Health Care Story - 11/10/10

Mary and Joe’s foster son, Timmy, is severely autistic and intellectually disabled. Timmy is almost completely nonverbal and can use very limited sign language. Nevertheless, he loves music, watching Barney, and playing on the swing in his yard. Timmy also has dysphasia, esophageal problems, and reflux problems that require regular suctioning. Timmy’s doctor prescribed speech therapy to help him communicate better, but many speech therapists would not treat Timmy because he was too difficult.
      
Then Timmy’s parents found Susan Hock, a speech therapist at the Parent-Child Services Group in Knoxville, TN. Therapist Hock stuck with Timmy, and he started showing signs of improvement – sitting still, paying attention, correctly using some sign language, and playing simple computer games. And Timmy likes working with Susan. Now that she has worked with Timmy for several years, they have an established relationship, which is vital for Timmy because he has trouble meeting and working with new people. Due to Susan’s hard work with Timmy, he was able to have his feeding tube removed, reducing his risk of feeding-tube related infections.
     
Despite all of Timmy’s progress, TennCare said that Timmy would have to switch to a new therapist. TJC worked with the family to keep getting Timmy the care he needed. After TJC filed an appeal and sent TennCare letters of support from Timmy’s medical providers, TennCare decided the appeal in favor of Timmy and his parents – he could keep getting therapy from therapist Hock.
      
Mary said afterward, “I was very pleased with the results of the appeal…I also appreciate the concern and care that Susanne showed us.”
      
The Tennessee Justice Center works to help children get the care they need. We accept calls from providers as well as parents. If you know a child who is waiting for care, call us.

TJC 2010 Mother of the Year - Trina Parker

Eleven-year-old Darius “never meets a stranger,” says his mom, Trina, of her outgoing 5th grader.  But last fall, chronic headaches and severe weight loss began forcing him to miss school and football practice.  Darius was diagnosed with brain cancer.  Trina had to cut her work hours in half to care for him, leaving both her and her son ineligible for her employer’s health insurance.

Darius and Ms. Parker didn’t think things could get much worse.  Then, TennCare told Darius he would lose coverage the day before he was to have his brain tumor removed.  Without insurance, the hospital would not do the operation.  Ms. Parker asked the Department of Human Services (DHS) for help, but nothing happened. Then, a social worker told her about the Tennessee Justice Center.

Trina called TJC, and we determined that TennCare had miscalculated the family’s income and that Darius should stay on TennCare.  We helped Ms. Parker file an appeal, allowing Darius to keep TennCare during the appeal.  The surgery went smoothly, and Darius went home with his Mom about a week later.

But her fight wasn’t over yet. Darius’s cancer was worse than doctors had thought. A few days before Darius was scheduled to return to the hospital for chemotherapy, DHS told Ms. Parker they were going to close Darius’s TennCare case. Ms. Parker called TJC again. We wrote the Case Manager a letter reminding him that DHS rules required him to keep Darius’s case open.

DHS kept the case open, and later approved Darius’s TennCare application. He is currently undergoing chemotherapy and his prognosis is good.  Ms. Parker said that despite everything, “Darius is in good spirits. The doctor explained everything and he understands that the treatment is to get rid of the tumor,” said Ms. Parker. “He has a really good family-based support and church.”

Ms. Parker is adamant that other families should not have to go through what hers did to get health care.  She said, “I pray that we can work together to fix our country’s health care.”

TJC 2010 Mother of the Year - Evelyn Human

When TennCare decided to sharply limit home health care for all adults on the program in the fall of 2008, Evelyn Human decided that she was not going to let her son’s care be cut without a fight.  Her son, John, is mentally retarded.  At 25 years old, he has the mental capacity of a small child.  He requires constant care, almost continuous suctioning to keep his airways clear, and assistance with all aspects of his life.  He had been receiving enough in-home nursing care from TennCare for his mother to work and provide for the family.  TennCare’s new rules, however, said that his in-home nursing hours would be capped at 35 hours per week.  With only 35 hours, John would be left unattended for long stretches, and could aspirate from lack of suctioning.

Instead of providing the care John’s needs to stay safe, the MR Waiver, a supplementary program John is enrolled in along with TennCare, only agreed to provide just 4 hours of care per day.  Waiver representatives told Ms. Human that this care would be delivered in 15 minute intervals throughout the day – for a total of 16 separate visits each day!  Not surprisingly, no nursing agencies agreed to provide care on this schedule.  On the day John’s care was set to be reduced, he received no care at all through the Waiver.  Ms. Human was unable to work due to the constant care she had to provide. 

