MOTHERS OF THE YEAR
20 Years of Celebrating Mother’s Day with Our Amazing Clients
For her perseverance and braveness in the face of adversity, Tennessee Justice Center honors Ms. Chelsea Anders as a 2020 Mother of the Year.
In 2010, Ms. Anders had to undergo surgery in order to treat a mass on her brain; the mass caused her to begin having seizures. She went through multiple surgeries which left her unsure if she would ever be able to have a baby. Miraculously, Ms. Anders learned she was pregnant in 2017, and her daughter, Skai was born. Skai was born with spina bifida which requires significant medical care. Because Ms. Anders was on TennCare when her daughter was born, her daughter was automatically enrolled onto TennCare and immediately began to receive the medical care she needs. Skai endured more than seven surgeries over the course of her first year of life as well as numerous medical tests and constant medication adjustments.
In the summer of 2019, as Ms. Anders prepared to bring her daughter to one of her scheduled appointments, the provider cancelled the appointment because their system showed that Skai appeared to have lost her TennCare coverage. Ms. Anders was shocked—she had no idea that her daughter had been terminated from TennCare. She immediately contacted TennCare, trying to understand what happened and filing an appeal. Ms. Anders was confused because the only reason why she herself was able to have TennCare was because of her daughter. Unfortunately, because of a timing issue, TennCare did not provide her daughter a continuation of benefits during the appeal, so her daughter lost her coverage.
Ms. Anders attempted to resolve the issue on her own while trying to provide the best care for her daughter that she could. Ms. Anders even reached out to her local county health department for help, but they were not able to fix TennCare’s error. She then got in touch with TJC and after several letters in support of the appeal were sent to the TennCare appeals unit, TJC and Ms. Anders were finally able to get her daughter reenrolled—and with backdated coverage! Ms. Anders continues to advocate for children like hers who have been wrongfully disenrolled from TennCare, and who have become uninsured and forced to go without the healthcare they need.
Photo Credit: Demetria Kalodimos
For her determination in advocating for the needs of her children and so many others, the Tennessee Justice Center honors Tina Claxton.
Tina Claxton describes herself as ” just a mom who loves her kids.” She is a working single mother of two: a 27-year-old son named Jordan and a 24-year-old daughter named Abby, who has a fatal health condition. Abby was diagnosed at 10 months with Hurler Syndrome and her brother Jordan was the bone marrow donor that saved her life. She has had multiple orthopedic surgeries and various other health issues. Jordan is so wonderful to his sister. Tina is aware that it isn’t easy living in the shadows of a sibling whose health takes precedence a great deal of the time and is so grateful for Jordan. Tina raised them both to be independent individuals and she has accomplished that. She is a religious person and believes that God gave her Jordan first because He knew Abby would need him and that they are both truly miracles. Two years ago, Abby was diagnosed with pulmonary hypertension and diastolic heart failure which was the result of the chemotherapy and radiation that was required during her bone marrow transplant. In a short time, she went from being very independent to becoming more dependent. This however has not changed her smile, personality or how she brings so much joy into everyone’s life. She loves music and her reality TV shows. She stays in contact with her friends and keeps herself up to date on what is going on in everyone’s life. She has gone through all the phases that anyone who has been given a fatal diagnosis would. She lives in acceptance now.
Tina is a true advocate. When asked about her hobby, she said “my hobby is that I try to help people with their issues with insurance or schools that do not follow Individualized Education Programs.” She loves to educate people on their ability to say “no!”, whether it is because they don’t feel comfortable with their doctor or because insurance isn’t covering their needs. She supports others so that they can know they have the right to second opinions and other types of treatment. Tina’s patient advocacy started the day Vanderbilt sent Abby home and “told me she was going to die and just to love her ’til she did.” It was only a matter of time before Tina found the treatment Abby needed in Minneapolis, MN. Tina wants everyone to have the best healthcare and treatments they possibly can have. “No” isn’t an option for her.
Tina calls TJC her legal heroes. When Tina couldn’t get Abby’s back surgery approved, she called TJC and a client advocate stepped in and got it covered. Recently, Tina had an issue she brought to TJC for one of Abby’s new medications that the insurance company wouldn’t approve—the cost was approximately $1,000. There was a court date scheduled and when TJC came into the picture, the insurance company changed their minds. A victory without a fight!
Tina has also been a fierce advocate for change in the TJC network. Last fall, during the Medicaid block grant proposal hearings, Tina stood up in front of hundreds of people and numerous news cameras to tell the story of Abby’s condition and to fight for the healthcare rights of all Tennesseans. She moved the whole audience to tears. It is our great honor to recognize Tina as a 2020 Mother of the Year for being “just a mom” and so much more.
When asked to talk about herself Tina says, “I find it difficult to talk about myself because I am just a mother. I chose to have children and take care of them no matter what. That’s what I continue to do. I have learned an enormous amount about patient advocacy over the past 25 years. First you have to educate yourself and then sometimes others of her condition. Then you learn to stand up to insurance companies, doctors and schools. Raising any child takes a village. Abby’s village is extremely large!! I am grateful to each and every one who has helped her to get where she is today. Abby is always so appreciative of everything I do for her. She is the sweetest. Every day she will ask me how my friends are doing. She tells me every day how proud she is of me.”
DONNA MARIE COOPER
DONNA MARIE COOPER
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Donna Cooper has been fighting “like a mama warrior” for her son Jonathan to receive the healthcare, therapy, inclusion support, and resources that he has needed all his life. It began when he started showing symptoms of autism at 10 months old. Donna fought for him to receive an evaluation so intervention could begin as early as possible to manage his condition. Though she worried that he would not develop speech, he started recognizing printed words at two-and-a-half years old, as she watched him match 50 words to pictures. Though there was not a single word Jonathan understood auditorily, he had taught himself to read. Jonathan’s love for reading was used to help him communicate, and eventually, he learned to speak.
Donna has said that she often felt very alone as the parent of a child with disabilities, so she has channeled this into helping other parents in the same boat navigate the experience. When she first applied for SSI benefits for Jonathan, she felt so overwhelmed by the process that she cried the night before her interview. But then she figured out a system to organize all the medical and educational documentation that she needed for the interview, and she was approved for SSI without the help of an attorney. Since then she has shared her system with parents who have reached out for help in applying for SSI, and several of those parents have been approved without needing an attorney’s help as well.
At 12 years old, Jonathan developed type I diabetes, Hashimoto’s disease, and alopecia. When he needed treatment in a residential facility to help manage his emotions, Donna struggled to find a facility that would take him because of his diabetes. She found a center in Atlanta that would only accept him for six weeks which she knew was not enough time to treat him effectively. Donna called the Tennessee Justice Center, who worked with her insurance provider and the care facility to secure eight months of treatment for Jonathan.
Later, when Jonathan applied for the ECF CHOICES program he was initially denied and told that he did not have a disability. Donna contacted TJC, who helped her draft a letter in response to Jonathan’s denial. He was approved for the program ten days later. The in-person assessment determined that he was in the highest category of need. Jonathan now lives in Clarksville in a Community Living Supported home through the ECF Choices program.
Jonathan is an avid Pokémon player and has competed in multiple Pokémon tournaments, which his mother says have helped him develop sportsmanship and social skills. He also loves exotic cars. For his 14th birthday, Donna took Jonathan to an exotic car show where he got to ride in his favorite car for half an hour! Donna recently joined the advisory board for ECF CHOICES and is excited to bring her experience with the program as a parent to this role.
TJC is proud to honor Donna Cooper as a 2020 Mother of the Year because of her commitment to fighting for the care that her son needs and her ability to use her experiences to help other parents do the same for their children.
Donna Marie Cooper
The Tennessee Justice Center is honored to recognize Ms. DiJuana Davis as a 2020 Mother of the Year.
DiJuana is the mother of five children and is pregnant with her sixth. She was born and raised in Nashville, where she currently lives with her family. DiJuana reached out to the Tennessee Justice Center after she took her daughter to the emergency room and learned that she and her children had all been terminated from TennCare without receiving any notice in the mail. While working with the Davis family to help them get their TennCare reinstated, it was discovered that their renewal materials had been sent to a family they had never heard of, in a city they had never lived! DiJuana has severe anemia requiring infusions and her children have health conditions including asthma, allergies, and ADHD, making reliable health insurance very important to them.
Parenting as a single mother can be hard. DiJuana says it is one of her favorite things, but also the most difficult job she has ever had. She describes parenting as being rewarding and painful and stressful – everything all in one. She says that parenting is very special to her and something she wouldn’t trade.
Fighting for healthcare for all kids in Tennessee has become something that DiJuana has become increasingly passionate about. She understands the importance of starting kids off on the right path and teaching them to have a healthy lifestyle, so that they will continue those habits as adults. She hopes she can raise awareness by sharing her story and to hopefully convince lawmakers and senior health care officials to make changes so what happened to her family does not happen to other families. DiJuana understands that mistakes happen, but she wants TennCare to address mistakes with more urgency, since it is real people’s health on the line.
The Tennessee Justice Center is proud to celebrate DiJuana Davis as an amazing parent to her children and a strong advocate in her community.
Photo Credit: Laurie Gibbs
Rudy and his wife Ronnie have raised six grandchildren over the past 20 years and are still going. Together, they currently care for two grandsons (Christopher, 14 and Jeffrey, 13) who both are on the autism spectrum. Rudy was born and raised in Switzerland. After college, he worked at Credit Suisse for four years until he emigrated to the U.S. in 1965. He worked in New Jersey and New York for nearly forty years, the bulk of which was working for a Swiss manufacturer of bookbinding and newspaper inserting machinery. Then he retired to Blount County, TN in 2006. Rudy and his wife fought hard to protect their grandchildren and ultimately rescued them from the foster care system. In 2017, his grandson Jeffrey was disenrolled suddenly from TennCare, which was when Rudy reached out to the Tennessee Justice Center. TJC supported Rudy in getting Jeffrey back on his insurance. Since then, Rudy has been active in the TJC advocacy network for statewide healthcare policy change. At age 80, Rudy works as a teaching assistant at a local high school in the Maryville area and his grandchildren rely on TennCare for their health insurance. In his role as a teaching assistant, Rudy supports a student with intellectual and developmental disabilities so that he can be well-integrated in his school community. Rudy is a healthcare advocate who speaks multiple languages and enjoys skiing and wildlife photography. Last fall, he spoke out against the harmful Medicaid block grant proposal to protect his family. It is his message that “it is important to fight for the healthcare needs of all kids and seniors in Tennessee. There are many poor families in our state that cannot afford adequate health care. Children that do not get proper health care will end up having health problems that get worse as time goes on.”
Photo Credit: Saul Young
The Tennessee Justice Center is excited to honor Marilyn Greer as a 2020 Mother of the Year for her commitment to her children, grandchildren, and community.
Marilyn Greer first became connected to the Tennessee Justice Center at a leadership workshop. She has a lot of leadership experience. She is on the Board of Directors for both the Metropolitan Development and Housing Agency and the Martha O’Bryan Center. She also serves on an advisory board with the police department and public defenders.
Marilyn was born and raised in Nashville, where she is still living. She is the mother of 7 children and works at the Nashville Symphony. When her children were younger, Marilyn struggled with addiction. She spent time homeless and in prison. About 13 years ago, one of her daughters took her in and Marilyn began to transform her life. She became sober and decided to give her life to God. She had started enjoying life again.
It was around this time that Marilyn decided that she wanted to give back and to start helping others. She got her first apartment at the Cayce Homes in East Nashville. She wanted to bring more happiness and joy to her community that was struggling with a lot of crime when she moved in. She wanted to help people in her community to not feel hopeless or stuck. Marilyn started organizing a big Easter egg hunt for children who probably did not get anything else for Easter. She also organized a coat drive for children who did not have warm clothes to wear in the winter.
Marilyn’s grandchildren are on TennCare and she has never encountered problems with their ability to access health care. She wants the best for all of them and helps make sure they go to doctor and dentist appointments. She says that advocacy means everything to her. She knows that a lot of people feel hopeless and they need someone to talk to and to speak for them. Marilyn says that “my voice is their voice.”
Tennessee Justice Center is honored to celebrate Marilyn Greer and her dedication to advocating for her community.
Photo Credit: Chad Crawford Photography (Instagram: @chadcrawfordphotog)
For her unique ability to bring so many people together to fight for what is right and for her persistence in fighting for the needs of her children and so many others, the Tennessee Justice Center honors Mallorie Hatcher.
Mallorie Hatcher lives in Johnson City, Tennessee. She works fulltime as an occupational therapist and her husband Robert, her high school sweetheart, works as a firefighter. They are proud parents of 7-year-old daughter Londyn and 6-year-old son Nolan. Londyn enjoys art, dancing, and being outside. Nolan started kindergarten this school year. He loves dirt bikes, music, his puppy Bella, vacuum cleaners, and choo-choo trains. Nolan has a microduplication on his 17th chromosome. It is classified as a rare chromosome disorder. If you saw him, you would assume he is much younger than he is due to his slow growth. Nolan has feeding difficulties, global learning delays, Chiari malformation, and epilepsy, and he has had multiple hospitalizations and surgeries during his life. He has more than a handful of specialty physicians and regular speech and occupational therapy sessions in order to help him thrive. Once it takes into effect, Nolan and thousands of other children across the state will be covered by the Katie Beckett waiver which Mallorie and so many other advocates and caregivers have been fighting for.
Mallorie was born and raised in Tennessee and grew up in a beautiful small community called Limestone Cove. She lived there until she left for college at UTC on scholarship, four hours from home. After undergrad, she moved back to Tri-Cities area and received her master’s degree in occupational therapy. In the summers between semesters, she worked at a restaurant. She began her career in skilled nursing facilities/nursing homes and did some contract work in the community with adults with intellectually disabilities. She has worked in home health settings now for almost 6 years. She has always had a passion for working with the elderly and with individuals who have disabilities. Growing up with a dad as a Methodist pastor, she did plenty of volunteer work without even realizing it – that is just what her family did! Mallorie is thankful for her upbringing and that she had parents who ingrained in her the true meaning of community and helping those in need. In her spare time, she enjoys taking road trips with her family to Canada, being involved with the praise team at her church, running, listening to music, and dancing. She really values her time with friends and family.
A member of the Tennessee Disability Coalition, Mallorie became acquainted with the work of Tennessee Justice Center about 18 months ago. She also is involved with a national advocacy group called Little Lobbyists and volunteers as leader for her Tennessee chapter. When asked about TJC she said “It is so great to have an organization in our state that is fighting for equality and the human right of healthcare for all people. It is so reassuring to know that, when I come into contact with individuals who are struggling with the inequalities of health care, I can refer them to the Tennessee Justice Center. I know that TJC knows the law and will look into each individual case. In a case when there is not an option for that individual, I know that the staff remembers them, is empathetic for what they are going through, and will fight for them. ”
Last fall, during the Medicaid block grant proposal comment periods, Mallorie organized her friends to speak out against the harmful proposal. She also led a webinar for the TJC network on how to mobilize against the block grant. She is incredibly passionate about advocacy and is always letter writing, contacting her legislators, and referring people to TJC. We are honored to know her and that she is a member of the TJC network!
Mallorie is inspired by Lily Tomlin’s words, “Somebody should do something about that. Then I realized I am somebody.” Mallorie said, “There is so much truth in that quote. Through advocacy I have learned how critical it is to share our stories and bring awareness to the reality of what families are struggling with and I have also learned the power in numbers and momentum. I also realize this is not something I did on my own. A family in our area had made the front page of our local newspaper and I realized for the first time we were not alone. The courage of them to speak up gave me the courage to speak up, along with the support from advocates from Tennessee Disability Coalition, Family Voices and TJC. If I am able to do that for someone else that is great. But probably the most amazing thing about advocacy is the number of people that actually benefit from the change when you make progress together. Many you have never met, some that are not even born yet and that is just a very big thing. I have been blessed to meet some of the most amazing families and friends through this journey of advocacy. I have new support from friends who actually get it and more clearly understand. We are also a team and understand that due to life circumstances sometimes one may be able to be more engaged than the other but we always advocate for all.”
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The Tennessee Justice Center is thrilled to honor Mr. Gerald Neal Sr. as a 2020 Father of the Year for his fierce devotion to his daughter and his continuous work cutting through red tape.
Gerald’s daughter, Erica, has been diagnosed with multiple sclerosis, lupus, and ADEM, and she needs continuous care. Erica is now 28 years old and is a quadriplegic. She needs a feeding tube and a trach, and Gerald has made it his full-time job to care for her and to fight for her access to the care and equipment she deserves. Nothing has come easy for Erica, and Gerald has fought and appealed almost every step of the way to get Erica what she needs. Erica’s mother, Dawn, is also present in her life.
Gerald was born and raised in Memphis, where he and his daughter are still living. Before leaving his job to become a full-time caregiver to his daughter, Gerald worked as a building engineer for over 20 years at different real estate companies. Gerald has also worked as a truck driver and a maintenance man, and he says that being a father and having to research all the rules and regulations to fight for his daughter is the hardest job that he has ever had.
Erica shows gratitude for her father by pointing to her eyes, then to her chest, and then to her father, signaling “I love you”. She loves to grab her father around the neck and smother him with kisses as well. They share a very special bond and are both very happy.
Gerald has reflected that TJC has meant a lot to him. He is especially grateful just knowing TJC is on his side and consistently there to check in on him. Working with the Tennessee Justice Center, Gerald is reminded that he is not alone in his struggle for better health care for his daughter.
After many years of witnessing Gerald’s persistence and strength, Tennessee Justice Center is honored to celebrate Mr. Gerald Neal Sr. and his incredible love for his daughter this year.
For her strength in facing challenges, her diligence in advocating for her children, and her sense of getting justice for families throughout Tennessee, Tennessee Justice Center honors Ms. Shannon Redmond as a 2020 Mother of the Year.
Ms. Redmond is the loving mother of three children: a son who is in the military, Joseph, and two daughters, Bethany and Ashtyn, who were both born with life-threatening medical conditions. Bethany is 18, nonverbal, and uses a wheelchair; she loves music, her “jewels”, and her miraculous ladybug. Ashtyn is 15 and has normal teenage interests including her cellphone, listening to music, and hanging out with friends. She also loves swimming and is great with animals large and small.
The Redmond family has tackled a series of financial, health, and emotional hardships in order to provide the best care possible for Bethany and Ashtyn. Ms. Redmond even put herself through nursing school in order to personally manage the care for her children. Under her care, Bethany’s health improved and she was able to transfer from 24-hour skilled nursing and monthly doctor visits (due to her continuous feeding tube) to a transition to full oral feeding and drinking. Under Ms. Redmond’s care, Bethany also had no doctor’s visits due to illness in 7 years. In order to maintain her nursing career and provide financially for her family, Ms. Redmond also paid for caregivers out of pocket. However, her caregivers were not always dependable.
As her daughters got older, new health concerns arose and costs to provide care increased. Juggling her career, the family’s financial situation, and her daughters’ health care, the emotional, mental, and physical stress became overwhelming. Ms. Redmond lost three different jobs due to caregiver issues, and the financial situation of the family changed.
Ms. Redmond recognized she and her family needed support and began reaching out to state and national organizations to learn about the options to provide the best care for her children. In 2019, Ms. Redmond was able to enroll her daughters into TennCare and begin getting more comprehensive care for them. When one of her daughters was denied nursing hours that were requested by a doctor’s order, Ms. Redmond and TJC filed an appeal and were able to get her the full nursing hours requested. Ms. Redmond continues to advocate for more thorough care for her youngest daughter.
We are inspired by Ms. Redmond’s diligence and are excited to honor her as a TJC 2020 Mother of the Year.
Photo Credit: Lisa Link of KPL Photography
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Damarys Roche lives in Memphis with her husband and their four children, Juan (age 9), Marjorie (age 7), Jacob (age 2) and Mia, born in August 2019. Ms. Roche has been eligible for TennCare since before Juan was born, and each of her children has been eligible since birth. Despite all belonging to the same household and continuously sharing eligibility for TennCare, the state has repeatedly suspended or terminated various household members’ coverage over the past three years. Because of her perseverance and determination over this time to fight for her and her children’s health care, we are pleased to nominate Ms. Roche as a 2020 TJC Mother of the Year.
Before calling TJC in January 2019, Ms. Roche tried for nearly two years, unsuccessfully, to get Juan’s TennCare coverage reinstated. She initially discovered that Juan, who has been diagnosed with autism spectrum disorder and attention-deficit/hyperactivity disorder (ADHD), lost coverage in the summer of 2017. Ms. Roche discovered at Juan’s neurologist’s office that Juan’s coverage had been terminated, even though she was not provided that information by TennCare.
Over the two-year struggle with TennCare, Ms. Roche filed an appeal for Juan’s loss of coverage without notice. Doing so, however, resulted in repeated requests for information that she had previously submitted. Then, when she was finally granted a hearing, which she participated in without legal representation, TennCare denied Juan’s eligibility appeal on the grounds that his mother had not returned renewal packets—renewal packets that she established she had never received.
Ms. Roche also went to the Shelby County Tennessee Department of Human Services office to seek in-person assistance with submitting a new application. She explained that she had been trying to get TennCare coverage for her son who was sick and that she was unable to do so without help. She explained that she had been unable to get Juan’s coverage back and that she needed someone to please help her because she was anxious about it and felt like she was having an anxiety/panic attack because she felt like no one would help her. When told that TDHS did not handle TennCare anymore and could not help her, she became emotionally distraught. Instead of offering assistance, TDHS staff told her to calm down or she would be removed. Ms. Roche left the office without receiving any help or being told where she could get the type of in-person assistance that she needed.
When Ms. Roche finally contacted TJC in 2019, she was told to submit a new application on Juan’s behalf through the Federally Facilitated Marketplace, which she did on February 8, 2019. She and her other children were still enrolled at that time, so she applied only for Juan. After calling several times only to have TennCare say the application was still pending, TJC helped Ms. Roche to file a delay appeal in April 2019.
In May 2019, Ms. Roche received notices that coverage was going to be terminated for herself and for Jacob, who has serious medical needs that require medical appointments, prescriptions, and other care. Additionally, Ms. Roche was pregnant with a high-risk pregnancy that required close monitoring and ongoing prenatal care.
A TJC client advocate called TennCare Connect with Ms. Roche on June 12, 2019. The TennCare representative acknowledged that there was no record of renewal notices having been sent to Ms. Roche or to Jacob. The representative then asked Ms. Roche for information about who was in the household. After providing the requested information, Ms. Roche requested an eligibility appeal, and for a continuation of benefits for herself and Jacob pending appeal. During the same call, Ms. Roche was told by the call center representative that there was no record on file of an application for Juan. So, she submitted a new application on his behalf.
Despite her efforts, however, Juan remained without coverage, and she learned during a physician visit the following week that her and Jacob’s coverage had been terminated. In July 2019, everyone finally had their TennCare reinstated, after TJC wrote a letter to TennCare General Counsel, describing the family’s experience and the state’s failure to provide continuation of coverage pending appeal.
After the horrendous experience she had with TennCare, Ms. Roche continues to fight for her family and others by sharing her story and participating in a class-action lawsuit against TennCare. She holds the belief that “it is not fair for people to have their coverage taken away, especially those who have major health issues.” And she will continue to fight because she knows “it is tough trying to manage bills and get [your] children the help they need.” And, because “it is not fair for people to have to go to a doctor‘s appointment and learn they lost coverage.”
The Tennessee Justice Center is honored to recognized Lynda Settle as a 2020 Mother of the Year for her tireless work getting her son the care he needs.
Lynda is the mother of three children: Jack (17), Ryan (15) and Grace (12). She was born and raised in Tennessee where she has lived for almost her whole life. She has been a nurse since 1992 and works at the SW Tennessee Developmental District as a CHOICES nurse. Lynda performs many roles, but she says that “mom is my heartbeat”.
Her son Ryan is non-verbal and severely autistic. He is sometimes aggressive, and Lynda has had to fight with TennCare to get him proper care at a facility that will treat him well. Lynda has said that she could write a book about her fight for Ryan’s TennCare. She initially called TJC when Ryan’s treatment facility was trying to discharge him.
Lynda calls TJC’s Gordon Bonnyman her hero and says he fought the fight against TennCare to give her family their lives back. She recalled when Gordon told her that he was not going to leave her, and how much it meant to her knowing she was not alone and that she had people working tirelessly to help. Lynda says that TJC gave her the priceless gift of Ryan’s care and there are not enough words for what TJC’s work has meant to her. “I thank God every day for TN Justice Center!”
For her tireless work fighting for her son’s health care, TJC is excited to be honoring Lynda Settle as a Mother of the Year.
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The Tennessee Justice Center is honoring Teresa Thompson as a 2020 Caregiver of the Year for the fierce love that she has shown her father and mother every day.
Teresa has been her parents’ caregiver for the last few years. She has reorganized her life to support them—even to go so far as change her work schedule and move from her home with her husband in Clarksville to move in with her parents in Old Hickory, Tennessee. This allowed her parents to remain in their home as they have aged and stay comfortable as possible up until her father passed away on Valentine’s Day 2020. Her parents lived in Old Hickory Tennessee for their 57 years of marriage; her father lived there his entire life, serving as a police officer and in manufacturing.
Food insecurity happened slowly for Teresa’s parents. When Teresa noticed this, she encouraged them to apply for SNAP. Though her father was resistant at first, when he saw how SNAP boosted their grocery budget and allowed them to purchase more food and get healthier options like produce, he appreciated Teresa’s efforts—always showing his appreciation by making Teresa laugh with his jokes and stories.
SNAP has immensely helped her parents to have healthier food options, but with her parents’ health concerns, it’s hard to imagine how they would have been on SNAP without her. She’s an advocate by nature and by trade—spending not only her free time but also her career helping others in social services, nursing homes, and Disability Services at the Department of Human Services the last 12 years. They know they can rely on Teresa to jump through hoops and navigate the red tape so they can eat. As fierce an advocate as Teresa is, she still says “I don’t know where I would have turned if someone hadn’t mentioned TJC. TJC has been there for me when I felt like I was alone in the world, and it made me realize how many other people must be going through the exact same thing. I am so glad that people on our side fighting for us.”
We are glad to honor Teresa as one of our 2020 Caregiver of the Year for the unending love that she has shown her parents and her determination to make sure that they get the food they need.
Rachael is a 20-year-old mother of two children living in Crossville, Tennessee. She cares for her daughter AJ (3) and her newborn son, Oliver, or Ollie. Despite the many hurdles she has faced trying to secure TennCare for herself and her children, Rachael constantly demonstrates patience and kindness. She always prioritizes her children and was relentless in getting the care that they all needed.
The Tennessee Justice Center helped Rachael when she was pregnant with her son Oliver. Rachael unexpectedly lost her coverage and was without coverage at a critical time in her pregnancy. She faced pregnancy complications and also learned that her doctor would not be able to continue seeing her without insurance. We helped her get approved again just in time for her to continue receiving care. She safely delivered her healthy baby boy Ollie in October, and we were able to help her get him approved for TennCare too. With her TennCare fixed, she can now focus on her two wonderful kids, AJ and Ollie. TJC is proud to recognize Rachael as a 2020 Mother of the Year.
The Tennessee Justice Center is honoring Aretha Braden as a 2019 Mother of the Year for the fierce love that she shows her daughter Rakia every day.
Aretha has been Rakia’s caregiver since she was 3 months old. Rakia has a variety of health conditions, including cerebral palsy, a seizure disorder, and respiratory and feeding problems. She is nonverbal and not able to walk. Because of all her medical complexities, Rakia wasn’t supposed to make it a year, but she is now 14 years old and still going strong. When asked about her daughter, Aretha said, “I love her. She’s my angel. She’s my miracle. I don’t treat her as a handicap—I treat her as a regular human being.”
Rakia has been on TennCare her entire life, and this has allowed her to have an in-home nurse, but for the past 4 years, TennCare has been trying to cut down the number of hours that she is allowed each month. Aretha already had to resign from her job of 18 years and start working part-time somewhere else because she needed to be home with Rakia more than her job would allow, so this cut in hours would make things even more difficult.
When she didn’t think she could fight any more, Aretha contacted the Tennessee Justice Center. “When I couldn’t speak, somebody spoke for me.” We were able to get her connected with a pro bono attorney, and they are still in the process of fighting for Rakia’s nursing hours. When asked what keeps her motivated as she continues to resist Rakia’s decrease in nursing hours, she says, “God keeps me going. He gives you the amount you can bear.”
We are glad to honor Aretha as one of our 2019 Mothers of the Year for the unending love that she shows Rakia and her determination to make sure that she gets the care she needs.
