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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Health Care Story of the Week - 12/10/09

It was only through Judy's diligence that her 12 year old son, Chase, received the care needed to correct a serious vision problem that limited his activities and ability to read. Chase’s optometrist prescribed vision therapy. After two months of therapy, his eyesight had improved significantly. However, at that point, less than halfway through his program, Judy received notice from TennCare that it would not pay for the treatment. She decided to pursue the care which was bringing her son’s world into focus.


After she received the TennCare denial letter, Judy contacted the Tennessee Justice Center, asking for assistance in presenting her case to TennCare for her son’s vision therapy. Between working at the YMCA and caring for Chase and his sister, she needed help in navigating the TennCare system. TJC explained what Chase’s rights are, and helped her file an appeal as well as supplementing Judy's appeal with a letter to the state about Chase’s situation.

In response to TJC’s letter, TennCare said that the vision therapy was experimental and denied it. The only alternative that TennCare offered was bifocals, which wouldn’t actually correct Chase’s eyes. Judy was determined to find a way to continue the therapy that was helping her son. Since Chase could not continue seeing his doctor, with the doctor’s guidance, his mother performed the vision therapy at home consistently. Through prayer, tenacity, hard work, friends’ support, and with two months of doctor-guided therapy, Chase’s vision is now normal.

“I wish TennCare would cover the treatment that benefited my son and other alternative treatments that could benefit other children,” said Judy. “Instead of facing a lifetime of vision problems, Chase’s vision is normal because of the therapy. A few months of vision treatment seems more medically and financially wise in the long run, instead of the bifocals offered by TennCare. Over the years, bifocals would cost more.”

Judy added, “At first I felt like I was all by myself, thinking ‘am I going crazy?’ not having anyone’s support legally. Because of TJC, I did not feel alone in navigating through the legal system. Thanks to all at TJC!”

Health Care Story of the Week - 12/2/09

Vicie loves children, and has adopted three special needs children, including her son Trevor. Trevor is extremely medically fragile, but he loves sitting in laps and being snuggled. He is non-ambulatory and non-verbal, but he loves listening to music. Trevor uses an overhead lift system to move and a percussion vest to help him breathe. Still, Vicie takes Trevor and his siblings out to the carnival and car races to enjoy their favorite activities. Trevor had been receiving full-time nursing care for three years. However, in July 2008, his TennCare home nursing care was unexpectedly and suddenly reduced by more than half. Taxpayers have already paid HMOs to provide Trevor the care he needs.

Frustrated but unwilling to take “no” for an answer, Vicie called TJC for help. TJC wrote a letter asking TennCare to provide Trevor the nursing care that his doctor had prescribed. Days later, Trevor’s care was reinstated and Vicie could breathe a sigh of relief. In her fight for Trevor’s care, Vicie also spoke for many other parents struggling to obtain care for their children.

Vicie also asked for TJC’s help with a TennCare policy that appeared to prevent her from leaving the house on short errands while the children were at home with their nurses. Vicie was faced with having to transport her three children, all of whom are wheelchair-bound, with her on the simplest trips to purchase groceries or to stop by the library – or not go at all. TJC wrote to TennCare about this apparent violation of the Americans with Disabilities Act. The state immediately clarified this rule so that Vicie and other parents like her are not forced to be homebound.

Vicie’s greatest hope for all children is that they can “enjoy life, live to their fullest potential, and not be held back because of disabilities.” She said it was a huge relief to have Trevor’s nursing care back, and to have the freedom to leave her home. “TJC is a lifesaver,” she said. “The folks I worked with at TJC really care about our family and will do what it takes to make sure my kids get the care they need.”

Health Care Story of the Week - 11/19/09

Even though it seems that families are far too often fighting losing battles, there is always hope. This week we are proud to bring a success story, achieved because of parents’ relentless dedication to ensuring their children receive the best care possible.

Four-year-old Rebecca Lyons-Winford and her three siblings escaped from a severely abusive home when they were adopted by moms Linda Winford and Kathy Lyons in 2005. Kathy is a retired Army chemical officer who now owns and operates a pet store, grooming and boarding facility. Linda is medically retired from the phone company and now cares for their four children full time. The children came to the Lyons-Winford home with broken bones, shaved heads, and behavioral problems. Each of the children has special needs. But with the love and care of their new family, the children have begun to heal, improving in school and gaining physical and emotional strength.

Last fall, Rebecca suffered an accident, nearly drowning in the family pool. After being rushed to the hospital and stabilized, the family began the long, slow process of recovery. Rebecca is on TennCare, which is required by law to provide the medical care children need. When the family called the Tennessee Justice Center, we began working to ensure TennCare complied with the law. Only three years old at the time of her accident, Rebecca’s life holds so much promise, and getting appropriate treatment is key to realizing her full potential.

One piece of medical equipment essential to Rebecca’s well-being is her Vest airway clearance system. This machine helps clear her lungs and prevent choking and respiratory infections. She has been successfully using the Vest for hundreds of hours, over the course of more than a year. Because of this, Rebecca has not been hospitalized for any type of pulmonary problems. This is a great feat, as many children in Rebecca's condition are continually hospitalized for pneumonia and other bronchial problems. In September 2009, TennCare wrote the family a letter saying it won’t pay for the Vest because it’s not needed to treat her medical problems and it is experimental.

Ms. Lyons and Ms. Winford talked with Rebecca’s doctor and got a letter explaining Rebecca’s needs and recommending the Vest. Then, in a hearing with TennCare attorneys and a judge, Ms. Lyons argued convincingly that it would be cheaper for TennCare and better for Rebecca to continue using the Vest. TennCare’s arguments that the care was experimental did not hold water. The judge ruled favorably, and now Rebecca continues to make improvements, both physically and mentally.