Ms. Human immediately contacted TJC, and we contacted Waiver personnel to discuss the problem.  When that did not fix the problem, TJC contacted attorneys for the State to alert them to the violation of John’s rights.  The attorneys agreed, and John began receiving his supplementary care.  But there were still long gaps throughout the day when John would be alone.  Ms. Human appealed and asked for more nursing hours.  TJC located a pro bono attorney, Leslie Muse, to represent the family.  TJC helped train Ms. Muse in techniques for winning TennCare appeals.  After a hearing lasting several hours, the judge agreed with Ms. Human and John’s doctors that his needs make constant care medically necessary. 

Because of Ms. Human’s advocacy, John is now receiving the skilled care he needs to safely live at home.  We honor her persistence and dedication as a 2010 Mother of the Year.

TJC 2010 Mother of the Year - Patricia Womac

Ms. Womac’s daughter, seven-year-old Hannah, suffers from Rett Syndrome, a rare and devastating disorder of the nervous system that renders her incontinent and unable to speak or walk on her own.  Rett Syndrome occurs mostly in girls and is occurs in one in every 10,000 - 23,000 female births.  Due to these conditions, plus difficulty breathing and frequent seizures, Hannah receives nursing care through TennCare.  Even with nurses, Hannah’s mother cares for her full-time – lifting, bathing, and feeding Hannah and fighting to make sure she gets what she needs. 

Hannah’s caregivers take joy in her small pleasures and accomplishments.  She loves to watch cartoons including “Miss Spider’s Sunny Patch Kids” – a show about a family of bugs who live in the Hollow Tree.  Hannah’s mom thinks that Hannah is drawn to the way the characters speak and their voices.  She also enjoys listening and moving to country music.

Last fall, Ms. Womac received a notice from the TennCare HMO saying that it would no longer cover the nursing care Hannah needs to be safe.  The HMO called Hannah’s doctor and pressured him into reducing his order for nursing.  Then they cut Hannah’s care.  When Ms. Womac learned about the reduction, she immediately filed a TennCare appeal to keep her daughter’s home health hours.  Ms. Womac called TJC, exasperated, and asked for help.  She explained that every few months, Hannah’s HMO tries to reduce her nursing.  Each time, Ms. Womac must go to court and each time, the judge orders that Hannah’s needed home health care be provided.  To stop this exhausting cycle, TJC wrote a letter to the state.  The state’s lawyers wrote back, agreeing, and Hannah’s nursing services have continued.

Ms. Womac’s struggles to provide care for her medically fragile daughter are ongoing, as is TJC’s advocacy.  In January 2010, Ms. Womac called TJC because she needed help getting Hannah’s wheelchair fixed.  The repair company picked up the broken chair, but provided the family with no temporary replacement.  Hannah was left for a week and a half without a wheelchair, causing her to miss a doctor’s appointment since Ms. Womac had no way to get her there.  When the chair did come back, it was missing head and arm supports.  TJC wrote two letters to the state’s TennCare attorneys and got Hannah the safe wheelchair she needs. 

Ms. Womac’s tenacious dedication to her daughter is helping Hannah live the best life she can.  We honor Ms. Womac as a Mother of the Year!

TJC 2010 Mother of the Year - Maria Vasquez

Eleven-year-old Henry Vasquez has severe Asperger’s Syndrome, a development disorder on the Autism spectrum. His anxiety and self-harming behaviors prompted Henry’s doctor to order Applied Behavioral Analysis (ABA) therapy, a treatment for children with Asperger’s which involves family members. Asperger’s affects Henry’s emotions and his speech – he stutters and can't get words out.

Henry’s mother, Maria, speaks only Spanish, and requires an interpreter to participate in her son’s hands-on ABA treatment. But a TennCare HMO told the family that it would only cover interpretation services over the phone, not hands-on. TennCare’s offer was not only ineffective for the Vasquezes, but a violation of their rights. Ms. Vasquez contacted the Tennessee Justice Center and we filed a TennCare appeal and a Title VI complaint with Office of Non-discrimination Compliance/Health Care Disparities in late December 2009. Shortly thereafter, on January 14, 2010, Henry received an assessment to determine how many hours of ABA therapy were recommended. A Spanish-speaking interpreter was present.