Heather is a wonderful mom to two daughters, one-year-old Evelyn and five-year-old Natalie. Her debut into motherhood wasn’t easy—Natalie was born at 28 weeks with a variety of medical complications, including cerebral palsy, quadriplegia, cortical visual impairment, and epilepsy. Now, Heather is Natalie’s full-time caretaker while Heather’s husband Rusty, a former Marine, works full-time. Heather is incredibly grateful for Rusty and knows that she wouldn’t be able to be so involved in her children’s lives if he didn’t work as hard as he does.
Heather has had to work hard to keep Natalie healthy. Because Natalie has epilepsy and a feeding tube, she needs an assistant at school to help keep her safe through seizures and meals, but Natalie’s insurance, CoverKids, wouldn’t cover this help that Natalie needed. Heather applied to get this kind of care for Natalie from TennCare but didn’t hear back.
After nine months of waiting for a response, Heather called the Tennessee Justice Center for help. TJC explained how TennCare works and helped Heather figure out what other agencies she should talk to. Regarding the help she received at TJC, Heather said, “They helped me understand the whole system and what our rights are. Just having that support gives you peace of mind.”
Even though Heather’s motherhood journey hasn’t been without difficulties, she takes each challenge in stride. When asked what it’s meant to be a mother, she said, “It’s really let me see the simple things in life. Just the little bounds that Natalie has accomplished make me incredibly happy.”
For her tireless advocacy for her daughters and her love for her family, the Tennessee Justice Center is proud to recognize Heather Brown as one of our 2019 Mothers of the Year.
Gloria, a fifty-year-old mother and grandmother, lives in Nashville, Tennessee. She grew up in South Nashville, where she watched her mother “make a way out of no way.” Gloria, her baby sister, and her older brother grew up together with trials and tribulations, but they were always surrounded by love. Gloria and her siblings were pushed to be the best people they could be, and she grew up with strong maternal relationships with her mother, auntie, and granny. Her mother constantly reminded her that others were in worse shape than her, and this taught her to be a humble and mindful person.
As a child, Gloria helped her mother with a local youth after-school program. She was also a caregiver for her brother, who is blind. Whenever he struggled with his health, Gloria was his voice and advocated for whatever he needed. She continued this caregiving when she worked in a day center home for people who were disabled. Year after year of providing for and caring for others took a toll on Gloria’s physical health, but she continues to care for others, including her grandson, Isaiah.
When Gloria called the Tennessee Justice Center, she needed assistance applying for SNAP (the Supplemental Nutrition Assistance Program) for Isaiah. She had no idea that she herself could be eligible for SNAP. A car wreck left Gloria unable to work, and as a result she is unable to work labor-intensive jobs. Because of this, she struggles to keep herself afloat with her limited sources of income, and she is burdened by her daily and monthly expenses. TJC helped Gloria realize that she could be eligible for SNAP, which helped ease this burden.
Programs like SNAP help caretakers like Gloria to fully take care of their loved ones. No family should have to choose between providing shelter or food for their loved ones, and SNAP helps struggling families put food on the table. Gloria states that it takes “all hands-on deck to raise our children and future,” and SNAP helps Gloria and other caregivers in this process.
SNAP has helped Gloria “make a way out of no way” for Isaiah, just as her mom did for her and her siblings. Through stories like Gloria’s, we can recognize how tenacious women, like her, continue to make a difference for others day in and out. TJC is proud to recognize Gloria as a 2019 Mother of the Year.
Jessica and her husband, Sean, were blessed with three children: Carter (9), Claire (4), and Charli (3).
Their daughter, Claire, was born with heart deformities, and at less than a week old, she went through open heart surgery. Soon after this, she was diagnosed with a rare genetic syndrome, Cri Du Chat, which results in physical and intellectual disabilities.
Claire immediately started therapies and had additional surgeries, which were covered through TennCare; however, before Claire turned 2, her parents were notified that she was losing her TennCare because they were over-income. Jessica and Sean had to discontinue Claire’s therapy because their private insurance only covers 50 visits a year. They also had to begin paying co-pays for the 18 specialists and medical supplies Claire requires. Jessica said, “I knew with everything inside of me that this was just wrong.”
Jessica quickly learned that all states except TN have a version of the Katie Beckett Waiver, which allows children with complex medical needs access to Medicaid coverage, regardless of their parents’ incomes. With the support of TJC and partners like the TN Disability Coalition, she and Sean contacted legislators, shared their story with the press, and attended disability day on the hill to advocate for Tennessee to adopt the Katie Beckett waiver. Thanks to their efforts, and the advocacy of other parents in similar situations, a Katie Beckett bill continues to advance in the legislature.
Jessica will not stop fighting until a bill has been passed that provides support to all families in TN that need it. “We’re not going away. Our kids are little, and they need help. They need it now”.
For her dedication to her family, and for her ceaseless advocacy for children with disabilities across Tennessee, we are happy to honor Jessica as one of our 2019 Mothers of the Year.
Photo Credit: Alex Kent
The Tennessee Justice Center is happy to honor Shannon Grimes as a 2019 Mother of the Year for her determination to get her son, Carson, the care that he needs, as well as her drive to advocate for kids with disabilities across Tennessee.
Carson, who is now almost 3 years old, struggles with a variety of medical concerns, including seizures, visual impairment, and breathing difficulties. It was a long journey to figure out what was going on, but he was eventually diagnosed with a rare genetic mutation called GRIN1.
With all of Carson’s hospitalizations, therapies, and medical equipment, the costs really began to add up. He had insurance through his mom’s work, but this did not cover everything, and his parents were paying thousands of dollars out-of-pocket. Shannon applied to TennCare multiple times and was denied each time. However, she continued to fight to get the health coverage he needed, and after contacting her senator, she was finally able to get Carson on TennCare. She said, “What kept me motivated was just Carson. He deserves the best and what every other kid deserves.”
Although Carson now has TennCare, Shannon understands he could lose it in the future, and she knows that there are many other kids like Carson who are not able to get the coverage that he has. To advocate for these kids, she has spoken with her state legislators about the hardships her family has been through.
Although Shannon has had to jump through many hurdles just to get Carson the care he needs, she loves being a mom to Carson and his 8-year-old brother, Tanner. “Carson makes life a little easier just because he smiles any time you’re having a bad day. Just the fact that he smiles makes things better every time.”
WILLIAM HALBERT, JR.
The Tennessee Justice Center is honoring William Halbert, Jr. as a Caregiver of the Year for his love and dedication to his wife, Barbara.
Ms. Halbert suffered a stroke 13 years ago that left her completely paralyzed on her left side and in need of daily support. Mr. Halbert cared for his wife independently and sometimes paid out of pocket for caregivers to come to the home for a few hours each week. However, his own worsening health and his wife’s increasing level of need meant that he could no longer keep up.
Mr. Halbert applied for the TennCare CHOICES program, a long-term care program that provides support in the home or in a nursing home, on his wife’s behalf so that she could get more help in the home, but the applications kept getting tangled up in bureaucratic red tape and denied. He stated that, “again, and again, and again” TennCare requested the same materials without a full explanation of what they were looking for.
Mr. Halbert tried to enroll his wife in the CHOICES program for three years before finally, with a growing need for help with caregiver duties, he reached out to the Tennessee Justice Center. TJC was able to break down and explain the complicated application process and assist in filing a new application. Finally, Ms. Halbert was approved for the CHOICES program. She now has access to the care she needs to remain safe and supported in the home.
Speaking about his experience, Mr. Halbert said, “The word is perseverance. There is a lot that goes in to it.” He spent countless hours and thousands of dollars trying to get his wife the care and support she needs to maintain a high quality of life in their own home. In the end he states that his decision to continue fighting for his wife’s care was simple, “I don’t see any choice. It’s only money.” In Mr. Halbert’s mind, the years he spent fighting for his wife’s care are a continuation of the kindness and care Barbara showed throughout their marriage. He hopes that by sharing his story he can shed some light on the suffering of others trying to navigate long-term care options and to continue his wife’s legacy of generosity.
Mr. and Ms. Halbert raised three children and are now the loving grandparents of three grandchildren, but Mr. Halbert explained that his wife’s love and generosity goes far beyond just her immediate family. For 8 years she ran a non-profit called, Joy Ministry that provided assistance to low-income teenage mothers. She frequently used her artistic talents and compassionate spirit to help those around her. Mr. Halbert’s willingness to fight for his wife’s care is inspired by this same spirit.
The Tennessee Justice Center is proud to honor Mr. Halbert through this nomination because of his love and care for his wife and his desire to use his own experiences to help others.
William Halbert, Jr.
From the day he was born, Jamie vowed to share Titus’s story until he was old enough to share it himself. Titus was diagnosed before he was born with a congenital heart defect known as hypoplastic left heart syndrome, which means that the left side of his heart does not work. Unfortunately, there is no cure for the disease unless he has a heart transplant. During her pregnancy and the first days of Titus’s life, Jamie—who at the time was already a mother of one—gained a deeper appreciation for motherhood. “To have someone like Titus, who has been through so much, teaches you to appreciate the small things.”
There are many life experiences that people take for granted until they have a child with complex medical needs. The Maxfield family loves sports—Titus’s father, Marty, coached basketball for the local high school until Titus was born, and Jamie would be the bookkeeper at these games. However, because basketball season often coincides with flu season, the family does not attend games anymore in order to protect Titus’s health. Community is important to their family as well; however, with Titus’s chronic diagnosis, the family has had to limit the number of visitors they have to their home. In addition, both Jamie and Marty have had to change their work schedules in order to meet Titus’s needs.
While their lives have changed in many ways since Titus’s birth, Jamie and Marty still know joy, love, and happiness. Jamie describes Titus as her most outgoing child. “You wouldn’t know that he has a heart condition that could slow him down,” says Jamie. He has a sense of humor and a hilarity that is irresistible. Through his snuggles, cuddles, kisses, and hugs, Titus makes each family member feel loved and connected. On being a mother, Jamie says there is a precious unconditional love that you cannot explain until you have your own child.
Jamie carries this love with her into her work as a nurse. She loves her job because she can care for those who aren’t able to take care of themselves. Moreover, she knows she is making a difference. Sometimes, she shares her son’s story to inspire hope in her patients. Jamie believes that you don’t give up. You must try everything you possibly can to make circumstances better.
It was in the spirit of not giving up that TJC encountered Jamie. She reached out to us because her son was losing his TennCare, TN’s version of Medicaid, which helped the family tremendously by covering the cost of many of Titus’s treatments. TJC was able to break down complicated policy and program eligibility so that the family really understood what was and was not available to them. We further empowered Jamie with tools and encouragement to advocate for the Katie Beckett waiver. Tennessee is currently the only state that does not have a version of the Katie Beckett waiver, which allows children with complex medical needs to get health coverage through Medicaid, no matter what their parents’ incomes are. Thanks to families like the Maxfields, and advocacy by TJC and partners like the Disability Coalition, a Katie Beckett bill is currently moving through the legislature. Until the state has a waiver like this, Jamie will continue to fight alongside other families to get their children the health care coverage they need.
We cannot wait to see more of the work Jamie does to advocate in her community. We know that Jamie and Titus will never give up on themselves or others, and TJC is thankful to know them because of that.
The Tennessee Justice Center is honoring Denise McMahon as a 2019 Mother of the Year for her relentless determination to get her son the medical care that he needs.
Denise lives with her 19-year old son Jakob and 2 of her grandkids in a rural area of Putnam County. She has always been a stay-at-home mom because her children are her passion.
Denise describes Jakob as an amazing young man who is incredibly optimistic, articulate, and intelligent. “If you know him, you absolutely love him. His ability to face life head on is his best quality. He doesn’t get down. He’s just positive.” Jakob’s father passed away when he was two years old, and Jakob is Denise’s youngest child by 11 years, so they have always been very close. They have a very special mother-son relationship built on trust and admiration for each other. “When something is going on, he is always honest with me with how he feels. He knows that when I need to stand behind him, that’s where I am. When I need to stand beside him, that’s where I am. When I need to stand in front of him, that’s where I am.”
A few years ago, Jakob was diagnosed with primary immunodeficiency, which means that he does not produce the antibodies that are required to fight infections in his body. As a result, he can become sick very easily. Because Jakob is allergic to all the antibiotics typically used to treat primary immunodeficiency, he receives a life-sustaining infusion of immunoglobulin every 28 days, which are proteins that function as antibodies.
Jakob’s infusion treatments are very expensive, but they were covered by TennCare in full since the McMahons moved to Tennessee in 2016. However, in November 2018, they received a letter from TennCare stating that his coverage would end the following month with little explanation. Denise appealed the denial, requested that he keep his coverage during the appeal, and called TJC for further assistance, where she got in touch with Nicole.
Nicole helped Denise with the complicated process of cancelling her appeal, reapplying for TennCare, and making sure Jakob had a high enough medical bill to qualify for coverage. Jakob could not be uninsured for more than 28 days because he needed insurance to get his treatment, so timing was very important throughout this process. Denise said, “It was an absolute nightmare. Wondering whether TennCare would take him back on was the scariest thing of my life.”
Luckily, with Denise’s persistence and TJC’s support, Jakob only went 11 days without coverage and was able to get back on TennCare in time to get his next life-saving infusion. Regarding Nicole’s help, she said, “I have always fought on my own. Having Nicole meant the world to me.” Although Jakob could have died if he had been uninsured for too long, Denise stayed strong throughout this whole process, focusing on doing everything she could for her son.
Denise is eager to share her story in hopes of inspiring legislative change so that no one else loses the coverage that they are entitled to. TJC helped Jakob get coverage, but it was extremely complicated and stressful for everyone involved. Denise worries about sick people who do not have someone to advocate for them, and she wants to do everything she can to make sure that people in similar situations know that they can reach out for help.
TJC is proud to recognize Denise as a 2019 Mother of the Year for the unending love she shows her son and the strength she continues to display despite the many obstacles she’s faced.
Photo Credit: Alex Kent
The Tennessee Justice Center is happy to honor Debbie McBryar Miller as a 2019 Mother of the Year for her persistent fight to get her son, Cason, the care that he needs.
Cason, who is 10, was born with congenital cytomegalovirus (cCMV), which caused significant brain damage. As a result, he now has cerebral palsy and a seizure disorder. In addition to private insurance, Cason also has TennCare for private duty nursing care.
In 2017, Debbie received a letter from TennCare stating that his nursing hours would be cut essentially in half. This would have been devastating for their family—Debbie would have had to quit her job, and they likely would have lost their home. She filed an appeal immediately and reached out to TJC for additional help. TJC found pro bono attorneys to represent Cason in court, and he was approved to keep his benefits throughout the appeal. “TJC has meant the world to Cason and my family. Because of TJC, we have attorneys working on Cason’s appeal, helping me fight to keep the benefits he deserves.”
Debbie and her husband John have three other children in addition to Cason: Debbie’s son J.C., who is 12, and John’s sons Taylor (18) and Andy (16). They are very proud of their “blended family” and spend as much time together as possible. In addition to caring for Cason and his siblings, Debbie works with the Ronald McDonald Care Mobile, which services school-aged children across multiple counties, many who are uninsured or on TennCare and wouldn’t get care otherwise.
Despite the many struggles she’s gone through to get Cason the care he needs, Debbie knows how fortunate she is to have him as a son. “Cason is my hero. He has so many physical and medical issues, but yet he is undoubtedly the happiest person I know. He loves his life, so I fight to keep him healthy like that so he can participate and have the kind of life that he has.”
Ms. Nored and her husband, William Nored Sr., adopted Bill when he was three and a half months old. At 18-months-old, Bill had his first grand mal seizure, and he began having seizures constantly, sometimes hundreds of times a day. Bill was diagnosed with Rasmussen’s Syndrome, a rare disorder of the central nervous system that was causing deterioration of the right side of his brain. When Bill was around 10 years old, the deterioration started moving to the left side of his brain. Ms. Nored knew she needed to find help, or her son would not be able to survive into adulthood.
Ms. Nored experienced several barriers in accessing the medical interventions necessary for her son’s survival. One doctor told her that there was no hope in saving Bill. She asked the doctor if he had personally met her son. Upon learning that the doctor had only reviewed Bill’s medical file, she grabbed the doctor’s hand and said, “Before you bury him, you should meet him.” The doctor walked into the hospital room, where Bill was sitting on his bed reading a book. Ms. Nored remembers the doctor asking where her son was because he couldn’t believe that Bill was able to read given his significant brain damage, “And I said right there, that is the young man you just sentenced to death.”
When Bill was 14, he underwent a complicated brain surgery. The operation was successful and completely stopped the seizures. The surgery has allowed Bill to grow up in relative health, capable of leading a productive and meaningful life; however, his health complications and experiences during childhood caused some lasting medical conditions. Ms. Nored believes that, with a little bit of support, Bill’s health conditions shouldn’t have any effect on his ability to live a full life. In 2013, Bill enrolled in the DIDD Waiver program and gained access to supports that provided opportunities for more community interaction and independence.
After years of being on the program, Bill was receiving care in his own home when his DIDD support coordinator became unable to locate a provider agency that could meet his needs. Bill had to move back into his parent’s home. For over two years now, Ms. Nored has been fighting to find a care provider who can support Bill in the community and in meeting his other life goals. Despite her own deteriorating health, she continues to try every way she can to make sure Bill has a good and comfortable life. She hopes that, through this nomination and the telling of her family’s story, “Someone may recognize that this is a broken situation and people are suffering.”
It is amazing to witness Ms. Nored’s tirelessness in advocating for her son. She stated that this is inspired by the perseverance and strength that Bill showed during his early childhood. Ms. Nored believes that her son, and other individuals like him, “Should not be denied life because of a disability.”
The Tennessee Justice Center is proud to recognize Ms. Nored’s unwavering fight for justice and her strength of spirit this Mother’s Day.
Courtney and her husband, David, have known each other for most of their lives. They met in elementary school and have been together for nine years. After enduring a long-distance relationship for four years while David was in the army, they decided to get married, and they will soon be celebrating their third anniversary.
Courtney became pregnant last year, and she applied for presumptive eligibility at her local health department to get immediate coverage. Her doctor said her pregnancy was high-risk, so she needed regular medical attention. In order to keep her coverage, she submitted an application the following week.
When Courtney visited her doctor in June, she found out that her coverage had been terminated. She had submitted everything TennCare requested, but they claimed they didn’t receive some of the paperwork. She submitted another application in July, but the eligibility results incorrectly stated that she was over-income for TennCare.
At this point, Courtney had to quit her job due to pregnancy-related medical issues. She desperately needed an ultrasound so that her doctor could find out what the problem was, but she could not afford to pay for it out of pocket. She began to visit a low-cost clinic for basic care, and she submitted yet another TennCare application, but she was wrongfully denied again. On struggling to get health coverage, Courtney said, “It was just awful and miserable. I was already having complications with my pregnancy, and I was trying to contact every person that I could and getting no answers.”
Not knowing what else to do, Courtney contacted TJC. We filed an appeal on her behalf, and soon after, TennCare notified us that Courtney had been approved for coverage. When asked about what TJC’s help meant to her, Courtney said, “It was more of a stress reliever, knowing someone was there to help me. When I found out I got on TennCare, it was like a weight was taken off me.”
Courtney gave birth to a healthy baby girl, Sadie Kaye, in November. She loves being a mother and says that she couldn’t ask for a better baby. After all she went through trying to get health coverage, she’s just so glad to be at home with a healthy baby. “Honestly, that’s all I was worried about, was getting my baby help.”
As a new mother, Courtney has already gone to great lengths to make sure that her child can live a healthy life, and TJC is proud to honor her as a 2019 Mother of the Year.
Photo Credit: Alex Kent
Throughout the years, Charlene has adopted around 35 children, most of whom have complex medical needs. “We do not do enough to get foster children with lots of medical needs into families,” she says in support of her desire to fight for her children.
Charlene believes that those born with complex medical needs still have a right to experience what life has to offer. As a mother, she has provided a home for even those whose lives come with a limited prospective lifespan. Her unwavering belief in the possibility of a good life for all resulted in her adoption of one of her sons, Jonathan. Born premature and weighing less than a hamburger, doctors recommended after a few months that it was best to end his life support. Charlene held him in her arms as they disengaged his life support after telling the doctors, “If he lives, he is mine.” Jonathan did live—he survived being taken off life support and made it past the 6 months that the doctors said he had left to live. Today, he is 26 years old.
It was Charlene’s determination to fight for what’s best for her children that brought her to TJC. She was having trouble obtaining TennCare for another son, Christopher. Charlene has been fighting for Chris’s health care needs for the past 25 years. She adopted him when he was 3 years old. Born to a mother suffering from an addiction, Chris was diagnosed with autism and thyroid issues as a child and diagnosed with diabetes and mental health issues as an adult. However, that did not stop Charlene, who believes that every child deserves a home and the support needed to live a full life.
Chris’s medications are essential to his capacity to healthily and safely navigate life, and losing his TennCare threatened his ability to take these medications. TJC was fortunate to guide Charlene along the way to getting Chris his TennCare back. Charlene said, “I needed a little moral support and that is what the Tennessee Justice Center was for me.” Just like we supported Charlene in meeting Chris’s needs, she supports many more in their quests to help others.
Charlene has this faith in positive outcomes for all her children. She fights for them to have opportunities that they would not get anywhere else. According to her, it is not spending money on your children, but spending time with your children that counts.
A veteran, Charlene has traveled all over the world and met many people. It was during her time in the military that she began thinking deeply about people who were different from her. She was in the army during a time when women were treated poorly just for being women. During this time, she learned to treat people as people. Each and every day, she requires that the people she encounters do the same.
Charlene is a fighter, just like Chris, Jonathan, and all her other kids, and she will continue fighting until she sees justice for children like them. She believes that if parenting of children with complex medical needs is going to work, you must work together. Charlene has supported mothers in getting the school system to think about physical and mental health when handling children with challenging behaviors. In one case, Charlene helped a mother advocate against the expulsion of her child. After seeking other options for meeting the child’s needs, it was discovered that the child had autism and there were new opportunities to give this child a fulfilling life. Charlene says she fights alongside other mothers to give every person as much of a win as she can give them. “I have an opportunity to change minds and do things differently,” says Charlene about what motivates her to continue fighting.
Charlene’s husband, David, took on 18 step-children when they married in 2000. On his wife’s incredible dedication to her children, he states, “Charlie’s advocacy for her children is worthy of a miniseries—each child was special to her.” He feels that her fortitude makes her not just an exceptional mother to her children, but also an amazing advocate for children outside of their home.
We cannot wait to see more of the work Charlene does in her community. We know that she and her family will continue to be a beacon of hope, showing that all can live a full and loving life.
Leianne has fought tirelessly to ensure that her seventeen-year-old son Matthew receives the care he needs to reach his full potential. At different times in his life, he has battled—and weathered—several health conditions including brain cancer, heart surgery, broken and weak bones, and persistent headaches as a result of his earlier surgeries and treatments.
Because he is covered by TennCare, Matthew receives excellent care from seven different specialists, but he has also faced obstacles with TennCare, which is what brought Leianne to TJC. She received a notice that Matthew was no longer eligible for TennCare despite providing the proper documentation in his renewal packet. Fortunately, this situation was resolved after Leianne and TJC worked together to file an appeal on Matthew’s behalf, and he was once again covered by TennCare.
Leianne hopes her experience fighting for her son’s healthcare will inspire others to work through the system to protect their kids. Speaking of the help she received from TJC, she says, “They have been a godsend. When you are up against a state agency, you feel like it’s David against Goliath – you don’t know if you’ve got anyone to back up what you’re saying or be your advocate – and TJC levels the playing field and makes you feel like you have a chance.”
Leianne says that healthcare advocacy is important because “families need someone to be there and stand up for them if it’s needed.” She believes it is unjust for children to “fall through the cracks” and fail to receive the care they need because of preventable administrative issues. She is especially concerned about the difficulty of navigating the process for parents of children that have complex medical needs, noting that they have enough on their plates and don’t need another battle to fight while caring for a needy child.
Despite the healthcare challenges Matthew has faced, Leianne describes him as a happy kid who enjoys being around other people and “cracking a joke” whenever things get too serious. She notes that now that Matthew is older, he is appreciative of the time and attention he has received from his family. “He’s always quick to give a hug and let you know he loves you,” she says.
Within her community, Leianne makes it a priority to support other families. She participates in multiple church activities, sings in the choir, and assists with Children’s Ministry every week. When she’s not out and about in the community, she and her husband enjoy spending time with their daughter and granddaughter who also reside in the area. Her three older children have often referred to her as a “professional mom.”
For the support and dedication she’s shown to Matthew and her community, TJC is glad to honor Leianne as a 2019 Mother of the Year.
When Tabitha was 6 years old, she was diagnosed with leukemia. She fought and beat the cancer, but doctors told her that she may not be able to have children because of the treatment she went through. When she found out she was pregnant, she was overjoyed. Describing this moment, she said, “I started crying and I told God thank you for having my child.” She gave birth to a son, Dale, and the next year gave birth to her daughter, Ashley.
Ashley, now 31, has a seizure disorder and cognitive disabilities. She needs constant supervision, so Tabitha stays at home with her to be her caregiver. Dale also lives with them, and his two children, Tabitha’s grandchildren, visit on the weekends.
Because Tabitha puts Ashley’s needs before her own and stays at home with her rather than working, she is not able to afford health insurance for herself. She is one of 300,000 people in Tennessee who fall into the “coverage gap,” meaning she doesn’t have access to health coverage because of the legislature’s failure to expand Medicaid. Tabitha has diabetes and high blood pressure, but she can only get care at a neighborhood clinic because she can’t afford to go to the doctor. Instead, she just focuses on making sure that Ashley gets the care that she needs.
Tabitha is not just a great advocate for Ashley—she is an advocate for Tennesseans like herself who cannot get health coverage. Working with TJC in the fight for Medicaid expansion, Tabitha has shared her story with the media with the hope of helping other people understand what people in the coverage gap go through. When asked why she chose to speak out, Tabitha said, “I decided to share my story because everybody out there needs care. Folks like me need insurance to go to the doctor, but we just can’t afford it.” She knows that personal stories can really change people’s perceptions of an issue, and she wants to share her story to advocate for people like her who do not have access to the healthcare that they need.
For the selfless love that she shows her daughter and her commitment to advocate for people in the coverage gap, TJC is happy to honor Tabitha as one of our 2019 Mothers of the Year.
Lisa has three children: Tucker, Nicholas, and Christopher. Tucker has struggled with health conditions his whole life that include high-functioning autism, epilepsy, and hypertrophic cardiomyopathy, a condition that makes his heart walls abnormally thick and makes it difficult to pump blood. Lisa refers to Tucker as a “miracle child” because he’s been able to do a lot that they originally did not think he would be able to do. Tucker has been able to defy all odds, graduating from high school and going on to college with the strong support of his family, teachers, and doctors.
Tucker is currently on the Employment and Community First Choices (ECF CHOICES) program through TennCare. This program is for adults 21 years old or older who have an intellectual or developmental disability but don’t need to be in a nursing home. Lisa says getting the health care Tucker deserves and navigating the complex health care system has not been easy—there have been many struggles to get him the services he has now.
Lisa has stood strong and advocated for Tucker through everything for the past 22 years and continues to fight tirelessly to make sure her son gets all the health care services he deserves. In addition, she has also dedicated her time to helping people in her community navigate the complex healthcare system of Tennessee by volunteering with TN Voices for Children. When asked why it was important to fight for the healthcare needs of all Tennesseans, Lisa replied simply that people often don’t even know what rights to care they have. People deserve to get the healthcare they need, and she will continue to help people understand these rights.
Beyond simply supporting Tucker in his needs, Lisa has also pushed Tucker to achieve his dreams. Tucker loves working with animals and has an emotional support dog named Sampson. He volunteers at an animal shelter now and wants to continue working with animals in the future. Additionally, for Tucker’s 18th birthday, he wanted to fly somewhere by himself. Lisa was able to support him in and send him to Florida to see family, and he was so proud that he was able to fly by himself.
Lisa and her family have been long-time clients and advocates of the Tennessee Justice Center. TJC has been happy to serve as the voice Lisa needed when her voice was not enough. Her advocacy for her son, Tucker, and her passion to support families like hers is remarkable. Lisa is truly an incredible fighter and mother, and TJC is thankful to know and support her work.
Danielle Alaimo is the last person to do anything halfway, and for that, she is being honored as a 2018 Tennessee Justice Center Mother of the Year. She gives her full heart and drive to every role and task she takes on. Her most critical role is serving as mother to Boston-Marie, 8, and Malcolm, 4.
