By Kimberly Graves, Chronic Disease Coalition Ambassador
Learning to live with multiple chronic diseases over the years has been challenging. I've learned to speak up and use my voice as an advocate, but learning to ask for assistance in my home a few years ago was a big change as I'm a very private person.
Navigating the healthcare system is rarely easy nor is it fun. I've been learning this firsthand, as I'm currently going through the STAR+PLUS WAIVER appeal process after facing a recent denial of services. The STAR+PLUS Waiver is a Medicaid program in Texas that provides healthcare services to people who live at home.
The appeals process involves an immense amount of documentation, medical records, strict timelines and persistence. The process begins with an internal appeal through your managed care organization (the company that manages your Medicaid plan), followed by a potential fair hearing in your state. Unfortunately, this isn’t the first time I’ve participated in the process. Two years ago, I successfully won my appeal. During the hearing, the judge asked me specific questions about my activities of daily living (ADL). When she realized I have difficulty in several areas, and that I live alone, she approved services for me.
In July, I had a fair hearing with a Fair and Fraud Hearing Agent (FFHA) following a denial of services. An FFHA is an individual who works independently from the patient, provider(s) and managed care organization. The nurses and care coordinator from my managed care organization and the person I chose as my representative were also with me at the hearing.
After all my medical information was entered on record by one of the nurses, the FFHA asked me questions about my medical conditions, my ADLs, recent surgeries, mental health, medications, dosing, etc. During the appeal process, the services I was receiving stopped instead of continuing until a final decision is made. The FFHA asked why this happened and I shared that I had been told that it was due to a “computer issue.” Following the hearing, my services will resume until a final decision is reached at the end of September.
I'm sharing my journey because so many individuals and families quietly battle these bureaucratic hurdles just to receive the life sustaining care they need to remain in their home. To ask for assistance was a challenge, but now I realize how much I not only benefit from it but really need it. I can’t believe I’m having to fight to keep it! Navigating this process requires a lot of emotional energy, and I've had to remind myself to rest and do self-care.
As a patient advocate, I personally have experienced and heard so many stories from those with chronic diseases who may not have the know-how, the energy, or the willingness to fight through an appeal process. I hope that by sharing mine, it gives someone else the courage to keep fighting for the care that lets them stay in their home, stay independent, stay themselves. I’ll keep speaking up – for myself, and for everyone who is still learning how.