Through Maria’s persistence and TJC’s advocacy, both Henry and his mom could participate fully in getting the care he so desperately needs. Ms. Vasquez’s experience highlights the irrationality of a system in which TennCare funnels public money to contractors to manage care, but then allows them to operate without oversight. The contractors then create arbitrary rules which result in children like Henry waiting months for needed care. No medical professional would approve a partial heart surgery or a partial tooth filling – ABA therapy without interpretation is equally illogical.

Ms. Vasquez said, “Thanks to all the hard work of the people at the Tennessee Justice Center it seems like everything is easier and going faster.”

Health Care Story of the Week - 2/10/10

Judy’s adopted son, Ladontay, age 6, loves skateboarding, coloring, watching wrestling on TV, reading, and going to school. However, Ladontay has cysts on his nose that make wearing regular glasses painful. Judy knew that if Ladontay’s glasses were more comfortable, he would leave them on at school and be able to learn more easily. His doctor ordered special glasses; however, his TennCare vision plan would only cover non-flexible glasses. The law says that children should have what they need to meet their potential. The plan would not even explain to Ladontay’s grandmother why it was denying the glasses.


Frustrated, Judy called the Tennessee Justice Center for help. TJC called the vision plan, Judy called TennCare, and the two worked together to write a letter to the state’s attorneys. Within three days, Ladontay’s doctor was able to fill the prescription for his new, flexible glasses. With his new glasses, Ladontay’s reading and schoolwork will improve and he will be able to participate more fully in sports.

In her fight to obtain the medical care that Ladontay needed, Judy also spoke for many other parents struggling to obtain care for their children. She said, “When I contacted the Tennessee Justice Center, you steered me in the right direction. Your help was a lifesaver. I am so thankful.” She continued, “Without the Tennessee Justice Center, I would have just taken “no” for an answer. Now, I know my rights.”

Health Care Story of the Week - 1/27/10

Austin is an 8 year-old who is charming, bright, and full of life. He is diagnosed with a severe language disorder that makes his limited speech unintelligible. After three years of attempting to use a communications device, Austin was only able to combine two symbols and was completely unable to navigate between pages of the device without heavy prompting and cueing. This was a source of great frustration for Austin. For three years he and his parents stressed over the loneliness caused by Austin’s inability to communicate.

A different device which enabled him to communicate much better, was denied by his TennCare HMO. They told him they would only cover the one he had been using, the one that did not work.

The HMO denied the medical equipment as “not medically necessary,” even though Austin’s speech therapist and pediatrician found that the device was medically necessary to enable Austin to communicate basic survival skills, make requests, and to express the need for medical assistance and medical care.

When Austin’s parents appealed, TennCare sided with the HMO.

Desperate to end the isolation Austin was forced to live in for three years with his unsuccessful speech generating device, Austin’s parents contacted the Tennessee Justice Center. TJC used the protections of the John B. class action law suit to get Austin the medical equipment his doctor and speech therapist recommended.

Austin was thrilled to learn that that he would be getting the medical equipment he needed. The smile on his face when it arrived, just in time for Christmas, was priceless.

Austin had trouble again shortly after, when he and his 5-year-old sister, Megan, were denied occupational and physical therapy because TennCare had allegedly not paid the bills for these services. Once again, TJC advocated on behalf of the family to address this issue and ensure that their providers continued treatment.

Health Care Story of the Week - 12/30/09

This fall began like any other for ten year-old Darius Richardson. In September, he started practicing with his football team for the season’s opening game. But then, Darius found out that he had brain cancer and would have to have an operation. Darius has been serious about sports since age five. Football, basketball, and baseball are among his favorites.

Darius lives with his single Mom, Trina Parker, who worked full-time until Darius got sick. The cancer began forcing Darius to miss football practice and school due to chronic headaches and severe weight loss. She had to cut her work hours in half so that she could care for him, leaving both her and her son ineligible for her employer’s health insurance.

Darius and Ms. Parker didn’t think things could get much worse. Then, TennCare told him he was going to lose coverage the day before he was to have the tumor removed. Without insurance, Vanderbilt would not do the operation. Ms. Parker asked the Department of Human Services (DHS) for help, but nothing happened. “I didn’t know who else to turn to,” she said. Then, a social worker told her about the Tennessee Justice Center.