Both her children have so much personality. Boston is fun and loving, and Malcolm has the most contagious smile. Danielle works her hardest to be there for both her kids every day, but this task is made unusually difficult by medical complexities that she and Malcolm each face with their health.
Malcolm was infected with cytomegalovirus before birth, which has caused a slew of health complications throughout his life. Danielle has devoted her life to being Malcolm’s full-time care provider and advocate. This has allowed Malcolm to achieve milestones never thought possible.
She balances full-time caregiver with being a mother to Boston- showing up at swim practice, asking her about her day every day, and making sure she always feels loved.
Danielle does her best to make sure Boston still has her mother despite Malcolm’s intensive care. Her own health has been an added obstacle. Just this February, she received brain surgery for a condition in which her brain was putting dangerous pressure on the brain stem.
Scar on the back of her head, Malcolm in tow, Danielle continues advocating for better care for her family and those like hers, simply because she feels it’s her purpose. An exceptionally selfless person, Danielle is unlike many people you will meet–and once meeting them, you will never forget her family.
Photo Credit: Alex Kent
Jill Barlow of Lewisburg and her husband Eric are parents to Drake, age 6. Drake suffers multiple heart and throat defects requiring regular in-home care and medications. While Eric works tirelessly to support the family, Jill has juggled her own health needs with caring for her son and fighting determinedly to get adequate care for Drake.
Last year, Drake was close to losing the coverage that provides the means for his survival. Working with TJC, Jill and Eric fought to keep Drake at home and insured through TennCare so he can continue to get the care and coverage he requires.
Drake is now successfully covered through TennCare and receiving the care he needs. Jill and her husband are excited to be able to go on a date for the first time in years now that their son can be properly cared for! They intend for Drake to have as normal a life as possible. Drake is full of energy and happiness. He loves meeting people, watching sports, college mascots, and Kroger, which is one of his favorite places to visit!
Jill’s selflessness shows in not only her dedication to the care of her son, but her commitment to raising awareness about the inadequate healthcare policies in Tennessee. Both parents have been vocal about health care reform, fighting against legislation that could diminish the care received by their son and children like him. She hopes “senators and representatives realize TennCare should help everyone that needs support, especially children.” For her unwavering dedication to her family, TJC is honored to name Jill Barlow as a 2018 Mother of the Year.
Dana Beech has fought tirelessly for the 16 years of her son’s life. Because of her hard work advocating for his care, her son Chase has beaten all the odds. With an extensive list of conditions including cerebral palsy, epilepsy, dysautonomia, functional short gut, POTS, and more, there is always something that needs to be done.
Though this list is daunting, “Super Chase,” as he is appropriately called, pushes forward. Chase has one of those personalities that captivates folks and moves them. Dana says he can put a smile on anyone’s face, even when he is the one going through a difficult time. Despite her son’s strength, Dana still worries about the obstacles to come, especially as Chase gets older. Advocating for his care will only get more difficult, and that will make her job protecting her son even harder. But she shows no signs of stopping.
Within her community, Dana helps parents in situations like hers, advocating for children with complex medical needs. She wants to use her knowledge and all the lessons she has learned over the years to help others work through the system to similarly protect their kids. Dana feels her community deserves that support because they have taken on a role more difficult the most.
Dana is a fighter, just like her son, and will continue fighting until she sees justice for kids like Chase. If there’s one thing for certain, it’s that Team Chase is unmovable: no matter what obstacle arises, Chase will be supported through it all. For her advocacy for Chase and others like him, Tennessee Justice Center is honored to name Dana a 2018 Mother of the Year.
Toni Corbin of Lebanon is being honored as a 2018 Mother of the Year by the Tennessee Justice Center (TJC) for her fierce commitment to making sure that her family, especially her son with a disability, has the health care they need.
Toni is a mother of two, with three grandchildren and two great-grandchildren. She lives with her son, Wallace, whom she calls “Wally.” In 2009, Wally was in a motorcycle accident that left him in a coma and with dangerous brain swelling. Over the next few years, against all the doctors’ predictions, Wally came out of the coma and began to build his strength. Today, Wally doesn’t let his wheelchair or his frequent seizures stop him from living a full life. Toni and Wally are devoted activists for the disability community, championing at every turn the medical cannabis movement. The highlight of their advocacy so far was being present when Governor Haslam signed a bill allowing CBD oil for medical use for people with seizures.
As a hepatitis C survivor also suffering from heart problems and severe arthritis, Toni has faced more than her fair share of health problems. Managing these health issues gets expensive, so Toni is on a TennCare program that helps people on Medicare cover their premiums and copays. Last summer, though, Toni was kicked off this program without any warning, even though she was still eligible. Not only did this take a huge chunk out of her Social Security check, but it also caused the costs of her doctor’s appointments and her prescriptions to skyrocket. Without her medications, Toni’s health was rapidly deteriorating. She called TJC, and the attorneys there were able to get Toni back on the program and get her reimbursed for all the costs she had incurred in the meantime.
In the future, Toni is more than likely going to need a liver transplant. But that doesn’t keep her from serving as the glue that holds her family together. Whether caring for her aging parents (her father is a Korean War Vet), occasionally keeping great-grandchildren, participating in Boy Scouts with her grandson with autism, serving as a full-time caregiver for Wally, or keeping up with Gimli, Frodo, and Chloe (the family dogs), it is clear Toni has an advanced degree in being a mom. TJC is proud to honor Toni as a 2018 Mother of the Year.
Sherry Garland’s fighting spirit in the face of seemingly insurmountable odds led her to the nomination for Mother of the Year. Sherry Garland is being recognized for her dedication and love for her sister, Becky Lee Rains.
Ms. Garland’s sister and TJC client Becky Lee Rains got into a car wreck with her husband on November 28, 2017. That wreck tragically left Ms. Rains quadriplegic and took her husband’s life. Immediately, Ms. Rains’ sister, Sherry Garland, came down from her home in Kentucky to help her sister. On top of the devastating physical and emotional impact of the wreck, Ms. Rains found herself in great need of medical care with no health insurance. She and her husband had previously received health insurance coverage through the Health Insurance Market Place. When Becky’s premium rose to over $700 a month, they could no longer afford it.
Sherry and her sister, Ms. Rains, applied to TennCare’s CHOICES program seeking assistance for long-term care in the home, or a nursing home. They encountered many issues with the application process and sought assistance through Tennessee Justice Center. TJC was able to help the family fight through the red tape. Ms. Garland stated that the TJC staff, including CHOICES Client Advocate Katie Ann Twiggs, “made a difference in my life.” With TJC’s help, Ms. Rains was able to get approved for TennCare. She is currently receiving rehab care in a long-term care facility in Sparta, TN. Ms. Garland is optimistic that she will be able to go back to her Kentucky home soon. Ms. Rains is also planning to go to Kentucky where she will make a new home and, with the support of her sister, will continue to regain her strength.
Ms. Garland’s tireless fighting and refusal to cave under the pressures of bureaucracy for the sake of her sister demonstrate the selflessness and strength that we honor on Mother’s Day.
Michelle Hayes of Union City is being honored as a 2018 Mother of the Year for her courage and tireless dedication to ensuring her son has the health coverage he needs.
Michelle and her husband Scottie, who’s served in the military for almost 20 years, have three wonderful children. Their son Hudson is one-of-a-kind, literally. Hudson is the only person in the world with a B3GAT3 genetic mutation, causing heart defects, spine issues, joint problems and others requiring surgery. Despite being in constant pain, Hudson hardly ever complains, and his teachers say he is one of the top in his class.
Due to the condition, Hudson requires Private Duty Nursing. The family’s insurance, TriCare, is provided through Scottie’s military service. However, TriCare does not cover Private Duty Nursing. Consequently, Hudson is enrolled in TennCare, which provides them peace-of-mind and access to the nursing care that Hudson needs. Given how hard it has been even for her middle class family to fight to get nursing services for her son, Michelle believes the health care system is seriously broken.
Michelle has been a tireless advocate for her son. Her goal is that he will be happy, pain free, and independent. Michelle says she is extremely blessed that God chose her to be Hudson’s mother because he has made her a better person and her relationship with God has become closer, and for that she will forever be grateful.
We are so honored to recognize Michelle as a Mother of the Year. When we told her, she said, “I feel I am not different than any other mother that loves their kids with all of their heart and will do whatever it takes to help them.”
Sheila Hobbs and her husband Dave adopted Jase in 2016. Jase has significant health needs, and in April 2017, he was admitted to Vanderbilt Children’s Hospital for surgery. After a few weeks, he was ready to go home. His doctors said he needed home nursing care to stay safe and healthy, but unfortunately their family’s insurance did not cover it. At $20,000 a month, paying for the care on their own was out of the question.
For almost five months, Ms. Hobbs searched tirelessly for a solution for her son–waiting on hold for hours with different agencies, coordinating hospital staff, and supporting Jase while he was stuck far from home. Many would have been tempted to give up, but Sheila kept going. Through a social worker, Ms. Hobbs got in touch with the Tennessee Justice Center, and a few weeks later, Jase was approved for a special category of TennCare. At last, Ms. Hobbs and TJC found the obscure answer that brought her baby home.
TJC honors Sheila as a Mother of the Year for her amazing work advocating for her son. She is a model of persistence and love. She has also worked with TJC to share her story so that other families in similar situations will be able to find help and not feel so alone in the process.
Samuel Holley suffers from severe Asthma and Eczema. The goal of his mother Kristin has always been for him to have an inspiring, encouraging, productive life.
Kristin found an effective medicine, Xolair, which lessens the severity of both the asthma and eczema. TennCare said that Samuel did not meet the criteria to have Xolair covered by insurance. Without coverage, Xolair can cost thousands of dollars a month. Kristin contacted the Tennessee Justice Center for help. This spring, with the help of Sam’s allergist and TJC’s advocates and attorneys, TennCare agreed to cover Sam’s Xolair treatment.
Kristin is one of many parents in Tennessee that struggle to get the health care and coverage their children need. Kristin is a strong, motivated mother who, after watching her own mother work in emergency rooms, hospitals, and clinics as a nurse, is now in school to become a nurse herself, working when she can while raising her two sons.
Just as Kristin’s mom is a role model for her, so too is Kristin a role model for Sam. Sam has become aware of the limitations that others around him face. Kristin tells a story of Sam approaching a young girl, who also had severe Eczema, at a baseball game. Sam did not know this girl, but nonetheless, spoke to her and encouraged her. Her son was so thoughtful and compassionate towards another kid facing the same challenge.
Before Kristin contacted TJC, she felt discouraged and did not know what to do or where to get help. It was TJC’s immediate concern and willingness to do what was necessary to help Sam that gave her hope. For her model caring and determination, TJC is honored to name Kristin a 2018 Mother of the Year.
Meredith is a loving mother and wife. She fiercely advocated for the Affordable Care Act in 2017 to defend coverage that allows people who have preexisting conditions–as she does–to access adequate insurance.
Meredith has a genetic disorder called Ehlers- Danlos Syndrome or EDS. This disorder has led to many health complications, including a syndrome that causes Meredith to experience a heart rate spike to 200 beats per minute just from standing up, which often leads to her passing out. She’s also had to undergo many surgeries. She underwent brain surgery just weeks before showing up at a gathering to speak to the importance of the Affordable Care Act, proving she does not mess around when it comes to healthcare.
Along with her own health, Meredith advocates for that of her children. Despite the 50/50 chance of inheritance, all three of Meredith’s kids have EDS. Each has experienced different symptoms from this disorder: spontaneous, severe allergic reactions; frequent passing out; issues requiring surgical procedures. This disorder has presented itself in some very difficult ways for her children. Because Meredith’s kids can be on CoverKids, they’re able to get the care they need to try and live normal lives in spite of the condition.
Surgeries, heart issues, and a slew of medical complications don’t keep Meredith down–she makes it a priority to stand up for the coverage she and so many others need. Though she is too humble to say, Meredith is a superwoman, always finding ways to care for others, even when dealing with health concerns beyond what many could imagine. This level of commitment and compassion inspire us and moved Tennessee Justice Center to nominate her as a 2018 Mother of the Year.
For her fortitude through astounding challenges and her advocacy for families throughout Tennessee, Tennesse Justice Center honors Kerry Reed as a 2018 Mother of the Year.
Kerry Reed had been in the midst of personal and professional success when disaster struck. She’d established tenure at a local organization that provided the means for her to adopt three children as a single parent, then transitioned to building and running her own business from home in order to better meet her children’s needs. It was at that time–while Kerry was on private insurance–that their home was invaded by Lady Asian Beetles, provoking an extreme allergic reaction in Kerry that required months of steroid treatment. Her insurer dropped her for failing to disclose her allergy as a pre-existing condition despite the fact that Kerry had not known she was allergic. Other companies would not cover her.
Her financial struggles intensified when she caught double pneumonia, the uninsured treatments for which wiped out her savings. She began living paycheck-to-paycheck. A couple of years later, she was bitten by a brown recluse and developed a MRSA infection. Kerry went into debt to save her life because nobody would insure her. She eventually lost her family’s four-bedroom home to foreclosure because of her medical bills.
Kerry was finally able to get insurance in 2014 because of the Affordable Care Act. She wants everyone to know that, truly, two health events can cause a family to become nearly homeless. Her family is still struggling financially due to onset of rare diseases that affected Kerry in 2016. Thankfully, her family is now covered by Medicaid. She hopes that neighbors and politicians alike can see that regardless of background, people can develop drastic need in a short amount of time, and that health coverage and care needs to be for everyone.
Rosemarie “Rosie” Roan is lives in Murfreesboro with her husband, Robert, their two daughters, Ally (21) and Anna (16), along with their two dogs, cat, fish and bearded dragon lizard. Rosie’s oldest daughter, Ally, was diagnosed with cerebral palsy as a newborn and requires 24/7 skilled care every day. Adequate care services are crucial to Ally’s survival.
Rosie is the picture of devotion to her daughter. She is often up in the middle of the night taking care of Ally, providing both skilled and non-skilled care for her daughter. Rosie remained by Ally’s side for approximately 45 consecutive days while Ally was hospitalized–she even slept in the hospital room.
Rosie not only cares for Ally each time there is a missed nursing shift or hospitalization, but also cares for other individuals with intellectual and developmental disabilities in her community. Rosie works for Possibility Place in Murfreesboro, “an educational center-based and community-based day program for adults with intellectual and developmental disabilities where everyone is valued, accepted, encouraged, and shown the love of Christ.” At Possibility Place, Rosie teaches individuals math skills as well as a variety of other therapies. She provides these services for both private paying individuals as well as those enrolled in TennCare’s ECF CHOICES program, the same program in which her daughter Ally is enrolled.
Rosie is constantly caring for others with an ever-sunny disposition and positive outlook that never seem to fade. Tennessee Justice Center is proud to honor Rosemarie (“Rosie”) Roan as a 2018 Mother of the Year.
It is her caring, consideration and action for not only her own son but others like him that have inspired Tennessee Justice Center to name Patricia Shells as a 2018 Mother of the Year.
Patricia, a breast cancer survivor, has cared for her 28-year-old son, Patrick, his entire life. Patricia lovingly describes Patrick as her “handsome doll-like grown son that God gave me to take care of and I try to do my best. I bathe him, dress him…and provide for all of his needs.” Patricia is ALWAYS so positive and full of joy. While Patricia’s husband is working to provide for the family, Patricia’s day is packed with caring for Patrick, including taking him on outings, to parks, and to various programs. TennCare’s assistance makes this care possible.
Recently, during redetermination, Patrick lost his TennCare because he was not properly screened for his Disabled Adult Child status. Patricia contacted TennCare and did everything she was told to do–to no avail. One day, Patricia was speaking with another mother at Metro Parks Disabilities Program about the difficulty she was having recovering Patrick’s TennCare. The mother suggested Patricia contact Tennessee Justice Center. Through documentation, appeals, and a letter sent to the TennCare General Counsel, TJC was able to get TennCare’s assistance restored–just as Patricia was down to her last diaper for Patrick.
Patricia is in the process of establishing a nonprofit, Patrick’s Patchwork Plaze, for individuals with needs like her son. She is striving to create a place where Patrick and his friends can gather, enjoy each other’s company, and relax. Patricia also wants to create a space for the parents and caregivers of Patrick’s friends to spend time with one another. She envisions a beautiful Hope garden and a long porch with rocking chairs for this space. Patricia is currently running a GoFundMe called “A Bus for Us” to fundraise for a bus so Patrick and his friends can be more easily transported to outings.
Tennessee Justice Center is honoring Jeana Whitehead of Maryville as a Mother of the Year for her persistence and positivity in spite of the medical challenges that she and her daughter each face.
When Jeana’s daughter Nikki was born in 1995, Nikki’s father deserted the family. Jeana worked tirelessly in multiple jobs to provide for herself and Nikki, including providing for Nikki’s needs as a sufferer of social anxiety and other mental illnesses.
Jeana had been working as an Assistant Manager at Hancock Fabric Store when she experienced a series of health issues in quick succession that forced her to stop work. She rested, recovered, and once again found employment. In time, however, major pain issues forced her to quit her job, and a vicious cycle began. Whenever Jeana tried to provide for herself, medical issues would arise, limiting her capacity to work. Her daughter Nikki, now 22, has done what she can to help provide for their family by working, but has recently experienced medical conditions too extreme to allow her to work.
Jeana has been greatly assisted by SNAP (formerly food stamps) during her struggles, and has always been very grateful for the program. Her food, her daughter, and her ability to take another breath of life have always been her sense of security. She hopes one day she will be free to live and make it without any help. But what matters now it that she is here, her 22 year old daughter is here (happily engaged), and the two together are still making it through good and bad times.
“There is a lot that you don’t feel like you should fight for, for yourself, but it is completely different when it is for a child without a voice.” These are the words of Julie Whitacre, the devoted mother and fierce advocate of Ava Gray and Havyn Whitacre, two six-year-old twin girls who love dancing, dinosaurs, and Bruno Mars. Ava Gray was born with hydrocephalus, which left her with severe physical and intellectual disabilities. TennCare had provided Ava Gray with nurses to allow her to live at home with her family until last year when Julie was informed that TennCare was cutting their nursing hours below what Ava Gray needed to stay safe at home.
That is when Julie reached out to the Tennessee Justice Center, and our team helped find representation for Ava Gray to appeal their cut nursing hours. Jack Smith represented the Whitacres, and his skill and determination won them the appeal.
Fortunately, Julie has not been alone in this herculean effort of herding nurses, doctors and therapists for Ava Gray; planning class field trips, homework and lunches for Havyn; running her own business; and, navigating the complexities of TennCare. Kristina Pettigrew, Julie’s best friend, has shown unwavering dedication to Julie and her girls since day one. Kristina recalls holding Havyn in the hospital while Ava Gray was in the NICU and, at that moment, deciding to be a constant of stability, support, and love in their family.
Despite the stressors and challenges of raising a child with a complex medical condition, the Whitacre-Pettigrew team radiates levity, positivity, hospitality, and a hunger for life that is simply contagious. We are thrilled to honor both Julie and Kristina as 2018 Mothers of Year.
Brenda is a mother of five and served as the primary caregiver for her son Marvin until he went to college. When Marvin was 7, he was injured. The injury was so significant that he was put into the ICU and Brenda was told that her son might never speak again. However, Brenda refused to accept this fate, and told Marvin that if he could hear her to blink once. When Marvin was ready to leave the hospital three months later, his doctors suggested placing Marvin into a nursing home. Brenda responded that she would never leave her son and would care for him at home.
At age 11, Marvin was accepted into the Chicago Shriners Hospital, which is considered one of the best spinal cord injury hospitals. His mother stayed with him three days, and then had to fly back to Nashville to be with her other children. Marvin was upset by this, but Brenda made it a learning opportunity, telling Marvin that one day he would understand why she was doing this. Marvin credits the Shriners Hospital for teaching him life lessons he still uses today.
Marvin reveres his mother so highly that he nominated her as a Mother of the Year. Brenda’s “infectious spirit and personality” are most evident when she meets new people–she has never met a stranger and goes out of her way to say hi. Brenda is a fierce and loving mother, caring for Marvin every time he has medical needs. Marvin even describes his mother as “my biggest fan, telling me that I can accomplish anything I put my mind to”.
Susan Bright has been her son Adam’s caregiver and champion for all his 22 years. When Adam was 16, these roles took on new meaning. Driving one day on a rain slick road, he skidded, overcorrected, and rolled his SUV six times. In an instant, Adam’s and Susan’s lives were changed forever. Susan’s response to that challenge and tragedy has been extraordinary and inspiring.
Adam is now quadriplegic and relies on a feeding tube and many other medical devices. His mother knows each device inside and out—how to clean them, how to maintain them, and even how to fix them. And although Adam cannot speak, she is attuned to his every need, as only a devoted mom can be. She knows when he wants the T.V. channel switched, or when his khakis aren’t fitting quite right. A bull-rider before his accident, Adam was the class clown, and Susan praises his tenacity and wit. Most importantly, she knows that being loved is what keeps him going.
Before Adam’s accident, Susan had a demanding job in procurement at a Greenevillle manufacturing company. She tried to pay for Adam’s full time nurses for as long as she could after he was injured. Unfortunately, his medical needs proved too great, and she had to quit work to devote herself fully to his needs.
With health insurance no longer available through an employer, Medicaid was there as a lifeline for Adam, as it is for most children and young adults with such severe disabilities. Tennessee’s Medicaid program, TennCare, helps provide the professional nursing and medical care that he constantly needs.
Meeting Adam’s needs means that Susan’s workdays last eighteen hours – or longer. While Medicaid is a godsend, Susan has sometimes been overwhelmed trying to balance caring for Adam while battling insurance company red tape. After turning 21, Adam faced a life-threatening cut to his nursing hours due to insurance coverage rules. Susan reached out to Tennessee Justice Center for help. TJC and Susan have worked successfully as a team to maintain his care.
Congress has just given Susan a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries what will happen to Adam and the children of other mothers who face similar challenges.
Adam’s doctors praise Susan for her devotion and her success in maintaining Adam so well. TJC is honored to work with Susan on Adam’s behalf and to recognize Susan for her tireless efforts to ensure her son’s health care needs are met.
Margaret has been a tireless caregiver and support for her daughter and best friend, Janis (Jay), for over 40 years. Through myriad health problems, Margaret has always been by Jay’s side. The two are practically inseparable. Jay has Down syndrome and lived through her first heart surgery at just two years old. She has also survived Leukemia.
Despite the health challenges they have faced, Margaret looks for the good in all things. “Jay has given me a purpose,” Margaret stated with a smile on her face. “Jay has taught me kindness, patience and perseverance, and that no matter how tough it gets, it is going to get better.”
Last year, Margaret and Jay moved from Texas to Tennessee to be close to Jay’s specialist at Vanderbilt. Jay has had Medicaid health insurance to meet her complex needs her entire life. Unfortunately, when she moved to Tennessee, her coverage did not travel with her, and Margaret and Jay struggled to navigate the red tape of applying for Tennessee’s Medicaid program (TennCare).
Margaret recounted, “Medicaid has been there for Jay her entire life. This is the same girl. I don’t know how this happened.” Margaret did not give up, and she contacted the Tennessee Justice Center for help. TJC helped them cut through the red tape and win back coverage.
Congress has just given Margaret a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries what will happen to Jay and the children of other mothers who face similar challenges.
Margaret continues to be a full-time caregiver for Jay, which wouldn’t have been possible without the supports provided by Medicaid. Jay is 43 years old, and Margaret is 78. Their lives have been full of joy and adventure. When asked about their times together, they recount weekends at Opryland, listening to Jazz in New York clubs, and trips to Vegas to see Terry Fodder, a ventriloquist from America’s Got Talent. Margaret looked at Jay and said “We’ve gotten to see and do a lot. We’ve had some good times haven’t we Jay?” Jay looks up with a big smile and replies, “Oh yea!”
TJC is honored to recognize Margaret for her tireless efforts as a caregiver and advocate to ensure her daughter’s health care needs are met.
Jody is a self-employed hair stylist. At times, she has worked multiple jobs to provide for her family. Because she is self-employed, she does not have access to an employer health plan. She and her family are enrolled in the state’s Medicaid insurance program (TennCare), which provides them peace-of-mind and access to care. She is the mother of three sons, two teenagers and one twenty-year-old. They live with an array of interesting pets, including peacocks, lizards, and a scorpion.
Last year, her husband battled numerous life-threating health conditions, including stage 3 colon cancer, brain cancer, stomach cancer, blood clots in his lungs, and seizures. Jody stayed strong in caring for her husband as he underwent chemotherapy, and Jody untiringly drove him thousands of miles back and forth to his doctors’ appointments, all while working several jobs to support her family.
Thankfully TennCare covered most of his treatment and medical costs. Jody was a tireless caregiver and advocate. When her husband needed home health care, his insurance plan provided a list of home health agencies, but none of the agencies actually took his coverage. Jody didn’t give up, and continued to advocate until he finally got the services he needed. Unfortunately, Jody’s husband passed away last fall after a long and hard medical battle.
Jody’s grace and selflessness has shown through not only in how she well took care of her husband, but also in her dedication to taking care of her children. Soon after her husband passed away, Jody’s oldest son, Caleb, was diagnosed with poststreptococcal arthritis. He woke up and his knee was swollen 3-4x its original size. All of his joints were swollen, sometimes to the point that he couldn’t even walk. Although her son will fully recover, the process has taken a long time, and the doctor said that the medical episodes could recur. He hasn’t been able to go to school or work for almost five months because of his medical condition. Jody has faithfully cared for him and taken him to appointments. With Medicaid coverage, Caleb is expected to recover and get back to his life, school, and work.
Congress has just given Jody a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries what will happen to Caleb and the children of other mothers who face similar challenges.
Jody’s patience and constant commitment to her family shine through, whether she is driving to appointments, on the phone for hours, gathering huge amounts of documentation. Her strength is admirable as she has fought her family’s numerous health care battles with courage and resilience.
Jody even manages to stay calm with her kids keeping their pet scorpion in the house, but she does let them have the pleasure of caring for it!
For her unwavering dedication to her family, TJC is honored to name Jody Harwell as a 2017 “Mother of the Year.”
Renee’s 80 year-old mother, Imogene Liebengood, lives in Goodlettsville. Unfortunately Imogene has severe health problems including dementia and a myriad of physical disabilities. Last year, her health had deteriorated to the point of required care in a nursing facility. When she quickly exhausted her own resources, she faced discharge and a disruption of care.
Fortunately, Medicaid was there for Imogene. Medicaid, known in Tennessee as TennCare, is the nation’s health care safety net. TennCare’s CHOICES program cares for nearly two thirds of the state’s frail adults who need long-term care.
Imogene’s initial application for CHOICES was mistakenly denied, however, and it appeared she would be discharged. Her only daughter, Renee, works at the local school system’s family resource center serving Robertson County students and families. Any time Renee is not at her job is devoted to caring for a family member with Down syndrome. Overwhelmed by CHOICES red tape, Renee was terrified for her mother, because doctors warned that Imogene could not be safely cared for without the around-the-clock care provided in the nursing home.
Renee called TJC for help. TJC helped the family appeal Imogene’s discharge from the nursing home and secure the CHOICES coverage that she needed to stay in the facility. As a result of TJC’s intervention and Renee’s steadfast advocacy, the nursing facility did not discharge Imogene, and she was ultimately approved for CHOICES.
Renee was so relieved. She recalls, “Once I was in contact with the Tennessee Justice Center, I felt mom would be taken care of, and a huge weight was taken off my heart.”
Congress has just given Renee a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries what will happen to Renee and other mothers who face similar challenges.
Renee’s devotion to caring for family members while serving other families in her community is an inspiration. TJC is honored to recognize Renee Hix as a Mother of the Year for her tireless efforts to meet the needs of others.
Last year, Barbara’s daughter, Amanda Anderson, was dying of a rare form of cancer, leaving behind two daughters. Barbara and her husband James stepped in to do all they could to ease Amanda’s suffering and care for their two granddaughters.
One of Amanda’s greatest fears was for the health and future of her children. She was afraid of leaving her daughters without health insurance. She was especially tormented by worries for 17-year old Samantha, who suffers from a rare, potentially life-threatening autoimmune disease.
Amanda’s parents, Barbara and James McMurtry, tried to honor their daughter’s wish to secure health coverage. A hospice worker reached out to contact TJC for help. Fortunately, Medicaid was available to provide health care for Amanda’s children, as it does for over half of Tennessee’s children. TJC immediately went to work, gathering documentation and information to prove that the children were eligible for coverage and help them through the complicated application process.
