Client Focus: A Cochlear Implant for Amara

Two-year-old Amara was born with profound bilateral sensorineural hearing loss, meaning she could not hear out of either ear due to a malformation and a deficiency in her cochlear nerve. At such a young age, when her brain was still developing and adapting to the world around her, the absence of sound meant more than just a lack of communication. Her safety was at risk—she could not hear the warning sounds of danger, nor could she fully acquire language or develop the social skills that are critical at her age.

Amara’s mom felt that for her to reach her fullest potential, she needed access to sound. Her ability to hear could make all the difference in her development, and with the right intervention, her future could be filled with possibilities. That’s why Amara’s doctor recommended a cochlear implant—a medical device that would directly stimulate Amara’s auditory nerve and help her experience sound for the first time. Early access to sound is vital for children like Amara, whose brains are still at their most changeable and adaptable. The sooner she could receive the implant, the better her chances for progress in language acquisition, speech ability, and social development.

But there was a major obstacle. Amara’s Managed Care Organization (MCO) denied the cochlear implant, using overly simplistic, black-and-white criteria to claim that Amara was not the right candidate for the surgery based on her medical imaging. Her mother was devastated. The decision felt like an insurmountable barrier between Amara and the future she deserved.

Determined not to give up, Amara’s doctor appealed the MCO’s denial. But once again, the request was turned down. The delays were crushing—each day without the implant meant Amara was missing out on crucial developmental milestones. Her mother was left feeling helpless, but she knew she had to keep fighting for her daughter.

Legal Council has a Medical-Legal Partnership with Amara’s hospital, so a social worker referred Amara and her mother to us for help. Sarah Hess, Senior Staff Attorney, represented them at a State Fair Hearing, arguing that the MCO’s denial of a medically necessary cochlear implant was a violation of both federal law and Illinois state law. The law clearly states that Illinois Medicaid must cover all medically necessary treatments for people under the age of 21, and in Amara’s case, her physician made clear the implant was undeniably essential for her well-being and development.

Amara’s doctor, who had made the initial recommendation for the implant, testified as an expert witness at the hearing. As an expert in the field and with years of experience performing cochlear implants on children with similar anatomy to Amara’s, the doctor presented compelling evidence, citing studies and best practices from ear surgeons worldwide. This expert testimony was central to convincing the judge that Amara’s cochlear implant was medically necessary. It was clear that denying Amara the implant would hinder her progress and violate her rights under the law.

In the end, justice prevailed. The hearing officer reversed the MCO’s denial and ordered the organization to approve the cochlear implant surgery within 72 hours. For Amara and her mother, it was a moment of triumph—a moment that would change Amara’s life forever.

Since receiving her cochlear implant, Amara has thrived. She is now able to detect sounds, begin to understand language, and take the first steps toward developing the communication skills that will serve her throughout her life. Her future is brighter, thanks to the intervention she needed—and the advocacy that made it possible.

At Legal Council, we are proud to support families like Amara’s. While her case may seem extraordinary, situations like hers are not uncommon. Every day, our staff works with individuals and families to help them navigate the complex healthcare and coverage systems, ensuring that the laws meant to protect them are upheld. Through our medical-legal partnership model, we are able to provide the legal expertise necessary to advocate for those who may not have the resources or knowledge to challenge the system on their own.