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.”