TJC Story Blog
Andrea Riley is the mother of a 23-year-old son. Her son was diagnosed with high functioning autism when he was 19 years old. He also has ADHD, anxiety, and depression, which was previously diagnosed in childhood. He became enrolled in the ECF CHOICES program in February 2019, and Ms. Riley has been a fierce advocate for her son in helping him navigate the program. Through ECF CHOICES, her son was able to participate in a program called Project Search that Ms. Riley says is fantastic, and he was able to find employment after completing Project Search.
Though her son was quickly approved for Social Security, Ms. Riley ran into a number of problems with her son’s SSI and SSDI and she ended up missing three days of work to spend the time in the Social Security office to get her son’s federal benefits straightened out. Ms. Riley has spent hours documenting everything she has done to work with the ECF CHOICES program, TennCare, and Social Security for her son. Through this process, Ms. Riley has come to realize that there is a huge gap in finding experts with knowledge about federal programs and understanding how federal programs affect eligibility for state programs.
Because of this disconnect, her son has had to file two appeals with TennCare. The first appeal was regarding patient liability. Ms. Riley spent hours and hours trying to resolve the issue. She finally called the Tennessee Justice Center and began working with Vanessa Zapata. She described how when working with Vanessa, for the first time, someone completely listened to her experiences and she felt that as a mother and advocate, she had finally found someone to be an advocate for her and her son. Tennessee Justice Center and Vanessa Zapata continued to work on her son’s behalf to resolve the patient liability issue. During the appeal, her son received another letter stating that his TennCare had been terminated. The ending date of coverage was before the date on the letter. Again, Vanessa stepped in to resolve this issue as well. The entire appeal process took 10 months. Ms. Riley said that one of the most frustrating parts of her navigating all these programs is knowing that she made mistakes, and TennCare made mistakes–but not knowing what the mistakes were will ensure the continuation of these issues and problems for others that depend of TennCare.
In September 2020, her son qualified for both Medicare and Medicaid (TennCare). He also qualifies for QMB help. Since qualifying, Medicare has paid for its portion of the bills, but TennCare has not paid their portion. Her son filed a second appeal with TennCare in March 2021. Ms. Riley has again spent many hours trying to resolve the issue, but finding no help and again running into dead ends at every turn, she has again turned to Vanessa and TJC to advocate on behalf of her son. This appeal is still in process.
Ms. Riley has come to realize that the majority of issues with TennCare seem to point to TennCare’ s own internal systems and processes. She recommends that TennCare focus on their internal structure and work to fix the places that are not working properly and where people are getting stuck. She has witnessed the need for people who are trained to understand the connection between federal benefits and the effect on benefits and eligibility of state programs and coverage.
Ms. Riley is very educated and smart, but she describes how “the system” chewed her up and spit her out. Her experience working with TennCare has been that they are not person-centered, but rather they are paperwork centered. She has found that the program seems to be very fear-based and not designed to work for their enrollees. Ms. Riley shared that, “every day I pray that I outlive my son,” because she fears what would happen to her son if something were to happen to her. Ms. Riley kept documentation on everything, and she said that TennCare has never returned her phone calls or called to follow up with her. She explained how it took an attorney with Tennessee Justice Center getting involved for TennCare to finally listen and to fix their problem. Ms. Riley shared that it is reassuring to know that she now has a relationship with TJC and Vanessa, and Vanessa will be the first person to call if any other issues arise with her son’s TennCare.
Ms. Riley’s son also receives SNAP benefits and has not had any issues with enrolling or receiving those benefits. Ms. Riley wants to be a part of the solution in reforming programs like TennCare to work better for those they serve, and she is sharing her experiences to bring more attention to the barriers and red tape she repeatedly runs into while advocating for her son. Ms. Riley says she is grateful for Tennessee Justice Center and the work done for those that need an advocate to fight on their behalf.