MOTHER’S DAY 2019
Every Mother’s Day we honor the strength and determination of these advocates with the Tennessee Justice Center Mothers of the Year. Working with families in times of crisis, TJC has witnessed the extraordinary love and courage of mothers, year after year. We have stood with parents who persistently advocate for not only their own children but all children in need of health care.
Our staff recruits volunteer photographers and then provides our honorees with framed “Mother of the Year” certificates and framed family photos. Their moving stories of love and devotion inspire us all year long. To read about why we honor courageous moms, foster moms, grandmothers [and dads, too!] around Mother’s Day each year, please read this story by our Executive Director, Michele Johnson.
Help TJC keep standing with moms: We gain our strength from our amazing mothers of the year who don’t give up. We won’t give up either, and we need your help so that we can continue to fight alongside these moms. Looking for a gift for a mom in your life? For a donation of $50 or more, we will send a Mother’s Day card to a mom of your choice!
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.
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.
William Halbert, Jr.
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.
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.
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.”
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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.