When Ms. Parker called TJC, we realized immediately that TennCare had made a mistake in calculating Darius’s family’s income, and that he should stay on TennCare. We helped Ms. Parker file an appeal, allowing Darius to keep TennCare during the appeal. The surgery went smoothly, and Darius went home with his Mom about a week later.

Despite everything, “Darius is in good spirits. The doctor explained everything and he understands that the treatment is to get rid of the tumor,” said Ms. Parker. “He has a really good family-based support and church.”

But her fight wasn’t over yet. Darius’s cancer was worse than doctors had thought. A few days before Darius was scheduled to return to the hospital for chemotherapy, DHS told Ms. Parker they were going to close Darius’s TennCare case. Ms. Parker called TJC again. We wrote the Case Manager a letter reminding him that DHS rules required him to keep Darius’s case open.

DHS kept the case open, and later approved Darius’s TennCare application. He is currently at the hospital, receiving his first round of chemotherapy treatment.

Without a law firm's help, Darius would not have been able to get the surgery he needed to live, even though he still had a right to TennCare coverage. “I don’t know what else I would have done,” said Ms. Parker.

When Darius and Ms. Parker needed it most, our healthcare system was not there for them. “It’s clear to me that the system is broken,” said Ms. Parker. “I pray that we can work together to fix our country’s healthcare, so other families don’t have to go through the same struggle we did just to get basic care.”

Health Care Story of the Week - 12/16/09

Ms. Benson adopted her son, Zachary when he was 16. Zachary loves skateboarding and outdoor activities like caving, rock climbing, and paintball; he excels in school. Like any parent, Ms. Benson makes sure that Zachary gets appropriate preventive care and treatment. Zachary was adopted from the custody of the Department of Children’s Services, and he was guaranteed enrollment in Medicaid with his adoption. Ms. Benson was eager to adopt but simply could not afford health insurance for an additional family member.

For as long as Ms. Benson has been caring for Zachary, including when he lived with her as a foster child, Zachary’s doctors have reported that they were not being paid. In September, one of Zachary’s providers informed Ms. Benson that if TennCare continued to not pay for services for Zachary, Zachary may be turned away or Ms. Benson might be required to pay for services up front.

Since TennCare is required by law to pay all medical expenses for enrolled children, Ms. Benson decided to investigate the problem. She soon learned that Zachary was somehow still listed as enrolled in the insurance policy his stepfather had through his employer, even though parental rights had been terminated and Zachary had become a full ward of the state some years previously. Consequently, when providers billed TennCare, TennCare would kick the bill back, stating that they were not the primary insurer for Zachary. The bills got bounced around from insurer to insurer without any payments being made.

Since Zachary first came to Ms. Benson’s home, she has struggled with trying to get TennCare to pay for Zachary’s health care needs. Repeated phone calls to DCS, insurance companies and health care providers proved fruitless. In addition to this clerical error, Ms. Benson faced two other challenges related to Zachary’s health care: she had submitted paperwork to have Zachary’s name changed several months ago, and she had not received a new TennCare card reflecting Zachary’s new name, despite her request.

TJC regularly gives presentations to foster parents throughout the state, to inform them of their foster children’s rights under TennCare. TJC specifically targets these groups because most foster children are on TennCare. Ms. Benson met TJC advocate Susanne Bennett at one such event in Cookeville. Ms. Benson informed Susanne about the problems she was having getting care for Zachary due to the administrative glitch she had been unable to resolve for years. Ms. Benson told Susanne, “I am just concerned that the providers get paid so that my son is able to get the medical care he needs.”

On November 2, 2009 TJC wrote a letter to TennCare’s lawyer’s invoking TennCare’s pay and chase policy. This means that TennCare had to make sure Zachary’s providers got paid, and, if a different health insurance policy was responsible for Zachary’s bills, TennCare would have to “chase” it for reimbursement. In late November, Ms. Benson learned that Zachary’s provider had been paid by TennCare, and the charges were paid under Zachary’s new name.

The state’s lawyers responded, stating that these problems would be resolved. When Ms. Benson heard that Zachary’s case was finally being handled appropriately, she said, “I am thrilled that I can take him to the doctor now that I know they won’t have trouble getting paid by TennCare. I was at my wit's end. It was like running on a treadmill. Everyone I called passed the buck and no one tried to fix this problem.” Thanks to Ms. Benson’s tireless advocacy for her son, they no longer have to worry about whether his doctors will continue to see him.