Within days, Barbara received the children’s new TennCare cards and was able to show them to Amanda. With immense relief, Amanda thanked God, saying, “That’s what I’ve been praying for.” A few days later, she was gone. Barbara recalls that Amanda was able to find peace and comfort in her last days knowing that her daughters would have the security of coverage after she was gone. Barbara said, “Learning her daughter had insurance made it easier for Amanda to go to rest.”
Her mother and grandmother’s hard work to secure health coverage and a brighter future for Samantha will have ripple effects for years to come in Samantha’s own life. Samantha, now assured of the medical treatment she needs, she is starting college in the fall and is planning on a career in social work helping others.
Congress has just given Barbara a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries about what will happen to Samantha and others’ grandchildren who face similar challenges.
In her loving devotion to her daughter and grandchildren, Barbara embodies the courage and love we celebrate on Mother’s Day. She is proud to see those qualities – and Amanda’s big heart – in her grandchildren. TJC is honored to recognize Barbara for her tireless efforts to care for her daughter in her last days and to ensure her granddaughters’ health care needs are met.
Danielle Molloy is the mother of 3 children, 14-year-old Marilyn who enjoys reading, art, and cosplay; 13-year-old Nolan who enjoys everything related to videogames; and 1-year-old Branigan who excels at being an adorable toddler.
Like many mothers, Danielle’s greatest hope is for her children to be happy and healthy. Unfortunately, this has not always been an easy goal for the family to achieve. Danielle’s son, Nolan, has severe mental health needs. As a result of these needs, last summer Nolan was hospitalized several times. Although Danielle and her children have insurance through her employer, Nolan’s hospitalizations and the health needs of other members of the family left Danielle with thousands of dollars in out-of-pocket medical expenses.
Danielle says that this time last year she was afraid. She believed that if she could not receive more help for Nolan, he would eventually die from something related to his mental illness. While shouldering this fear, Danielle was also afraid that his illness would be devastating for the rest of her family emotionally. During the summer of 2016, Nolan continued to spiral downward. None of the treatment options available on her private plan were effective. Unfortunately, the network they had through her employer-sponsored insurance left her with no other options.
Fortunately, Medicaid is there as a safety net for Tennessee’s children. Danielle applied for the state’s Medicaid program, TennCare, to help Nolan get the extra medical help he needs. She was told that Nolan was ineligible, but she did not give up. She called Tennessee Justice Center for help.
Together she and TJC cut through the red tape and obtained TennCare for her three children.
Danielle has already noticed positive changes. Nolan has been able to go to a different organization for his mental health needs that has the capacity to meet his needs. Danielle is also grateful that her daughter Marilyn has been able to get help through the services offered by TennCare. Danielle says that her daughter witnessed her brother’s illness and has probably been the most affected besides Nolan. Luckily, Marilyn has been able to get help for the trauma she experienced.
Congress has just given Jody a new worry with the bill that will repeal Obamacare. Nolan could easily max out on his insurance benefits if Congress overturns Obamacare’s ban on lifetime insurance limits, or if the kids would be ineligible for future coverage because of preexisting conditions. Congress has also tacked massive Medicaid cuts onto the bill. She worries what will happen to Nolan and the children of other mothers who face similar challenges.
Danielle feels honored to be one of Tennessee Justice Center’s Mothers of the Year. Danielle is pleased with the growth of her children. She loves that they are not afraid to be themselves and she likes watching who they are going to become. And she will keep fighting for them, and for other children, to make sure they grow up healthy.
For Danielle’s relentless advocacy, devotion to her children, and patience, TJC is proud to honor her as a Mother of the Year. Her courage, love, and perseverance embody the qualities we celebrate on Mother’s Day.
Tempestt is a vibrant 31-year-old. She was born with health needs including intellectual disability and blindness. She is also prone to lymphedema, a collection of fluid in the arms and legs.
When Tempestt was around six years old, her family realized she needed additional educational support, so they found a daycare for kids with disabilities. Tempestt continued her education at the Tennessee School for the Blind until she was 22. When Tempestt graduated, Katreda worked to find a way to keep her daughter safe and healthy in the community, with the supports she needed, while also being able to support herself and her family.
Katreda had been serving her community at the police department, but that demanding schedule eventually conflicted with the demands of being a full-time caregiver for Tempestt. In July 2016, she learned about Employment and Community First (ECF) CHOICES, a new TennCare (Medicaid) program for people with intellectual and developmental disabilities.
The process of applying for this new program and organizing the services Tempestt need proved daunting, so Katreda reached out to the Tennessee Justice Center for help cutting through the red tape.
TJC worked with Katreda to arrange the Medicaid support that enables her to be Tempestt’s caregiver.
Katreda remarked that TJC “didn’t have to walk in my shoes to know my pain, to know what I needed for my daughter.”
Thanks to Medicaid and Katreda’s dedicated caregiving, Tempestt is able to thrive in her community. During the day, they walk on the track at the YMCA, go to the park, and pick up groceries together. They celebrate special occasions with Tempestt’s favorite catfish dinner. Tempestt loves having her mom as her full-time caregiver. Katreda warmly says of her new ability to stay home, “God has given me a special blessing.”
Congress has just given Katreda a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries what will happen to Tempestt and the children of other mothers who face similar challenges.
TJC is honored to recognize Katreda for her tireless efforts to ensure her daughter’s health care needs are met.
Christina is the mother of two children, 2 year-old Oliver, who is adventurous, intelligent, and curious, and 7 month-old Norah, who is laid back, loving, and already has a sense of humor. Christina’s greatest wish is to give her kids a foundation for having a successful, fulfilling life. Like many moms, Christina wants her children to concentrate on their education. She is proud that at Oliver’s young age, he already knows his ABCs and his numbers and enjoys books.
Christina understands that staying healthy is key to having a brighter future. Growing up, her family often did not have health insurance, so they rarely went to the doctor. When they were sick they just had to suffer through it, unless their illness required a visit to the emergency room. Christina says that as a child, she did not always get preventive care and she still struggles with health problems that could have been prevented.
Christina is grateful that thanks to the state’s Medicaid program, TennCare, she and her family have the security and support they need for a healthy future. Last fall, Christina received a complex packet from TennCare to prove that the children remain eligible. Like many others, she found the paperwork overwhelming but was determined to protect her children’s coverage. Christina called Tennessee Justice Center, where a client advocate helped her navigate the renewal process, and the state agreed to continue covering the kids. Any parent can identify with her fear that her children might not be able to get medical care, but Christina was especially terrified because of her own childhood experience. She is so grateful for Medicaid.
Congress has just given Christina a new worry by tacking massive Medicaid cuts onto the bill that will repeal Obamacare. She worries what will happen to Norah and Oliver and children of other mothers who face similar challenges. She does not want any other children to have to go without health care they need growing up like she did.
When asked how she feels about being named one of TJC’s Mothers of the Year, Christina said she is shocked and really grateful to be acknowledged. She spends most of her time mothering and puts her all into nurturing her children. TJC is proud to honor Christina as a Mother of the Year. Her courage and dedication as a single mom making sure that her children have access to the health insurance she often did not have as a child is inspiring, and her love and dedication towards her children embody the qualities we celebrate on Mother’s Day. TJC is honored to name Christina Poole as a 2017 “Mother of the Year.”
“My life would be chaos without my mom. She means the world to me. I don’t know what I would do without her. She’s been my best friend all my life.”
This was Cynthia Baker’s response when asked her about her mother, Shirley Bagwell. When her daughter was diagnosed as legally blind at a young age, Shirley and her husband David knew they would need to work hard to be sure she could have the same opportunities as everyone else. And they’ve done just that, offering support for Cynthia in any way they can.
While Cynthia was growing up, she attended public schools. Shirley explained, “We wanted to treat her just like the other kids.” But due to Cynthia’s visual limitations, she also needed extra training. Shirley and David helped her enroll in a special training school for cafeteria and restaurant work, which likely helped her find employment later. Shirley and David also sent her to a school for the blind in Florida to learn life skills for living with blindness. There, Cynthia met and married a fellow student, Ricky.
At the age of 30, Cynthia left home, and she and Ricky moved to Texas. Unfortunately Cynthia and Ricky did not have the support or opportunities they needed in Texas, and they lost their apartment. Once again, Shirley and David were there. “I told David, ‘We’re going down there to get them.’ My daughter’s not gonna live that way.” They drove to Texas and helped Cynthia and Ricky move to East Tennessee — into a home Shirley and David had bought for them.
Cynthia and Ricky pay her parents an affordable rent, and Shirley supports them any way she can. She says, “I generally help them with medical expenses,” she explained. “Since they can’t see to write checks, I balance their checkbook and help manage their finances. I take Cynthia grocery shopping and provide transportation when I can, like for going to the doctor.”
Shirley, now 72, spends as much time with Cynthia as she can. The four have dinner together often and sometimes go to the beach. But Shirley also worries about what will happen when she and David aren’t there anymore to offer support. “We want to be sure that if something happened to us, she could live a productive life without us. The top priority for us is making sure Cynthia and Ricky are taken care of, and as long as we have any say, they’ll always have a place they can live.”
Their fears are understandable, as Cynthia and Ricky have struggled to find employment due to their eyesight. Because of this, Cynthia finds herself in the coverage gap, not earning enough money to qualify for health coverage on the Marketplace, and not fitting one of the precise categories necessary to receive TennCare. Currently, in Tennessee, she has no affordable option for the health care she needs. But Shirley keeps fighting, hoping the Governor’s health care plan, Insure Tennessee, will pass and Cynthia will be able to access care.
Cynthia and Ricky need eye exams frequently due to their vision impairment, but without health coverage Shirley helps them pay out of pocket. Recently, Cynthia was bitten on her face and it swelled up. She had no idea what kind of bite it was or what was happening, but they couldn’t afford to go check. Like many uninsured families across our state, they had to take the risk that it wasn’t too serious.
When we asked how she discovered TJC, she answered, “I heard about the Tennessee Justice Center on TV, and I thought this could be some help. If she could only get health care–that’s been the struggle ever since we came back to Tennessee because there’s just nothing here for her. It’s not right. She deserves health care as much as anyone does.” We agree.
For her great love and devotion to her daughter, TJC is honored to recognize Shirley as a Mother of the Year.
FLOYD & WANDA BAKER
Your children are your children, forever. Floyd and Wanda Baker know that well. Though their five children have grown up and moved away, the Bakers knew they would always be ready to step in if their children needed them.
That moment came during the fall of 2015. A series of strokes had left their daughter Linda paralyzed on her right side and bedridden. Her son managed her care at home on his own for as long as he could, but eventually Linda’s serious health needs took their toll. Linda was hospitalized several times as her health deteriorated through back surgery and treatment for a dangerous blood clot.
As Linda transitioned from the hospital to a skilled nursing facility for physical and occupational therapy, she needed someone on her side fighting for her care and health coverage so she could focus on her recovery. Floyd and Wanda took over as their daughter’s advocates, making regular four-hour round trips to her rehab facility in Memphis from their home in West Tennessee.
While at the nursing facility, it became apparent that Linda’s physical condition had seriously declined and she would need long-term care. Unfortunately, Linda’s Medicare only covered short-term nursing. The facility cost thousands of dollars per month, making it too expensive to pay out of pocket. To stay and get the care she needed, Linda needed to a medical evaluation for TennCare’s long-term care program CHOICES. Yet, when the Bakers asked the nursing facility for help applying for CHOICES, the facility refused.
Looking for guidance, the Bakers called the Tennessee Justice Center for help. One of TJC’s attorneys and Warfield Fellow Megan expedited the evaluation they needed and Linda was approved for the CHOICES program within days! Wanda says, “I don’t know how we would have climbed that hill without you. And it was a steep one. Now we claim Megan as part of the family.”
Once they’d secured Linda’s health coverage, Floyd and Wanda were anxious to bring their daughter closer to home. After the Bakers found a spot at wonderful facility near their farm in West Tennessee, TJC smoothed Linda’s transition to ensure she received seamless continuity of care.Today, Linda is settled into her new home where her family can easily visit and keep up with her care.
For their unwavering dedication to their daughter, TJC honors Floyd and Wanda Baker as two of our 2016 Parents of the Year.
Floyd and Wanda Baker
Meagan was a happy, healthy mom who worked hard to take care of her family. She was working nearly fulltime at a local deli, homeschooling her three children, and caring for her husband, a disabled veteran.
But in March 2015, Meagan fell mysteriously ill. She was not acting like herself and could tell that something was wrong. The last memory she has is calling 911. Her symptoms were originally dismissed by doctors as a psychiatric illness, despite not having any history of psychiatric issues. However her condition rapidly deteriorated and she fell into a coma. The doctors realized their initial diagnosis was off and something more serious must wrong with Meagan.
While in a coma, Meagan was transferred between 3 different hospitals in order to discover the cause. Although most of her symptoms were neurological, a full body scan discovered a rare ovarian tumor. Doctors eventually discovered that the rare tumor was causing Meagan’s immune system to attack her brain. The following day doctors were able to remove the tumor and Meagan quickly regained consciousness. Meagan needed to remain in the hospital for a few weeks to undergo rehabilitation after being in the coma, but the family’s struggles didn’t end there.
TennCare should have covered Meagan’s 7-week hospitalization, but instead the Biggers were left with nearly $1 million in medical debt. Instead of being able to focus on her recovery and her family, Meagan faced months of hassle fighting with the state for medical coverage. She was not properly screened for TennCare, and when her husband attempted to get her coverage he was turned away. During his multiple attempts, he was told that Meagan herself needed to get the coverage, even though she was lying in a hospital bed in a coma.
After she was discharged, Meagan began the long process to get TennCare coverage dated back to her hospital admission. Though she knew the state had not considered all the facts in its decision, TennCare denied her request to present her case to them four times.
Searching for help online, Meagan discovered the Tennessee Justice Center. Attorneys at the Tennessee Justice Center helped her file for review in court and challenge the rule that allowed TennCare to deny her a fair hearing. TJC is still working with Meagan to resolve this case, but we are hopeful that she will get the coverage she needs. Meagan’s case could set the precedent for other cases like hers. If she succeeds, Meagan will help thousands of other families across Tennessee that are also denied fair hearings from TennCare.
With TJC’s assistance, Meagan can now focus on her health and her family. The whole family loves spending time together, especially when they get to be outside with their multiple dogs. When asked what advice she would give to other families facing these struggles, Meagan says, “Never stop fighting.”
For her passion, dedication to her family, and her fighting spirit, the Tennessee Justice Center is delighted to honor Meagan Bigger as a 2016 Mother of the Year.
Lelia Burke left her healthy, happy 3-month-old daughter in the care of her cousin when she went off to work the morning for June 12, 2013. A few hours later, she got an emergency call at work telling her that she needed to go to the hospital right away. Her baby girl was there and not breathing.
At the hospital she was told that her daughter had a skull fractures on both sides of her head and a hemorrhage in her brain. Devastated and completely overwhelmed, Ms. Burke passed out. Although she did not recognize the signs of abuse, the doctors did. Ms. Burkes’s cousin was found guilty of aggravated child abuse and aggravated child neglect and sentenced to 17 years in prison.
In one day, Lelia’s life changed. She went from being the mother to two healthy girls, Nevaeh and Evianna, to emerging from that day forever haunted. Nevaeh, who was 2-years-old at the time, still has nightmares and has been diagnosed with PTSD and depression. Evianna, who is now 3-years-old, cannot eat by herself, walk, or talk. She has seizures, is blind, and suffers from other medical conditions resulting from her severe head trauma.
Evianna needs constant care in order to survive. Last summer, TennCare sent a letter to Lelia saying that they were going to reduce the amount of home health hours from 40 hours a week to 21 hours a week. Due to Evianna’s complex needs, Lelia knew 21 hours would not be enough to sustain her baby girl.
Lelia appealed and TennCare told her that they would have to hold a hearing to decide the matter. With the prospect of facing a lawyer, a doctor, and a judge to fight for the rights for her daughter, Lelia turned to TJC for support. TJC prepared a pro bono attorney to represent Evianna and together they worked to get Evianna the care she needed.
Lelia said, “TJC was right up there on the line with me. If I was going to fight this hard, then y’all were going to fight this hard too.” In the end, that hard work paid off. Evianna was given 40 hours of home nursing care a week – which is an even higher level of care than she had before.
At that time, Evianna could only sit up by herself for 15 seconds. With the care she is getting following TJC’s help, she is able to sit up for 3 minutes. She is starting to hold more objects and is able to use the left side of body more. She has gained 7 pounds in the last few months and is gaining vital communication skills. With the help of her nurse, she has even started going to school twice a week.
Lelia says “It can be challenging and stressful to be the parent of a special needs child, but once you see the progress that the child makes and the smiles, they could just wake up and they just light up your world. It’s a joy, it’s a blessing. This is what I was put on earth to do.”
Evianna loves being sung to and being held by her mom; nothing gives her more joy. Neveah loves being a big sister and taking care of Evianna, too. “I get my strength from, God of course, but also Evianna. If she can fight like this every day than I know I can. We’ve made it this far, were a team. My kids give me my joy.”
For her love and dedication to getting the specialized care her daughter needs, TJC is honored to call Lelia a Mother of the Year.
For Jennifer Howell, taking care of her family is a full-time job. She and her husband Neil have four kids, and her days are a whirlwind of getting the three older children ready for school, trying to keep her three-year-old in check, and keeping the house in order.
The Howells have had their share of health issues: Neil’s first wife passed away from cancer, and Jennifer struggled through a high-risk pregnancy with their youngest daughter, Ruth. Then, in the in September 2015, Neil was in a motorcycle wreck that changed all their lives. He told Jennifer that he was fine, but she insisted he go to the hospital to get checked out. There, a full body scan revealed a potentially lethal hidden danger: a large mass on Neil’s right kidney.
Neil had had no symptoms that might be associated with the mass. “Had he not had that accident, we might not have found out until stage 4,” Jennifer said. The doctor told Neil to get a biopsy right away. If the mass was malignant, he’d need surgery as soon as possible.
There was just one problem. Neil did not have health insurance.
Neil’s finances had been nearly wiped out by his first wife’s illness, and he’d given up his trucking business to work closer to home near his kids. His job paid barely too much for him to qualify for TennCare, and barely too little for him to qualify for help on the Health Insurance Marketplace. Without insurance, no doctors would perform Neil’s biopsy, let alone surgery. One doctor told him he probably had cancer, but said he couldn’t help until Neil had insurance.
“During that whole stressful time, we didn’t know what was going to happen,” Jennifer said. “We couldn’t afford a hundred thousand dollars for surgery. We’d have to sell our house.”
Luckily, Jennifer called the Tennessee Justice Center for help. TJC helped Neil figure how much overtime he could work and be eligible for TennCare. They helped him apply and connected him with a doctor at Saint Thomas hospital who was willing to do the biopsy while Neil was waiting for the application to be processed. When the results came back that the mass was malignant, TJC worked with TennCare to get his application processed as quickly as possible.
Thanks to TJC’s and Jennifer’s fierce advocacy, Neil had surgery to remove his right kidney last November. His doctors say his chances of recovery are high.
Jennifer is grateful for the help TJC offered her family. Without TJC’s help, he might not have gotten the surgery until it was too late. “Truly, we would have been doing this a lot, lot longer had we not found you,” Jennifer said.
Now, Jennifer is looking into going back to work, and Neil is exploring jobs that offer health insurance. Soon, they hope, they’ll have better financial security and won’t need to rely on TennCare for health coverage. But they are grateful for the program was there when he needed it.
In the meantime, Jennifer relies on her faith and her family for support. “A lot of prayer has gone into this, from all over the place,” she said. “We just have to take it day by day.”
For Jennifer’s relentless advocacy and tireless dedication to her family, TJC is proud to honor her as Mother of the Year.
Laura Riggs was the happy mother of 3 daughters, Alyssa, Kelsey, and Adyson, when to her delight she found out she was pregnant with her first son. Jaxon was born just 3 days before Christmas 2014. Unfortunately, Jaxon would not be home for Christmas—he was born 10 weeks early and only weighed 3 pounds, 13 ounces. He spent his first 6 weeks of life in the hospital Neonatal Intensive Care Unit (NICU).
The time was challenging for the whole family. Laura is an underwriter for consumer loans at Y12 Federal Credit Union and her husband, James, is a plant manager and machine operator for National Custom Printing. While James continued to work full time to support the family, Laura split her time between her 3 girls and being at the NICU with her newborn son. Laura would go to the NICU when her older daughters were at school as long as she could get someone to watch her 3 year old, or she would go to the hospital at night after the girls were in bed just to spend a few hours with Jaxon.
Laura was finally able to bring Jaxon home on January 31, 2015, but she also brought home a bill for over $100,000. At the hospital, Laura applied to get him TennCare. After numerous conversations with hospital staff, TennCare, and other agencies, Jaxon was approved for TennCare, but the start date of his coverage was not what Laura had originally been told, leaving Jaxon without health care coverage for most of his hospital stay. Laura refused to give up. She knew that TennCare should be covering the bill and filed an appeal.
In May 2015, with a hearing coming up, she called TJC for help. TJC was able to help Laura understand Jaxon’s rights and effectively communicate with TennCare to fix the issue. With TJC’s guidance, Laura was able to get Jaxon’s hospital bills fully covered, freeing the family of 6 from the burden of crushing medical debt.
Laura said TJC’s “assistance and encouragement definitely helped get my family through that difficult time. They provided resources that would help, and showed that they care about the families that they work with.”
After coming home from the hospital, it was clear that Jaxon’s development was delayed a few months, and he may have had vision or hearing issues due to his premature birth. With the help of his family and access to health care, he has progressed quickly. Even his NICU nurses are impressed with his progress when he visits every few months.
Jaxon is now 14 months old and is as healthy as can be! He is meeting all of his current milestones and he is starting to try to walk. Jaxon enjoys being outside, taking baths, eating, and being loved on. He is very affectionate and enjoys playing with his sisters. Laura says, “The best part of my afternoons is watching the girls dance around and play with Jaxon. The sound of their laughter is worth every difficult time we had during his first 6 weeks of life.”
For her tireless dedication to her four children, TJC celebrates Laura, one of our Mothers of the Year.
Frida’s father moved his family from Mexico to the U.S. when Frida was six, hoping for them to become U.S. citizens one day. “It was his dream for us to stay here so we’d have a better life,” Frida said.
Despite having a college degree, her father had struggled to find steady work in Mexico. The U.S. provided the opportunity and stability for their family to succeed. But when her father passed away from colon cancer six years later, that sense of opportunity became harder to hold onto. Without her father, Frida, her mother Juliet, and her sister Dulce have struggled financially. Frida and her mother both work full time in their hometown of Jackson, TN to help support the family. When Frida’s son Bradley came along, she had to work even harder.
But in the summer of 2014, a medical emergency put their success in jeopardy. Frida was admitted to the E.R. with severe pain, and underwent emergency gall bladder surgery. Her job didn’t provide insurance, and though Frida has a legal immigration status, she didn’t qualify for TennCare. When she left the hospital after her surgery, she faced medical bills of $46,000. To make matters worse, she had tried for months to apply for TennCare for her son, Bradley, who is a U.S. citizen, but hadn’t heard anything back. She faced mounting medical bills not only for her care, but for his care as well.
“The bills were so scary to me,” Frida said. “With our budget, we make just enough to survive. I didn’t choose to get sick. And with Bradley I thought it was unfair because he’s a U.S. citizen. I just kept asking myself, ‘why?’”
Frida was eligible for assistance under the Emergency Medicaid Services program, which reimburses hospitals for emergency care they provide to people who would qualify for TennCare except for their immigration status. But technological failures and communication problems within multiple state offices had effectively barred hospitals from being able to apply for their patients. Frida’s application went nearly a year without a decision. When the state finally processed it, she was denied.
This not only impacted Frida’s personal finances, but the hospital’s as well. The hospital had no way to cover the expenses of Frida’s surgery, which should have been covered by EMS. When hospitals don’t get compensated for the care they provide, the cost gets passed on to people who do have insurance, and can even lead to layoffs and hospital closures. This has already happened to three hospitals in West Tennessee, and the fourth is closing on May 18th.
But Frida wasn’t willing to give up. She contacted the Tennessee Justice Center, who filed an appeal and fought to get Frida’s hospital stay covered. They also followed up on Bradley’s applications. Within a few weeks, Bradley was enrolled in TennCare, and Frida learned that her medical debt would be paid. “TJC was wonderful,” Frida said. “If it hadn’t been for y’all, I wouldn’t have gotten the coverage. You were like an angel.”
Now, Frida and her family are back on track toward achieving her father’s dream. They are planning to apply for permanent resident status next year. From there, they will work toward U.S. citizenship. “It’s a big step forward for us,” Frida said. “We have worked so hard to get where we are.”
In her free time, Frida enjoys going to the park or the mall with her family, or taking Bradley to Chuck E. Cheese. She has lived in Jackson much of her life, but hopes to travel beyond Tennessee someday. She plans to make the most of the opportunities her country has to offer. “The U.S. is my life,” Frida said.
She is grateful for the help TJC provided her family. She said, “I hope more people can get help from people like you.”
For Frida’s extraordinary tenacity and devotion to her family, TJC is proud to honor her as 2016 Mother of the Year.
Karen Samborski is her husband’s translator. She speaks for him when he can’t find the words. She helps him understand when people are talking too fast. In church, she takes notes on the sermon so her husband, Mike, can read and understand.
“He calls me his interpreter,” she says.
It’s not that Mike doesn’t speak English. He can read, write, and speak just fine. But Mike has receptive aphasia, a brain condition resulting from a stroke in the fall of 2013. The aphasia means Mike’s brain has trouble interpreting others’ speech. “A lot of times, it goes to writing things down,” Karen says.
Mike was a landscape designer and stone mason and owned his own business, but after the stroke he couldn’t go back to work, and Karen had to leave her work in retail management to help care for him. In the fall of 2014, Karen and Mike moved from Massachusetts to Lebanon, TN to live with Karen’s twin sister and her husband until they could get back on their feet.
In Massachusetts, Mike had been receiving speech therapy through the state’s Medicaid program. Karen and Mike thought he’d be able to get help in Tennessee, too. Karen tried to research coverage options for Mike before they moved, but information was scarce. “It was unsettling to move down here and hope it all falls into place,” Karen said.
After they arrived, Mike applied for TennCare. They waited months for a decision, but no one they talked to could tell them whether Mike would be eligible. Finally, Mike was turned down.
Confused, Karen called the Tennessee Justice Center for help. Even though Mike had been determined disabled by the Social Security Administration, he was still in the two-year waiting period for Medicare and was not eligible for any health insurance in Tennessee. Tennessee’s Medicaid program (TennCare) is much more restrictive than in Massachusetts.
To make matters worse, they were not eligible for assistance to buy coverage on HealthCare.gov. Mike and Karen were in the coverage gap. “It was shocking to come down here and find it was totally different,” Karen said. “I was just so disappointed. I saw how well he responded to speech therapy back home. I saw what an improvement it made.” Karen was even more devastated to learn that Insure Tennessee, a plan that would have provided coverage to people in her and Mike’s situation, had failed in the state legislature.
“It’s a loved one’s health.” Karen said. “Why do we have to put a price on that?”
Staff at the Tennessee Justice Center explained the complex policy and political situation that had left her and her husband behind. TJC also found a way to get them coverage: if Karen took a part-time job, she and her husband would have enough income for assistance on the Marketplace, and she could still be home part time to care for Mike. TJC connected Karen with a health insurance Navigator, who helped her select a plan.
When Mike’s Medicare finally started, TJC connected them with a Medicare advocate to find a plan covering speech therapy. And when tax issues about their home in Massachusetts threatened to complicate their coverage, TJC worked with the Legal Aid Society to answer her questions. Because of TJC’s efforts, Mike and Karen are now out of the coverage gap. While they still have health care challenges, they have both been able to see a primary physician.
Mike said, “I’ve been very lucky to have had my wife with me through this whole time and still helping. This stroke has been rough for both of us. In some ways we are closer now than before even though we’ve always been there for each other. Having insurance has lifted a heavy burden off of our shoulders.”
For her part, Karen is glad she can help Mike navigate the world. “This was part of our wedding vows,” she says. “We took a vow: in sickness and in health.”
For her dedication and advocacy on behalf of her husband, TJC celebrates Karen as a Wife of the Year.
When Robin Watkins finally moved her sister, MeLynda, from Virginia to Tennessee, she thought the hardest part was over. Robin and MeLynda had just lost their mother. For MeLynda, whose disabilities require round-the-clock care, that meant she’d also lost her full-time caregiver, and the only home she’d ever known. Thankfully, Robin and her husband David stepped in to help. Robin left her job with the Veterans Administration to care for MeLynda full-time in their home in Saulsbury, near Jackson.
