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!