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Family Voices of Tennessee at Tennessee Disability Coalition
One of the first formal Chapters, Family Voices of Tennessee has more than 600 family members and has distributed information to more than 1,000 families in the past year. In partnership with the Tennessee Health Care Campaign, our Coordinators produced a 15-minute video on TennCare (Medicaidmanaged care) for Children and developed a training program for families that includes Family Voices materials. Housed at the Tennessee Disability Coalition in Nashville, Family Voices has strong partnerships with Title V/CSHCN, the ICC, Vanderbilt Children's Hospital, parent and provider organizations and the UAP, where one Coordinator serves on the Vanderbilt LEND faculty. Challenges for families include private health plans with inadequate coverage for therapies, and a managed care system that typically denies initial requests for therapies, making families appeal. Even though families win 90% of the appeals, this process burdens them. In addition, TennCare's definition of "medical necessity" doesn't take into account children with developmental problems.