These mothers’ persistence and dedication to their children, even under adverse conditions, is remarkable. Because of their love, four Tennessee children have a real shot at living full, successful lives.

2009 Year-End Letter

The following is TJC's 2009 year-end letter, composed by Executive Director Gordon Bonnyman.  If you believe that TJC's work is necessary, please consider making a donation.  As we are constantly reminded through our service to our clients, even the smallest contribution can have a far-reaching impact.


Dear Friend of the Tennessee Justice Center:

Thank you for standing up for the rights of all through your support of the Tennessee Justice Center. As we reach the end of a most challenging year, I urge you to stand with us once again. We value your support and need your help. And so do the many vulnerable Tennesseans who look to TJC to make America’s promise of Equal Justice for All a reality in their lives.

On my desk is a postcard picture of Nelson Mandela, bearing his reminder that achieving justice “always seems impossible until it’s done.” Down the hall are historical images depicting inspiring Tennesseans of past generations, many of whom are nameless today. They worked tirelessly – fighting slavery, standing up for better working conditions and votes for women, marching for Civil Rights – to hold our nation true to its ideals. They remind us daily that nothing ever happens without the effort of lots of people who persevere even when justice seems unattainable. Their stories keep us going.

Most of all, it is our clients’ stories that keep us going. They remind us why TJC’s work for justice matters, even at times when justice seems all too distant.

Their cases involve the brutal necessities of life: subsistence for the states’ poorest families, health care, foster care, mental health services. Typical is the experience of Trina, who just learned that her 10 year old son, Darius, had brain cancer. Days later, she learned that his health coverage had been cancelled. The doctors said it was imperative for Darius to undergo surgery at once, but the hospital refused the surgery until Trina could produce proof of coverage. TennCare insisted Darius was not eligible, and his distraught mother could not get either TennCare or the hospital to budge. She contacted TJC, we got his TennCare reinstated immediately, and Darius underwent a successful operation. Relieved from the terror that her child would go untreated, Trina is now able to devote herself to mothering Darius through chemotherapy, and his doctors are optimistic.

Through your help TJC is the source of such life-giving support to hundreds of individual families yearly who have no place else to turn. And TJC’s class action and policy advocacy extend the impact of our work on behalf of individual clients like Darius to many thousands more. This year, for example, our TennCare advocacy preserved $300 million of medical and mental health services for some 45,000 adults and children with disabilities. And TJC identified unused federal economic recovery funds that enabled the legislature to restore another $25 million in services for foster children and people with severe mental illness.

TJC’s experience serving individual clients has also enabled us to identify structural weaknesses in the existing Medicaid program. Several reforms proposed by TJC have made their way into the pending health reform legislation. These include provisions that would:
• strengthen Medicaid patients’ access to physician services;
• tighten accountability by states and managed care contractors for their expenditure of federal Medicaid funds; and
• enable low income seniors to obtain affordable Medicare Supplement insurance when they lose Medicaid coverage

These technical fixes are “inside baseball,” devoid of the political and ideological overtones that have roiled the debate around health reform. But, if enacted, they have the potential to help hundreds of thousands of vulnerable Americans nationwide.
And yet, for all of TJC’s remarkable record of success, we don’t always succeed. No account of the past year would be accurate without acknowledging our failures. Because so much is at stake, the consequences of failure are often tragic, and cruelly unjust.

This year has been very difficult for hundreds of thousands of Tennessee families. The combined impact of the recession and of misguided state policies has cost Tennesseans hundreds of millions of dollars of much needed medical and mental health care. TJC lost several clients this year whose life-saving care was interrupted when they lost their health coverage. Many other clients had to watch their children suffer needlessly because the family lacked insurance.

As we have done for years, TJC has helped these families tell their stories to the media, at public forums and in legislative hearings. These courageous clients have reminded us that bearing witness against injustice is most essential at those very moments when justice seems most distant. We have been determined to stand with them in educating the public about how the current system betrays our national commitment to justice and equality.

But now, with health reform at the fore, we see glimmers that even work done without hope of tangible return may sometimes touch others in ways that matter. One of several clients who died needlessly in 2005, in the wake of TennCare purges that TJC slowed but could not stop, was a beautiful, vivacious young woman from Bristol named Nikki White. Her life-threatening lupus went untreated after she was cut from TennCare. Her doctor wrote sadly that, “Nikki died of complications of the failing American health care system.” It is too painful to imagine what her parents have suffered. Can injustice ever be crueler than when it costs your child’s life? Can justice ever feel more remote?

After Nikki died, I spoke to a reporter who interviewed Nikki’s parents and wrote a gripping account of Nikki’s death for the Wall Street Journal. Her story made an impression on T.R. Reid, who included it in his influential book, The Healing of America. In recent months, the story has been repeated in columns and editorials, cutting through the acrimony and political posturing to remind us all of what matters.

We don’t know at this point if there will be real health reform or, if there is, how to measure the impact of Nikki’s story. But surely her courageous parents have moved hearts and minds by their selfless desire to save others the pain they have suffered, and by their unflagging faith that America can be more just.

It is a privilege for TJC to serve such clients, and to work for the ideals we all hold dear. Please continue to be an indispensible partner in our work for justice. Thank you.

Sincerely yours,

Gordon Bonnyman
Executive Director

Health Care Story of the Week - 11/11/09

Terrell, age 3, has pulmonary hypertension, congestive heart failure, and is ventilator dependent. Though Terrell’s weak immune system confines him mostly to his home, he loves sitting in his backyard. His heart and lung problems prevent him from running around, but he still enjoys the sunshine. He is a bright boy, already learning to write his name and count.


