This blog is part of our Working Better Together series and was authored by Aaron Bindman, Supervising Attorney at Legal Aid of North Carolina. This blog series is intended to provide our advocacy partners with a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work.
The “Medicaid Experiences” project referenced in this blog series is a collaborative endeavor of the National Health Law Program and eight state-based legal aid organizations. The purpose is to better understand the direct experience of individuals as enrollees and applicants for Medicaid and advocate for improvements.
Legal Aid of North Carolina is fortunate to have a team of advocates dedicated to appealing adverse Medicaid decisions for beneficiaries. We help clients from across the state get approval for inpatient and outpatient hospital services, MRIs and X-rays, physical therapy, home health services, and so much more. A core requirement for coverage of Medicaid services is whether the services are “medically necessary.” To help prove medical necessity, our team of course consults with medical providers, but our most important work is listening to our clients. They are the ones who know exactly what they need and why a particular service is so vital to their physical and mental health.
Explaining and justifying medical necessity can especially be complicated for services that our clients request through home-and community-based waivers. In North Carolina, the Innovations Waiver is designed to meet the needs of individuals with intellectual or developmental disabilities who prefer to get long term care services and supports in their home or community, rather than in an institutional setting. For many of our clients, feeling mentally and physically safe and secure in their home environment goes beyond straightforward medical interventions. By truly listening to our clients’ needs, we have been successful in gaining approval for unique services through the Innovations Waiver and prove medical necessity when challenged. Below are three stories that highlight our recent work.
Keeping the Lights On [Eric B., September 2024]
Eric is famous around town for his complex and vast holiday light system. His displays are everywhere outside and inside his home and are visible year-round. In talking to Tonna, Eric’s guardian, she explained that these lights bring Eric immense calm and “mean the world to him.” Unfortunately, their family experienced frequent power outages that would cause Eric significant stress. The power outages themselves would sometimes lead to Eric needing to be hospitalized. Not only would those acute situations cause painful incidents, but the fear of the power outages was causing Eric to continually worry about when the next outage would occur. Eric’s family requested payment through his waiver services for the installation of a generator that would provide power to the whole home. Unfortunately, this request was denied because the managed care organization that manages waiver services did not understand why a generator would be medically necessary for Eric because it was not something that they had ever approved in the past. Legal Aid helped get approval for this service detailing the necessity of keeping the lights on to Eric’s mental and physical health. Tonna stated that she was “very grateful to everyone for actually listening to and understanding” Eric’s situation. As a result of the waiver paying for this service, Eric’s display of lights will remain on (likely after a brief flicker) and he will have significantly less stress, a major benefit to his wellbeing.
A Part of this Community [Keisha L., March 2023]
Keisha lives in western North Carolina – horse country. For years, she participated in therapeutic horse caring, where she would assist with horse nutrition, grooming, walking, and riding every week. “Horses and caring for horses is everything to her,” says Maria, Keisha’s mother. Being with horses supported Keisha’s mental health and helped her create community with other volunteers who shared Keisha’s passion for horses. However, the cost of the activity to Keisha’s family began to become a potential issue. Keisha’s family turned to Medicaid to get these services paid through her waiver services; however, the request was quickly denied for being outside of the waiver’s scope. Keisha’s family reached out to Legal Aid and asked for help to get these services paid for. Our team was able to successfully argue that these services were necessary for Keisha as they met a defining purpose of the waiver, to integrate beneficiaries into their community setting. Keisha continues to this day to spend her time with the horses and all the people who love them. Maria has described the activity as “vital” and that “it has done so much for her in so many different ways.”
A Place to Be Himself [Josh B., March 2024]
Josh relies heavily on movement, exercise, and sensory stimulation and, as his mother, Mary, says, “needs access to a space to regulate his emotions and stay in control of his behaviors.” He has had difficulty exhibiting these behaviors in more public places, like gyms, playgrounds, and camps. Josh’s family had an unused outbuilding on their property. They requested payment through the waiver to build out this structure and create a safe, comprehensive space with a variety of equipment that would provide Josh a sensory diet of different forms of resistance and ways to relax and calm his body. The entity administering the waiver services denied the requests stating that the waiver cannot be used to pay for new construction or for items that would normally be available to any person and are therefore ordinarily provided by that person’s family. Legal Aid helped explain the medical necessity of this request by highlighting the importance of having close access to sensory activities so that Josh can participate in self-regulating behaviors whenever it is needed and connecting how each installed sensory tool would address Josh’s needs. Payment for this space was approved and included heating and cooling systems, noise-proofing materials, shatter-proof windows, soft flooring, and several types of swings and hammocks for sensory regulation. Josh uses this space every single day for multiple hours. Mary describes the place as “fantastic, it is just a really great place for Josh to hang out. He gets to choose what he needs at any given moment…It is a beautiful thing.”
Our team at Legal Aid of North Carolina were honored to partner with Eric, Keisha, and Josh. By centering in on their stories, we were able to understand and prove the medical necessity of each of these requests.
