Ronda Coggins
Ms. Ronda Coggins lives in Telford, TN with her husband, Larry, and her 44-year-old daughter, Amanda. Ms. Coggins has been a Tennessean for 68 years and comes from a proud farming family. Her parents farmed until the day her father passed away at age 92 due to a tractor accident. Ms. Coggins’ mother is now 95 years old and lives independently nearby, which allows Ms. Coggins to check on her daily and enjoy the outdoors with her.
Despite her BS in Business Management and 20 years of work experience in healthcare, Ms. Coggins never anticipated how important healthcare advocacy would become to her family’s life. “The day I left the hospital with Amanda is when I learned she was microcephalic. I didn’t know the extent of that condition.” Because Amanda’s brain did not develop properly, Ms. Coggins understood that meant Amanda would have intellectual disabilities. She was later diagnosed with infantile spasms syndrome and Lennox-Gastaut syndrome. These syndromes are often resistant to many types of anti-seizure medications, leaving Amanda to endure multiple types of seizures. To this day, Amanda can experience hundreds of seizures a month which put her at risk of falling, choking, or aspirating. Because of her seizures, she can stay awake for several consecutive days and nights. She is nonverbal and can’t walk without hands-on assistance. Amanda needs 24/7 care and receives Nursing and Personal Assistance to help keep her safe.
Ms. Coggins’ faith gives her the strength and courage to fight for Amanda’s needs. “God gave Amanda to me to take care of her.” When Amanda was 7 years old Ms. Coggins contacted U.S. Representative Jimmy Quillen for help. Rep. Quillen referred Amanda to Greene Valley Developmental Center outreach program and Amanda was enrolled in TennCare and TennCare’s DIDD 1915(c) home and community-based waiver program. At that time, Amanda suffered 200-300 seizures per month.
Ms. Coggins juggled working and caring for Amanda until she was 18 years old. Although she couldn’t afford to stop working, Ms. Coggins spent many working hours feeling the need to be home caring for Amanda and took the risk in the best interests of her daughter. Amanda’s condition was unique, which made it difficult to find answers and guidance to provide her the best possible care. “Due to Amanda not standing or walking, her feet gradually turned inward. Later, a physical therapist (PT) with the homebound school system became interested in Amanda’s case. It was the PT who emphasized the importance of being mobile. The PT began the process of contacting an orthotic to make ankle-foot orthosis. Amanda began the procedure of Botox injections and serial casting to help straighten her feet and ankles, which would allow her to walk with assistance. After many years of hard work from an amazing PT and orthotist, Amanda’s progress with her motor skills has been astounding. Her PT & SLP have written guidelines to be followed by all who are involved with Amanda’s care. Although the progress has been slow, Amanda is now walking with assistance.”
Ms. Coggins says, “Amanda has been through a lot of pain and suffering, but I contribute her longer life and healthier status to being mobile.” And their hard work has paid off. When she was born her life expectancy was 5 years old, because of her low immune system and the risk of communicable diseases. However, because of the exceptional, loving care Ms. Coggins has devoted to her daughter, Amanda is now 44 years old!
Amanda is very loving and caring. She loves hugs and snuggles, and likes to play. Her favorite toys are her ball and keyboard. “She will smile at me whenever I’m playing with her. She is happy.” Amanda’s need for 24/7 care and attention can be hard for Ms. Coggins if their home care hours go unstaffed, which has been a problem in the past. In 2011, when DIDD changed its policy to cap Personal Assistance (PA) hours to 215 per month, despite Amanda’s doctors saying she needed 24/7 PA care, Amanda and Ms. Coggins joined a lawsuit, H.B. v. Emkes to protect her hours. Then again in 2021, when Amanda was not getting her approved care, they joined another lawsuit, M.A.C. v. Smith, led by TJC, which argued that the state wrongfully withheld medically necessary services.
“TJC worked diligently to help Amanda keep her level of care. It has really been inspiring to see how hard they worked to reach our goal for Amanda. The state doesn’t understand there are some of us out there who need extra help to maintain the work we have tried so hard to accomplish. During the last 3 years, adequate home health staffing was not available. I had to prioritize Amanda’s needs to ensure all her PT was completed. It was a difficult task to choose between assisting with her activities of daily living and her PT treatment. I have been impressed with the level of dedication, commitment, and determination the TJC put into Amanda’s case. Their excellent work ethic and dedication helped Amanda achieve and maintain significant goals. If not for Tennessee Justice Center, I know Amanda would have lost her care. Vanessa is a valuable member of their team who has gone above and beyond what was expected of her. When questions and problems arose, I was able to rely on her to give me an honest answer and get the job done. I was blessed to have her advocating for Amanda.”
Despite the struggles, Ms. Coggins has a positive outlook on the future. “I am excited to see what the future holds for Amanda. I know that she can reach even greater goals with the care and services she is now receiving. Amanda has taught me to have a lot of patience. I am proud to be Amanda’s mother. She is such a happy, loving person with a unique personality. She is a beautiful, special young lady who smiles, giggles, and brings joy and cheer to those of us who love her. I am very grateful to have learned to appreciate the simple joys in life through Amanda’s love.”
Tennessee Justice Center is honored to recognize Ms. Ronda Coggins as a 2024 Mother of the Year for her love and dedication to her daughter and her continued advocacy for families all across the state.
Photography by John Edwards.
