Update on the Appellate Court's ruling

You may have heard about a recent ruling over TJC’s lawsuit to improve TennCare services for children. The story has been featured in the Tennessean and in other local media. In case you hadn’t heard, the State had appealed to the 6th Circuit Court of Appeals, asking them to set aside the Consent Decree that TJC negotiated to ensure that TennCare complies with federal law and provides low-income and medically fragile children with the health care they need. A consent decree is an agreement made by both sides of the case to take steps that the court will oversee. The State also asked that the case be reassigned to a new lower court judge for future proceedings.

TJC argued against both setting aside the Consent Decree and reassigning the case. Ultimately, the court did rule that a new judge should be assigned to the case. In 2006, the federal court had asked the State what its plan was for complying with the law that promises children the health care they need. The State said there was no need for a plan because it was already in compliance. Since then, TJC has been monitoring the State’s compliance to its obligations to Tennessee’s children under the Consent Decree. The monitoring and discovery process has been very contentious, delaying a trial on the merits of the case. The Appeals Court noted the “strategy of contention” that the State has pursued has dragged the case out, but it ultimately ruled to reassign the case to a new judge.

The Appeals Court did not, however, relieve the State from its obligations under the Consent Decree. It refused to lift the State’s obligation to provide services to low-income and medically-fragile children in Tennessee. TJC remains committed to holding the State accountable to its most vulnerable citizens. Though the immediate future of this case remains unclear, what is certain is that TJC will continue to stand with Tennessee children when their HMOs deny them the services their doctors say they need.

We are hoping that these new developments will give the State a chance to reconsider its tactics and shift its focus to fulfilling its obligations to children. Legal wars of attrition are not in the interest of taxpayers who have to pay out-of-state lawyers’ huge legal fees. More importantly, focusing on these fights instead of children’s health is costly to the state for generations to come. Our case has never been about TJC’s lawyers scoring points in the courtroom – it is about ensuring that TennCare enrollees get the services they are promised by the law. These are services that taxpayers have already paid HMOs to provide, but the State must hold its contactors more accountable. As long as the State and its HMOs continue to deny children medically necessary services, we will continue to challenge the State’s failures and work to make things right.

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.

Health Care Story - 9/8/2010

Shondrea is a vibrant, determined 28-year-old woman who wants to make her mark on the world. While she was a full-time college student, Shondrea worked as a hotel night auditor while balancing a full load of classes in social work. She knows what it means to work hard, and she wants to have a career that will help to improve the lives of others.

At the moment, however, Shondrea is fighting for her own life. Almost eight years ago, at age 21, she was diagnosed with lupus, a chronic, autoimmune disorder that causes inflammation in the body’s organs. Although she was able to control her symptoms for several years through expensive treatments and medications while on private insurance, her situation changed significantly under the stress of college combined with long, late-night shifts at the hotel. Her body exhausted, Shondrea’s organs began to break down.

Beginning in late 2008, Shondrea began having difficulties breathing, and fluid started accumulating around her heart. After going to the hospital more than once to have the fluid drained, she underwent surgery to implant a device around her heart to reduce the accumulation of fluid. Since her surgery, she has been regularly seeing several specialists who monitor her condition and are treating her with lifesaving medications. Lupus has also attacked Shondrea’s lungs and kidneys, and the weakening of her lungs makes her unable to walk or exercise.

Due to her current medical condition, Shondrea cannot return to school or work. She was deemed disabled in 2009 and lives on just over $1,000 per month in SSDI. Because Shondrea no longer receives SSI payments, she is losing her TennCare. She has a hearing next month, but the state’s rules make it very hard for a childless adult, like Shondrea, to be on TennCare.

If Shondrea loses TennCare, she has few health insurance options. Shondrea must wait two years from when she was determined disabled – until mid-2011 – to qualify for Medicare. This two year gap leaves people with severe disabilities out in the cold when they need health insurance most. In the meanwhile, Shondrea requires regular visits to her specialists and medications. If she stops treatment, her doctor has given her a life expectancy of fewer than ten years.

Private health insurance will not cover Shondrea because she is uninsurable. Her only other option is a high risk pool – either AccessTN, the state’s health insurance for residents who are uninsurable due to pre-existing medical conditions, or a new federal high risk pool. AccessTN is less expensive, and yet Shondrea would still have to pay a monthly premium plus a deductible, a financial stretch on her fixed income.

Not only is Shondrea in the middle of a two year gap, waiting for Medicare coverage to kick in, she’s one of millions of low-income adults who are waiting for 2014, when they will qualify for Medicaid. One provision of the Affordable Care Act mandates that all persons – including those, like Shondrea, without children – who earn less than 133% of the Federal Poverty Level are eligible for their state’s Medicaid program, such as TennCare. If that law were already in effect, Shondrea would not be facing the possibility of being disenrolled from TennCare. For Shondrea, and many others like her, health care reform cannot come soon enough.

