Brook Waddle was 17, a cheerleader, homecoming queen and honor student at Landrum High School when a tragic accident turned her promising future into a nightmare in 2005.
Yet the crash that left her a quadriplegic and the two years she spent in hospitals did not prepare her for a battle with state agencies to get the care her doctors ordered.
For nearly a decade, her lawyer has taken her case before hearing officers and judges to ensure Waddle receives the services her doctors say she needs.
But officials with the state Department of Disabilities and Special Needs, which coordinates services for those with spinal cord injuries, and the state Department of Health and Human Services, which approves Medicaid expenditures, repeatedly have refused or failed to approve the nursing care originally ordered by her doctors to allow Waddle to survive in her mother’s home, according to records in the case.
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Meanwhile, her case remains frozen in a legal limbo in the courts while her mother faces foreclosure and Waddle sinks into depression, convinced no one in government is listening to her.
“I would love to speak with the man who continues to hold my case hostage,” Waddle told The Greenville News using a speech-generating device.
A spokeswoman for DHHS, the only agency named as a defendant in Waddle’s legal actions, said the agency would not comment on her case because of federal privacy laws concerning medical information. A spokeswoman for DDSN also declined comment on the case.
Patricia Logan Harrison, Waddle’s attorney, said years of legal battles have only brought more pain to Waddle’s life.
“I cannot put into words the pain and suffering this young woman has endured ... weeks in the hospital due to lack of nursing ordered by both her physician and the DHHS hearing officer,” she said. “She is home-bound now, suffers from terrible depression that was not there before dealing with DDSN and DHHS.”
‘She was just a really happy girl’
Waddle’s life in 2005 appeared golden.
The statuesque blonde, at 5’11”, was a blur of activity and smiles.
Waddle played on her school’s volleyball and basketball teams, threw discus for the track team, was a cheerleader and an honor roll student.
She was also a homecoming queen interested in medicine who dreamed one day of becoming an anesthesiologist.
“She smiled all the time,” recalled her mother, Sandra Waddle. “She was just a really happy girl. Very positive.”
But that all changed on Sept. 2, 2005, when she and two other cheerleaders headed to the high school to catch a bus to the school’s away football game.
Waddle was wearing a seatbelt and sat in the front passenger seat. The car ran off the road and flipped.
Two of the girls were ejected from the car but survived the crash. But Waddle, strapped to her seat, suffered paralysis when the roof collapsed.
She was taken first to Spartanburg Regional Hospital, then to the Shepherd Center in Atlanta, a private, nonprofit rehabilitation facility for those with spinal cord injuries. The following year she was transferred to the Medical University of South Carolina, then sent to Mt. Sinai Hospital in New York for an operation and back to MUSC again, where she was discharged in May 2007.
While Waddle was in New York for the surgery, DHHS notified her it was terminating her Medicaid coverage because she was no longer a resident of the state, said Harrison, who said she became involved with Waddle then and convinced the agency Waddle was still living in the state.
Paralysis did not suppress her spirit – at least at first.
While at the Shepherd Center, she received a full scholarship to study psychology online at Fairleigh Dickinson University.
“Even though I am physically disabled, I am just the same mentally as any of my fellow classmates,” she wrote in a release for the Shepherd Center.
She received a hero’s welcome home in 2007, a YouTube video showing her smiling in the back of an open ambulance as the street was lined with well-wishers.
Lawmakers passed a resolution in her honor that year.
“It is the trials of life that most clearly authenticate to others the stuff we are made of, and Brook Waddle, of Landrum, in response to adversity, has proven her own character to be of the very highest quality,” the resolution states.
She was even able to watch her cheerleading squad at practice.
But her medical condition took its toll.
She has a permanent tracheostomy, a breathing through a hole at the base of her throat. She has to be suctioned throughout the day because a mucus plug could prove deadly. She speaks in a whisper because of injury to her larynx, though she can communicate using a speech-generating device that allows her to form words with the scan of her eyes on a computer screen.
Waddle suffers frequent bouts with pneumonia as well as grand mal seizures. She must be repositioned in her hospital bed occasionally because of a history of decubitus ulcers. She also has suffered from frequent urinary tract infections and kidney stones, according to records in the case.
She has contractures and her arms cannot be straightened, according to the records. If her arms are straightened, her skin will break.
Her daily medicines include those for seizures, depression, to assist with bowel movements, neuropathy pain, for the prevention of muscle spasms, bladder spasms and to relieve migraine headaches, the records show.
Her treating physician in 2007 ordered 112 hours per week of nursing care, 28 hours of which was to be provided by a registered nurse, according to records of her appeal. He ordered attendant care when a nurse was not present. There are 168 hours in a week.
But that level of care was never approved, the records show.
Waddle’s initial service coordinator at DDSN ordered 98 hours per week of all care, including 14 hours by an RN, 56 hours by a licensed practical nurse and the rest by attendant care workers.
The agency denied her nursing services request, arguing that her nursing care was limited by the waiver program for head and spinal cord injuries, according to records in the case. “Waivers” allow those with disabilities to receive services at home or in the community paid for by the federal government through Medicaid. Currently 830 people in the state receive head and spinal cord injury waiver services, according to DDSN.
The notice to Waddle was sent to her home although she was still in a hospital.
Her treating physician then ordered 84 hours of LPN care and 24 hours of RN care, for a total of 108 hours, with attendant care whenever a nurse was not present.