Due to her cerebral palsy, MeLynda cannot move her legs. She uses a lift to move from her wheelchair to her bed or recliner, a process made more difficult by a childhood injury to her tailbone. She needs assistance eating and bathing, and has cognitive and intellectual disabilities that affect her memory and ability to communicate. Although she is 35, her mental development is closer to that of a five-year-old.
Robin was willing to alter her life and career to ensure that MeLynda had the care she needed. “We had to what was best for her,” Robin said. As soon as Robin and David unpacked MeLynda’s things, Robin began working to secure the benefits MeLynda would need in her new home.
Robin believed the best option for MeLynda was the Tennessee Self-Determination Waiver Program, which would allow Robin to be MeLynda’s paid caregiver. But communication failures between state agencies made applying for the program nearly impossible. The Department of Intellectual and Developmental Disabilities (DIDD) caseworker and the TennCare Bureau were telling Robin opposite things about how to proceed. Robin spent months filing applications and appeals, to no avail.
Meanwhile, MeLynda had no access to care. She could not get therapy and needed wheelchair modifications. Robin was paying out-of-pocket for doctor visits and medicine. Though Robin left her job to care for MeLynda, she wasn’t yet being paid for her time. It was a huge financial burden.
“It was the most frustrating thing I’ve ever been through,” she said. “What’s so frustrating is the lack of knowledge and communication between the agencies.” Finally, Robin called the Tennessee Justice Center for help. TJC attorneys facilitated communication between TennCare and DIDD, and helped ensure MeLynda was enrolled in programs to meet her needs.
“TJC was there from the beginning,” Robin said. “It was like the burden had been lifted off my shoulders and there was someone who could help me carry it. Without their help, I truly believe that we would still be waiting for answers.” Now, MeLynda has settled into her new home. Robin is registered as her paid caregiver, which allows her to stay home with MeLynda full-time. She also receives other therapies and programs to help her thrive. She loves spending time with her family, especially traveling with Robin and David, visiting with David daughter’s Mandy, and doing crafts with her sister Elisabeth.
Despite all the changes for the family, Robin is happy to care for her sister, and she’s proud of what MeLynda has accomplished. “She does really good with the physical and mental challenges she faces daily and what she has been through,” Robin said.
For Robin’s relentless advocacy and passionate dedication to her sister, we are proud to honor her as a TJC Sister of the Year.
In the spring of 2014, Emily and her husband Chris joyously learned that they were expecting their first child. Around the same time, Chris changed jobs. His new job did not offer employee insurance. Emily applied for TennCare to make sure she got the pregnancy care she needed until they figured out another coverage option.
While waiting to hear about their health coverage, Emily was diagnosed with preeclampsia, a pregnancy complication that can be fatal to both mother and baby. Preeclampsia causes high blood pressure and can lead to seizures, as well as liver and kidney failure. Eventually it can even affect brain and heart functions. The condition also affects the baby’s growth and cuts off his blood and nutrient supply.
On July 16th, Beckett was born premature, weighing 4 lbs 1 oz. The family still had not heard from TennCare about their insurance. Emily and Beckett had to stay in the hospital for twelve days. Emily’s condition developed into eclampsia and lasted for another two months while she continued taking medication for seizures and blood pressure. The bills for her hospital stay and ongoing medical complications added up, burdening a young family trying to make a life for themselves.
Still without word from TennCare, Emily called TJC for help. We guided Emily through a successful appeal process. “Y’all were able to give me the strength and courage to pursue this, because I would have given up,” she said. “I didn’t know what was out there, I didn’t know there was someone who could help us. And once I found that out I just knew that we had to keep going and pursuing it.”
Chris switched back to his old job, enabling the family to have his employee insurance once again. Months after her application, the family finally received coverage for the medical expenses incurred while they were waiting on TennCare.
At Beckett’s six-month checkup he was in 4th percentile in weight and 5th percentile in height. He is still small and has eye problems, as well as developmental delays due to his premature birth. Emily has continued to advocate for her son, contacting a program about healthier beginnings for babies and getting him evaluated for physical and occupational therapies. She says, “I want to get him to where he is not any different from any other baby, because to me he’s not. I can’t wait to see the kind of person he is going to be. After everything that he has been through, he’s a fighter. I’m grateful TJC was there to fight with us.”
Emily continues, “The most important reason we fought for our son is because he is too small to— he had no voice.” Emily not only wanted to advocate for her son, but for other children in his situation. She was featured on the cover of the Tennessean in order to bring light to the health care situation in Tennessee and make a positive change for other families dealing with the same issues.
Beckett is now eight months old and just said his first word: “Momma.” TJC is honored to call Emily a Mother of the Year for her tireless advocacy and passionate dedication to her son.
Photography credit: Mark Mosrie
Callie Briley is a wife and mother to three beautiful children: Hunter, Taylor and Lizzie. In July of 2014 Callie and her husband Justin welcomed their youngest daughter, Lizzie, into the world.
When her other children came to see the new baby in the hospital, Taylor was drinking constantly and complaining of headaches; she did not seem like herself. They had been noticing that Taylor was losing weight, but assumed it was the result of a growth spurt. Five days later Taylor woke up with a severe headache and vomiting. By that night she was extremely lethargic, and could barely breathe. Callie rushed her to the E.R. where the doctors said she was most likely in diabetic ketoacidosis. Taylor was all but unresponsive.
The family spent several nights in the PICU. Diabetic ketoacidosis left untreated leads to swelling on the brain, but luckily, Taylor did not suffer any brain damage. Taylor was, in fact, diagnosed with diabetes. Callie did not know much about diabetes at the time, but she has learned. She and Justin took several classes to learn how to properly care for Taylor: how to check her sugar, count carbs, give appropriate amounts of insulin, and treat extreme lows.
They left the hospital with a 5-year-old about to start Kindergarten, a newborn, and a newly diagnosed 2-year-old type 1 diabetic. Callie says “By October we really thought we were getting into the swing of things and coming around to accept that our daughter’s life would not necessarily be as we had always pictured for her.” Then on October 11th, only three months after Taylor’s diagnosis, Hunter began showing the same symptoms. They were headed to the hospital once again. Hunter was diagnosed type 1 diabetic as well. This time they caught it early, and he didn’t end up in a life threatening situation like his sister.
Hunter and Taylor take at the minimum 4 injections a day and prick their finger to check their sugar upwards of 12 times a day. Callie has to check their sugar several times during the night to prevent a severe low which can lead to seizures, coma or death.
Since their diagnosis, Callie has discovered that there is almost no help from the government or other sources for children with type 1 diabetes. It is reported that a child with type 1 diabetes will have an average healthcare cost of $9,300 a year – which is multiplied by two for the Briley family. Callie says, “The government does not see this disease as a disability and therefore they do not offer help. Even if you have multiple children. However we serve an amazing God and somehow every month we have been able to get their supplies. Even if that means digging in the couch for pennies.”
Ten months into their journey, Callie has decided to homeschool Hunter. He is finishing up his kindergarten year and headed into 1st grade. Hunter has a love for baseball and X-Box. Taylor is a princess, and she will tell you as much. She loves The Little Mermaid and playing mommy with her baby dolls. She tells everyone she’s saving her money in her piggy bank to go to Disney World and meet Ariel one day. The family recently got a diabetic alert dog, named Alice.
Hunter and Taylor both have learned how to check their own sugar. They can’t yet give themselves injections, but she knows when the time comes they will do it, and do it with confidence. They are intelligent well beyond their years. Callie says, “Hunter and Taylor both can tell you as much about diabetes as I can. They amaze me every day at their strength and determination to lead a happy and healthy life. These children face obstacles most never imagine facing. But they do it with a smile on their face and joy in their hearts.”
TJC is honored to name Callie Briley a Community Mother of the Year for her incredible dedication to making sure her children receive the care they need.
Bonita was raised in rural West Tennessee. She is a retired teacher, mother of two children, the wife of an army veteran who is disabled, and the only child of a WWII army veteran who is also disabled. Most notably, Bonita is a fierce advocate for equal access to medically necessary services.
Bonita says, “My father raised me to stand up for the things that make our country and community stronger. Dad made sure I understood the value of hard work.” Bonita did her share of it on their small Tennessee farm: “I picked cotton for three cents a pound and knew how to throw a fifty pound bale of hay to stack five high on the back of a farm truck. And so I grew up believing that if I worked hard every day and had faith in myself, I could make my life better and improve the lives of others by doing so. But always just one step away from financial ruin because my family had no health insurance, I didn’t know until later just how close I always walked to that reality.”
Growing up an only child, Bonita learned from her mother the value of humility and determination. Bonita’s mother was raised in a large family during the Great Depression. Bonita credits her mother for knowing the difference between wants and needs, and for being grateful for what you have. Bonita’s mother joined the workforce to help support her family. She worked a factory job, and when she could not afford the continuing cost of childcare, she became a beautician. She opened a beauty shop attached to their home. Some of Bonita’s fondest childhood memories were sitting in her mother’s clients’ laps as her mother styled and cut hair.
After her father’s death, Bonita’s mother, Dorothy, was diagnosed with dementia. For a few years, Dorothy was able to continue living on her own. But by 2009, Dorothy moved into an assisted living facility. By 2014, her level of care needs increased dramatically. Bonita contacted the Area Agency on Aging and Disability to review Dorothy for eligibility for long-term care, called the CHIOCES program. Dorothy’s medical evaluation was approved for nursing home care, and she moved to a nearby nursing home.
At the same time Dorothy’s medical eligibility was to be evaluated, TennCare was looking at whether or not she was financially eligible for long-term care. Months passed without word from the state on her eligibility. Bonita did everything she could, but with the state not responding, she knew she needed assistance. By the time she found TJC, Bonita’s mother faced possible eviction from the nursing home. TJC intervened and forced the state to rule on Dorothy’s eligibility. In the end, Bonita’s fierce love and advocate instincts prevailed. Her mother qualified both medically and financially for the nursing home, where she lived with the level of medical care she needed until she quietly passed away in March.
Bonita made sure her mother was comfortable and received the nursing home care she needed. Even after her mother’s death, Bonita continues to advocate for others who cannot advocate for themselves. “It is my hope that we all can learn something from my struggles with our health care system. Without knowledge of its flaws, we cannot improve it. Without compassion in our hearts, we cannot mend it. Without a voice, those who suffer in silence will never be heard. That voice may as well be mine.” For her unwavering strength in getting her mother the care she needed, TJC is honored to name Bonita a Daughter of the Year.
Photography credit: Lenny Burnett
Michele Fardan lived with her two adult daughters and two young grandchildren in Antioch, Tennessee. She and her daughters worked, but their jobs did not always offer health insurance. Access to health care was never easy, but it was especially challenging for Michele’s 37-year-old daughter Monika, who did not have children and was therefore ineligible for TennCare. Monika did not make enough money to pay for health insurance, even on the new Marketplace. Without any affordable option for health insurance, she was vulnerable to what happened next: a major medical disaster.
Last summer Monika broke her toe. She went to the ER, and doctors diagnosed the fracture and provided a cast and special boot. The healing did not proceed well. But without health insurance, and with mounting bills from the hospital visit, she was reluctant to seek help. She tried to tough it out on her own.
Eventually, however, she could no longer bear the pain. She went back to the hospital and was admitted almost immediately. She had developed clots in her foot that were impeding the healing. She was having trouble breathing. By the time doctors realized she had clots in her lungs, it was too late. Monika died in July at a local hospital.
Her family’s grief was consuming. They had lost a daughter, sister, and aunt. For many months, new medical bills arrived almost daily from the doctors and the hospital, further burdening the family. Still Michele remained strong. She was determined to keep her family well and together. Michele took her family to the St. Thomas Medical Mission last October, where members of the TJC staff helped her surviving daughter and two grandchildren enroll in TennCare.
Michele recently added a new role to her resume: she worked with TJC to become an articulate spokesperson for all 280,000 uninsured Tennesseans who would benefit from Governor Haslam’s Insure Tennessee plan. Fueled by her grief, she has learned to be comfortable in front of crowds, speaking with reporters and TV news crews, always in the service of those who— like her family— struggle with the vulnerability caused by lack of access to health care.
Last month a full time job opportunity turned up, and Michele jumped at the chance. She’ll be providing home care assistance for an individual with special needs. And by a small miracle, this job provides health insurance. Michele will have the security of health care coverage and the means to a healthy future—a future that will allow her to serve as matriarch of a family that has been down to a valley of terrible grief, and yet, with Michele’s love and guidance, is finding its way up again. TJC is honored to call Michele a Mother of the year for her endless commitment to her family, and all those uninsured throughout Tennessee.
Photography credit: Sally Bebawy
Tracy Foster, a former nursing assistant, is a 40-year-old mother of two. She worked hard from the age of fifteen and raised her children on her own. She was born with a hereditary heart disease, and her health worsened when she was diagnosed with bladder cancer in 2012.
Doctors found a mass in her bladder that was growing rapidly. At that time she still had health coverage from TennCare, so she was able to get treatment and return to work. She underwent chemotherapy and surgery to remove the mass, but the doctors warned that her cancer could return.
During her recovery, Tracy lost her TennCare. Her younger daughter became an adult, forcing Tracy off the program because she no longer had a minor child. Tracy began to depend on a free clinic for routine care and the ER when things grew more serious. Tracy continued to work as a nursing assistant until her declining health made it impossible to continue. She says, “I’ve worked since I was 15. I’ve paid my taxes. And I can’t get help.” She continues, “I’m afraid by the time something happens is it going to be too late. And it’s scary.”
Last year during an ER visit, doctors found new lesions in her bladder, blood in her urine, and swollen lymph nodes. Fearing that the cancer had returned, they advised her to see an oncologist. Without insurance, Tracy can’t afford a trip to the oncologist that she desperately needs. Tracy lives in constant pain, using Tylenol and a heating pad for some measure of comfort. Her grown daughter, Samantha, works full time as a nursing assistant, like her mother once did. She has ambitions to become a registered nurse, but she has given up her dreams of college for now to stay close to her mother and to support her emotionally and financially.
When Governor Haslam announced his Insure Tennessee plan in December, Tracy thought the plan might provide just the kind of health care help she needed. She and Samantha immediately began to research the program. They came across the Tennessee Justice Center and reached out for assistance. TJC’s senior client advocate contacted her immediately. The first step was to make sure Tracy was not eligible for any existing health care programs. TennCare covers people with cancer, but only certain kinds of cancer. Bladder cancer is not on that list. Without a steady income, she could not afford to buy health insurance on her own. TJC provided her with information about local low cost providers. TJC continues to advocate for Tracy and seek out doctors that are willing to help.
Tracy is now a powerful voice for the uninsured in Tennessee. At events supporting the passage of Insure Tennessee, Tracy advocates for herself and others who are uninsured. In spite of her discomfort and fear, she traveled the long miles from East Tennessee to Nashville during the legislative session, joining 800 other concerned citizens to show up and speak out. When legislators voted No, Tracy wept. Her grief-stricken face soon became the iconic image on the front page of the Tennessean. But she immediately pulled herself together. She walked out of the Senate committee meeting into a swarm of news reporters and photographers and spoke authentically and passionately. Tracy is a true warrior.
Tracy said, “Before this I had never spoken in public, and I’m very shy. But I have to stand up for myself and take my life back that has been taken from me. I’ve lost almost everything in my life. I really appreciate everything [TJC] is doing, and I truly love y’all and y’all are like family to me now.” For her incredible spirit and advocacy, TJC is honored to name Tracy a Mother of the Year.
Photography credit: John St. Clair
On December 25, 1977 Nita received an unexpected Christmas present: her son Lee was born prematurely. When he began to show signs of developmental delays, doctors blamed his premature birth, but Nita suspected his delays were caused by something more. In Lee’s early childhood, doctors confirmed her fears; they diagnosed Lee with Duchenne Muscular Dystrophy—the most severe and progressive form of muscular dystrophy.
Lee, who loved playing outside with his friends, began having balance problems by age 2 ½. At age 7, he needed braces on his legs, and at age 8 he needed his first wheelchair. At the time Lee was diagnosed, most children born with Duchenne Dystrophy didn’t live past their teens. Lee celebrated his 37th birthday last year.
Nita first contacted the Tennessee Justice Center when Lee was 20 years old. She was concerned that Lee’s private duty nursing hours would be cut when he turned 21. TJC helped Nita file an appeal that enabled Lee to keep his nursing services, and has continued to advocate for the services Lee’s doctors order ever since. When his health plan cuts services or denies needed care, Nita doesn’t take “no” for an answer. TJC is honored stand by her side for every battle for the last 17 years.
Nita says, “TJC has been here, getting me educated to our rights, giving me hope, and showing that they care. They are angels. They’ve helped us throughout the years – with appeals to get Lee’s care, to information I needed in order to keep Lee’s care, and just the care they’ve shown when we’ve had to struggle with changes in TennCare policies.”
Lee is ventilator dependent. He can talk, but he cannot eat, dress himself, or move without assistance. With his nursing services he was able to attend Middle Tennessee State University. He graduated with a degree in journalism. Lee loves to write about sports, especially racing. Although Lee is now only able to move the pointer finger and thumb of his right hand, he continues to blog about his passion for sports.
Throughout all the difficulties, Nita has ensured that Lee gets the care he needs. Lee said of his mother, “She works five to six days a week. The whole TennCare battle we went through was really stressful. Every free minute she had she spent talking to nurses and TennCare. No matter how busy she was or what she had going on she always made sure she was staying on top of it. A lot of people could have given up, but she stayed with it. She made sure that I got what I needed.”
Lee is Nita’s youngest child. His older brothers, Michael and Wayne, now live with him. The whole family gets together for dinner once a week, followed by a viewing of Lee’s favorite TV show, The Good Wife. Even though Lee can’t eat the food his brother cooks, he still sits at the table just so he can be with his family. Lee has a great sense of humor and loves playing games with the family, especially Trivia and 20 Questions.
Nita believes children with disabilities should be allowed to remain at home with their families when possible. She says, “Children deserve to be cared for in their own home. They deserve hands-on care when it’s needed and shouldn’t have to wait to be on someone’s time slot to get it.” For her tireless dedication to making sure the needs of her son are met, TJC is honored to call Nita a Mother of the Year.
Photography credit: Lenny Burnett
Until five years ago, Lorna Hensley used to watch mothers with big families in the grocery store and wonder how they did it. “I remember those mothers coming in with a gaggle of children,” she wrote in a speech for her local Court Appointed Special Advocate (CASA) organization. “Their hair looked like some sad tangled tumbleweed, and they usually had a few Cheerios stuck in various and strange places on their bodies…I always wondered how in the world it felt to stand in [their] shoes.” Lorna didn’t know it then, but she was about to become one those moms herself.
Lorna, who was then working as a nurse, and her husband Ronnie, a warehouse manager, had three young daughters of their own: Ireland, Hannah, and Cloe. But in March of 2010, with the help of CASA, they adopted Ronnie’s brother’s three children. Elizabeth, Rebecca, and baby Colton had been abused and neglected. Before long, Rebecca and Colton began to show developmental delays. “We were the only family capable of keeping the children from the foster care system,” Lorna wrote. “It was a big decision.” Lorna quit her job to care for the children, cutting the family’s income in half. Her daughters had to adjust to three new siblings in the house. But with time, the family grew stronger. “They say God never gives us more than we can handle,” Lorna wrote. “He, in all his wisdom, knew what our family lacked when we could not even conceive it.”
In the spring of 2014, a change in Ronnie’s job moved the family from Virginia to Bluff City, Tennessee. In Virginia, they had depended on the state Medicaid program to provide healthcare to the family, especially for Rebecca, whose developmental delays required speech and behavioral therapy. In June, the family applied for TennCare. But like thousands of families across Tennessee, they got caught in a complicated web of red tape and miscommunication. Months went by without a decision from TennCare. “We were just lost,” Lorna said. “We were getting so many different phone numbers, but nobody would help us.” Meanwhile, the family was paying out of pocket for medical expenses. Rebecca, who has autism, was unable to continue her speech therapy and social skills therapy. Ronnie developed multiple allergic reactions and had to be rushed to the hospital. He eventually learned he had an autoimmune disorder, and had to go on medical leave from work.
Then, in September, a social worker at Wellmont Holston Valley Medical Center in Kingsport referred the family to TJC. Armed with knowledge of the complex law that protected the kids, and guaranteed that the state decide on their coverage, TJC advocated for the children and got them coverage quickly.
“When we got ahold of TJC, the ball started rolling,” Lorna said. “Within two or three weeks, I was able to take Rebecca to the doctor.” Rebecca resumed her therapy, and even enrolled in a new therapy program at a local college. Ronnie was able to get his autoimmune condition treated, and soon returned to work. “You listened, and you cared,” Lorna said of TJC’s advocates. “You all had compassion.”
Five years after her family nearly doubled in size, Lorna is still a tireless advocate for her children. And she’s embraced the frazzled mom look. “I can handle the Cheerios and the frazzled hair,” she wrote in her speech for CASA. “They are just the signs of my joy.” For her tireless dedication to her six children, TJC celebrates Lorna, one of our Mothers of the Year.
Photography credit: Mark Mosrie
Riza Ritter has faced many struggles in getting appropriate care for her daughter Lauren since her birth 15 years ago. Lauren was born in February of 2000 with a rare chromosomal defect. At the time of her birth she was one of only 12 cases in the country. She was born with an esophagus that did not open to her stomach. Among other handicaps, she couldn’t swallow anything, including saliva. She has had multiple surgeries to correct that problem. She probably will always need to be fed through a feeding tube.
Riza says, “I can’t imagine not having access to health care—Lauren has so many medical needs. Everybody should be able to access the care they need.”
Lauren cannot stand or walk. She can be propped in a wheelchair. She can say a few words, such as “drive” and “bye-bye.” And she can communicate a few more words through sign language, though signing is difficult for her as she does not have much flexibility in her fingers.
Caring for a child with Lauren’s needs often means near-constant battle with health care providers. Riza says that the Tennessee Justice Center has been her rock: “They’ve been there for me every time I had a problem with TennCare enrollment or getting medical services. I think I’ve needed their assistance almost every year since Lauren was born. Lauren needs private duty nursing, and TJC has helped me get her the care she needs. They’ve helped me with enrollment and with getting Lauren’s medical services – especially her private duty nursing services.”
Despite Lauren’s disabilities, there are many activities she enjoys. She likes riding in the car; the longer the ride, the better. She loves when her mother reads books to her and lets her watch SpongeBob. She has an old iPod that she considers her phone, and she likes pushing the buttons. She enjoys occupational therapy because it allows her to put beads on a string and work with shapes and balls. While she can’t eat or drink, she loves it when Riza uses a syringe or eye dropper to put liquids in her mouth. Sometimes, her mother will give her a taste of food by wiping it on her tongue.
The last time Lauren was evaluated for school, her age equivalent was between 12 and 15 months, though her mother thinks she may have now advanced to age 3. Riza’s goal is to help Lauren reach her full potential. For her dedication to never giving up and always making sure her daughter gets the health care sheneeds, TJC is honored to call Riza a Mother of the Year.
Photography credit: Janice Ledbetter
Luella Woods is a 54-year-old living in Memphis. Luella has both intellectual and physical disabilities. She has always relied on her loving family to keep her safe and healthy. After the deaths of her mother and a sister, who were her primary caregivers, Luella struggled to find a place to live that could meet her needs. Luella’s surviving sister, Mary, lives in another state and has health needs of her own, but that does not hinder her from fighting tenaciously for her sister’s well-being.
In a little over a year, Luella had cycled in and out of at least eight different nursing homes and hospitals. The nursing homes were not equipped for Luella’s intellectual disability, so she inevitably ended up back in a hospital for short-term treatment. The constant movement from place to place was extremely detrimental to Luella’s well being. In February 2014, Luella was again in a Memphis hospital, but they were pushing to discharge her with no place for her to go.
Mary, a former police officer, used her grit and knowledge to advocate for her sister. She had contacted two state programs that provide long-term care services for people with disabilities, and Luella was being evaluated for each. Unfortunately, Luella was caught in a fractured system that separates the health care options available for people with intellectual disabilities from those for people with physical disabilities. Each program said that Luella was better suited for the other one, leaving her with no option at all.
When Luella was turned down for these programs and was facing imminent release from the hospital, Mary called the Tennessee Justice Center for help. TJC worked with medical providers at the hospital and a state expert on disability to document Luella’s needs and try to get her the care she so desperately needed. TJC’s advocacy delayed the hospital discharge until Luella found an appropriate long-term placement.
Several weeks later, Luella was finally approved for placement in a specialized group home in Memphis for people with intellectual disabilities. The placement meant that Luella could finally get help, tailored to her unique situation, in the community rather than in an institution. Luella is thriving at her new home. TJC is proud to recognize Mary as a Sister of the Year, for her great love and devotion to her sister. Mary’s advocacy ensured that Luella was finally able to find safety and stability in her community.
Photography credit: Rasha Dowell
Vicki Burney is a busy woman: she is a mother of two, a grandmother of five, a wife of almost 30 years, a certified medical coder, the office supervisor at Vanderbilt University, a student at Bethel University, and the caretaker for her aunt, Tommie Lee.
Tommie is 88 years old and suffers from COPD, hypertension, arthritis, and severe mental health issues. Tommie is a lifelong resident of Tennessee. She worked cleaning houses until she was in her mid-seventies. Several years ago, Tommie’s husband of more than 40 years passed away, leaving Vicki as Tommie’s primary caretaker.
Tommie was staying at an assisted living facility, where, despite her busy schedule, Vicki would stop by to visit every Sunday after church in order to spend time with her aunt and to run errands so that her aunt had all she needed.
Eventually, Tommie was moved to a psychiatric hospital to undergo an evaluation, but she was not well enough to return to the assisted living facility when she was discharged. She was placed in a nursing home, but denied nursing home care through the TennCare CHOICES program.
CHOICES medical criteria is difficult to satisfy. This means Tommie couldn’t get coverage for her care, even though she was too sick to stay in assisted living and had no other options.
Vicki courageously advocated for her aunt at a CHOICES appeal hearing in November. Despite this effort, an administrative law judge denied the appeal. Unwilling to give up, Vicki contacted the Tennessee Justice Center. TJC helped Vicki ask for reconsideration of the administrative law judge’s order. Then, TJC found Ms. Lee a pro bono attorney to take her case to Chancery Court.
Even now, Vicki is still fighting to get CHOICES to provide the care her aunt’s life depends upon. She won’t stop fighting until Tommie Lee can live her final years with the dignity she deserves. For her amazing dedication to her aunt, TJC is proud to recognize Vicki as a Niece of the Year.
Photography by Toni Viola.
Jennifer is the single mother of two teenage boys, Justin and Dorien. In 2009 she lost her job and decided to go back to school to finish her undergraduate degree in order to help better the lives of her two sons. In 2012 Jennifer moved to Nashville to pursue a Masters Degree at Vanderbilt University.
On April 30, 2013 13-year-old Dorien was struck by a train. He was admitted to Vanderbilt PICU that same evening. Miraculously, he survived and was transferred out of Vanderbilt to the rehab facility at Scottish Rite Children’s Hospital in Atlanta, GA on June 10th.
He was there for three months and in that time made tremendous progress. “They said he wouldn’t live, wouldn’t open his eyes, would be a vegetable, arranged palliative care for him, they basically said he would be in a coma. By the end of July, we gave the doctors back his wheelchair because he didn’t need it anymore,” Jennifer said. “He had his 14th birthday at Scottish Rite, which is a birthday we didn’t think he would ever have, and now he is going to have many, many more.”
The doctors at Scottish Rite strongly supported his transfer to the Neurological Behavioral Unit at Cumberland Hospital in Virginia. There is precedent of TennCare network coverage at Cumberland. However, a TennCare doctor reviewed his case and vetoed Dorien’s transfer for further rehabilitation treatment. His mother and his current rehab facility doctors had to fight Dorien’s insurance company weekly to even get him permission to stay in rehab one more week. She stated, “That’s what this world is about, we are supposed to help each other. You are not supposed to care more about a dollar sign than a child’s life.”
Dorien was transferred to a facility in Murfressboro that did not have the proper resources to accommodate him. After a few weeks there he fell, necessitating emergency brain surgery and setting him back in his recovery process. Dorien desperately needed to be at a facility that could provide him with adequate resources for his neurological therapy.
Jennifer reached out to the Tennessee Justice Center in order to get Dorien the rehab he needed. TJC helped her file an appeal for service denial and referred her to Legal Aid to get the resources necessary to fight Dorien’s case. After a tough battle, Dorien is now at the Timber Ridge Ranch in Benton, AR receiving the neurological rehabilitation he needs to recover.