TJC Commentary - TJC's Jennifer Tlumak Shares Her Thoughts on Healthcare Changes

Our nation’s health insurance and delivery system is changing, and TJC is keeping pace, ensuring our clients have access to current information on locating, obtaining, and keeping meaningful health care coverage for their families. The Affordable Care Act, or “health reform” as it’s popularly known, is the law of the land. The law has lots of benefits for our clients, and although key provisions have yet to go into effect, we’re already seeing the real world impact of this historic legislation.

A breast cancer survivor who’s losing TennCare may be able to get immediate coverage, without being screened for pre-existing conditions, in the federal high risk pool that began on July 1, 2010. An elderly uninsured woman with extensive prescription drug needs may also benefit. This new high risk pool created by Affordable Care Act has some benefits over the state version, AccessTN. For example, the federal program has no waiting period for coverage of major medical conditions, and that’s a huge benefit to some of our clients.

A small child with seizures who relies on his father’s employee insurance plan will not be subject to pre-existing exclusions starting in early 2011, when their plan year begins. Health reform is the reason this child and his family will be protected from high out-of-pocket medical costs for his rare disease. The child will be covered, and the private insurance company will be responsible for covering this sick child – including his pre-existing condition – as well as his healthy siblings.

We still don’t have a perfect solution to our nation’s health care problems. But the changes are encouraging: ending rescissions and discrimination on the basis of pre-existing conditions, extending coverage to very low-income adults, providing subsidies so that more people can afford better insurance, and regulating the insurance companies by mandating that they put patient care ahead of profits. In my daily work with clients, I’m beginning to see the positive impact of some of these changes. I look forward to seeing more benefits as the Affordable Care Act is implemented more fully.

Health Care Story - 7/22/10

Diane adopted Jimmy as a special needs infant when he was only six weeks old. Diane knew that he was born with a cleft palate and some other minor birth defects, but since she has private insurance and (as a special needs adoption) Jimmy also has TennCare, Diane thought all Jimmy’s needs would be covered by insurance.

It turned out that Jimmy’s minor problems at birth became significant impairments as he grew. By age 8, he had been diagnosed with autism, mental retardation, and cerebral palsy. His autism has proven difficult to manage, with behaviors ranging from running into the street and grabbing women’s breasts in public to obsessively chewing warts on his hands and a fascination with the sight of his own blood. Nevertheless, Diane knew that Jimmy had great potential and that all he needed to reach it were the right therapies and treatments. As she told TJC, “Despite his challenges, he is a sweet kid who tries very hard and who inspires most who meet him.”

Diane began searching for therapy to manage Jimmy’s autism soon after he was diagnosed. She even took him to a specialist out of state and paid out of pocket for ABA therapy when her insurance policy said it would not cover the treatment. As he got older and his behaviors worsened, Diane hired specially trained caregivers, once again paying out of pocket, to help care for Jimmy. Over the years, she has spent more than $100,000 of her own money to try to keep Jimmy safe. Unfortunately, all this money and effort has not allowed Jimmy to reach his full potential.

Diane contacted TJC for help getting Jimmy therapy to reduce his harmful behaviors. Jimmy’s PCP and psychiatrist prescribed applied behavioral therapy (ABA), but TennCare denied it as not medically necessary and Diane’s private insurance would not cover the expensive treatment. TJC helped Diane navigate the appeals process and discovered a TennCare procedural error, which allowed Jimmy to receive intensive in home ABA therapy for more than one year. His obsessive biting and other dangerous behaviors have been drastically reduced. In preparation for the family’s TennCare hearing, TJC located a pro bono attorney to assist Diane in court. Based on Jimmy’s severe needs and the successes the ABA treatment had produced, the Judge ordered TennCare to continue providing intensive ABA.

Because he has gotten the health care he needs, Jimmy is adjusting better in school and other public settings. His problem behaviors have gone down. His overall physical and mental health have improved, and he is a happier child. Through the tireless advocacy of dedicated mothers like Diane, Tennessee’s children have a brighter future ahead.

Health Reform Update: New regulations in place to protect consumers

Yesterday, the U.S. Department of Health and Human Services issued regulations that create a new Patients' Bill of Rights under the Affordable Care Act. These regulations, which apply to nearly all health insurance plans, will help children (and eventually all Americans) with pre-existing conditions gain coverage and keep it, protect all Americans’ choice of doctors and end lifetime limits on the care consumers may receive.