At age 18 months, as Terrell was becoming more independent, his doctor ordered a special wheelchair for him. However, Irene, his grandmother, had to fight for seven months to obtain the wheelchair, although by federal law, children on TennCare like Terrell should receive all the medical care they need. In her fight to obtain the medical services that Terrell needed, Irene also spoke for many other parents struggling to receive care for their children.

Seven months after the doctor’s prescription for a wheelchair was submitted, Terrell still had not received his new chair. Terrell’s mobility was limited without the medical device the doctor ordered. It was impossible for Irene to lift Terrell, along with his oxygen tank and ventilator, suction machine, battery, and medicines – the equipment alone weighed more than 100 pounds – without the special wheelchair. Lacking the wheelchair, Terrell had been late to doctor’s appointments, and the family was increasingly desperate.

At this point, Irene called the Tennessee Justice Center. The TJC worked with her to write a letter of appeal to the state’s attorney. A few days later, Terrell was measured for his wheelchair, and soon it arrived. Irene said, “When all this started, I didn’t know where to go or who to turn to. With TJC on my side, I was able to stand up for Terrell and get him the care that his future depends upon. Having TJC helping me get things done really relieved a lot of stress.”

Health Care Story of the Week - 11/5/09

Bradley is dependent on a ventilator and a feeding tube. He cannot talk or move; he sits in a wheelchair during the day. Bradley relies on eye gazes to communicate.

Suzette, his mother, explains: "Bradley has not spoken any verbal words in his thirteen years, but his life has spoken volumes of his zeal to live. Despite his physical disabilities, Bradley loves to play basketball, attends school with his friends, and enjoys walking the dog and watching cop videos with his Dad. His perseverance, strength and courage, gives us the motivation to provide him with the best care that we can."

Bradley's father, Barry, works full time and his company provides health insurance for the family. However, in June 2006, the insurance company told the family that Bradley had exhausted his lifetime limits.

With Bradley’s continuing intensive medical needs, and no private insurance, the family was fortunate to have TennCare to rely on as a safety net for Bradley. However, after becoming exclusively reliant on TennCare, bills began to arrive. Children receiving TennCare benefits are not supposed to receive bills from providers. More and more of the illegal bills continued to arrive. The family talked with the hospital and with doctors, trying to assert their rights, however, they were tangled in billing bureaucracy. Worried about the mounting bills and the impact they might have on her son’s medical care and her family’s future, Suzette contacted the Tennessee Justice Center for help. After receiving letters from the Tennessee Justice Center, TennCare acted and notified the family that they were not liable for the bills.

However, Bradley and his family, as well as thousands of other Tennessee families face new hurdles. Pending changes to TennCare mean that Bradley could lose his TennCare coverage. Without TennCare, his family could be in very serious trouble, facing tremendous medical care challenges for Bradley and overwhelming financial problems.

Suzette said, "The work that the Justice Center does on behalf of the medically fragile children of Tennessee is greatly appreciated by our family and other families across the State...they have stepped in and become our advocate in the billing process for Bradley. This has removed the worry of billing and given us the time to focus on what is important - Bradley’s care."

TennCare stories in the media

Rebekah Hearn’s October 31st article, “TennCut: Why the state Medicaid program is slashing services to thousands of disabled people” tells the stories of 3 severely disabled Tennesseans whose lives depend on a program that is doing everything it can to exclude them.  The article includes several beautifully shot, intimate photos by Lance Murphey.  According to Ms. Hearn, about 84,000 Tennesseans have lost their TennCare coverage since cuts began earlier this year.  Below is a brief summary of the article.  The full article can be found at by clicking this link, and it truly is well worth the read.

“Thyroid disease, congestive heart failure, blood clots, anemia, and rheumatoid arthritis are just some of the health problems Memphian Ann B. wakes up to every day,” writes Ms. Hearn.  Since Ms. B. lost her TennCare coverage, TJC and her primary care physician have helped her apply for assistance.  Even with help from the Partnership for Prescription Assistance, Ms. B. is unable to pay for all the medicines she needs.  Losing TennCare coverage was, “like a sentence to die,” said Ms. B.  “I mean, if I don’t take my medicine, I’m dead.”

Brandon Byrd also faces the possibility of losing coverage.  At age 24, Mr. Byrd became a tracheotomy-dependent quadriplegic when he fell off a trampoline while playing with his children, ages 5 and 11.  Mr. Byrd requires constant care to keep his tracheotomy from clogging, which could be fatal.  If Mr. Byrd loses coverage, he will be forced into a nursing home, where his “quality of care will go down,” said one healthcare worker.  “They can’t make me go,” said Mr. Byrd. “I would stay at home as long as I could. I probably wouldn’t make it any longer than a week and a half. But I don’t want to go live in a place that could be even worse than prison, where I can’t even see my kids.”

Jacqueatha Philips was born with spina bifida, and needs catheterizations and help taking her medications.  Her mother, Linda Fann, became a certified Personal Assistant (PA) so that she could care for her daughter.  When TennCare tried to cut Ms. Philips’s in-home care, she appealed.  At the hearing, Ms. Fann argued that she was actually saving TennCare money by becoming a PA.  The judge agreed, and said Ms. Philips could keep her in-home care.  But TennCare overruled the judge’s decision and reduced her care anyway.

Ms. Hearn indicated that the healthcare situation for low-income Tennesseans will probably get worse before it gets better:  CoverKids, a program that covers low income children and pregnant women, will stop accepting new enrollees Nov. 30 despite increased federal matching funds. TennCare is also putting American Recovery and Reinvestment Act money into the reserves even though federal law requires that it be spent right away.

Jane Beasley Receives Award from Mayor’s Advisory Committee for People with Disabilities

TJC's latest press release, regarding senior paralegal Jane Beasley's recent award!