Although Jennifer cannot afford to pay for a hotel to stay with Dorien throughout his treatment, she reached out to a local church whose members have graciously opened their homes for her to stay in Arkansas the first week of therapy and for her to visit occasionally. The church members have offered to spend time with Dorien when Jennifer cannot be there.
He still has difficulty speaking, having just undergone throat reconstruction surgery, and receives 24/7 care. Dorien is learning to use a cell phone to keep in touch with his friends and brother from out of state through text messages, with the hope that working on his written communication will eventually lead to improvements in his oral communication as well.
Thanks to the vigilance of his mother, Dorien is now receiving the therapy he needs. She said, “I dare them to deny him one more time. He’s finally getting neurobehavioral attention. He can now walk and do school work at a fourth grade level. 6 months ago he was in a wheelchair and today he can play basketball. You have to fight tooth and nail the whole way, you have to know what to fight for, what to ask for, and how to play the game.” TJC is thrilled to call Jennifer a Mother of the Year for her endless dedication to her son.
Jennifer is truly an inspiration, remarking, “I’m happy for other people to know that you can do this. If I can do this, you can do this. You don’t need to settle for what they say. No matter what you have to help your child get better.”
Photography by Abby Malone
Evelyn Manley is a public health nurse in Dayton, Tennessee and the mother of two beautiful sons, Christian and Noah. Christian is four years old and has Down Syndrome. At age two, Christian was diagnosed with autism as well. As a result of his condition, Christian is unable to talk and sometimes acts out physically, which puts him in danger of hurting himself or others.
Because there are few people in Dayton qualified to treat Christian’s developmental delays, it is geographically and financially difficult for Evelyn to obtain adequate health care for her son. Despite this setback, Evelyn was able to secure doctor-ordered Applied Behavioral Analysis Therapy for Christian, beginning when he was three years old. The therapists come to Evelyn’s home and help Christian with activities in the school and the community. This therapy has been life-changing; when he was three, Christian hugged and kissed his mother for the first time.
In late 2013, the state cut Christian’s therapy because they said it was no longer necessary. His pediatrician recommended that Evelyn contact the Tennessee Justice Center. Determined to help Christian continue to develop emotionally and maintain his hard-earned progress, Evelyn reached out to TJC.
TJC secured a pro-bono attorney who, with TJC’s training and assistance, appealed and won Christian’s case. Evelyn said she was lucky to have a place to go for help. “TJC helped us during a really hard time,” she said. “They were great advocates for my son, and for our family.”
Evelyn told us, “When you have a child with special needs, you’ll probably always have to push a little bit to make sure those needs are met.” Evelyn gone beyond pushing that “little bit.” She has been a fearless and persistent advocate for her son. When asked what motivated her, she responded, “No one sees your child like you do. No one knows your child like you do.” It’s up to you to fight for your child, because no one will fight like a mother.”
TJC is honored to recognize Evelyn for her tireless efforts to ensure her son’s health care needs are met. Congratulations to this incredible 2014 Mother of the Year.
Photography by Mark Mosrie.
Patricia McCoy has cared for her grandson, Chad, since he was a baby. Now an adventurous young man, Chad is an award-winning swimmer who loves horses. Chad also has autism, is deaf, and has difficulty sleeping through the night due to hypoxia.
When Chad was a baby, Patricia took him to see a variety of specialists and doctors. Speech and language therapists worked with him to learn American Sign Language. Today, Chad is receptive with ASL, but not expressive, which means that he understands it but does not always sign unless prompted. Chad also received a cochlear implant to help him hear, but he struggles to use it for an entire day. As Chad has grown up, Patricia has managed his treatment and tried many medications. Some of the medications caused burdensome side effects, so she has worked to find the right balance.
Patricia has also fought hard to ensure that he gets the therapy he needs. Chad was receiving in-home care from TennCare so that he could complete his therapies in a familiar environment. The nurses helped alleviate the burden on Patricia and provided Chad with high-quality, consistent treatment. The nurses cared for Chad, and he bonded with them.
Unfortunately, in July 2013 Patricia was told that Chad’s in-home nurse hours would be cut from 104 hours per week, down to only 20 hours per week. Frustrated and scared, Patricia reached out to the Tennessee Justice Center for help with filing an appeal from the denial of care. Luckily, she received an expedited appeal and with the help of TJC was able to get Chad’s in-home hours reinstated.
Patricia has fought for Chad his whole life, out of pure love and dedication. “I love Chad more than anything; he is the sunshine of my life,” Patricia said. It is because of her perseverance and compassion that we are honoring her as one of the Mothers of the Year.
Photo credit: Mark Mosrie
Sangita Patel is a single mother of three teenage boys: Ashutosh, Ravi, and Akshay. Ravi and Akshay both have epilepsy, and Akshay also has cerebral palsy. Although he is 14 years old, his cerebral palsy has stalled much of his development.
Akshay loves to be outside. His mother and two brothers enjoy spending days walking in the park and sitting in the sunshine with Akshay. They also love to hear Akshay sing, as he has a passion for music. However, these days outside are rare gifts for the Patel family, as Sangita often must work extra hours to make ends meet.
On July 11, 2013, Sangita received notice that her children would lose all health insurance benefits in two weeks. Because of her children’s epilepsy and cerebral palsy, Sangita knew she needed to fight to keep her children on TennCare. “I am a single mom with children with special needs, and I try to work as much as I can,” she told TJC. “It was too hard for me to take care of my children and work without having any nursing services from TennCare.”
Sangita struggled for months, trying to reinstate her children’s TennCare. One day, she met with a counselor from Vanderbilt who suggested that she contact the Tennessee Justice Center. She called TJC and spoke with a client advocate who was able to help her keep her children insured. TennCare had incorrectly believed that Sangita received insurance from her employer. TJC helped Sangita prove that she was not receiving any insurance and that she was eligible for TennCare coverage. “Without TJC all I heard was ‘no.’ We got our coverage back and I am so thankful and appreciative,” she said.
Thankfully, Sangita’s children got their coverage back just in time. In December 2013 Akshay began having hundreds of seizures a day. They went to the hospital and the doctors tried various medications to control the seizures, but they couldn’t stop it. The only option left was brain surgery, which wouldn’t have been possible without insurance. Sangita said, “Thanks to TJC getting us TennCare, he is here. If they hadn’t helped me stay on TennCare, he wouldn’t be alive right now.”
Akshay wasn’t able to walk after therapy, but he continues to improve and his seizures are less frequent. Sangita is in awe of her son’s strength, noting that she wouldn’t have been able to survive what he has been through.
Sangita continues to work hard to provide for her sons. TJC is proud to honor Sangita as a Mother of the Year for her dedication to her sons and her ongoing, unrelenting efforts to ensure that her sons have the opportunity to thrive.
Photography by Liz Todaro.
Knoxville resident Julie Drouhard is an avid reader and gardener. She is also a loving mother of six who has shown tremendous dedication and courage in advocating for her children’s well-being.
In 2012, Julie’s son Joey needed treatment when he began displaying violent behaviors. Joey, now nineteen, was born with autism and intellectual disabilities. Joey is a caring and vibrant young man who enjoys playing basketball—he has a great jump shot. He also loves listening to music, especially the Beatles and Bruce Springsteen.
The violent behaviors were unusual for Joey. Staying at home was no longer safe for Joey or his family, and Julie knew that he needed comprehensive treatment. Julie recalls, “I knew that my son was not well; he was not acting like the real Joey anymore. I was determined to fight to help him get the care he needed. All I wanted was to have my son back.”
Joey’s doctors said that Laurel Heights, a residential treatment center in Atlanta, was the best place for Joey to get the help he needed. Unfortunately, his TennCare HMO said that he did not need that treatment. Joey could not wait for the care, so his parents paid the expensive fees to have Joey treated while they sorted out the insurance issues. Knowing that their resources would not last forever, Joey’s mother, Julie, immediately began advocating for her child. She filed an emergency TennCare appeal and called the Tennessee Justice Center for help.
Since they were paying privately for his treatment, Joey’s appeal had to be decided quickly. There was not enough time to find a pro bono attorney in Julie’s area to help them with the hearing. TJC staff helped Julie prepare for Joey’s hearing, telling her what to expect, how to gather medical evidence of Joey’s need for the treatment, and how to share that evidence with the judge. Julie is not a lawyer and had never been part of a legal proceeding like this before. She says the Tennessee Justice Center’s help in preparing for her hearing was essential.
At the hearing, Julie was nervous but absolutely committed to fighting for Joey. She represented her son with amazing courage. After hearing about Joey’s condition and testimony from Joey’s doctors and his mother, his TennCare HMO agreed that Joey needed residential treatment. Julie credits her support system for her success at the hearing—her husband, Joey’s case manager, his providers, staff at Laurel Heights, and the Tennessee Justice Center.
Julie’s courage and dedication to her son were clearly extraordinary. Because of her advocacy, Joey was able to get the residential treatment he needs and now he is back home with his family. For her amazing courage and commitment to her son, TJC is delighted to recognize Julie Drouhard as a Mother of the Year.
Photo credit: Mark Mosrie
With a household of five children of her own, no one would accuse Jessica Hacker of keeping an empty house. But the Johnson City native found room in her heart and home for one more child in 2003 when she began to foster 5-year-old Jaylin, a girl who desperately needed the love and affection only a mother can give.
At that time, Jaylin weighed only 22 pounds due to severe neglect she suffered before coming to Jessica’s home. Because of her early neglect and physical abuse, Jaylin had developed Reactive Attachment Disorder and Oppositional Defiant Disorder, conditions that cause severe behavioral problems and resistance to authority figures. But Jessica, who was in foster care herself, believes that every child, without exception, deserves the deep and unconditional love of a family. In 2005, she adopted Jaylin.
Jessica said that she felt that no one advocated for her as a small child, and she would not allow the same to happen to Jaylin. “I know what it’s like to be voiceless,” she said. “I want all children to know that they have a voice, and that they are loved.”
Now a single mother, Jessica has worked tirelessly to provide and care for her six children. As Jaylin has grown up, her mother has served as a dedicated advocate for her daughter’s special health needs, ensuring Jaylin gets the care she needs to grow and develop to her fullest potential. When Jaylin was in foster care, there were several support services in place, but after Jaylin’s adoption, Jessica had to navigate the complex mental health care system on her own, seeking out agencies that could provide the specialized mental health services that her daughter desperately needed.
In April 2011, 12-year-old Jaylin was hospitalized for psychiatric evaluation and monitoring. It was her twelfth hospitalization in just two years. Jessica thought Jaylin’s needs would be best served by continued treatment at a residential treatment center, however, TennCare denied the care. Without proper treatment, Jaylin would be released and returned home. Jessica believed that returning home at that point would have been detrimental to Jaylin’s health and safety, as well as that of her other children.
“The biggest problem I faced when they were releasing her is that my options were to put my other children in danger, or put Jaylin in foster care,” Jessica said. Neither was a feasible option.
In December, after filing an appeal to continue Jaylin’s treatment, Jessica reached out to the Tennessee Justice Center for help. Her daughter’s therapist said that she felt Jaylin could no longer be at home safely. Jaylin was able to continue to receive the care she needed while her mom prepared for the hearing.
A hearing was finally held in March, and TJC helped Jessica prepare. Despite the stress and anxiety that comes with being in a legal proceeding, Jessica was a brave and compelling advocate for her daughter.
In May 2012, Jessica received a letter from TennCare stating that she had won her appeal and Jaylin could continue receiving the care she needed. Reflecting back on the appeal, Jessica said, “I couldn’t have done it without TJC. Their help gave me the time we needed to get her stable so she could come home.”
As a result of this continued treatment, Jaylin has not had a violent outburst in nearly a year and has since been able to return home, where she continues to receive out-patient services. Now 14, Jaylin can focus on just being a teenager and enjoying her interests, such as being outdoors, going downtown, and playing basketball. She is even training to run track for the Special Olympics.
Jessica showed incredible courage and tenacity in her fight for Jaylin’s care, and her advocacy continues. Jessica believes that adoptive parents of children with special health care needs lack important support systems that would help them provide appropriate services and treatments for their children. “There are many kids every year who are adopted by families who love them dearly. There has to be a solution for them,” she said.
Because of her compassion, advocacy, and dedication, we are honored to name Jessica as one of our 2013 Mothers of the Year.
Photo credit: Mark Mosrie
Angie Quinn-Clark is many things: an active duty solider stationed in Fort Campbell, KY, a dedicated wife, an amazing mother, and a tireless advocate. Angie lives in Clarksville with her husband, Curtis Clark, a retired soldier with more than twenty years of experience, and their four children- Cathy, Brianna, Curtis Jr., and Tamorra.
The youngest of their children is 14-year-old Tamorra. Tamorra loves listening to music and the feel of the wind blowing on her face when she swings. Angie says that Tamorra was ecstatic when she was able to visit Disney World a few months ago. One of Tamorra’s most memorable moments while visiting was the ceremonial Disney Parade. Tamorra made sounds of joy and sang along as the characters proceeded down the street. Tamorra was also captivated by the light shows, her eyes lighting up with excitement and wonder.
Unlike many other children Tamorra’s age, her history is marked with a long list of medical needs. Tamorra is a quadriplegic with severe Cerebral Palsy, which is exacerbated by epileptic seizures. Tamorra was diagnosed with Cerebral Palsy at three months of age. She requires a large amount of attentive care because she cannot speak, has to be fed through a G-tube every four hours, receives numerous medications, and attends a variety of therapies to ensure that she functions to her greatest ability. Most importantly, Tamorra needs someone to be her voice at all times to acknowledge her pain, discomfort, wants and needs.
Providing care for Tamorra, as well as their four other children, can be overwhelming. Both Angie and Curtis have to work so that they can make sure that the family is taken care of, and to ensure that they can receive the health care benefits relied upon by their children, especially Tamorra. Considering the daily cost of living, food, gas, activities, and the costs of caring for a child with special health care needs, having a two-income household is a necessity.
Because both parents have to work to meet the family’s needs, their income is too high for TennCare. That means that there is little relief, even with private insurance, from the medical expenses that are incurred in caring for Tamorra. As a result of not having the type of support and services they could get if they had TennCare, the family has made many sacrifices, financially, emotionally and otherwise, so that Angie and Curtis can provide a complete and comfortable life for Tamorra and a normal life for their other children.
Many states have a program that provides financial and medical relief for families like Tamorra’s. The Katie Beckett waiver allows children with special health care needs to receive TennCare, which gives much needed care and support at home, regardless of the family’s income. Twenty-two states have the Katie Beckett waiver, but Tennessee does not. For Tamorra, the Katie Beckett Wavier would allow her to receive the vital care she needs at home, while alleviating some of the financial and emotional burdens that fall on the family. Angie remains hopeful that one day she will see the Katie Beckett waiver in Tennessee, so Tamorra and 255,692 other children with special health care needs in the state can get the care they desperately need.
For now, despite these odds, they are making it work. Angie not only ensures that her family is taken care of, but she also gives extraordinary care, compassion, and love to Tamorra, the type of care that only a mom can give. Angie and Tamorra’s bond is so strong that when Angie is out of town for work, the family has to place a recording of Angie’s voice in her daughter’s room to comfort her.
Like most parents, Angie has dreams and hopes for Tamorra. Angie dreams for Tamorra to be as comfortable and happy as possible, and to thrive. Angie has a dream of one day opening a child care center that provides occupational and physical therapy to children with special health care needs. She says, “There are so many children that get looked over and forgotten. I would like to change that.”
Because of Angie’s dedication and love for Tamorra, and because of her advocacy on behalf of children across Tennessee with special health care needs, we are excited to be able to honor her as a 2013 Community Mom of the Year.
Eli Shannon is a loving and vibrant ten-year-old. He likes reading, drawing pictures, and playing in the park near his home in Smyrna. When Eli was two, he was diagnosed with autism. Because of his condition, he sometimes displays difficult or harmful behaviors, like gritting his teeth, trying to leave without permission, or head-butting others. His single father, Wilson, not only works two jobs to support Eli and his three siblings, but he has also been a tireless advocate to help Eli get the treatment he needs.
Eli gets a treatment called Applied Behavioral Analysis (ABA) therapy, which helps him deal with his problem behaviors. ABA therapy really helped Eli, and for a period of time, Eli’s therapist was able to gradually decrease the amount of ABA Eli received. However, last year Eli faced many significant changes in his home life, which caused his problem behaviors to increase. In response to these increases, Eli’s ABA therapist suggested that Eli would benefit from additional ABA hours to help him deal with the changes at home. ABA is designed to evaluate and help alleviate environmental factors like those that were affecting Eli.
In spite of his worsening condition, Eli’s TennCare HMO said that Eli did not need the additional hours. Eli’s ABA provider filed a TennCare appeal for him and called the Tennessee Justice Center for help. After reviewing the case, TJC decided to advocate for Eli and represent him at a hearing about his ABA therapy in December. Wilson courageously talked about Eli’s needs and his dangerous behaviors in front of the court.
Unfortunately, an administrative law judge ruled in January that Eli did not need the services, but Wilson and TJC won’t give up fighting for Eli and are continuing to pursue his appeal.
As a TJC Father of the Year, we recognize Wilson’s tenacity and willingness to go the extra mile for his kids. Wilson says it was a nerve-wracking experience to go to a hearing and fight for Eli. “It is hard to think that someone else has control of my child’s ability to get care he needs. It’s a struggle, but it’s worth it for Eli.”
Wilson believes that Eli is worth fighting for and that every child with autism should have access to the health care he or she needs. TJC is proud to recognize Wilson Shannon as a Father of the Year.
Photo credit: Lindy Buss
At 17, Alisha was charismatic, outgoing, and vibrant. She was known to be helpful, kind, and a good friend. Work always called her first when they needed someone to fill in and friends always called her when they needed a ride. Alisha was looking forward to attending the University of Tennessee in Knoxville and becoming a pharmacist. However, in February 2010, two weeks before her 18th birthday, Alisha was in a severe car accident. Her car hydroplaned and landed upside down in the rain-swollen Stones River. Her car was trapped under water, causing her to go without oxygen for nearly an hour. The heroic efforts of several drivers and nearby residents flipped over the car and secured it in place until the ambulance could arrive.
During Alisha’s stay in the hospital, her mom, Angie Sterry, never gave up hope. Angie stayed in Alisha’s room in the MICU unit day and night to be near Alisha. In March 2010, Alisha was moved to the Shepherd Center’s Acute Brain Injury Center.
For the first few weeks, Angie did not leave her room except to shower and change clothes. Staff at the Shepherd Center trained Angie to be able to care for Alisha long term. Finally, after many months in the hospital and in treatment, Alisha was able to return home in July 2010.
Now 21, Alisha is more full of life and vibrancy than ever, but faces a lengthy and unknown recovery with continued therapies for the rest of her life. Because of the accident, Alisha’s lungs were damaged from multiple infections. Her heart rate, body temperature, breathing, blood pressure and medicines have to be monitored because of the anoxic brain injury she suffered. Alisha cannot talk, has difficulty swallowing, and is fed by a tube. Alisha is also confined to her bed or wheelchair. Miraculously, Alisha has full mental awareness of her surroundings and can communicate through texting. Angie says that Alisha sends her texts throughout the day telling her how much she loves her. They even have a game, and have for most of Alisha’s life, where they see who can tell the other “I love you the mostest” first in the morning.
Angie describes Alisha as “one of a kind” and “the most vibrant, vivacious, loving person she knows.” Alisha loves to shop, listen to music, and play with the two family dogs that protect and love her. Alisha recently celebrated her 21st birthday and when asked what gift she would like, she stated, “I want to walk again.” Though, Angie adds, Alisha has never once cried because she is confined to her wheelchair. She carries on with her head held high.
Because of Alisha’s medical needs and therapies, Alisha requires the help of private duty nurses and therapists. Her greatest advocate, however, is still her mom. Angie, a single mom, cares for Alisha day and night and works full-time in communications, which she has done for twenty years. Without the nursing hours that TennCare provides, Angie would not be able to work, which would leave both of their needs unmet.
When Alisha first returned home after her accident, Angie slept in a recliner beside Alisha’s bed at night because she requires suctioning and turning around the clock. She did this until nursing care was provided in the home.
Angie has literally devoted her life to Alisha’s care, saying, “Keeping her at home, keeping her alive has been my primary focus.” She adds, Alisha “is my life, my purpose, what I get up for, and what I work for.” Because Alisha requires total care, her nursing and the care Angie provides are her lifeline. Now that Alisha is 21, her eligibility status has changed and she faces possible cuts in her nursing care. If her nursing hours are cut, Alisha’s health will likely deteriorate. Angie has been working hard to ensure that Alisha maintains the care she needs to be able to stay at home safely.
Angela contacted the Tennessee Justice Center when she needed support continuing Alisha’s TennCare benefits and services past her 21st birthday. Angie said, “With the help of TJC, I can continue being a better advocate for my daughter. I don’t have to fight alone.” We are grateful for these kind words, but is hard to imagine how Angie could be a better advocate given the love, dedication, and support she provides for Alisha.
Angie’s hopes and dreams for Alisha are for her to grow and fulfill her greatest potential. Angie relies on her faith and prays that Alisha will go back to school one day and get her pharmacy degree. She knows that with Alisha’s personality, her compassion, and her story, she could be a powerful agent for change and good.
When Angie was told she was being honored as a Mother of the Year, she remarkably said, “I never dreamt of anything like this. I’m just a mom who loves her child.” She continued by saying “We’re grateful to so many people. I’ve had so many wonderful people that have helped me along the way.” Angie’s sweet humility, profound love, deep knowledge, and relentless advocacy are just a few reasons we are honored to call her a Mother of the Year. We are so proud to be able to stand with Alisha and Angie.
Angela is a life-long resident of Lebanon, and it is there that she shares a loving home with her husband Jeff, and her two wonderful step-sons, Aiden and Jonathan.
Jonathan is a quick-witted, energetic, and loving 9-year-old boy. He is quick to think of others first and has been a great brother to Aiden. Even though Jonathan is three years younger than Aiden, he has taken over the older brother role.
Jonathan’s brother, Aiden, is a typical 12-year-old in many ways. He is a joyful and mischievous boy who loves to watch basketball, listen to music, and watch the Mickey Mouse Clubhouse. Angela says he wakes every morning with a smile on his face.
However, unlike most children his age, Aiden is a medically fragile child with a high level of need. Aiden is non-verbal and suffers from brain damage after enduring multiple seizures and illnesses. Aiden cannot dress, feed, or bathe himself. He relies on a feeding tube and sixty hours per week of nursing. For Aiden, TennCare is a lifeline.
That lifeline was threatened when Aiden and Jonathan were cut from TennCare abruptly last May. The family filed a new application the next day, but the children were initially denied because of an error in counting resources. The family appealed and the mistake was corrected. Aiden and Jonathan were able to get TennCare through the Medically Needy Spend Down program, which uses a family’s recent medical bills to qualify children for TennCare.
Sadly, the family received a letter a few weeks later stating that they did not submit enough medical bills to meet Spend Down. Angela was confident that the family had submitted enough bills to qualify Aiden and Jonathan. Feeling frustrated and alone, she called TJC for help. Looking back, Angela notes that she called TJC because she “didn’t know where else to turn. Everywhere we looked, we reached a wall. TJC were the first people that were able to help.”
TJC wrote a letter to the State detailing the family’s situation and the medical expenses they had submitted. The State reviewed the letter and agreed that the family had submitted enough medical bills to qualify the children for TennCare. After a long, tough, and confusing battle, Aiden and Jonathan were approved for TennCare in December 2012, more than seven months after they should have been eligible.
Just like nearly every parent across the state, Angela dreams of Aiden and Jonathan growing up and succeeding. For Jonathan, she hopes he will go to college. For Aiden, the goals are a little different, though equally profound. She wants Aiden to be able to gain some independence in daily life skills, but most of all, she dreams of Aiden being able to walk. The medical care and treatment that Aiden and Jonathan can now access helps ensure that they will have the opportunity to grow, be healthy, and flourish to make those dreams a possibility.
When asked why Angela stood up to make sure her children receive the care they need, she says “How do you not? Because if we don’t fight and speak up for them, they don’t have a voice. If I don’t fight for their basic needs, who else is going to? They will slip through the cracks if I don’t fight for them.” Because of Angela’s courage and willingness to speak up and keep fighting for Aiden and Jonathan, we are proud to honor her as a 2013 TJC Mother of the Year.
Photo credit: Rasha Dowell
ANGELIKA AND WILLIE WILLIAMS
Clarksville residents Angelika and Ed “Willie” Williams did not hesitate when the need arose for them to provide care for their granddaughter, Justine.
Justine has always been an important part of Angelika and Willie’s lives. When Justine was 2, her parents separated. It was impossible for her mother to provide the care that Justine needed and work to provide for their needs on her own. So Angelika and Willie stepped in and adopted their beloved granddaughter. Angelika says, “Justine’s mother is a great woman, and she loves Justine very much. We stepped in to adopt Justine because we knew that we could make sure she was taken care of and had a good life. She had always been like one of our own children.”
Justine was born with a very rare condition called hydranencephaly, a condition in which the brain does not develop fully and instead is filled with fluid, creating pressure inside the skull. Generally, the life expectancy for children with hydranencephaly is under 1 year, but because of the love and care provided by her grandparents, 23-year-old Justine is able to share her love with her family and pets, whom she has always shown a special fondness for. As a child, Justine had a close bond with her cat, Mimi, who would always be by her side anytime she was in pain.
Because her condition can present a variety of symptoms, Angelika and Willie assist Justine with all activities of daily living, including coordinating her care and ensuring that she is safe.
In December 2012, the Williams learned that Justine’s TennCare insurance company was going to dramatically reduce her home health care services. These services are vital for Justine’s safety and ability to thrive. Angelika filed an appeal with TennCare and requested that Justine continue to receive her home health care during the appeal process. Just a few days later, she was told that Justine had neither the right to a hearing nor to the continuation of her care.
While tending to their own health issues and dealing with the stresses of the holiday season, the Williams did all they could to keep their granddaughter safe with the lower number of hours. They were confused, tired, and angry that Justine’s care was cut with no notice and no opportunity for a hearing. Angelika described it as one of the hardest time of their lives together, but their dedication to their granddaughter’s well-being never wavered.
Feeling overwhelmed and exhausted, the Williams sought help from the Tennessee Justice Center late in December. After reviewing their case, TJC found that Justine’s TennCare health maintenance organization (HMO) made a mistake. The HMO asserted that Justine was getting more care than allowed under TennCare policy, but they missed an exception that allowed her to receive an increased number of hours of care.
TJC wrote a letter to the State on her behalf, explaining the misunderstanding and requesting immediate reinstatement of Justine’s home health care. The State agreed that the HMO had made the mistake and her care was reinstated.
“We know what our granddaughter needs, and the Tennessee Justice Center had the legal knowledge to help her,” Angelika said. “We are so grateful for the TJC’s help.”
The Williams’ advocacy for Justine and their initiative to seek help saved the care that keeps her safe. The Williams steadfast care for their granddaughter is why they are named as one of our 2013 Honorees of the Year.
Photo credit: Sally Bebawy
Angelika and Willie Williams
Connie Winchester, along with her husband Jeff, lovingly opened their Dickson home in 2006 to care for their five grandchildren, ranging in age from 7- to 11-years-old. Connie wanted her grandchildren to have a vibrant childhood so in 2012, Connie and Jeff decided to adopt Krystina and her four siblings permanently into their home.
Gabriel, Cheyenne, Christian, Krystina, and Siera love playing outside on the Winchester’s property in the hills of rural middle Tennessee. They play basketball, swing, and play around their aunt’s creek on an adjacent property.
Connie knows that making sure they have a normal life and a happy childhood means making sure they have access to health care so that they can overcome shadows from their past and can grow and thrive. Two of the siblings had been diagnosed with Post Traumatic Stress Disorder as a result of their experiences before coming to the Winchester’s home so Connie has worked hard to ensure that her children get the care they need.
All of the children have health coverage through TennCare, however, TennCare does not always pay for the care they need. In 2010, their doctor ordered specialized behavioral health services so that the children could get the treatment they desperately needed. All but one of the children were denied the needed care, including Krystina.
Krystina is a sweet and creative 8-year-old. She enjoys stringing beads, coloring, and playing dress-up. Last year, Krystina was in severe need of a specialized behavioral therapy because of the intensity of her condition. Connie spent a great amount of time and effort getting this important treatment for Krystina. However, after the fourth denial, which occurred without proper notice, Connie was at her wit’s end.