How will the rules help you? They will:

• Stop insurance companies from limiting the care you need. These rules stop insurance companies from imposing pre-existing condition exclusions on your children; prohibit insurers from taking away your coverage based on an unintentional mistake on an application; ban insurers from setting lifetime dollar limits on your coverage; and restrict their use of annual limits on coverage.
• Remove insurance company barriers between you and your doctor. These rules ensure that you can choose the primary care doctor or pediatrician you want from your plan’s provider network, and that you can see an OB-GYN without needing a referral. Insurance companies will not be able to require you to get prior approval before seeking emergency care at a hospital outside your plan’s network.

There are also several other new provisions. More info on all of these new changes can be found at http://healthreform.gov/newsroom/new_patients_bill_of_rights.html.

Families USA Report: Health Reform's impact on Tennesseans with pre-existing conditions

Recently, a Families USA report came out exploring what Health Reform will mean for Tennesseans with pre-existing conditions. The full report can be found here: http://www.familiesusa.org/assets/pdfs/health-reform/pre-existing-conditions/tennessee.pdf.

Here are some of the most important facts we saw in the article:

• There are currently 1,275,000 Tennesseans under 65 years old with pre-existing conditions that could potentially exclude them from insurance coverage. That is ¼ of the non-elderly population.
• There are 115,000 children under 18, and 97,700 young adults aged 18-24, that have pre-existing conditions that could be used to deny coverage.
• These groups transcend all socioeconomic indicators. While individuals below the poverty line are the most likely to have a condition, 23.9% of the individuals making over 400% of the poverty level could be excluded.

Keep in mind that this study is only based on individuals who already have a diagnosis. As primary care becomes more readily available, more individuals will likely discover that they have chronic conditions that require treatments that would otherwise be excluded under traditional health insurance practices.

Health Care Story - 5/21/10

This week, we welcome a guest post from Sheryl Hurst, a 3rd year student at The University of Memphis Cecil C. Humphreys School of Law.  This post is about her experience in working on TennCare appeals.

“Andrew” is a seventeen year-old boy diagnosed with numerous mental health issues, including Autism Spectrum Disorder (atypical autism), Mental Retardation, and Pervasive Developmental Disabilities. Andrew was involuntarily civilly committed by the Juvenile Court of Memphis and Shelby County and placed in the custody of the Tennessee Department of Mental Health and Developmental Disabilities (“DMHDD”). DMHDD placed him at the Middle Tennessee Mental Health Institute’s adolescent center (“MTMHI”). Because MTMHI is an acute care facility designed for short term stays, MTMHI searched for a residential treatment program that was willing to accept Andrew and provide the most appropriate treatment possible for his diagnoses. MTMHI eventually was able to secure a spot for Andrew at the National Deaf Academy (NDA) in Florida.

However, upon acceptance to this residential program, TennCare refused to pay for the services. TennCare deemed such treatment to be “not medically necessary.” In so finding, TennCare asserted that residential treatment was not “safe and effective” because Andrew possessed “active severe suicidal, homicidal, mood or thought disorder problems” that required intensive levels of care. TennCare further stated that Andrew was in “need of more care than residential treatment can safely and effectively provide.” In December of 2009, Andrew appealed TennCare’s decision to deny payment for residential treatment at NDA. On January 29, 2010, The University of Memphis Child and Family Litigation Clinic was appointed as Guardian ad Litem for Andrew.

Andrew’s case was handled by a team of Student Attorneys who in the course of several weeks assembled an extensive list of expert witnesses along with evidence in order to present their case. The Student Attorneys assembled two binders of evidence including medical records and school records, a DVD, and various other materials.  They prepared three expert affidavits and a pre-hearing brief and delivered their entire product to the TennCare attorney in Nashville.  They assembled and prepared four in-person witnesses and two telephone witnesses and prepared for trial.  The hearing was scheduled for April 13, 2010, but an hour before it was set to begin the attorney for TennCare called to settle the case. TennCare authorized payment for residential treatment services.

This case turned out to be a huge victory for the team of Student Attorneys working on the case, as well as for Andrew. It was a great feeling of accomplishment when I learned of the result, and the rush I got is unexplainable.  It was great working to get Andrew the appropriate medical treatment he was entitled to. Providing Andrew with access to the medical treatment he deserves will greatly expand his capability to progress into the adult which he is capable of becoming. Working on the case was a very enjoyable experience and I was extremely pleased with the outcome.

Housed in the University of Memphis, Cecil C. Humphreys School of Law, the Child and Family Litigation Clinic fulfills a critical community service by providing free legal services to under-represented clients, specifically children. Student Attorneys work under close clinical faculty supervision and develop firsthand knowledge about the various ways they can promote social justice and use their law degree in service to society.

TJC 2010 Mother of the Year - Linda Winford

Linda Winford of Clarksville is being honored as a 2010 Mother of the Year by the Tennessee Justice Center (TJC). The award is in recognition of her persistence in battling to obtain medical services for her daughter and for her extraordinary commitment to the healthcare of all children and families. Ms. Winford is one of six parents from all over the state who are receiving the 2010 TJC Mother of the Year award.

