The Tennessee State Legislature's Insurance Committee convened on March 25, 2025, to discuss critical issues surrounding the Katie Beckett program, which provides support for children with profound disabilities. The meeting highlighted significant concerns regarding the accessibility and utilization of home and community-based services (HCBS) funds allocated to families.

Trevor Anima, a parent and caregiver, testified about his experiences navigating the program. He emphasized that while families are allotted $15,000 annually for HCBS, they are only able to access an average of approximately $2,800 due to bureaucratic hurdles. Anima advocated for the introduction of Health Reimbursement Accounts (HRAs) to allow families greater flexibility in managing these funds, similar to what is available in Part B of the program. He expressed frustration over the challenges families face in accessing necessary services, stating that the current system often leads to price gouging by vendors.

Jeff Strand, director of public policy for the Tennessee Disability Coalition, echoed Anima's concerns, criticizing TennCare's management of the program. He pointed out that the fiscal note associated with the program indicates that TennCare struggles to provide the full extent of HCBS funding, raising questions about the allocation of the $25 million budgeted annually for Part A. Strand highlighted that the program has never reached its intended enrollment capacity of 300 children, suggesting that unspent funds may be going unused or mismanaged.

Both Anima and Strand called for reforms to empower families, arguing that parents are best positioned to determine their children's needs. They urged the committee to consider changes that would streamline access to funds and reduce bureaucratic obstacles, ultimately aiming to enhance the quality of life for children enrolled in the program.

The committee members expressed concern over the issues raised, with discussions indicating a need for further investigation into the management of the program and the practices of vendors involved. The meeting underscored the ongoing challenges faced by families relying on the Katie Beckett program and the importance of legislative action to address these issues.