Not knowing what to do, Connie called the Tennessee Justice Center. TJC explained to her that she has the right to receive a letter if TennCare was not going to pay for a healthcare service that Krystina needs. TJC alerted Krystina’s TennCare HMO about the mistake, and within a couple of weeks, Krystina began receiving the treatment she needed to thrive.
Connie is very thankful to TJC for the help she received, which ensured that Krystina could receive the necessary care. Today, Connie continues to advocate for the health care needs of all of her children so that they can grow and flourish, but Connie also says “I want all children to receive the emotional and mental health care that they need.”
Connie’s untiring advocacy enabled TJC to achieve a great result for Krystina. For Connie’s commitment and perseverance for her children, TJC is honored to award Connie as a 2013 TJC Mother of the Year.
Photo credit: Lori Israel
Deborah Balthrop lives in La Vergne with her son Brace and her daughter Cheyanne. Cheyanne is outgoing, happy, and helpful.
Early last year, Cheyanne became pregnant. Recognizing the importance of prenatal care to ensure Cheyanne and her baby remained healthy, Deborah took Cheyanne to the health department to apply for TennCare. The health department approved her for TennCare through presumptive eligibility, a way for uninsured pregnant women to get TennCare right away so that they can access prenatal care. To get full benefits, Cheyanne had to fill out an application for TennCare with the Department of Human Services (DHS). Deborah and Cheyanne quickly submitted her application to DHS.
Cheyanne should have been able to access prenatal care right away, but instead Cheyanne and Deborah were put through a gamut of frustrating obstacles, conflicting messages, delays, employee errors and bureaucratic indifference. Deborah spent countless hours and made dozens of phone calls trying to get Cheyanne a TennCare card, find a physician who would see Cheyanne, and find out whether Cheyanne was approved for long-term TennCare coverage.
Deborah made four separate requests to Cheyanne’s HMO for her TennCare card, waiting up to 14 days for the card to arrive between each request. The first three times, the order for the TennCare card was not made, not processed correctly due to employee error, or not processed at all. Numerous doctors told her they would not accept presumptive eligibility without the TennCare card- even doctors that Cheyanne’s HMO suggested would see her right away. Cheyanne got very sick and still couldn’t access a doctor. She had to go to the emergency room to get care. Ultimately, Cheyanne was denied service over 20 times because she was not given her TennCare card in a timely manner.
Deborah contacted TJC to help with the process. Deborah, having worked for an advocacy organization before, had some knowledge and familiarity of the process. However, even for her, the process was overwhelming. TJC helped Deborah file an appeal regarding the delays in getting a doctor’s appointment and getting approved for TennCare. TJC also contacted the state on Cheyanne’s behalf.
Through TJC’s advocacy and Deborah’s persistent efforts, Cheyanne’s application for TennCare was finally approved, and she was able to go to a doctor. However, it had taken so long for Cheyanne to receive her TennCare card that she was sixteen weeks pregnant when she was finally able to see an obstetrician and get the prenatal care that she and her child so desperately needed. Thankfully, Cheyanne’s baby, Kayleigh-Anne, was born in October 2011, healthy and beautiful.
Throughout the entire process, Deborah never gave up. She made phone calls every day, kept records of these phone conversations, submitted and resubmitted forms and documents, and kept applying pressure where it was needed. She recognized the importance of early prenatal care and she was not going to let her daughter and grandchild fall through the cracks. Deborah is not only a tireless advocate for her own children, but has also spoken out to ensure that other children around the state are given the care they need. She told her story in federal court to ensure that all pregnant women get the timely adequate prenatal care their health and their babies health depends upon. For Tennessee’s children, Deborah says she is “not asking for more than they deserve.” For her tenacity and persistence in the face of obstacles that would have discouraged many others, Deborah is recognized as a Mother of the Year.
Photo Credit: Sally Beba
Felicia Burk, who lives in Murfreesboro, is the adoptive mom of Heith, Scarlet, and Carr Burk. Felicia became Heith and Scarlet’s foster mom in 2006 when their mother was killed in a car accident, and later adopted them in 2008. She adopted Carr two years later. Felicia is tirelessly committed to ensuring that her children have access to the health care services they need to grow and function to their fullest capacity.
Scarlet is an energetic 10-year-old who loves shoes and getting her fingernails and toenails painted. She enjoys being close to people and likes to give her mom hugs. Felicia places special value on these hugs because when Scarlet was first adopted she did not like to be touched at all. Because of the health care services Felicia has fought for, Scarlet is now able to speak. For Scarlet, it is imperative that she continue receiving these services to further develop these skills.
Heith is now a talkative, loving, and ambitious 14-year-old boy. He loves being outside swinging or jumping on the trampoline, spending time with his family during their Friday movie nights or family dinners, and going to church. He loves to help out in the family’s garden or with chores around the house. Heith helps pull the weeds and pick the vegetables from the family’s garden. Through his persistence, as well as that of Felicia and several therapists, Heith is also now able to read. His goal is to one day have a job and a girlfriend and to live in his own condo. Heith is working to improve his social skills so he can achieve these goals. Felicia credits his therapies for the growth and advances he has made over the last few years.
Carr, now 8 years old, loves cars and playing the Nintendo Wii, especially his favorite game, Mario Kart. Carr is also very affectionate. Carr has many of the same difficulties and treatment needs as Heith and Scarlet but also has additional issues that require further diagnosis and treatment. Felicia is battling to get the appropriate services that Carr needs to develop to his fullest potential.
Scarlet, Heith, and Carr have all been diagnosed with autism as well as developmental disabilities, ADHD, bipolar disorder, and a sleep disorder. Additionally, Scarlet has impulse control disorder and a feeding disorder, Carr has attachment difficulties, and Heith suffers from post-traumatic stress disorder.
Felicia has encountered innumerable obstacles to getting her children the services they need to grow and function. She has had challenges in accessing speech therapy and behavior treatment services for each of her children, even after a judge ordered TennCare to provide it. She has also had trouble getting much needed in-home assistance services for Carr, faced drastic cuts in personal assistance services for Heith and Scarlet, and has had difficulty getting appropriate dental care for Scarlet and Carr. Felicia has also struggled with getting medications for each of the children.
Felicia believes it is important to advocate for children across Tennessee “because children with special needs have a lot more potential than parents, educators, and health care providers realize—if there is early diagnosis, treatment and the proper services.” Felicia frequently shares her family’s story to make the laws more just for Tennessee’s children. She adds, “If you have high standards and high goals set for you, you’re going to achieve great things.” With Felicia’s persistence, knowledge, and dedication, the hope is high for her children. Not having to fight for services that TennCare is supposed to provide will enable Felicia, and many others like her, to fully devote their time, love, and attention to their children.
Photo Credit: Whitney Newby
What would you do if you adopted a child, only to be told you would have to relinquish custody to get him the health care he needs? How would you feel if the state told you that they would not cover a necessary health service for your child, and then removed him from your custody when you had no other means to obtain that care for him? Many parents might feel like giving up, but not Cindy Furman.
Cindy and her husband Richard adopted their son Jacob at the age of five, along with his two younger siblings. Each of the three children has exceptional health care needs. Jacob, who suffered severe abuse and neglect in his birth home, has been diagnosed with a variety of mental and behavioral health disorders, along with global developmental delays. He has needed both outpatient treatment and intermittent inpatient treatment, and Cindy has fought relentlessly to defend Jacob’s right to get the care he needs.
Jacob was admitted to a mental health residential treatment facility (RTF) in early 2010, after his conditions caused him to behave dangerously toward his younger brother. Later that year, Cindy and Richard learned that TennCare would no longer pay for Jacob’s residential treatment. Jacob’s doctors recommended that he enter therapeutic foster care upon discharge, because they were concerned he might present a danger to himself and his siblings were he to return home. TennCare denied the request for therapeutic foster care.
This left Jacob with no apparent options; he would be leaving residential treatment, but was not yet ready to return home without being a threat to himself and his family. Though Cindy’s love and commitment to Jacob and her family was unflinching, she knew she could not bring Jacob home if it meant creating a dangerous environment for him or the other children.
Cindy refused to accept defeat. She filed an appeal requesting TennCare cover the care his doctors said he needed, but TennCare said that therapeutic foster care was not a service they would cover. The Department of Children’s Services (DCS) told Cindy and Richard that DCS could arrange for Jacob to receive therapeutic foster care without taking him into custody. In spite of this promise, DCS later told them that they would have to give up custody of Jacob in order for him to receive services. In late 2010, DCS took Jacob into state custody against his parents’ wishes. To this day, over a year later, DCS has still not found a therapeutic foster care placement for Jacob. He remained in residential treatment for another 8 months, before he was moved to a group home in Memphis, several hours from the Furman’s home.
Cindy was discouraged, but not defeated. She loves Jacob and she fought to build her family; she will continue to fight to get Jacob the care he needs and to keep her family intact. Cindy’s love and commitment to Jacob is powerful. She drives hundreds of miles to visit him, and continues to fight for him and his health care needs so that he can reach his potential . Cindy says, “I am the only person this boy trusts and talks to and if you take me away, you have shattered any hope of this child connecting or attaching to anyone.” Cindy and TJC believe no child should ever have to enter state custody in order to get health care services. Cindy has shown tireless dedication to her son Jacob and a steadfast willingness to speak out on behalf of children across Tennessee to ensure that all children get the health care that they need.
Photo Credit: Mark Mosrie
Jennifer Miller lives in Gallatin with her husband, and their son, Gary Jr. Gary is an adventurous and curious four-year-old boy who enjoys roller-skating, pizza, and cats. Gary also likes painting, playing tee-ball, and singing. He is independent and creative, and as Jennifer describes, a little bit mischievous. Loving and well-mannered, Gary never misses an opportunity to thank his family.
At the age of 3, Gary was diagnosed with autism spectrum disorder, hyperactivity, expressive receptive disorder, and developmental delay. One of the prominent characteristics of these conditions is an inability to communicate properly. On one occasion, Gary swallowed magnets and coins and was unable to tell his mom what happened. To treat Gary’s condition, his pediatrician ordered occupational therapy and speech therapy. These therapies are imperative for a child Gary’s age with autism and expressive receptive disorder.
Even though TennCare approved Gary for occupational and speech therapies, Jennifer found that quickly securing a provider for these services was not going to be easy. There were three possible therapy providers available in the area, but two of them had extensive waiting lists and the third would not accept Gary’s TennCare HMO. Jennifer knew that time spent on a therapy waiting list was time wasted. She knew that she would have to fight to get Gary the services he needed, when he needed them.
Jennifer requested to have Gary’s HMO changed so that he could start his therapies right away. Her request was denied by TennCare. Jennifer was not willing to take no for an answer, so she filed an emergency appeal. Her appeal was once again rejected because TennCare said Gary did not meet the hardship criteria necessary to switch HMOs at that time.
During this time, Gary’s HMO sent a letter indicating that they had secured an appointment for Gary at one provider. However, the HMO later told Jennifer that she had to take Gary to another provider. After an initial evaluation, the second provider never got back to Jennifer, and by that point the opening at the first provider had closed.
In the meantime, Gary was approved for Supplemental Security Income (SSI) due to his disability and was consequently moved to another TennCare HMO. A call by a TJC client advocate pushed up Gary’s enrollment date, just in time for Gary’s appointment with his doctor. However, during the time that the appeals were processed, the only provider who initially had an opening for occupational and speech therapies had filled that slot.
Jennifer quickly arranged for speech therapy at Vanderbilt until a permanent provider could be set up. Finally, a slot with the initial provider reopened in mid-2011, more than three months after she initially tried to get services. Gary was finally able to obtain speech and occupational therapy from a permanent provider. Currently, Gary is still not receiving the full amount of services that his doctor prescribed last year. Jennifer said Gary has made great progress since starting his therapies, but more therapy is needed for Gary to reach his full potential.
Jennifer, with help from TJC, had to fight to get Gary the services he needed to help him learn, communicate, and flourish. Through her tireless efforts and dedication to Gary’s health, she managed to piece together the services he needed. Jennifer has shown a great desire to not only advocate for her own child, but also on behalf of children across Tennessee. The time and energy Jennifer put into getting her son the services he needs to thrive and her tenacity in the face of denials and limitations demonstrate her commitment as a mother and advocate, and for that TJC honors her as a Mother of the Year.
Photo Credit: Jim Hagans
Though Barbara Moore has taken care of and provided for her grandsons– Justin, Andrew, and Nathan– their whole lives, she became their legal guardian in January 2012. The boys’ mother struggled with addiction and their father had moved out due to that addiction. Now that Barbara is their guardian and caretaker, their father, who lives in another county, is able to visit with them once a week.
The kids say that without their grandmother, whom they call “Nanna,” they would have been separated and placed in foster homes. Barbara takes them for regular checkups and gets them ready for school. She also spends time with each of them to ensure that they develop to their fullest potential and so that they know they are special and deeply loved.
Justin, who is the oldest at 11 years old, likes to play Xbox, football, and baseball. He also really likes people. Justin had a hard time coping with having to care for his younger brothers, but the stability of living with his grandmother has made a huge difference in Justin’s ability to deal with his feelings. Justin is continuing to progress and thrive with the help of services from Centerstone and the support of his grandmother and brothers.
Andrew, now a loving 8 year old, enjoys putting puzzles together. Andrew has been diagnosed with autism. When he came to live with Barbara, he could not talk, could not feed himself, was not potty-trained and was not able to attend school because he was disruptive. She was told he needed to be institutionalized, but she refused. Now, with therapy and Barbara’s care, Andrew is able to sign to communicate and has learned 55 words. He is attending school every day and no longer has to be restrained on the bus. Andrew is also able to tell Barbara that he loves her.
Nathan, the youngest brother, is 7 years old. Nathan loves Nintendo, football, and playing outside. Nathan has been diagnosed with ADHD. When he first came to live with Barbara, she said he would climb on furniture and bounce off the walls. However, counseling and medication have made a huge difference in Nathan’s behavior. He is now calm and able to concentrate, and he loves school.
Just recently, Barbara was able to purchase a home for herself and the boys. Her previous home needed repairs and was not an ideal environment for the three boys. She said buying the home may cause some financial strain, but it is worth it because the boys needed a home that is safe, clean, and in good condition. Barbara says her faith and knowing that she is giving these boys a second chance at a happy life keeps her going.
Barbara is learning that caring for three boys is not easy, especially when they have special needs and she has disabilities herself. Barbara says, “I am trying to make up for all the bad things they have gone through.” Barbara’s courage and love for her grandchildren is making a positive difference in their lives. She says, “All they need is love and understanding, and they have already responded and are doing better.” For Barbara’s commitment to ensuring Justin, Nathan, and Andrew have a safe and loving home, we are proud to recognize Barbara as a Community Mother of the Year.
Photo: Rasha Dowell
Ida Roberts lives in Kingsport with her husband Mitch and their three daughters, Amber, Sarai, and Elisabeth. Two of Ida’s daughters, Amber and Sarai, were born with severe disabilities, including mental retardation and autism. The oldest daughter, Amber, was born with her umbilical cord wrapped around her neck, which deprived Amber’s brain of oxygen. During Ida’s pregnancy with her second child, Sarai, there were concerns about the health and even the survival of the child. Sarai had a single umbilical artery, which greatly increases the risk of congenital and chromosomal defects, and Sarai was born with profound disabilities. Regardless of their health challenges, Ida’s profound love for her daughters is unabated.
Ida has courageously and persistently fought TennCare for years to ensure that her children are able to get the medical services that they desperately need. She has fought to get the medicines that their doctor has prescribed, to get the diapers and other equipment that Amber and Sarai need from suppliers, to find appropriate specialists for her children, and to keep their speech, occupational and physical therapies in place, which are imperative for Amber and Sarai’s development and growth. Ida has advocated relentlessly for her children to ensure they are given every opportunity to function well, develop, and reach their potential.
Amber, now age 16, has worked to develop basic communication skills. She loves going to school and is taking life skills courses there. She is learning to write her name and learning other daily living skills, such as how to brush her teeth and how to wash and dry dishes and clothes. Amber is also taking other steps to learn work skills she can use outside of her home. Three days a week she goes to Goodwill where she is learning how to fold, sort and place clothes in bins. Sometimes she also works at a grocery store where she is learning how to stock groceries. More than anything, Amber loves horses and enjoys looking at the horses in the pasture across from her home.
Sarai is now 11-years-old and is unable to read or write. Sarai is not able to talk except to sometimes say “momma.” When she is able to walk, Sarai sometimes goes from room to room with her hands out, looking up and smiling. “I think she plays with the angels,” says Ida. She loves music, especially nursery rhymes, and almost any kind of noise, including the sound of a lawnmower and squeaky toys. Sarai also really likes watching cars race.
For Ida, it is a full-time job ensuring that Amber and Sarai get the TennCare services they need. Ida has exhibited tireless effort and dedication to her children to ensure they are able to get the health care services they need to not only grow, but to also thrive. Ida says that “no child with or without a disability should have to go without needed medical services.” Ida adds that the “the challenge of fighting TennCare to get the medical services my children need and working to change the system are worth it so that another parent won’t have to fight quite as hard.” It is this mindset, and a deep commitment and love for her children, that drives Ida’s devoted desire to ensure her children get the health care they need.
Photo Credit: Mark Mosrie
Chelsey Spain, the daughter of Sheila Spain, is an energetic and outgoing fifteen-year-old girl from rural West Tennessee. Chelsey was born with a malformed heart, suffered four strokes at the age of three, and has seven heart defects. After eleven years of therapy, through Chelsey’s hard work and Sheila’s commitment to her daughter, Chelsey has been able to make great progress.
Sheila’s hope for Chelsey is that she will be able to achieve independence, and one of the tools that Chelsey needs to achieve this is a specific kind of wheelchair, a “stander,” which would allow Chelsey to stand. This type of wheelchair would enable her to do everyday activities like get to the top shelf of the refrigerator to pick out the snack she wants or pick out her clothes for school. The stander would also strengthen Chelsey’s physical condition because standing helps her leg muscles develop and improves her circulation, which helps prevent blood clots.
In 2006, TennCare denied this type of wheelchair for Chelsey. Not willing to give up, Sheila appealed the denial and won at her hearing. However, the judge’s favorable decision was overturned by TennCare. Eventually the medical equipment provider donated the features to Chelsey that TennCare had denied, which allowed her to have the option of standing.
After five years, Chelsey outgrew her wheelchair and needed a larger one. Despite a doctor’s order, TennCare would only pay for a wheelchair with a basic stander. A basic stander would put pressure on Chelsey’s pacemaker, which is located in her abdomen because of scar tissue around her heart. This would put Chelsey at risk of damage to her pacemaker, and would likely cause pain and internal pressure sores. A basic stander would also prevent her from standing appropriately, which might cause her legs to atrophy and would triple her risk of blood clots.
Sheila prepared to battle TennCare once again, saying, “I have had to fight for Chelsey since the day she was born and today is no different.” In early 2011, Sheila filed an appeal for the special type of standing wheelchair that Chelsey needed and was granted a hearing. Soon after, she contacted TJC for help. TJC found a pro bono attorney to attend the hearing with Sheila. To prepare for the hearing, Sheila compiled medical records, letters, and documentation from various providers and Chelsey’s teacher, to show why Chelsey needed this special device.
Sheila also advocated for her daughter by contacting the Governor and her state legislators so they would look into her daughter’s case. Two weeks after doing so, TennCare called Sheila’s pro bono attorney and said that if the appeal was dropped, they’d cover the special stander that Chelsey’s doctor had prescribed.
Because of Sheila’s relentless efforts and commitment to her daughter, Chelsey now has the equipment that she needs. She says, “It was by my efforts and the efforts of the Tennessee Justice Center that we were able to help my daughter get the care she needed.” With the proper stander, Chelsey remains independent and can continue to grow stronger and thrive.
Photo Credit: Meropi Falkenburg
Derek, Ethan and Racheal were neglected in their birth home. Because of this, the Tennessee Department of Children’s Services (DCS) approached the children’s grandparents about adopting them. Linda and her husband Alan did not hesitate to take in their grandchildren. They asked that as part of the adoption, the children be guaranteed TennCare health insurance so that the mental health scars left by their previous home could be treated and start healing. DCS agreed at first, but then the agency began to equivocate and reverse its position, threatening one of the children’s access to health care.
Linda contacted TJC. A Client Advocate at TJC accompanied Linda to the Child and Family Team Meeting where the adoption terms were discussed. TJC then followed up with the local DCS office to ensure that TennCare coverage would be included as part of the adoption agreement. Linda said this was monumental, “Knowing that there are people out there, like the folks at TJC, who care enough to go to bat with you and support you and see that you get the care- that’s the key.” Linda’s perseverance, along with TJC’s intervention, won TennCare coverage for the children and made it possible for the adoption to go through. In December, 2010, Derek, Ethan, and Racheal were officially adopted by their grandparents. All three children now receive regular mental health care, vital to their well-being.
Photo Credit: Stacey Irvin
Jake has been diagnosed with a rare genetic disorder and autism spectrum disorder, which mean that he has extensive medical needs. Jake was eligible for TennCare as a former SSI recipient, and he got the health care he needed to live an active life. However, in May 2010, Debra received a letter telling her that Jake’s old TennCare category was closing and that Jake would lose his care. In June 2010, Jake became uninsured. Not knowing what to do, Debra called TJC. After TJC reviewed her case, it seemed that the only way Jake would be eligible for TennCare was through the Spend Down program, which helps families that spend large portions of their incomes on medical expenses.
After studying the rules with TJC, Debra didn’t think she had enough bills that would qualify, so she arranged to borrow money to pay old hospital bills to make Jake eligible, even though this would put the family in debt. Working with TJC, she quickly realized that she had spent far more for her family’s medical care than she realized. Between insurance premiums, pharmacy costs, doctor copays, and home health supplies for Jake, she was able to find enough bills to make Jake eligible. It took many nights of digging through her financial documents and lengthy phone calls with TJC, but Debra did not give up until her son qualified for the care he needed. TJC helped her organize her files and sent a copy to DHS, and he was enrolled right away.
Photo Credit: Jim Hagans
When Dusty, now in his 20’s, was about three years old, his doctor told his parents that he had severe mental delays. He is also autistic and has 250 to 300 seizures each month, some of which can become life-threatening. Dusty has TennCare and is on the Department of Intellectual and Developmental Disabilities (DIDD) waiver, a program that allows people with developmental delays to get services in their homes rather than moving to an institution. Due to the unpredictability and severity of his seizures, Dusty needs two personal assistants at all times, which is provided to him through the DIDD waiver.
In 2010, DIDD announced that all enrollees’ services would be reduced to one personal assistant whose hours would be limited to 50 per week. Dustin’s physician at Vanderbilt and Nancy asked TJC to help them stop DIDD from reducing these services for Dusty and her other patients. TJC’s intervention with state and federal officials blocked the proposed reduction, but Dusty is now facing more cuts by DIDD. Currently, Dusty is still receiving the care he needs and is still able to live at home. Nancy calls TJC a friend and guardian angel in disguise saying,“I will be forever grateful for having crossed paths with TJC.”
Photo Credit: Shea Halliburton
Kaatje and her husband Brad cook their family’s meals with organic, natural foods, and have their own garden. In the garden, their daughters Kyleigh, Kyndal and Kennedy like to help them plant seeds and harvest the fruits and vegetables. They also like to help out in the kitchen, and to eat their meals together as a family. Kaatje also makes sure her daughters have a lot of exercise. Thanks to Kaatje’s nurturing attention and healthy decisions, her daughters are getting the care they need to reach their full potential.
While visiting his aunt in Virginia last year, Brysen had a seizure at Wal-Mart. Fortunately, an employee realized what was happening and a policeman there called an ambulance. On the ambulance, Brysen’s condition was monitored and his temperature was taken. A few days later, he had an allergic reaction to the seizure medication and had to return to the Stafford Hospital Center. A month after Brysen’s seizure, Ms. Rodrigues began receiving bills from Stafford Hospital and from Stafford County Fire and Rescue for the ambulance. Stephanie called the hospital and Amerigroup, Brysen’s managed care organization, attempting to get the hospital bill paid. Amerigroup told her they would pay the bills, but in September reversed their decision, saying they would not pay the bills because the hospital was not cooperating. Ten months later, Stafford Hospital turned the bills over to a collections agency.
Stephanie filed appeals about the illegal bills, but TennCare refused to process them, claiming she had not met the 30 day filing deadline. TJC wrote a letter to TennCare urging them to process the appeal, pointing out that Stephanie had appealed within 30 days of discovering that Amerigroup had failed to resolve the payment issues with either the Stafford Hospital or the Stafford County Fire and Rescue ambulance service. A year and a half after Stephanie received the first bill, following several more letters between TJC, TennCare, Stafford County Hospital, and Stafford County Fire and Rescue Department; Stephanie was finally assured that she would not have to pay the illegal bills.
Photo Credit: Meropi Falkenburg
Corey is a survivor of shaken baby syndrome. He was placed in foster care when he was only one month old and ten months later, Carolyn became his legal guardian. Almost a teenager, Corey is now 5’2” and cannot walk, sit without help, or talk. Carolyn says that as demanding as it is to care for someone with Corey’s needs, it is harder to deal with all of the obstacles that lie between Corey and the care he requires. Carolyn has fought courageously with school systems, physicians, pharmacies, mental health agencies, and hospitals to make sure Corey gets what he needs. Corey will never be able to live on his own. But instead of letting Corey’s limitations overwhelm her, Carolyn tries to take her cue from Corey and think positively. “He sets such a wonderful example for everyone who knows him because he finds joy in the simplest things. He is my hero,” says Carolyn.
Linda’s brother, Michael, worked in manufacturing for nearly 30 years until he was laid off in 2009. He also lost his health insurance, could not afford COBRA, and private insurance denied him coverage because of his preexisting condition, Hepatitis C. In 2010, Michael was diagnosed with acute liver disease and received free treatment from Nashville’s public hospital, Meharry. But there was a catch. Michael’s doctors said that the only potentially life changing option for Michael was a liver transplantation but because he did not have insurance benefits that permitted consideration of liver transplantation, they could not initiate the transplant.
Linda called TJC. TJC worked with her to get medical and financial approval for Michael’s transplant. TJC worked with the attorney general’s office and TennCare’s lawyers to ensure that TennCare would pay for the surgery. Michael was placed on the liver transplant list and on November 20, 2010, Michael received his new liver.
Photo Credit: Jim Hagans
Gunnar suffers from a stomach deformity and severe acid reflux which force him to eat a special diet so he can keep enough food down for adequate nutrition. He has trachea problems and asthma as well, which, alongside a lowered immune response, contribute to breathing problems and frequent respiratory infections. When Gunnar was just an infant, Jane began receiving confusing notices from the state Department of Human Services (DHS) office saying that Gunnar’s TennCare was going to be cut off. Not sure what to do, Jane called TJC for help.
TJC wrote to DHS, requesting clarification of the notices. DHS wrote back immediately, apologizing for the confusion, explaining the situation, and affirming that Gunnar’s TennCare coverage would continue without interruption. Now, Gunnar is able to get the medicines, therapies, and other care he needs to be his best.
Photo Credit: Mark Mosrie
At age 25, John has the mental capacity of a small child. He requires total care and constant suctioning to keep his airways clear. At first, he was receiving enough nursing care for his mother, Evelyn, to work. But then TennCare changed the nursing maximum to 35 hours per week, which would leave John without suctioning for long stretches and put him at risk of choking. So, when John’s care was reduced, Evelyn had to miss work in order to care for John. Evelyn appealed, asking for more nursing hours. TJC found a pro bono attorney named Leslie Muse to represent the family. TJC helped train Leslie in techniques for winning TennCare appeals. After a long hearing, the judge agreed with Evelyn and John’s doctors that his needs make constant care medically necessary. Because of Evelyn advocacy, John is now receiving the care he needs to safely live at home.
Photo Credit: Mark Mosrie
Cynthia was hit by a drunk driver while she was pregnant with Caitlyn. Several of Cynthia’s bones were broken, her face was crushed, and she suffered third degree burns. Doctors immediately delivered the baby, who had suffered a blow and had been deprived of oxygen. Now age 17, Caitlyn requires constant care. She cannot speak or walk, and relies on a feeding tube. Despite enduring face reconstruction, loss of smell, taste, and sight, and being abandoned by her husband, Cynthia cared for Caitlyn for thirteen years. In 2009, TennCare denied a special bed that Caitlyn’s doctor prescribed to keep her safe. TJC and the Legal Aid Society (LAS) helped Cynthia get a hearing. When the TennCare attorneys saw Caitlyn at the courthouse, they immediately agreed to give Caitlyn the bed she needed. Cynthia “proves that there is no stronger advocate then a mother protecting her child,” said LAS.
