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Katie Beckett Bill Passes House TennCare Subcommittee

Representative Sam Whitson with Mom and Daughter
Sarah's picture

Today HB0498/ SB0476 to create a Katie Beckett Program in TN was passed by the House TennCare Subcommittee! We are so thankful to Representative Sam Whitson and our amazing families for championing this legislation. 

Notably, a round of applause broke out when the bill passed and the Sponsor Sam Whitson asked a family, Tori and her daughter Zoey, to stand with him as he shared closing words. That doesn't happen in most committee hearings.

The bill will most likely move to the House Insurance Committee to be heard next week. This committee is typically scheduled to meet at 12pm CT on Tuesdays. We will confirm next steps for this important legislation as we learn more.

Before it was passed, the House TennCare Subcommittee voted to accept a new amendment. During the hearing, two passages were stricken from the amendment and that change was approved as a "clerical motion" by the committee members. Considering this change a "clerical motion" meant that the removal of these passages would not hold up a vote on the amendment. The remaining language of the amendment is how the bill will read moving forward.

The amendment includes a few minor changes from the language adopted last week in this committee. There is no income cap included. Thank you to all our families for reaching out this past week to legislators to share the negative impact of an income cap. Your advocacy makes a HUGE difference.

On page two, in Section 1(a) you will see that a window of 120 days has been added during which time the TennCare Bureau has been directed to submit an amendment to the state's Section 1115 Waiver to the Centers for Medicare and Medicaid to create this program.

On page four, in Section 1(b)(3) children applying for or enrolled in Part A of the Katie Beckett Program are afforded the same appeal rights accorded all other TennCare applicants and enrollees.

On page four, in Section 1(b)(4) prior language read: "The bureau of TennCare is authorized to require parents or guardians of children enrolled in Part A of the program described in subdivision (a)(1) to purchase and maintain available private or employer-sponsored insurance, to the extent that it does not exceed five percent (5%) of gross income, and to establish buy-in or premium requirements, using a sliding fee scale based on parent or guardian income, to help offset state costs and ensure program sustainability." This has been changed.

The new amendment replaces the above language with the following: "May require parents of children enrolled in Part A of the program to purchase and maintain available private or employer-sponsored insurance that offers coverage for the child, and establish buy-in or premium requirements using a sliding scale based on parent income, to help offset state costs and ensure program sustainability."

Replacing "is authorized to require" with "May require" implies that purchasing and maintaining private or employer-based insurance may not necessarily become a requirement. However, more likely it opens up further room for this to be developed and implemented. 

It is our position that the financial costs for parents to purchase and maintain private or employer-based insurance for their child enrolled in a Katie Beckett Program must be reasonable and affordable in order to address the extreme financial burden of caring for a child with a long-term disability or complex medical needs, which is part of the intent of this program.

On page five, in Section 1 (c)(5) children applying for or enrolled in Part B of the Katie Beckett Program are afforded the same appeal rights accorded all other TennCare and Department of Intellectual and Developmental Disabilities applicants and enrollees.

Also added in the new amendment on page five in Section 1 (e) are annual reporting requirements. This will require the Bureau of TennCare and the Department of Intellectual and Developmental Disabilities to issue a joint report to the House and Senate on the status of the Katie Beckett Program including information about the number of children served, services provided, income range of the parents of the children participating and the program costs.

We hope this is a helpful update! A number of legislative committees will need to hear and pass this bill before it is voted on by the General Assembly. Were it to pass, a budget amendment would be needed to fund the legislation. We will do our best to keep you updated with its progress.

~Public Policy Team

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