Just after Christmas 2006, four siblings were adopted by retired phone company employee Linda Winford. While living with their biological parents, the children had endured physical and verbal abuse. When they first came to their foster mom, it was with broken bones, shaved heads (due to lice), malnutrition, and a host of behavioral problems due to Post-Traumatic Stress Disorder (PTSD). The children’s healing began with love and care from their new mom, Linda, supported by her partner, Kathy Lyons, formerly with the Army as a Captain in the Chemical Corps. A near drowning accident resulted in the youngest child, Rebecca, becoming quadriplegic at age three. She cannot walk, breathes with the help of a tracheotomy, and is fed by a tube. Through Linda and Kathy’s consistent care, she is getting stronger every day, and can now communicate through smiles and blinks.

Because she has difficulty coughing and swallowing, Rebecca needs help clearing her throat and lungs. Without proper help, many children in this condition are continually hospitalized for pneumonia. For more than a year and a half, Rebecca has been hospital-free because she uses “the Vest,” a machine that clears her lungs and prevents choking and infections. But last fall TennCare notified the family that the Vest would be taken away because it was “experimental.” The family called TJC, and we helped them get ready for the hearing. They proved to the judge that it would be cheaper for TennCare and better for Rebecca to keep the Vest, so the judge ordered it. Ms. Winford said, “With the Tennessee Justice Center’s help, we were able to keep Rebecca’s Vest, and her respiratory health is excellent. Her pulmonologist just gave her a clean bill of health.”

As the family faces more battles to get Rebecca what she needs, TJC is by their side. Rebecca is benefitting tangibly from hyperbaric oxygen therapy to restore her cognitive function, and needs nurses to accompany her to those treatments. But TennCare denied the nursing care. TJC wrote a letter to the state explaining why she should get the care, and found an attorney to represent the family in court. Unfortunately, they lost at the hearing, but Ms. Winford is not through fighting. Ms. Winford said, “We’ll keep working to help Rebecca and other young people keep their health care and reach their potential.”

One way the family’s fighting to raise awareness of children like Rebecca is their annual RebeccaRoo festival coming up in September 2010. RebeccaRoo 2009 was a big success, with live music, food, and activities for the community to enjoy. The festival benefits Rebecca and other disabled children by raising awareness and funds for their ongoing care needs.

TJC 2010 Mother (and Father!) of the Year - Dr. Bill and Mrs. Karen Shannon

Dr. Bill and Mrs. Karen Shannon have been caring for their son Jim since he became disabled 38 years ago. Jim was born healthy, but had become nonverbal and quadriplegic by the time he was eight months old. Doctors were never able to explain what went wrong. Over the years, with the help of nurses, Dr. and Ms. Shannon have helped him learn to use a computer with the one part of his body that he can control – the left side of his chin. Jim lives a full life despite his severe disabilities. He has a Master’s degree from Middle Tennessee State University, a job working with computers, is the president of an organization concerned with technology for people with disabilities, and attends church every Sunday.

When TennCare wanted to reduce Jim’s nursing hours in 2008, Dr. and Mrs. Shannon did everything they could to fight it. The Shannons wanted to make sure their son got the care he needed to allow him to reach his full potential. TJC helped them file an appeal and find an attorney to represent Jim at his hearing. We also campaigned to get the rules changed that allowed TennCare to reduce the home health care of enrollees like Jim, and Dr. and Mrs. Shannon led the fight by speaking to legislators at the committee hearing, speaking out against the limits on a local radio show, and getting over fifty members of their community to sign a petition against the home health cuts.

Then, in 2009, TennCare eligibility changed, putting Jim at risk of losing his health insurance altogether. Without TennCare coverage, Jim would lose the nursing care he needs to stay safe. His employer’s insurance wouldn’t help, since their plan does not cover home health care. Dr. Shannon called TJC again, and we determined that Jim was still eligible for TennCare. In their fight to reinstate Jim’s care, Dr. and Mrs. Shannon also spoke for many other parents struggling to obtain care for their children. Currently, more than 500,000 children rely on TennCare for their health care.

Through TJC’s advocacy, and with Sumner County attorney Jim Hawkin’s representation, Dr. and Mrs. Shannon were able to prove to TennCare that Jim was eligible. He continues to receive the care he needs to stay safe and remain a productive member of society. Dr. Shannon said about TJC, “They’re almost like the proverbial David and Goliath story – they’re David, trying to fight a huge machine to protect the rights of individuals.” He continued, “Common folks like us, we don’t know what our rights really are and what w should expect, so these people at TJC, they’re the light at the end of the tunnel for us.” Listen to Dr. Shannon speaking about TJC.

We’re proud to honor Dr. and Mrs. Shannon of Hendersonville as 2010 Mother and Father of the Year.