Jane Beasley, senior client advocate and paralegal at the Tennessee Justice Center (TJC), has received the Professional Award from the Mayor’s Advisory Committee for People with Disabilities in recognition of her work in improving and enhancing the lives of people with disabilities. The award was presented to Beasley during an awards ceremony and reception held at the Frist Center in Nashville.


“I am truly honored to receive this award. It is a privilege to be an advocate for our disabled clients, who often cannot speak on their own behalf,” said Beasley. “Their courage and persistence is inspiring to me and everyone at the Tennessee Justice Center.”

Beasley joined TJC in 1998. She is an expert in the complex rules of eligibility for public programs, and assists disabled and sick clients who need help with TennCare and Families First. She also advocates on behalf of clients who have lost their benefits. Prior to joining TJC, Beasley was the coordinator of the Insurance Counseling and Assistance Program at the Legal Aid Society of Middle Tennessee, assisting clients on issues surrounding Medicare, TennCare, long-term health insurance, and Medicare supplement policies.

“Jane has improved life for thousands of Tennesseans with disabilities,” said Gordon Bonnyman, executive director of Tennessee Justice Center. “In some cases, she has enabled people to obtain medical care that they credited with saving their lives. Her advocacy for individuals and her contributions to systemic reforms have helped countless Tennesseans with disabilities maintain or enhance their independence.”

Since 1981, the Mayor’s Advisory Committee for People with Disabilities has presented awards of recognition to outstanding individuals whose efforts have enhanced the lives of those in the disability community in Nashville. Awards were presented in 13 categories this year.

The Tennessee Justice Center (TJC) is a non-profit public interest law and advocacy firm serving Tennessee’s families. It gives priority to policy issues and civil cases in which the most basic necessities of life are at stake and where advocacy can benefit needy families statewide. TJC works to empower its clients by holding government accountable for its policies and actions. TJC was established in 1996 and is located at 301 Charlotte Avenue, Nashville, TN. For additional information about the Tennessee Justice Center and its services, visit www.tnjustice.org or call 615-255-0331.

Health Care Story of the Week - 10/28/09

Julie is a 40 year-old mother of 3 in Jackson, Tennessee. In 2005, Julie was in a car accident that left her paralyzed from the neck down. She has a tracheotomy and requires a ventilator to breathe. Nevertheless, she is able to raise her children, attend church, and remain active in the community because of the nurses that TennCare provides for her at home. Now, TennCare is telling her that she will lose her nurses, because it is cheaper to care for her in a nursing home that is almost 75 miles away.

After Julie’s accident and rehabilitation, she was transferred to a nursing home. Unfortunately, her needs were so persistent that the nursing home was unable to provide enough one-on-one care for her. She would frequently come down with pneumonia or develop bedsores. She spent several years of her life bouncing back and forth between nursing homes across the state that could not adequately care for her and hospitals that treated her when she got sick due to lack of care. On several occasions she lost her spot at a nursing home because her recovery in the hospital lasted so long.

In April of this year, she moved home with 24/7 private duty nursing services. Since then, her health has improved, she has not been hospitalized for avoidable illnesses, and she has spent time with her family every day. She lives with her mother, and her sons live with her husband in their old house. Her sons frequently spend the night at their grandmother’s so they can be with their mother, and she is able to help them with their homework after school and see them almost every day.

Recently, Julie was told that TennCare would reduce her nursing hours. TennCare rules say that they will not pay more for nursing than a nursing home would cost. This is called the “least-costly adequate alternative” clause of Tennessee’s medical necessity definition. Julie was also told that she only qualified for TennCare originally because she was institutionalized. Now that she has moved home, TennCare says that she no longer qualifies under that category or any other. Julie used to have private primary insurance, but she reached her lifetime benefit earlier this year and lost it.

Julie currently has a pro bono attorney helping her appeal both issues. She recently had her hearing about keeping her nursing hours. Her doctors and nurses testified that a nursing home would not be a safe place for her to live. Her eligibility hearing will be in November. Julie would be eligible under the Spend Down category, which Tennessee is obligated to keep open due to the state’s acceptance of federal stimulus money. However, this category remains closed. Julie’s story is a perfect example of how gaps in the health care system can tear apart families.

Health Care Story of the Week - 10/21/09

Rylee Sandlin of Nashville is only eight years old, but she already faces health insurance barriers that threaten to shape her life for years to come.

Rylee is fortunate to have health coverage under her mother’s insurance plan. But like so many other parents, the Sandlins have found that even “good” coverage like theirs does not really protect a child with costly health care needs.

Rylee has autism. She has had a difficult, frustrating struggle to develop communication abilities that come effortlessly to most children. But with determination, and the aid of her parents and professional speech therapy, Rylee has come a long way.

She still has a long way to go, though, to develop the skills needed to achieve independence and to fully enjoy relationships with other people. Therapy, which costs $150 per session, remains essential, but Rylee’s insurance won’t cover it. The Sandlins have spent nearly $50,000 paying for the therapy themselves, but now they have exhausted their resources.

It is heartbreaking for the family to watch Rylee losing ground, knowing that it does not have to be that way. “There is nothing harder in this world than to see that your child is suffering, and to know that there is something available to help, but to not be able to provide it for them,” says Keely Sandlin, Rylee’s mom. “We just want for Rylee what every parent wants for their child. It is plain wrong that, even with two parents with decent incomes and ‘good’ insurance, children like Rylee should have to go without. Surely, in America, we can do better than that.”

Health Care Story of the Week - 10/14/09

Shana Atchley, a beautiful young woman from Lebanon, Tennessee, represents the sort of medical miracles that America’s dedicated doctors and nurses perform every day. But now her life is in danger, and she embodies the tragic failures of a health insurance system that so often defeats the best efforts of our medical professionals.

