, poverty, technology, military and veterans for the Times Free Press. He has worked at the paper since 2008 and previously covered crime and safety in Southeast Tennessee and North Georgia. Todd’s hometown is Dodge City, Kan. He served five years in the U.S. Marine Corps and deployed to Iraq before returning to school for his journalism degree from the University of Georgia. Todd previously worked at the Anniston (Ala.) Star. Contact ...

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Legend said...

All of that money they're spending on lawyers to fight could be well spent on better medical care. The TennCare attorney is likely racking up hundreds of thousands of dollars that could pay for five or six nurses. No wonder TennCare keeps coming up short.

April 24, 2011 at 2:54 a.m.
ersanders said...

Well said. Wonderful report.
Thanks Todd

Ruth Sanders for Donnie Higgins ALS patient

April 24, 2011 at 4:31 a.m.
inquiringmind said...

Easter Sunday, a good time for those lawyers in Nashville to read the letter of James, then and look in the mirror to examine themselves and wonder if they have "got religion."

April 24, 2011 at 7:54 a.m.
mdavis said...

Although I completely appreciate the sentiment of the family in this article, unfortunately only the wealthy can afford 24 hour personal nursing care. I am sorry for the situation, but if the family cannot afford to pay for the nursing care, the taxpayers have to foot the bill and that type of care is just not realistic. The heart wants to give this woman all the care in the world, but the head knows this is just not the reality of the situation.

April 24, 2011 at 10:36 p.m.
ersanders said...

To mdavis. We pay our taxes and our taxes go for alot of stuff that is much less necessary. You just might be the next person in this situation.

April 25, 2011 at 12:11 a.m.
ersanders said...

To Mdavis- maybe you think if we need more than a few hrs. of care to survive ,that we should die? TennCare wants to put Donnie in a 2 star rated facility that is 3 to 4 hrs away from any family member. I have visited several nursing homes. If you’re not there on a daily basic the patient does not get the right care. I have recently found that this facility allowed a patient that was a sex offender to abuse a patient. If this happened she could not yell, or alert anyone. She is on a ventilator and has a trach and feeding tube & requires 24/7 care. Because of the 3 hrs & 3 min. of care per patient including certified & uncertified care at the nursing facility she will not get “adequate” care. This is not enough for Donnie’s survival. The nurse gets Donnie up ea. morning & puts her to bed by use of hoyer lift, ,connects her to a ventilator ea. night, cleans & takes care of trach, suctions her night & day, The nurse bathes her, puts her on the potty by hoyer lift, If left unattended she will fall off the potty or hoyer & be injured & may bleed to death, communicates with her with an ABC board, make sure her chair works & calls for maintenance when needed, spoon feds her ea. meal since she can’t feed herself, crushes her medicine & admin. thru feeding tube, turns her radio & TV to desired station, brushes her teeth, orders medicine & supplies, makes doctor & lab appt., keeps doctor & family updated, as well as other duties. These are needs anyone would expect to be full-filled if in same situation. We all like to breathe, get up ea. day, go to the restroom, clear throat, bathe, brush teeth, communicate, eat, receive medical attention & move about. These are things the nurse help her with so she can live & have a life that is closer to normal. Nursing homes don’t have the staff for the needs in Donnie’s situation. She will have to lie in bed in a mess all day not being taken to the potty. She will have bed sores or pneumonia from being wet & her self respect taken away. She will be fed through a feeding tube taking one of the only joys she has left, which most enjoy every day. She will not get suctioned as often as needed exposing her to a life threatening situation. With family so far away Donnie will go into deep depression. If her ventilator malfunctions or oxygen get’s disconnected she will smother to death. She can not talk, walk or feed herself, but she has a clear mind & loves to be treated with respect & dignity. Before she got sick she practically built her home and to take her from it would be hard on her health wise & mentally. She has a specially built wheel chair that has a toe pad so she can operate it. She communicated that to take her from her home or her wheel chair (her only means of independence) she would die. Family members have health situations & it would be hard for them or the limited nursing home staff at any nursing home to provide the care for Donnie that she needs.

April 25, 2011 at 3:20 a.m.
Mdove said...

Donnie has worked all her life until this disease attacked her body and made her a prisoner .This could be someone you love .The family took care of her for the first 12 years .Could you pay for nursing for 17 years .If she was in a prison she would get the best of nursing care . mdavis you come across to me as a totally heartless person . We can give 25 Million to Libya but not take care of our own? There are a lot of things I could say here but I will leave you in the hands of God . Maybe you could walk a mile in her shoes but then she can't walk can you?

April 25, 2011 at 2:58 p.m.
bcsurvivor2006 said...

***mdavis,how in the world can you even voice such harsh words?I worked in a nursing home for 3 years and I honestly wouldn't put my Pomeranian in one.I would have 30 patients.My work day started at 5:45 am and by 7:00,I had 4 showers to do plus dressing all my other patients and getting them to the dining area,feeding them while trying to answer call lights.I left many times crying because despite skipping my lunch and breaks,I still have time to provide the care they deserved.Someday,your eyes will be opened.You see,things have a way of sneaking up on you.One day I was a 33 year old active and healthy woman and the next I was a 33 year old breast cancer patient.The chemo ate my body up,my teeth crumbled and fell out,I lost both breasts,my hair and nearly my life.I was left with congestive heart failure,lymphedema,neuropathy,high blood pressure,Type 2 Diabetes and constant nerve pain,joint pain just to name a few.These people don't want to suffer the way they have to day in,day out.They didn't have a choice.We had everything else taken away and now you just want to shut us up in nursing homes,out of sight and out of mind.We get the short end of the stick in all aspects of life and money don't mean a thing to me.You can't comprehend the facts right now because you have no clue what life is really all about.Just remember,everybody gets sick and if you're lucky enough,you will get old and I guarantee you won't be knocking down the doors to sign yourself in or your family either.Show some compassion,we face enough ignorance as it is.


May 9, 2011 at 5:22 a.m.
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