Photo Credit: Fran Cliff and Nancy MacLean
Lourdes’s daughter, Jannie, graduated from high school in 2009. Unlike some teenagers, she thinks her mom is the greatest. Ms. Luster came into Jannie’s life in 2006 when she married Jannie’s father. Ms. Luster quickly became an important part of Jannie’s world, making sure she got all the dental care and therapy that she needed. Lourdes took time off from work and made countless sacrifices to make sure Jannie got the health care she needed to thrive. “I know she is the answer to my prayers,” said Jannie.
Photo Credit: Meropi Falkenburg
Eleven-year-old Darius “never meets a stranger,” says his mom, Trina, of her outgoing 5th grader. Last fall, chronic headaches and severe weight loss forced Darius to miss school and football practice. Soon, he was diagnosed with brain cancer. Trina had to cut her work hours in half to care for him, leaving the family ineligible for her employer’s health insurance.
Then, TennCare told Darius he would lose coverage the day before he was going to have the brain tumor removed. Without insurance, the hospital refused to operate. Trina called TJC, and we determined that TennCare had miscalculated the family’s income and that Darius should stay on TennCare. With TJC’s help, Darius kept his health insurance and got life-saving surgery. He is now undergoing chemotherapy and his prognosis is good.
KAREN AND BILL SHANNON
38 year-old Jim was born healthy, but had lost the ability to walk and talk by the time he was eight months old. Doctors were never able to explain what went wrong. Despite his disabilities, Jim earned a Master’s degree from MTSU and attends church every Sunday. In 2008, TennCare tried to reduce the nursing care Jim needs to say safe. TJC helped Jim’s parents, Bill and Karen, file an appeal, and campaigned to fix the nursing rules. Bill and Karen led the fight by speaking to legislators and putting together a petition against the cuts. Bill said, “TJC is 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, so these people at TJC, they’re the light at the end of the tunnel for us.”
Karen and Bill Shannon
Eleven-year-old Henry Vasquez has Asperger’s Syndrome, which affects his emotions and makes it hard for him to talk. His anxiety and self-harming behaviors prompted Henry’s doctor to order Applied Behavioral Analysis (ABA) therapy. Henry’s mother, Maria, speaks only Spanish, and requires an interpreter to participate in her son’s hands-on ABA treatment. But TennCare told the family it would only cover interpretation services over the phone. TennCare’s offer was ineffective, and was a violation of the Vasquezes’ rights. ABA therapy without interpretation would be just as illogical as a partial heart surgery. So, Ms. Vasquez contacted TJC, and we filed a TennCare appeal and a Title VI complaint. Soon, Henry received an assessment to determine how many hours of ABA therapy he needed. A Spanish-speaking interpreter was present. Through Maria’s persistence and TJC’s advocacy, Ms. Vasquez can now learn how to perform the ABA therapy that Henry needs.
At age three, Marcus was kicking, biting, and hitting, and having fits of rage. His mother, Kimberly, took him to a doctor, but was told that Marcus would outgrow these behaviors. When Marcus stopped sleeping, Kimberly stayed up with him to make sure he was safe. She had to quit her job to stay home and take care of Marcus. But he was still having problems, so Kimberly took him to another doctor, who diagnosed him with ADHD and prescribed medication. Marcus’s behaviors still did not improve, so during one of his fits of rage, Kimberly called the Crisis Management Team. Marcus began receiving treatment at a local facility, where he was diagnosed with oppositional defiant disorder, post traumatic stress disorder, bipolar disorder, and sleep disorder. Thanks to Ms. Williams’s advocacy, Marcus is now getting the treatment he needs to be the best that he can be.
Photo Credit: Meropi Falkenburg
LINDA WINFORD AND KATHY LYONS
A near drowning accident caused Rebecca to become a quadriplegic at age three. She cannot walk, breathes with the help of a tracheotomy, and is fed by a tube.
Rebecca needs help clearing her throat and lungs, which could easily cause her to get pneumonia and have to be hospitalized. For more than a year and a half, Rebecca was hospital-free because she used “the Vest,” a machine that clears her lungs and prevents choking and infections. But last fall, TennCare told the family they were going to take the Vest away. 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.”
Photo Credit: Tim Cope
Linda Winford and Kathy Lyons
Seven year-old Hannah suffers from Rett Syndrome, a devastating genetic disorder. Due to her difficulty breathing, frequent seizures, and inability to talk or walk, Hannah receives nursing through TennCare. In 2009, TennCare told Patricia that they were going to stop covering Hannah’s nursing. When Ms. Womac learned about the reduction, she filed an appeal to keep Hannah’s nursing hours. Then, she called TJC. She explained that every few months, TennCare tries to reduce Hannah’s nursing. Each time, Ms. Womac must go to court, and each time the judge orders TennCare to keep providing the nursing Hannah needs. To stop this exhausting cycle, TJC wrote a letter to the state’s lawyers. They agreed, and Hannah’s nursing services have continued.
Photo Credit: Jim Hagans
Velma’s teenage granddaughter and foster daughter, Rebecca, struggles with scoliosis, severe back pain, and attention deficit/hyperactivity disorder (ADHD). Rebecca hopes to someday become a nurse’s assistant. At age 18, she aged out of state custody and was dropped from TennCare, due to a bureaucratic oversight. During the period that Rebecca went uninsured, Velma managed to pay for her granddaughter’s ADHD medication out of pocket. But, Rebecca lost valuable physical therapy time. Velma worked with TJC to get Rebecca’s TennCare reinstated, filed 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 care that Rebecca experienced. Velma said, “With TJC’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.”
Photo Credit: Stacey Irvin
Brandon became a quadriplegic in 2004, when his spine was severely injured while he was playing with his sons on a trampoline. Brandon relies on TennCare nurses and aids to stay safe and to care for his tracheotomy. Despite his disabilities, Brandon enjoys spending time with his sons and is earning a degree in Business. When TennCare’s home health policies changed, the life that Brandon had built was threatened. TennCare began requiring Tennesseans who need extensive care to make do with a dramatic reduction in nursing hours. Without constant care, Brandon would be forced to go to a nursing home, drop out of school, and leave the community where his sons live. Determined to keep his family together and to stand up for disabled parents across Tennessee, Brandon contacted TJC. With the help of TJC and attorney Linda Casals, Brandon fought his nursing cuts in Chancery Court.
Photo Credit: Trey Clark
Irene’s three year-old grandchild, Terrell, has pulmonary hypertension, congestive heart failure, and is ventilator dependent. He needed a wheelchair, but seven months after the prescription for a wheelchair was submitted, Terrell still had not received it. Without the wheelchair, 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. Terrell was missing doctor’s appointments, and the family was getting more and more desperate.
Then, Irene called TJC. We worked with her to write a letter of appeal to the state. A few days later, Terrell was measured for his wheelchair, and soon, it arrived. Irene said, “When all this started, I didn’t know 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”
Photo Credit: Tim Cope
Vicie is the adoptive mother of three special needs children, including her son Trevor. Trevor can’t walk or talk, but he loves snuggling and listening to music. In 2008, his TennCare nursing was drastically reduced. So, Vicie called TJC. We wrote a letter asking TennCare to provide the nursing that Trevor’s doctor prescribed. Days later, Trevor’s care was reinstated. Vicie also asked TJC’s for help with a TennCare policy that prevented her from leaving the house while nurses were caring for the children. Vicie had to choose between taking her three wheelchair-bound children with her to the supermarket and the library, and not going at all. TJC wrote to TennCare about this violation of the Americans with Disabilities Act. TennCare clarified the rule so that Vicie and other parents like her are not homebound. “TJC is a lifesaver,” said Vicie. “They really care about our family.”
Photo Credit: Mark Mosrie
Judy’s adopted son, Ladontay, age 6, loves skateboarding, coloring, and reading. However, Ladontay has cysts on his nose that make wearing regular glasses painful. Judy knew that if Ladontay’s glasses were more comfortable, he would leave them on at school and learn more easily. His doctor ordered flexible glasses, but his TennCare vision plan wouldn’t cover them. Judy called TJC for help. Together, we wrote a letter to the state. Within three days, Ladontay’s doctor was able to fill the prescription for flexible glasses. With his new glasses, Ladontay’s reading and schoolwork will improve and he will be able to participate more fully in sports. “When I contacted the Tennessee Justice Center, you steered me in the right direction. Your help was a lifesaver. I am so thankful,” said Judy. “Without TJC, I would have just taken ‘no’ for an answer. Now, I know my rights.”
Photo Credit: Tim Cope
Mrs. Rodriguez has been caring for her daughter, Sarah, ever since her brain was injured in a car accident. Sarah cannot walk and requires round-the-clock care, but she still enjoys watching her three children grow. After the car accident, Sarah went to a nursing home, where a blood clot went unnoticed, and almost killed her. In another nursing home, Sarah developed severe bedsores because she was not turned often enough. Afraid for her life and shaken by these close calls, Sarah’s family brought her home. Mrs. Rodriguez cares for Sarah with the help of a TennCare nurse. When Mrs. Rodriguez heard that TennCare was going to cut Sarah’s in-home nursing, she called TJC. We recruited attorneys to represent Sarah and 19 other Tennesseans hurt by the nursing cuts. For now, Sarah’s care is protected by a court order. But, Mrs. Rodriguez ‘s fight for Sarah’s care is ongoing.
Photo Credit: Tim Cope
Laurenda is the adoptive Mom of six girls, including 12 year old Karla. She needed to have open heart surgery, so Laurenda made sure that Karla made it to all of her appointments with the cardiologist, surgeon, and other doctors. When Karla went to Vanderbilt for surgery, Laurenda stayed there with her for a week. “She played games with me and even pulled me up and down the halls in a red wagon,” said Karla. “My new Mom even made a scrapbook for me of my time in the hospital so I would always know why I have scars on my chest.” Thanks to Laurenda’s dedication, Karla’s surgery was a success. Now, “You can’t tell Karla that she can’t do anything,” said Ms. Whisenhunt. “She he has confidence.” All of Laurenda’s adopted daughters have special needs, “but she always manages to take care of us,” said Karla.
Earnestine is devoted to doing everything she can to make sure her seven year-old granddaughter is as healthy and happy as possible. She and her grandmother work out together in their exercise room every day. Destiney enjoys jump roping, riding her bike, skating, and hula hooping. “I love to work out because it makes my muscles look big,” said Destiney. When Destiney needs a checkup or an immunization shot, Earnestine always takes her to her appointments. Earnestine makes sure that Destiney eats three healthy meals a day, with plenty of fruits and vegetables. Her favorite foods are peas and mandarin oranges. Earnestine also makes sure that Destiney gets plenty of sleep, brushes her teeth 3 times a day, and stays hydrated and clean. Earnestine knows that keeping kids healthy allows them to get the best start in life, so they can reach their full potential.
Brittany’s 18-month-old twins, Addleigh and Kennedi, suffer from seizures, muscle weakness, and developmental delays. Neither Brittany nor her husband has access to health insurance through their jobs, so they rely on TennCare to cover the twins’ special needs. When Brittany heard that TennCare wad going to drop her daughters’ coverage. she appealed and called TJC. We immediately recognized that the twins were still eligible for TennCare. After a phone call to the Department of Human Services to correct the mistake, the girls’ TennCare was reinstated. Brittany also worked with TJC to write a letter to TennCare, sharing the twins’ story as well as experiences of other families. In response, TennCare implemented new training to improve the accuracy of eligibility screens. Brittany said, “The thought of losing health insurance for my girls was terrifying. TJC helped me solve a problem I thought was insurmountable, and put my mind at ease.”
Photo Credit: Tim Cope
Six-year-old Chase Addington is developmentally delayed and cannot walk or talk. Chase needed home health care — to administer medicines, manage his tube feedings, and make sure he’s safe. But his mother, Donna had to fight TennCare for two years just to get home health care for her son.
Searching to find some way to help her son, Donna also called the Tennessee Justice Center. TJC stold her about new TennCare home health rules, gave her advice about getting a nurse when Chase needed one, and explained Chase’s rights. With TJC’s help, Donna was finally was able to secure a home health care nurse for her Chase.
“Being armed with knowledge of my son’s rights made it possible for me to get the care he needed,” said Donna. “I’d do anything I could to help other families avoid the pain we have suffered because TennCare wouldn’t provide what Chase needed.”
Photo Credit: Mark Mosrie
At age five, Sean was diagnosed with attention deficit hyperactivity disorder, post traumatic stress disorder, depressive disorder, bipolar disorder, developmental delays, and familial tremors. Then, when Sean was 14, his pediatrician told his mother, Lisa, that all of these diagnoses were wrong. He needed to be tested for a proper diagnosis. But most doctors who could administer the tests wouldn’t see him because they didn’t take TennCare insurance. So, Lisa contacted TJC. TJC helped Lisa arrange tests for Sean at a local hospital. However, the family had to pay the hospital $1,400 before testing could begin, because TennCare wouldn’t pay. The family didn’t have the money for the tests. Six months later, Lisa was still waiting for her son to be tested so that he could receive the treatment he really needed. Meanwhile, Sean’s behavior became harder and harder to control. “By delaying this test, TennCare is robbing Sean of his future,” said Lisa.
Photo Credit: Fran Cliff and Nancy MacLean
Bradley cannot talk or move, and is dependent on a ventilator and feeding tube. Despite his disabilities, Bradley loves to play basketball, and attend school with his friends. Bradley’s father’s employer provides health insurance for the family. But in 2006, the insurance company said that Bradley had exhausted his lifetime limits. With Bradley’s complex medical needs, the family was fortunate to have TennCare to rely on as a safety net. However, 2007, bills began to arrive, even though children on TennCare are not supposed to receive bills from providers. More and more of the illegal bills arrived. So, Bradley’s Mom, Suzette, contacted TJC. We wrote letters to TennCare, and soon they told the family that they were not responsible for the bills. Suzette said, “TJC became our advocate in the billing process, giving us the time to focus on what is important – Bradley’s care.”
Photo Credit: Mark Mosrie
Jacob, age 7, has a genetic disorder that requires him to use a machine to help him breathe. He needs another machine to eat, and braces and a walker to get around. But, when Jacob talks, and his friendliness and intellect shine through. In Fall 2007, Jacob’s doctor said he was ready to attend school, and prescribed a one-on-one nurse to ensure his safety. However, Jacob’s Mom, Amy, was unable to find a nursing agency that would provide a nurse for Jacob. She appealed to the insurance company for help, but was told that there was nothing the company could do. So, Amy contacted TJC. Since Jacob is on TennCare, they are responsible for providing care. After TJC contacted TennCare, Jacob was assigned a case manager, and soon a nursing agency arranged care for Jacob. He is now attending school, learning and socializing in a stimulating environment.
Photo Credit: Mark Mosrie
Judy’s twelve year-old son, Chase, had a vision problem that limited his activities and his ability to read. Chase’s optometrist prescribed vision therapy. After two months of therapy, his eyesight had improved significantly. But then, less than halfway through his program, Judy received notice from TennCare that it would not pay for any more treatment. She asked TJC to help her pursue the care which was bringing her son’s world into focus. We explained Chase’s rights, and helped her file an appeal. We also wrote a letter to TennCare, but they still denied the treatment. The only alternative TennCare offered was bifocals, which wouldn’t actually fix Chase’s eyes. Judy was determined to find a way to continue the therapy. Since Chase could not continue seeing his doctor, Judy performed the vision therapy for two months with his doctor’s guidance. Through prayer, tenacity, and friends’ support, Chase’s vision is now normal.
Photo Credit: Fran Cliff and Nancy MacLean
When Laura’s stepson, Ashton, lost his mother to a blood disorder, Laura started taking care of him. When Laura was diagnosed with cancer, she feared that Ashton might lose two mothers to disease. Laura was one of the 170,000 who lost TennCare, making her unable to get the regular checkups she needs to stay healthy and cancer-free. She has to live with the daily threat of cancer while continuing to raise her young stepson. TJC helped Laura navigate the limited services still available to her. We were struck by how, despite her poor health, Laura remained focused on the welfare of her child. “TJC has been such a help. Sometimes I’ll get a call – out of the blue – from an advocate checking in to see how I’m doing,” said Laura. “TJC has been wonderful.”
Photo Credit: Abby Whisenant
Linda has welcomed over 25 special needs foster children into her home over the years. She adopted four of the children. TennCare repeatedly denied medical services and equipment that Linda’s children needed. Linda contacted TJC about her year-long struggle to obtain wheelchairs for her children. She agreed to let several of her children be plaintiffs in a class action lawsuit, John B. v. Goetz, which helped children across Tennessee get the health care they need and to which they have a right. Linda’s adopted daughter, Megan, has Cerebral Palsy and is a quadriplegic. When she had trouble obtaining a communication device she needed to attend college, Linda contacted TJC again. With the help of a pro bonoattorney, Megan got her communications device and was able to attend MTSU. Children across the state have more hope thanks to Linda’s perseverance.
Photo Credit: Abby Whisenant
Sadiatou’s daughter Binta, age 11, requires total care. She is blind. She cannot walk or talk, and has at least five seizures each day. So, her doctor prescribed nursing services. Sadiatou has had to fight to keep Binta’s nursing. “It has been hard, but I keep going for Binta and for other children who need help. I thank TJC for all that they’ve done for my daughter, from the bottom of my heart!” said Sadiatou. When TennCare changed the rules under which families can get home health services, Sadiatou spoke out. Her story was featured in the Tennessean. She put a human face on the short sighted policy that would mean devastation for not only her family, but for hundreds of families across the state. She said the policy was wrong and it had to change. It hasn’t changed yet, but Sadiatou will keep fighting for Binta and other TennCare children. Sadiatou shares her family’s story so that the 670,000 children on TennCare can benefit from lessons learned and victories won in her struggle to provide her child with necessary care.
Hope and her family fled New Orleans to escape Hurricane Katrina. Soon after settling in Memphis, she faced another storm: the long and complicated process of finding care for her son Justin, who suffers from mental retardation, Cerebral Palsy, and seizures. In Louisiana, Justin had a nurse who cared for him while his mother worked. But in Tennessee, she could not even find a primary care physician to prescribe the care that was medically necessary for her son. Unable to work because Justin needed care, she supported her family with money from the Federal Emergency Management Agency (FEMA). When the FEMA payments ended, Hope contacted TJC. We helped get Justin a case manager, who found him a primary care physician. The physician prescribed nursing for Justin, and Hope was able to return to work. “I am so grateful,” said Hope. “TJC helped us begin to put our lives back together.”
Diane’s daughter, Rebekah, has Cerebral Palsy and mental retardation. She is fed by a tube and requires constant care from her parents and a nurse. Despite her disabilities, Rebekah is a vibrant young lady who enjoys music and being around people. But, Rebekah became in danger of entering a nursing home when TennCare suddenly denied her nursing services. It was impossible for Diane to care for Rebekah and her other two children without help. So, Diane contacted TJC, and we intervened on the family’s behalf. A few days later, Rebekah’s nursing was approved. “It seems like each month brings a new problem in obtaining health care services for our children,” said Diane. “I know that other families with special needs children are facing the same problems. It is difficult, but I must persevere in this battle for my own children and for other TennCare children.”
Photo Credit: Abby Whisenant
Sally’s daughter Stacy was born with a rare illness that required half of her brain to be removed. Stacey was placed in an acute care facility, which threatened to discharge her without appropriate transition services. Sally recognized that transitional services were necessary to her daughter’s well-being, so she contacted TJC for help. “Stacy is my life,” said Sally. TJC filed appeals on behalf of Sally and Stacy. As a result, Stacy received the specialized brain injury treatment to which she had a legal right.
Photo Credit: Abby Whisenant
When Ally was eighteen months old, her mother, Andrea, noticed signs of developmental delays. Ally was eventually diagnosed with autism. At five, Ally still could not speak. After traditional treatments failed, Ally’s doctors prescribed a special therapy, which TennCare agreed to cover. After less than 20 hours of therapy, Ally spoke her first words, “Hold me.” Andrea had never heard sweeter words.
Therapy stopped because TennCare stopped paying. Ally lost her ability to talk. Andrea was desperate, but didn’t know where to turn. She found the Tennessee Justice Center.
Relying on consent decrees won in lawsuits, the Tennessee Justice Center fought for Ally and got her therapy back. Ally started talking to her mother again. Now, she is learning skills she will need to lead a full life.
In 2005, the state asked the courts to eliminate consent decree protections that allow Ally to receive the therapy she needs. Determined to prevent others from suffering as her daughter suffered, Andrea, with the Tennessee Justice Center’s help, testified in federal court. Together, with the strength of clients like Andrea, the Tennessee Justice Center continues to advocate for families across the state.
Shortly after her baby, Emilee, was born, Elizabeth Hindman was told that her infant daughter had a rare and complicated life-threatening condition. Although little Emilee’s condition could be corrected with surgery, Elizabeth received the devastating news that TennCare refused to authorize the surgical procedure. Why? There wasn’t a doctor in Tennessee who could perform the surgery because Emilee’s condition was so unusual. Although Emilee urgently needed care, TennCare would not authorize surgery.
Elizabeth would not accept this answer. Like any mother, she decided to fight for the life of her child. She got the Tennessee Justice Center involved. Through our intervention, Emilee had the surgery she needed. Elizabeth spent Mother’s Day celebrating with her baby, who is happy, growing and living because her heart was repaired.
ERIN BRADY WORSHAM
Erin Brady Worsham is a talented artist, a devoted mother and wife, an active community member, and is living with ALS. ALS, better known as Lou Gehrig’s Disease, causes nerve cells to die. The death of nerve cells causes muscular atrophy, and an ALS patient eventually loses the ability to walk, talk, breathe, and swallow. Sixteen years after her diagnosis, Worsham faces this fate, but never allows it to define her. She continues to paint, speak publicly about her experiences, and attend her son’s sporting events. And, though today Worsham is totally dependent on those around her for survival, she focuses on what she can do saying, “I feel blessed that I haven’t lost my ability to think.”
For 10 years, TJC has worked to protect Worsham’s TennCare coverage and has been inspired repeatedly by her strength. Worsham’s perseverance through her experience negotiating her many struggles even led TJC to honor her as one of their first Mother’s of the Year. Through this recognition, TJC acknowledged Worsham’s inspirational role in her community and her steadfast efforts to help other families stay together when faced with cuts to TennCare services or eligibility. “One of the great blessings of my career is to have been able to work with the Worshams. Their faith, courage and generosity have had an extraordinary impact on our community, and me personally,” said Michele Johnson, TJC’s Managing Attorney.
Erin Brady Worsham
Bubba was born profoundly mentally retarded. He is legally deaf and blind, and he has cerebral palsy and scoliosis.
Bubba has a feeding pump 24 hours a day. That means someone has to make sure he is at a 45 degree angle so that he won’t aspirate. Some one also has to make sure he does not pull the tube out. He has chest percussions every 2 to 4 hours night and day. He has to be suctioned several times a day. If he coughs or swallows the wrong way, someone has to help him immediately. He needs transferring from bed to a chair; he needs to be bathed.
About 13 years ago, Bubba was abused in a nursing home in Oklahoma. Bubba’s mother, Patty, was able to get that nursing home closed. Since then, she promised herself that he would never have to go to a nursing home again – that she would do whatever she had to do to keep him at home. Bubba is now 22 years old and a little over 6 feet tall.
Bubba was discharged from Vanderbilt Hospital in February 2002. The doctor ordered home health services. He was discharged with the understanding that the home health services would be in place. Weeks later, Bubba was still not getting home health services. Because of Bubba’s health needs, someone has to be awake and with him at all times. Patty had a teenage daughter still living at home. They both took turns watching Bubba. This was very difficult as Patty’s daughter was still in high school. They struggled to watch Bubba 24 hours per day, then Patty suffered two minor heart attacks. Someone told her about the Tennessee Justice Center and the Grier consent decree.
They appealed. They got some nursing services. Then in August, Patty was hospitalized in Nashville. Bubba’s nurses agreed to work overtime to care for him while Patty was in the hospital, but Bubba’s managed care organization said no. Bubba’s doctor said he would have to hospitalize Bubba if they could not get home health services for him. Bubba is terrified of hospitals because of the abuse he endured at the nursing home. Patty was afraid for his life if he had to be hospitalized. And she was dealing with the stress of her own illness. Tennessee Justice Center came to their rescue. They helped them appeal and they were able to get the nursing hours so that Bubba did not have to go to a hospital. After that the doctors discovered that Patty’s heart was in really bad shape. She had open heart surgery. It was such a relief for her to know that Bubba had the care he needed at home while she was hospitalized. That would not have been possible without their appeal rights. Families like Patty’s need the Grier consent decree and organizations like Tennessee Justice Center to help them.
Like other mothers, Shelly nurtures special dreams for her children, Ellie and Wayne. A few months ago, these dreams gave way to fear that she couldn’t even keep them fed. After Ellie needed surgery for a life-threatening neurological condition, Shelly had to stay home to care for her. When she tired to go back to work, the state cut the family’s food stamps, a calculation that resulted from double counting the family’s child support. Fearful but determined, Shelly insisted on fairness. Officials admitted the policy was wrong but refused to change, saying it would be too difficult to reprogram the state’s computer. Shelly’s local attorney referred her to the Tennessee Justice Center.
After Tennessee Justice Center intervened, the state made up the loss to Shelly and reprogrammed its computer so that it no longer shortchanges families. Because Shelly took up for her children, thousands of other moms across the state will no longer be penalized when they go back to work, and their kids will no longer go hungry.
Photo Credit: Glen Booth
Carol Smith is extraordinary. Born with cerebral palsy, her accomplishments have surprised everyone – except her parents. Jean and Bill Smith have raised her to be a feisty, self-confident, vibrant young woman. Using her computer speech synthesizer, Carol has testified before Congress and gives motivational talks to children with disabilities. From nursing Carol through illnesses she was never expected to survive, to taking notes for her in classes, Jean has been a super-mom. A disabilities organization just recognized Jean as Mother of the Year.
Even super-moms sometimes need help, though. That’s why there is a Tennessee Justice Center. When state policies threatened to send Carol to a nursing home, her mom turned to TJC. TJC represents Carol and thousands of other families in their struggle to prevent the cruel and costly institutionalization of people with disabilities. We are grateful for the privilege of help Jean and the many other mothers who TJC services throughout Tennessee.
“By helping me tell my son’s story to lawmakers and judges, the Tennessee Justice Center has given me a chance to make the world a better place for my kids and for other Tennessee families.”
Wanda’s sons are the lights of her life. Ten-year-old Christopher has cerebral palsy, developmental delays and is blind. When he was born, Wanda was told to institutionalize him. She refused, believing she could give her son a better life.
Today, with Wanda’s loving care, Christopher has learned to sit up and speak a few words. He likes being tickled, listening to country music and playing with his baby brother. TennCare HMOs have repeatedly denied coverage for care that his doctors prescribe and Wanda continues to push for the care he needs.
The Tennessee Justice Center, on behalf of Wanda and Christopher and other courageous TennCare families, is working to make sure that all TennCare enrollees get medically needed care. Because, as Wanda says, every child deserves a chance for a good life.
“I don’t have the words to say what I feel about TJC. They helped us when no one else would.”
James has Marfan’s Syndrome, a rare disorder that ravages the central nervous system. Doctors can’t explain how he is living, but his wife Lorrie knows. James lives for his family.
Their young children, Catherine and Branson, both inherited Marfan’s Syndrome. They also suffer from lupus. James has been their steadfast champion when their TennCare HMO has denied the children critically needed medical care.
New patient protections, won by the Tennessee Justice Center with the help of James and other courageous TennCare parents, are now in effect. James has used those rights to obtain the care his children need, as have thousands of other TennCare mothers and dads across the state.
As James continues his struggle for life, he is strengthened by the knowledge that he has done all for his children that any father could. For this dad, that’s what life is all about.
“Every Mother’s Day is a gift. Julian wasn’t supposed to see the first one. Yet, this marks our sixth one together. For Julian, and thousands of other Tennessee children, TJC has literally been a lifesaver.”
Julian was born with serious heart and lung defects, and soon after birth suffered a stroke. But, his mother, Shawn, never gave up.
Nor has the Tennessee Justice Center. When the TennCare HMO unilaterally decided to cut off all his health benefits, Shawn and TJC joined forces. Julian became a lead plaintiff in a landmark case to protect patient rights.
The result? First, an assurance of healthcare benefits for Julian and 637,000 other vulnerable Tennessee children. And second, a landmark decision that every child and family receiving TennCare is entitled to appeal arbitrary denial of care.