When Shana was born with half of her heart missing, doctors did not think she would make it through the night. Thanks to extraordinary care, she survived. But then, at age five, her immune system shut down and she became very sick. “She was placed on the Heart Transplant list but we were informed that she would probably die waiting,” said Penny Shoemake, Shana’s mom. “Well lo and behold, our prayers had been answered, and two days after getting placed on the transplant list, a heart was available,” she said.

Since age 8, Shana has undergone four bouts of cancer and chemotherapy. The last bout of cancer, during her senior year of high school, was the worst. “She was deathly sick and in and out of the emergency room many times over the course of her treatment,” said Ms. Shoemake. But Shana never stopped fighting, and the treatment worked. Last April, Shana attended her senior prom. A few months later, she graduated from high school with a straight-A report card.

The cancers are caused by the anti-rejection medicine that Shana needs to take to live. Without the medicine, her body would attack the transplanted heart. Shana’s doctors say the anti-rejection medicine will continue to cause her to get cancer.

Shana started college this fall, and works part-time at a restaurant. Until recently, she was insured by TennCare. On September 17, 2009, Shana was cut from TennCare due to the lifting of the Daniels injunction. Now, she is totally uninsured.

“I don’t understand how TennCare can take away coverage on someone that needs it,” said Ms. Shoemake. “Our family does not make enough to pay for her $500 per month medication or her specialists and all the tests that are involved to keep a person alive who has had a transplant of any kind.”

“Considering all that this child has been through, she is an inspiration to me because she never gives up no matter how hard it gets,” said Ms. Shoemake. “I am asking that they let my daughter have health coverage in order to live a more healthy and abundant life.”

The current health care system, with its gaps and barriers, threatens to undo all the good work of Shana’s caregivers, and to defeat her own courageous efforts, by denying the preventive care without which she faces certain death. For Shana, her mother, and her Lebanon community, an investment in her well-being would pay dividends for years to come. Without reform, the present insurance system will rob us all of everything that Shana – and many other inspiring young Americans like her – has to give.

Health Care Story of the Week - 10/8/09

Every week we post a health care story, and this week we share three! Some of these stories were shared at a rally held this week in front of the Blue Cross/ Blue Shield office in Nashville. TJC is partnering with other non-profits to show how the current system is failing many Americans, and why reform is urgently needed. Among the flaws that need to be fixed are the lack of coverage for people with serious health problems and the un-affordability of coverage for many small businesses and working families. Here are the stories of three of our fellow Tennesseans:


Mark runs a sawmill business in McMinnville. The insurance company has upped the price tag on his employees’ health insurance by 100% since 2001, putting health care among the company’s top expenses. “I don’t want to drop their insurance, because they’re my friends. I grew up with them,” he says. Mark is in a very difficult position; he must choose to either put more of an economic burden on his workers or drop their insurance to save the business and their jobs.

Beth of Blountville is 26 and has a rare, but treatable vascular disease. Since she had to quit her job as a general manager at a restaurant in order to manage her illness, she lost her employer-sponsored health insurance. No private health insurance company will touch her and she is not eligible for Medicaid. With her medical bills totaling six figures, Beth’s only hope is a public option.


Earl, 54, of Dickson received a successful heart transplant 12 years ago. Medicaid saved his life when private insurers denied him coverage. Now, he’s being dropped from Medicaid. Earl cannot afford the daily medications that keep his heart beating and relies on a spotty safety net to stay alive.

If you want to attend future rallies and forums in support of health care reform, be sure to visit our Facebook page.

Dean Andrews, who contributed to this piece, is a TJC intern, focusing on legal research and public information.

Health Care Story of the Week - 9/30/09

Brittany is the mother of two-year-old identical twins Addleigh and Kennedi. She runs a church day care, and gets to work with children throughout the day. However, Brittany’s twins get her extra love and care not only because they are hers, but because they both have medical conditions that cause seizures, muscle weakness, and developmental delays. Neither Brittany nor her husband has health insurance through their jobs, so TennCare has been essential in caring for the twins’ special medical needs. Around the girls’ first birthday, normally a time for celebration, the family was notified that the girls’ TennCare coverage would be discontinued. Brittany was afraid their family might “lose everything that we’d ever worked for.” Brittany appealed the decision and called TJC for help.

TJC client advocates immediately recognized that the twins were still eligible for TennCare in another way. After a phone call from TJC to the Department of Human Services to correct the mistake, the girls’ TennCare was reinstated.

Brittany was overjoyed that her twin girls were safe. As she says, “Addleigh and Kennedi are my greatest blessing.” But she also wanted to ensure that all Tennessee children are protected from similar mistakes and oversights. She worked with TJC to write a letter to TennCare, sharing the twins’ story as well as experiences of other families. In response, TennCare described the new training it has implemented to improve the accuracy of eligibility screens.

In her fight for her twins, Brittany also spoke for many other parents struggling to receive care for their children. She said, “The thought of losing health insurance for my girls was terrifying. TJC helped me solve a problem I had thought was insurmountable, and put my mind at ease.” She continued, “I’m just a mom, and moms do whatever their kids need them to do. I will continue to do what I can to help other families.”

Click here to hear Brittany tell her story in her own voice.

The latest figures show that more than 126,000 Tennessee children age 0-18 are uninsured. For kids whose parents don’t get insurance through their employer (e.g. self-employed, work for a small business, laid off), programs like TennCare and CoverKids can help. But still, many children either do not qualify for or are not enrolled in these programs. Our current health care system, which leaves millions of innocent children without any health insurance, is broken. If children are our greatest resource for the future – we should treat them as such. Let’s invest in America’s success by insuring all children now! Learn more about this issue at the Children’s Defense Fund website.