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 - 4/21/10

Mother's Day stories will be coming up in the next few weeks... Here's one of our Community Mothers of the Year from 2009.  Destiney wrote to us nominating her grandmother, Earnestine, for the award. 

Destiney’s grandmother, Earnestine, is her health care hero. Earnestine is devoted to doing everything she can to make sure her granddaughter is as healthy and happy as possible. Destiney said Earnestine taught her that, “when your body is healthy, your mind will be happy and it will help you to focus and do your work.” She and her grandmother work out together in their exercise room at home every day. Destiney enjoys jump roping, riding her bike, skating, and hula hooping. “I love to work out because it makes my muscles look big,” said seven-year-old Destiney.

When Destiney needs a checkup or an immunization shot, Earnestine always takes her to her appointments. Earnestine makes sure that Destiney eats three healthy meals a day, with plenty of fruits and vegetables. Her favorite foods are peas and mandarin oranges.

Earnestine also makes sure that Destiney gets plenty of sleep every night, brushes her teeth 3 times a day, stays hydrated and clean. Destiney said her grandma takes her “to different fun places to have fun… (She) loves me and she takes time out with me every day.” Earnestine knows that keeping kids healthy allows them to get the best start in life and reach their full potential.

Health Care Story of the Week - 4/1/10

Jacob, age 7, has a rare genetic disorder that requires him to use a machine to keep his lungs clear so he can breathe. He uses another machine to eat and braces and a walker to get around. While Jacob’s condition means that he has many medical needs, he can talk and his friendliness and growing intellect shine through in his speech.

When his doctor said Jacob was ready to attend school, he prescribed a one-on-one nurse to ensure his safety. However, Amy was unable to find a nursing agency that would provide a nurse for Jacob. She appealed to the insurance company for help, but was told that there was nothing the company could do. Wanting her child to learn and be part of a community of other students, Amy contacted the Tennessee Justice Center for help. Since Jacob is on TennCare, TennCare is ultimately responsible for providing needed care. After TJC contacted TennCare, a case manager was assigned to coordinate Jacob’s care. Soon a nursing agency arranged staffing for Jacob. He is now attending school, learning and socializing in a stimulating environment, all thanks to Amy's dedication.

Amy's best friend, Linda, puts it this way, "I have never seen a more protective, providing, loving mother. Amy has ALWAYS put her family first, being at home and trying to find work from home so she would be able to care for her sick child. I am very proud of her love and her strength and determination to get things done where any one of us would have given up a long time ago. She endures."

Health Reform Update - 3/24/10

There’s been plenty of talk recently about what the health reform bill will mean for Americans. Today, we want to focus on the 10 best immediate benefits that health care reform will have for everyone. These are just a few of the changes that are incorporated into the house bill, and they include the provisions that the Senate is currently voting on.

1) Small business tax credits.
• Tax credits of up to 35% of premiums are immediately available to small businesses that offer coverage. In 2014, these credits will increase to offset 50% of the cost.
2) Closing the Medicare Part D Donut Hole
• All Medicare enrollees that hit the donut hole this year will receive a $250 rebate. Beginning next year, brand-name drugs will be discounted by 50% in the donut hole. By 2020, the donut hole will be completely closed.
3) Free preventative care
• Beginning January 1, 2011, there will be no copays or deductibles for any preventive services paid for by Medicare.
• Starting in 6 months, all new private plans will be required to offer preventive services without charging copays or deductibles.
4) Ending recissions
• Starting in 6 months, health insurance companies will no longer be allowed to drop people when they get sick.
5) No lifetime or annual limits on coverage
• Starting in 6 months, insurance companies will not be allowed to place lifetime limits on benefits.
• Beginning in 6 months, new regulations would restrict the use of annual benefit limits to deny services to patients. In 2014, annual limits would be banned from all new plans.
6) No discrimination against children with pre-existing conditions
• In 6 months, insurance companies will be banned from denying coverage to children based on pre-existing conditions. In 2014, this rule will be applied to people of all ages.
7) New appeals process
• Creates a new and effective internal and external appellate process to allow a patient the opportunity to challenge decisions made by his or her insurer.
8) Premiums must go towards paying for care
• Starting January 1, 2011, all large-group market insurers must spend at least 85% of the cost of premiums on providing actual care. Insurers that cover individuals or small groups must use at least 80% of premiums to pay for care. Companies that don’t do this will have to refund their policyholders.
9) Immediate creation of a high-risk pool
• In 90 days, a temporary subsidized “high-risk pool” will open for people who cannot get insurance due to pre-existing conditions. This pool will close once the exchange opens and insurance companies are banned from denying coverage to adults (in 2014).
10) Health insurance consumer information
• Provides immediate funding to state governments to create programs that will help patients learn their rights and file complaints and appeals when care is denied.