Again, DDSN rejected the order, noting that it would exceed the cost of a nursing facility level of care, the records show. But it did not include any analysis or justification for the argument. And it once again was sent to where Waddle wasn’t, an HHS hearing officer concluded in 2013.
‘She’s worn down emotionally’
In April 2007, Waddle appealed the denial of services. Following her discharge from MUSC, Waddle wrote to DDSN and DHHS that she “reserves all rights.”
She eventually pursued administrative appeals. The following summer, while her appeal was pending, the state reduced the service hours to 87, with 32 hours of LPN care, 48 hours of attendant care and seven hours of respite care, designed to allow a parent to relax, sleep or run errands.
Linda Veldheer, then head of DDSN’s head and spinal cord injury division, testified that in July 2008 there was a limit on services of 60 hours per week of LPN care or 45 hours per week of RN care or a combination not to exceed $1,425 per week. According to a hearing officer’s order in the case, however, Veldheer under cross-examination appeared to contradict herself, saying the state did not have weekly limits then.
“The petitioner was still not receiving RN services due to the service coordinator’s inability to locate an RN and the mistaken idea that the RN could only provide 2 hours of care per day,” wrote Elizabeth Hutto, then a hearing officer in November 2013 and now a deputy director at HHS.
In July 2009, while the appeal was pending, Waddle’s nursing hours were again reduced, this time to 22 hours per week, while attendant hours were increased to 48 hours and 12 hours approved for respite care, records show.
In 2011, the hours were adjusted again, with an increase in LPN care to 36 hours and a decrease in attendant hours to 36 hours, according to the records.
In an attempt to settle the dispute, records show, state officials offered in 2013 to increase Waddle’s service hours to 83-84 hours per week of nursing and attendant care.
According to Hutto’s review, the DDSN nurse who determined the hours of service for Waddle had never met her or been to her home. When the service coordinator was asked whether Waddle should have more hours, she told Hutto her opinion “is not relevant.”
Hutto wrote that DHHS had not presented any medical witnesses with direct knowledge of the case.
Waddle testified in 2009 that she preferred to stay at home and would “rather die” than go to a DDSN regional center, records of the hearing show.
Hutto ruled after reviewing documents and hearing testimony that the agency’s notices to Waddle were improper, as were the reductions in services. In fact, she concluded that the state had violated her due process rights.
It was one of many problems Hutto found with the way the state had treated Waddle.
For instance, when Waddle’s parents separated after she came home from the hospital, the state should have done a new assessment in her case but did not, she wrote.
The state did not do a nursing review 30 days after Waddle’s hospital discharge. The state had not shown any evidence one of its physicians had ever reviewed Waddle’s medical records, Hutto wrote.
And the state should have delivered the benefits ordered by Waddle’s physician while her appeal was pending, Hutto found.
“Based on the testimony of witnesses for both parties, an RN should have been involved in the petitioner’s care on at least a weekly basis due to the complexity of the petitioner’s medical needs,” Hutto wrote in 2013, six years after Waddle began her appeal. “The petitioner has been maintained at home with fewer services than those to which she was entitled due to the extraordinary efforts and dedication of her mother.”
She also wrote that Waddle’s service coordinator falsely told the family that her mother could not be paid for attendant care once Waddle became an adult. Hutto ordered Sandra Waddle to be paid $140,148 for the care she provided.
But while Waddle’s family was pleased with most of the order, Hutto also ruled that she did not have the authority to exceed the current service hours limit in the waiver program.
Harrison said had she accepted the order, it would have negated the point of the appeal.
Both sides appealed. Three years later, there has been no change in the case.
“DHHS has refused to comply with the order of the hearing officer, leaving petitioner without medically necessary nursing services and attendant care, and her mother without compensation that was awarded in 2013,” Harrison wrote in an appeal this year to the South Carolina Supreme Court.
Harrison filed an emergency petition with the state Administrative Law Court in June 2014 to force the state to comply with Hutto’s orders. But to date, Harrison said, the court has not acted upon the petition, services have not been provided and no final state administrative order has been issued, more than nine years after Brook began her appeal.
Waddle currently receives 70 hours of approved care per week – 34 hours of LPN care and 36 hours of attendant care, according to her mother, who had to quit her job as a pharmacy tech to care for her daughter after the accident. She works part-time now, she said. Respite care, she said, has been increased to 60 hours a week, though there are restrictions on when she can use it.
“She’s gone from cheerleader, homecoming queen, everything ahead of her, to coming home from Shephard, still not being able to walk but able to have a life and coach cheerleading and be with her friends, to the point where this is her life now,” Harrison said of Waddle’s largely homebound state.
On a recent weekday afternoon, Waddle lay in her hospital bed in a room adorned with Marilyn Monroe photos and posters. She’s also a fan of sock monkeys and squirrels. A towel covered her head to help her stay warm.
Harrison played a video of Waddle’s homecoming for a visitor, prompting tears to roll down Waddle’s face. She remains hurt that her high school friends have faded from her life, said her mother, who has seen her own friends distance themselves.
“This nursing thing has really worked on her,” Sandra Waddle said. “She’s worn down emotionally.”
Waddle is more than annoyed that her pleas are not being heard by those in government.
“We’re people too,” she said as her mother interpreted her whispers. “We’re normal people just like everybody. I might be handicapped but I’m handicapable. They can’t continue to ignore us.”