TJC Director Gordon Bonnyman Wins National Award!

We're proud to announce that Gordon Bonnyman, Executive Director of the Tennessee Justice Center, has just been awarded the prestigious Morris Dees Justice Award by the University of Alabama School of Law. Read the Nashville Post's coverage.

TJC's Susanne Bennett, Shares Her Experiences from Speaking with Foster Parents

Through my outreach, I’ve met many caring foster families who face challenges accessing necessary care for their foster children. They receive children with open arms but are often not provided with the appropriate resources to help foster children on their path to permanency.

Some of the resources foster parents are left without are related to accessing healthcare services for foster children. I’ve talked with foster parents who did not have TennCare cards for their foster children, did not know which providers to take their foster children to, experienced a delay in their foster child’s enrollment in TennCare, or had a foster child who was waiting for dental care or glasses.

I encourage foster parents to insist that TennCare provide the care their foster children need by filling out a TennCare appeal form. Foster parents have a right to file TennCare appeals and doing so can go a long way towards helping a foster child get needed care. Sadly, many foster parents don’t know that they have this right and feel powerless watching their foster child wait for needed care.

That’s where the LEASE project – Legal Education, Advocacy, Services and Empowerment – comes in. The LEASE project helps middle Tennessee foster children enrolled in TennCare obtain needed health and mental health services. LEASE assists middle Tennessee foster families with legal advocacy techniques and individualized legal advice. Through the LEASE project, I’m lucky to have the chance to help folks like Rebecca.*

* See yesterday's (9/16/09) post to read Rebecca's story

Health Care Story of the Week - 9/16/09

Velma’s teenage granddaughter and foster daughter, Rebecca, struggles with scoliosis and ADHD (attention deficit/hyperactivity disorder). Rebecca loves animals and the outdoors. She plans to continue her education and hopes to become a nurse’s assistant. She requires physical therapy for severe back pain and medication for her ADHD. At age 18 she aged out of state custody, but due to a bureaucratic oversight she was dropped from TennCare. At this vulnerable time in Rebecca’s life, as she entered adulthood, the healthcare safety net showed gaping holes.

During the period she went uninsured, Rebecca’s scoliosis and ADHD persisted. While Velma managed to pay for her granddaughter’s prescriptions out of pocket, Rebecca lost valuable physical therapy time. Velma worked with TJC to get Rebecca’s TennCare reinstated, and to file an appeal for her out-of-pocket expenses, which were eventually reimbursed. Velma also worked with TJC to write a letter to the state, asking that other children not encounter the same barriers to getting needed care that Rebecca experienced.

Velma said, “With the Tennessee Justice Center’s help, I was able to get Rebecca’s TennCare back. Now, she will be able to go out into the world with the insurance she needs to stay healthy.” She continued, “I would do anything to help Rebecca and other young people keep their health care.” In her fight to reinstate Rebecca’s care, Velma also spoke for many other parents struggling to obtain care for their children.

There are several ways for Tennessee children to get public health insurance. If your child (under 21 years old) is uninsured or needs more health insurance, call our office to see if she might qualify for TennCare or CoverKids. Call us toll free at 1-877-608-1009. Is your child or foster child having trouble getting services under TennCare? We can help! Call us toll free at 1-877-608-1009. Also visit our website at http://www.tnjustice.org/.

Health Care Story of the Week - 9/9/09

“Last Thursday, September 3, was the three year anniversary of Dylan’s wreck. That day, I told Dylan’s story in front of a 400-person crowd in Murfreesboro. It was my way of honoring my son and helping move our country toward a health system that cares for all Americans.” – Dottie Cordle

Dylan Cordle was born and raised in Middle Tennessee, but he was forced to leave his home in order to get medical care. At age 17, a senior in high school, Dylan suffered a traumatic brain injury in a motor vehicle accident. He was in a coma for four months, but eventually came to, and began therapies to help him regain life skills. A little over 2 years post-accident, Dylan completed high school and received his diploma.

During Dylan’s slow recovery, his mother Dottie Cordle was there for him each step of the way. Dottie owns a small embroidery shop called “Eye for Sewing,” and juggling a business and her son’s medical care became more than a full time job.

Dylan had private insurance through his mother’s work, and also qualified for TennCare. Even with two insurance plans, Dylan was unable to get the care he needed in Tennessee. Although children under 21 on TennCare are by law supposed to receive all medically necessary care, Dylan was turned down for acute inpatient rehabilitation which his doctors prescribed. Dottie fought TennCare to cover the service, but she lost.

Likewise, Dylan’s eye doctor said that he clearly needed neuro-rehabilitation, but many insurers, including TennCare routinely deny it, calling it “experimental.” Meanwhile, Medicare recognizes the treatment as safe, and with this treatment, his doctor thinks Dylan would have been better able to perform basic daily activities.

Without the medical care he needed, Dylan’s progress slowed. He remained unable to care for himself, and was socially isolated from his peers. His family and his doctors knew it was not a physical limitation that was holding Dylan back, but an insurance one.

Then, Dottie heard that Kentucky has a traumatic brain injury program for kids like Dylan. Since Dylan’s grandmother lives in Kentucky, the family made the difficult but clear decision to move Dylan out of state for treatment.

The care Dylan had fought so hard for in Tennessee but was unable to get was readily available across state lines. Dylan has already been in the program for about one month and is making progress. In addition to getting the therapies and doctor visits he needs, he participates in community outings with other individuals with brain injuries.