Health Care Story of the Week - 3/17/10

Laurenda is the adoptive Mom of six girls, including 12 year old Karla and her sister. In 2003, she and her husband, Danny, took Karla in as a foster child. Karla needed to have open heart surgery, and after negotiating with Karla’s birth mother, Laurenda received permission to get heart surgery for Karla.

Laurenda made sure that Karla made it to all of her appointments with the cardiologist and the surgeon, as well as all her other doctors. When Karla went to Vanderbilt for surgery, Laurenda stayed there with her for a week. “She played games with me and even pulled me up and down the halls in a red wagon,” said Karla. “My new Mom even made a scrapbook for me of my time in the hospital so I would always know why I have scars on my chest.”

Thanks to Laurenda’s dedication, Karla’s surgery was a success. Now, “You can’t tell Karla that she can’t do anything,” said Ms. Whisenhunt. “She loves to work with my husband building things. She doesn’t have the fear of overdoing something, she has confidence.”

All of Laurenda and Danny’s adopted daughters have special needs, “but she always manages to take care of us,” said Karla. “I can’t really think of the words to tell you how special she is… All of my friends think she is the bomb.” As this family's story demonstrates, a parent's persistence and dedication to ensure that her children get the care they need can make all the difference.

Health Care Story of the Week - 3/11/10

This week, instead of telling the story of one family, we'd like to share information about the state of health care in Tennessee as a whole. The following information comes from Families USA. More info on all states can be found at http://www.familiesusa.org/health-reform-2010/cost-of-doing-nothing.html.

1. If we don’t pass health reform now, 158,000 Tennesseans will lose health insurance by 2019. 

• If we do nothing, 1,065,000 Tennesseans will lack health insurance by 2019, leaving 1,065,000 people with few options when they get sick.
• If Congress does the right thing and passes health reform, 611,000 Tennesseans will gain coverage.

2. If we don’t pass health reform now, the average Tennessean’s family insurance premium will increase by $7,737 by 2019.

• These increases in family premiums happen at a time of record-breaking profits for health insurance companies. The five biggest for-profit health insurers saw a combined $12.2 billion in profits in 2009.
• Passing health reform will provide subsidies to millions of Americans in order to make health insurance affordable. Health reform will also hold insurance companies accountable to their policyholders and not just their stockholders by requiring insurers to spend 85 cents of every dollar on actual health care.

3. If we don’t pass health reform now, more Tennesseans—our parents, our friends, our neighbors—will die because they lack health insurance.

• Nearly 13 working-age Tennesseans die each week because they lack health insurance.
• Health reform will expand life-saving coverage to thousands of Tennessee families.

4. If we don’t pass health reform now, Tennessee’s small businesses will pay $2.8 billion more for health care premiums by 2018, stifling innovation and job growth. 

• While Tennessee’s small businesses spent $2.1 billion on health care premiums in 2008, that number will rise precipitously to $4.9 billion by 2018 without health reform.
• By passing health reform, Congress will provide tax credits and a new marketplace for small businesses to provide quality, affordable coverage to their employees.

5. If we don’t pass health reform now, 177,000 Medicare beneficiaries in Tennessee will continue to hit the “doughnut hole,” or gap in Medicare Part D drug coverage.

• The doughnut hole costs seniors an average of $4,080 per year. 
• Health reform will reduce the doughnut hole, ensuring that Tennessee’s Medicare enrollees will not have to choose between food or medicine.

Health Care Story of the Week - 3/4/10

John and Sue have spent the last 20 years helping their son Jonathan reach his maximum potential. Jonathan suffers from Asperger’s Syndrome. This means that when medicated Jonathan has a nearly normal IQ but suffers from many of the debilitating characteristics of Autism. His disability prevents him from being able to socialize with other people and make sound decisions. At the age of 24, he has the functional IQ and emotional maturity of a young boy.

Sue, a BS Home Economist and certified teacher, gave up her career and dedicated herself to taking care of Jonathan. When Jonathan completed secondary school at age 20, John and Sue began searching for a long-term solution for Jonathan. They had heard about a special Medicaid waiver for the mentally retarded, but were then told that Jonathan did not qualify because of his normal IQ.

John and Sue then heard about a vocational rehabilitation program for people with neurological problems. They were then told that Jonathan did not qualify for that program because his functional level was too low.

John and Sue were determined that Jonathan was not going to fall through the cracks created by the bureaucracy of narrowly defined government programs. They did not give up.

The family eventually learned of a residential treatment facility that could treat Jonathan’s behavioral problems and improve his social functioning. They asked TennCare to pay for this treatment in the hopes that Jonathan would be able to go from the treatment facility to a group living environment. Without it, he would never make it in that type of living arrangement.

TennCare refused to pay for the treatment. The family appealed. They found a pro bono attorney to help them with the appeal. That attorney contacted TJC for advice on how to handle the appeal. TJC helped the attorney, and the John and Sue were able to get Jonathan the treatment that he needed.

