Donna Guyton
The Tennessee Justice Center is honored to recognize Ms. Donna Guyton and Mr. Michael Guyton as 2024 caregivers of the year for their love and dedication to their son, Patrick Guyton, and their work advocating for children with disabilities and their families.
Donna and Michael Guyton welcomed their first son, Patrick Michael Guyton, into the world on May 4, 1986. Patrick was a healthy, precocious, loving child. He enjoyed going to Christian Bible School/Daycare and accompanying his mom to the grocery store. Everywhere he went he extended his kindness to community members, especially those with disabilities. He would also throw pennies in Nashville’s Hickory Hollow Mall fountain wishing for a younger brother. And he got his wish! The Guyton family happily grew and welcomed Peter while Donna worked as a Nursing Instructor at a local college and Michael worked as an Actuary.
But then Patrick had a catastrophic illness. When Patrick was four years old, he developed viral encephalitis from a mosquito bite. He was hospitalized at Vanderbilt for three and a half months and was placed in a drug induced coma for six weeks. When he came out of the coma, he was left with profound disabilities, a severe seizure disorder, was legally blind, and was unable to move except to turn his head.
When Patrick was finally discharged, Donna and Michael began to take care of Patrick 24/7. Donna eventually resigned from her position to care for Patrick. For many years, Patrick and Donna worked with physical therapists, occupational therapists, speech therapists, and even spent time in Louisiana in a rehab facility, with support and assistance from Michael and Peter.
Because of his significant needs, Patrick was enrolled in TennCare’s Home and Community Based 1915(c) DIDD waiver program. Through DIDD, Patrick received nursing services and eventually Personal Assistance services. These services were critical to Patrick staying at home and in the community. “What's important to us is Michael and I kept Patrick at home all these years until he passed.”
Patrick had an active life despite his medical fragility. He was enrolled in Harris Hillman, a Nashville special education school until he graduated when he turned 22. Patrick loved animals and had three cats and two dogs. He enjoyed spending time outside when the weather was nice, watching Animal Planet, and listening to country music. Patrick also volunteered at the Metro Animal Shelter and Metro Animal Care Control. When he could, he also participated in activities with his local church and with the Williamson County Parks and Recreation’s People at Leisure with Support (PALS) program.
But very early on, Donna quickly learned that to give Patrick the quality of life he strived for, it would require a lot of advocacy and strength to fight. When Patrick was initially diagnosed, the Guyton family was on COBRA health insurance and Michael’s new employer would not cover Patrick. Donna researched her husband’s actuarial books and discovered a law that would extend Patrick’s COBRA coverage because he became disabled as a child. The catch? Social Security needed to certify that Patrick was disabled, and the local Social Security office was very backlogged.
When Donna learned there was an open government meeting at a local church, she decided to attend. “I went to the mic and shared our story. Gordon Bonnyman was there. He was with Legal Aid at the time because TJC hadn’t started yet.” As luck would have it, the head of the local Social Security office was there and after speaking with Donna, Patrick’s case was straightened out a week later. “That was my introduction to the world of advocacy, and my life has never been the same.”
With Patrick by her side, Donna continued to advocate. Not only for Patrick, but for other children and those with disabilities. One of their first big wins was getting a traumatic brain injury law passed in Tennessee. With Donna’s testimony before the legislature and government agencies, Tennessee became one of the first states to establish a Committee on Pediatric Emergency Care (COPEC), which ensured pediatric emergency care needs of Tennessee’s children are properly and fully addressed. For her work on COPEC, Donna received the State of Tennessee Certificate of Appreciation by Governor Don Sundquist in recognition of outstanding service in the best interests and in the highest traditions of the State of Tennessee. Donna and Patrick were also featured on various programs, including CNN and ABC World News Tonight; Donna and Patrick were also featured in Time Magazine and USA Today, advocating for children with special health care needs.
The Guyton family participated in the Vanderbilt FACT Program (Families as Classroom Teachers), opening their home to Vanderbilt Medical Residents and Nursing students for interviews on the life of a special needs child living in their home and community. Donna was an active participant in both the Vanderbilt Parent and Family Advisory Committees, advocating for family centered care in the Vanderbilt Children Hospital. “We feel like Patrick inspired us, my husband, myself and younger brother Peter and made us all better people. He helped change things for so many children regarding healthcare advocacy.”
All the while, Tennessee Justice Center and the Guyton family forged a strong bond through happy times and heartbreak, through learning together and advocating together. After meeting Gordon, Donna soon met TJC’s other co-founder. “I was contacted by The Arc. Norm Tenenbaum was there at the time. They had a new attorney who was interested in getting into this field, and he wanted to know if I would take her under my wing, and that attorney was Michele Johnson. We met in a coffee shop in Belmont, and together we met up with different advocates. I remember when Michele got married, our whole family went to her wedding. We have all known each other for many years.”
When the Tennessee Justice Center opened its doors in 1996, Patrick was one of TJC’s first clients. Ever since, the Guyton family worked alongside TJC on various cases and advocacy efforts around TennCare Medicaid. One of the biggest struggles Patrick experienced throughout his enrollment in TennCare was getting his home care staffed. To address the missed hours of nursing care, Patrick joined one of TJC’s lawsuits, A.M.C. v. Smith, in 2022 which argued that the state wrongfully withheld medically necessary services.
However, this issue was overshadowed when in June 2023, Patrick’s TennCare coverage itself was suddenly at risk. "TennCare made multiple mistakes and were going to disenroll him despite us spending hours on the phone, filing appeals, and filling out their paperwork.” This all came at a time when Patrick was hospitalized, and his health was rapidly declining. Donna and Michael were struck by how unjust this situation was. Both had advanced level degrees and were familiar with the TennCare system, a program that Patrick participated in for most of his life. Yet finding a solution for this problem seemed impossible. This was a problem TJC was working to fix through the lawsuit A.M.C. v. Smith. To demonstrate the danger of these mistakes, Donna wrote a declaration for the AMC lawsuit.
Then, Patrick passed away on July 27, 2023. On August 5, 2023, Patrick’s Celebration of Life was held at Holy Family Catholic Church in Brentwood, TN. “Gordon and Michele and Brant came to celebrate Patrick’s Celebration of Life service and were honorary pallbearers. Gordon told me Patrick’s declaration was going to the White House, and we were all hopeful that it would help others in some way.”
This was a difficult time for the Guyton family, but true to form, Patrick inspired the family to keep fighting for those in need. “I thought with Patrick’s passing that my healthcare advocacy days were over, but I was asked by TJC to be a witness in the A.M.C. v. Smith trial, which was three-and-a-half months after Patrick passed. We felt like, ‘How do we get through that?’ And it was Patrick who inspired us from above. On November 14th, 2023, I was the first witness called for the A.M.C. v. Smith trial. I spent approximately 2 hours on the witness stand talking about Patrick and the mistakes TennCare had made through the enrollment process and their attempt to disenroll him from the waiver program, which he had been in for 30+ years.”
“The Tennessee Justice Center has been invaluable not only to our family, but to many families across Tennessee. We are so honored and humbled to be nominated with other mothers and families. We are so thankful and grateful that we have the Tennessee Justice Center here to assist clients and families with such a complex system that can be very unjust at times. Our hearts are filled with gratitude for the Tennessee Justice Center.”