In Tennessee with TennCare, Dylan could not get the care that doctors ordered for him. A few hours away, getting the care he needs is easy. Ms. Cordle thinks there is something wrong with this picture. Her family has been in Tennessee for since 1984, and Dylan was born and raised here, yet he had to leave to get care. “Tennessee ought to provide its children with the best chance to reach their potential,” she said, “or else we risk pushing our kids out of state and draining Tennessee of its most valuable natural resource.”

Video Conference for Advocates and Consumers 9/17/09 (rescheduled date)

Were you, a loved one, or a patient/client in the Daniels class and now being cut off TennCare?

September 17 (rescheduled date) you're invited to join an expert panel on at 9:30 Central/ 10:30 Eastern Time for a 1.5 hour video conference. The conference, which will include time for questions, will tell you what you can do to keep TennCare if you are eligible. If you are not eligible, it will cover other options.

Please visit the TJC website again for instructions on how to sign in to the video conference and links to presentation materials.

Health Care Story of the Week - 9/2/09

Ann B., though sick, is full of life. Ann wants to live for her son, to see him go to college. She lives in Memphis with her husband and 18 year-old. Her husband is a military veteran and receives his health care through the VA, and her son, who will graduate high school this year, is on TennCare. These programs help her husband, who is 67 years old, nearly blind, on oxygen, and barely able to walk and her healthy son get the medical care they need. Ann, however, was recently cut from TennCare due to a change in the program’s eligibility categories. TennCare sent a list of private companies from which Ann could purchase insurance. She called them all, and the lowest monthly premium was $600, almost 30% of the family’s monthly income, and much more than they can afford.

Ann relies on about 15 medications daily, as well as regular lab visits and doctor’s appointments to stay healthy enough to care for her son, husband, and herself. She suffers from rheumatoid arthritis, and without a chemotherapy medicine and regular lab checks, she would not be able to bathe, brush her teeth, cook, write, or drive. With the medication, she can do all of these things. Ann also has thyroid disease, congestive heart failure, blood clots, anemia, and other serious conditions, all of which require medicines and ongoing medical treatment.

She’s 62 years old – too young for Medicare – and she cannot get onto the Medicare program through a disability determination because she stopped working due to illness one quarter too early to qualify. Ann is calling prescription assistance programs, calling her elected officials, and telling her story to the media in hopes that someone will help her get her medicines and afford the doctor’s visits. But, Ann feels hopeless, as if there is no help to be found. She says that losing her TennCare is like a “sentence to die.”

Right now, Ann is completely out of her chemo pills and is already foregoing care. The household relies entirely on the fixed retirement income of less than $25,000 per year. After paying their house note, utilities, and gas, there’s virtually nothing left. They applied for Food Stamps, but were a few dollars over the limit. Ann knows from previous experience what it feels like to choose between food and medicines. She said that “when your stomach is grumbling, you’ll always choose the peanut butter sandwich over a pill.”

Ann is one of the thousands of Tennesseans who have fallen into the cracks in the health care system. She warns others, “don’t get sick like me,” for there may be little help to be found. For now, Ann looks for help wherever she can, and wonders why the richest country on earth continues to leave behind its own citizens.

Health Care Story of the Week - 8/26/09

Brandon has two young sons, ages 11 and 5. In 2004, he was playing with his son on a trampoline when a fall caused severe injuries to his spine. A quadriplegic as a result of this accident, Brandon now relies on TennCare-provided nurses and aides to care for him. Brandon went from working full time with his father as an industrial laborer, to needing constant care. In his words, he “depends on someone else’s hands” for everything he does. He also has a tracheostomy, which causes breathing problems and requires skilled care. Brandon is an active father despite his disabilities, and enjoys spending time with his sons. He’s also a college student, and is in the middle of his fifth term towards a degree in Business and Accounting. The one-on-one attention that his nurses and aides provide is working miracles for his health, and Brandon is slowly regaining some movement in his left arm.

A change to TennCare’s home health policies last fall, and the disappearance of a TennCare eligibility category, now threaten the life that Brandon has built since his accident. Essentially, TennCare is now requiring Tennesseans who need extensive care to make do with a dramatic reduction in home health hours or go into nursing homes, where the care would ostensibly be cheaper. Adding insult to injury, Brandon may lose his TennCare altogether because TennCare closed the category of eligibility Brandon qualified for.

Brandon says that there is more to care than its price tag, and his doctors agree that Brandon’s health would suffer in a nursing home. His tracheostomy requires frequent suctioning, and his doctors fear that he wouldn’t get the attention needed to keep him safe in a nursing home. Brandon lives with his grandmother, who does what she can to help, but is not physically able or properly trained to keep her grandson healthy and safe. Without constant in-home care, Brandon will be forced into a nursing home, to drop out of school, and to leave the community where his sons live. If Brandon loses his TennCare entirely, he’ll lose all his services and be left with no option but institutionalization, all before his 30th birthday.

The cuts that threaten Brandon’s family are in stark contrast to the recent promises to increase home and community based services for disabled Tennesseans. Cutting disabled individuals from TennCare flies in the face of the national movement to provide quality affordable choices for all Americans. Tennessee ranks among the worst states for home and community based options. Solutions such as the Long Term Care Choices Act were touted as improvements that would help keep families like Brandon’s together. Unfortunately, the State has not honored its promises, and many families now find themselves with no choice but to split up or face inadequate care. Likewise, the state has promised for years to open the Standard Spend Down program, a way for people losing TennCare to get back on if their medical bills are nearly equal to their monthly income. Still, the program remains closed, TennCare retains a surplus of millions of dollars, and Tennesseans like Brandon suffer.