The story does not end there, however. Despite the fact that Jonathan’s doctors do not think that he is ready to leave residential treatment, TennCare has repeatedly tried to stop paying for Jonathan’s care at the residential treatment facility. John and Sue are persistent and keep appealing to make sure that Jonathan receives treatment for as long as he needs it.

John and Sue are also still tirelessly searching for a long-term placement that will meet Jonathan’s needs, but will keep him in the community once he is ready to leave the residential treatment facility. Jonathan cannot be left unsupervised for his own safety and the safety of others. Finding a place for him to go after he finishes residential treatment when there seems to be no place for him to go is the next mountain that John and Sue are climbing to help their son.

Health Care Story of the Week - 2/24/10

Tamorra Clark is a 10 year old girl born with multiple medical problems, including cerebral palsy and developmental disabilities. As a result of these conditions, she requires private duty nursing at home to meet her medical needs. Tamorra’s parents both work in the army and are stationed in Tennessee. The army’s medical insurance covers half of Tamorra’s private duty nursing while TennCare covers the other half. In January, Tamorra’s mom received a notice from TennCare telling her that Tamorra was no longer eligible for TennCare services. She was told that Tamara’s eligibility category was closing and she did not fit in any others. This meant TennCare would no longer supplement her private duty nursing hours, and she would go without care for large portions of the day.


Tamorra’s parents were particularly upset about the impending loss of their daughter’s TennCare and home health care given their line of work. They are two people who have promised to give their lives for the protection of our country yet their daughter may have to go without her much-needed nursing care.

Tamorra’s mom, Ms. Quinn-Clark contacted TJC, worried that her daughter would not be taken care of; Ms. Quinn-Clark was scheduled to be deployed to Afghanistan at the end of January, and her husband, who works, would not be able to stay home to take care of Tamorra. TJC explained to her what her options were and told her about the MR waiver. The MR waiver is a statewide program to help individuals with mental disabilities. Enrollment on the waiver also entails coverage by TennCare. Ms. Quinn-Clark applied for the waiver services for her daughter and is waiting a decision.

Ms. Quinn-Clark has already deployed to Afghanistan, where she will remain for one year. In the meantime, her husband must balance his full time military obligations with caring for his daughter, all while worrying about what may happen if Tamorra is not able to enroll.

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 - 2/4/10

Eleven-year-old Chance enjoys being outdoors. He loves to play basketball and go swimming. Chance was born with hearing and vision impairments as well as serious psychological and neurological problems.

After a recent hospitalization, Chance was discharged but desperately needed follow-up care. Chance’s doctors had ordered residential treatment for him. This intensive level of care and therapy is Chance’s opportunity to develop to his fullest potential. To avoid social isolation due to his deafness, Chance’s doctors recommended placement at a facility where both the staff and the residents could speak to him in sign language. Integrating Chance in a social setting during his treatment increases the likelihood that Chance’s therapy will succeed, and that upon discharge he will be able to function well at home and in school. Originally, TennCare indicated that it would not cover this specialized treatment for Chance.

Chance’s behavior was out of control due to his disorders and he posed a serious risk to himself, his family, and his peers. He could not return to school. He could not be around other people. In order to keep their son, their family and their neighbors safe, his mother, Kim, stayed with Chance at a State Park. Knowing she could not remain awake around-the-clock to watch over Chance, Kim called TJC for help.

With the help of the Tennessee Justice Center, Chance received the care his doctors recommended. TJC’s advocacy ensured that TennCare will cover the treatment for Chance at a facility that works specifically with deaf children who have multiple special health needs.

Chance’s mother wrote to TJC on behalf of the family: “Thank you so much from all of us, especially Chance. We finally have so much more hope for him.”

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 - 1/21/10

Twenty-one-year-old Geanine was in a car accident in October 2004. She suffered a traumatic brain injury. Immediately after the accident, Geanine could not walk or talk. Her mother, Gerece, was living in Milwaukee and moved with her son, Geanine’s younger brother, to Tennessee to take care of her daughter.

After four months of rehabilitation, Geanine was discharged. She immediately began experiencing severe behavioral problems as a result of her brain injury. Geanine tried several times to hurt her mother. Geanine would often say, “I wish you would just disappear” or “I wish you were dead.” On one occasion, Geanine held a bottle of bleach over her mother’s head and was going to pour it on her.

Gerece never gave up on Geanine. She fought diligently to get Geanine the care that she so desperately needed. Geanine’s doctor recommended she be placed in a residential facility that specialized in treating brain injured patients. TennCare refused to cover the care. Gerece contacted TJC, and we filed an appeal for Geanine to receive residential treatment at a facility specializing in brain injury. After several months of battling, Geanine finally won approval.