Determined to keep his family together and to stand up for disabled parents across Tennessee, Brandon contacted the Tennessee Justice Center (TJC). With the help of TJC and Memphis attorney Linda Casals, Brandon is fighting his home health cuts in Chancery Court. Brandon has shared his story with legislators on the State and Federal level, and continues to be a strong advocate for all families struggling with health care issues. TJC recognized Brandon as a Father of the Year in 2009, and held a reception in Memphis in his honor.

New! Healthcare Story Series

Check our blog each week for a different health care story highlighting the current state of health care in Tennessee. Let us know what you think!

Health Care Story of the Week

Jennifer Perry is an energetic 32 year old. She volunteers at the Montgomery Christian Academy, where music students know her as “pretty Miss Jennifer.” Jennifer likes singing opera and art music, and has a Bachelor of Arts with a vocal concentration. Many of the people she met as President of the Handicap Educational Liaison Partners were surprised to learn that she is disabled, because she looks able-bodied and healthy. But Jennifer has advanced multiple sclerosis (MS), a disease that makes the brain and spinal cord unable to communicate with each other.

Jennifer had been on TennCare for about seven years when she received a letter that said she would be cut off later this month.

Among other symptoms, MS gives Jennifer blurry vision, numbness in her fingers, difficulty balancing, breathing, and moving, urinary and bowel difficulty, hypersomnia (similar to narcolepsy), hives, a weak immune system, severe allergies, muscle spasms, chronic pain, severe migraines, blackouts, mood disorder, and depression. She has had to have her front teeth replaced multiple times due to falling, and was recently forced to quit her job at a household appliance store because her symptoms were getting so bad.

Due to the two year waiting period, Jennifer will not be eligible for Medicare until late 2010. Without TennCare or Medicare, she will not be able to afford most of the roughly 25 medications she needs to remain stable. Her medications cost about $60,000 per year, but her annual income is below $10,000. “If I don’t have my medicine, something bad is going to happen to me,” she said.

Despite her disability, Jennifer worked from age 16 until just a few months ago, when her symptoms got so bad that she was forced to stop. Then, Jennifer’s father passed away suddenly. This and her escalating symptoms made her decide to move in with her elderly mother, who is also disabled. But Jennifer’s troubles weren’t over yet. Soon afterwards, she received the letter about her TennCare ending. Jennifer and her mother pray that Jennifer will find some way to get the health care her life depends upon.

TJC's Emily Einstein Shares Her Thoughts

I’m a paralegal/client-advocate at the Tennessee Justice Center. One of my duties includes taking calls from Tennesseans who are having trouble getting medically necessary services through TennCare. I listen to their stories and then help them get the services they need. By the time Ms. Dixon called me about helping her get Terrell’s wheelchair, she was worn out with trying to carry Terrell and all of his heavy medical machinery to doctors appointments. After we spoke, I helped her file a TennCare appeal and wrote a letter on Terrell’s behalf to the State’s attorneys. Later, I contacted the wheelchair company every few days until the wheelchair was delivered.

This was my first client success story since I started working at TJC. It felt so good to be able to help a child in need get a service that allows him to live a better life. When Ms. Dixon called me about the wheelchair, it had been months since the doctor had ordered the wheelchair but it still had not been delivered. I thought how difficult it must have been to have a sick child to transport without the aid of a wheelchair. Terrell definitely needed a wheelchair and I was glad that I could help him get one.

Working for TJC has opened my eyes to how hard it is for many children in Tennessee to get the medical services they need. Some of these families give up hope once their child is denied a service; I’m thankful that TJC steps in for families who are exhausted of fighting for care. Being a part of helping children, like Terrell, get services has been so meaningful.

Tennessee Legislature Undecided About Home Health Limits

On Monday, March 30, TennCare recipients hurt by the fall 2008 home health limits testified before the legislature's Joint Committee on Government Operations. They asked the committee to make a negative recommendation on these TennCare rules, so they could receive adequate care in their homes. The committee, moved by this testimony, made a neutral recommendation, which means the rules will be reviewed again. ACTION ALERT: Your calls are needed! Contact your legislator and ask that he or she fix the rules. If not on the committees, ask that he or she contact committee members about this issue. Here is a list of legislators on the key committees who will decide this issue. Click here to find your legislator. Click here for ideas on what to say to your legislator. Want to do more? Start a petition at your local school, church, or neighborhood group to oppose the cuts! See a sample petition.

2009 Mothers of the Year Announced and Honored

Six mothers from across the state have been selected as this year's TJC Mothers of the Year. A reception was held in their honor on May 7, 2009 in downtown Nashville. The public was invited to join us at this free annual event. Read the stories of these courageous women. The Mother's of the Year Awards have received media coverage across the state. See a sampling of media outlets that have carried these stories.

At the reception, we announced the winners of the first annual TJC Pro Bono Awards! Mike Abelow was honored as the TJC Pro Bono Attorney of the Year. Bradley Arant Boult Cummings LLP was chosen as the Pro Bono Firm of the Year.

Also for the first time this year, TJC honors two Community Mothers of the Year. These mothers were nominated by their children and selected by TJC. Read their stories.

Kids' Contest: Calling All Mother's of the Year!
Did your mom or foster mom help get you health care? You can nominate her as a Mother of the Year! <more>

Daniels Class: Are you on TennCare? And did you use to get SSI checks?

Here's what to do to help keep your TennCare. <more>

Are You or a Loved One Suffering from the Home Health Cuts?

Court Has Ruled: Cuts Violate the Americans with Disabilities Act

Get more information about how to appeal here. For updates about Crabtree v. Goetz, a case challenging the home health cuts, click here. If TennCare plans to cut, or has already cut, home nursing services for you or someone you know, and you or that person may need hospital or nursing home care as a result, you can call us at 1-877-608-1009 to see if the Crabtree case might help you.