Every step of the way, Gerece constantly supported and advocated for her daughter.

Since Geanine’s admission to residential treatment, Gerece continues to be a tireless advocate for her daughter. Some may have expected her to breathe a sigh of relief and take a break from the turmoil of behavioral problems caused by brain injury. Not Gerece. Gerece continues her active involvement in her daughter’s treatment and therapy and strives to ensure that her daughter receives the care her daughter’s future depends upon.  Even though it took a legal battle, Geanine's treatment will open up many possibilities in her future.

Health Care Story of the Week - 1/13/10

This week, instead of presenting a story of an individual's struggle with health care issues, we present a comparison between the availability of care in Tennessee and Alabama, which has been affected by recent policy decisions.

Last month, Alabama won a $39 million performance bonus for making it easier for low income children to get health insurance. Meanwhile, just across the border in Tennessee, legislation was passed that locked many of the state’s 150,000 uninsured children out of TennCare indefinitely.

So, a low income uninsured child on the Alabama side of Ardmore, a town that spans the Alabama-Tennessee border, can now access Medicaid coverage more easily than ever before. But the same low income uninsured child on the Tennessee side of town may now be forced to go without needed medical care.

On December 16, the federal government awarded the $39 million performance bonus to Alabama for doing such a good job enrolling low income children through the Children’s Health Insurance Program (CHIP). Two weeks earlier, Tennessee stopped accepting applications to their version of CHIP, known as CoverKids. Now, all low income, uninsured children in Tennessee who hadn’t applied for CoverKids by December 1st are out of luck.

The performance bonus was one of the programs created by the Children’s Health Insurance Program Reauthorization Act (CHIPRA). Ten states earned a bonus by meeting enrollment increase targets and implementing at least five enrollment and retention strategies.

In Alabama, these strategies included eliminating the in-person interview, providing 12 months of continuous eligibility, using a joint application for both Medicaid and CHIP, using the same form for renewal and application, and by implementing automatic renewal. But Tennessee failed to eliminate in-person interviews, use the same form for renewal and application, or implement automatic renewal. What’s more, Tennessee was one of the only states that failed to implement the use of joint renewal forms.

On December 1, Tennessee became the only state in the country to indefinitely close its CHIP program. The state did so despite the federal government contributing 75% of CHIP costs in Tennessee (a higher share than in most states), and despite the $350 million in unspent TennCare reserves.

Tennessee is clearly in need of a more accessible rather than more restrictive children’s Medicaid program: the state ranks 47th in the country for children’s health care, and infant mortality in Tennessee is worse than in many developing countries. In fact, the rate of infant deaths in Memphis is the worst of any city in America.

Alabama’s leaders know that, if times are hard for the state government, they are even harder for uninsured children and their families. Now more than ever, Tennessee should be following its neighbor to the south’s example by increasing TennCare enrollment instead of slamming the door on uninsured children.

Health Care Story of the Week - 1/6/10

Keith and Dianne Warren always thought they would be parents of two or three children. But when their daughter Alissa was born in 2005 with a rare genetic condition called sacral agenesis (aka caudal regression syndrome), they decided not to have any more children. Instead, Keith and Dianne have poured all of their love into making sure Alissa has the best life possible despite her physical disabilities.

Because of her genetic condition, four-year-old Alissa lacks several bones in her lower back and bottom, her legs are permanently crossed, and she has clubbed feet. She has kidney reflux and chronic bowel issues. She only weighs 20 pounds and cannot walk. Despite her physical limitations, Alissa gets around in her own special way just as well other children her age. She attends school, and she is a very smart child who loves life. She’s a happy and active little girl who loves to sing and dance. You can see a video of Alissa singing and dancing.

The Warren’s both maintain a full time job, and Alissa is on her dad’s insurance plan. But it doesn’t cover everything that’s needed. TennCare has been Alissa’s secondary payor, kicking in when the private plan would not cover specialty care needed to treat her rare condition. The Warren’s monthly income has always been sufficient, but now, they worry about crushing medical bills, since Alissa is being dropped from TennCare. Along with thousands of other children with disabilities, Alissa will be cut from the program in the next few weeks. After talking with the state human services office, the Warren’s believe that the only way Alissa can qualify for TennCare again is if the family incurs more than $3,500 in medical bills. Forcing families to run up thousands in medical debt in order to keep their health care means that more families will face financial ruin. Medical debt already is the leading cause of bankruptcy in the nation. For other families, it may mean that children simply go without needed care.

The Warren’s have called state legislators, shared Alissa’s story with friends, and worked with a client advocate at the Tennessee Justice Center. They are determined to make sure their only child gets the health care she needs. The Warren’s story is typical – private insurance plans don’t cover everything that’s needed. While more than 45 million Americans are uninsured, tens of millions more, including Alissa Warren, are underinsured.