The Tennessee Katie Beckett Legislation

By Allison Donald

Governor Bill Lee signed the Katie Beckett waiver allowing Tennessee to offer Medicaid to children who have disabilities on July 11, 2019. The waiver, regardless of the parent’s income, will keep youth with disabilities from being placed in an institution. 

This is a momentous victory for not only parents of children living with disabilities, but the children will be afforded the opportunity to live in an integrated community.  Before the passage of the Katie Beckett law in Tennessee, children with disabilities who require an institutional level of care, and who could be safely taken care of at home by their family with assistance, did not qualify for Medicaid if their parent’s income is over the limit set by the state. 

·       Katie Beckett Program Part A
Part A would establish a pathway to Medicaid services and essential wraparound home-and community-based services for children (under age 18) at home who qualify as disabled individuals under section 1614(a) of the Social Security Act, provided certain conditions are met, regardless of parent income and resources.

·       Part A authorizes the TennCare Bureau to require that parents of enrolled children purchase and maintain available private or employer-sponsored insurance if it does not exceed 5% of gross income. The bill amendment also authorizes TennCare to establish buy-in or premiums using a sliding fee scale based on parent or guardian income.

Part A authorizes the TennCare Bureau to require that parents of enrolled children purchase and maintain available private or employer-sponsored insurance if it does not exceed 5% of gross income. The bill amendment also authorizes TennCare to establish buy-in or premiums using a sliding fee scale based on parent or guardian income. The bill amendment establishes a priority enrollment for Part A for children with the most significant disabilities or complex medical needs whose families are most likely to be financially burdened by medical expenses.

·       Katie Beckett Program Part B
Part B is designed as a Medicaid diversion plan. The bill amendment authorizes the Tennessee Department of Intellectual and Developmental Disabilities to administer Part B. It would offer a capped package of essential wraparound services and supports as well as premium assistance on a sliding fee scale for children. Children enrolled in Part B would not be enrolled in full TennCare and Medicaid.

Eligibility for Part B is extended to children who are also “at risk of institutionalization” in these settings.

This victory was made possible by the hard work of the Tennessee Disability Coalition and the many parent advocates who took time out of their busy lives to advocate fiercely for their children. So many families traveled across the state, met with their legislators, and took action to make this possible. 

The Coalition and TJC have advocated for TN to adopt a Katie Beckett program for literally decades, and persistence pays off.   Tennessee we still have a long way to go, but this is a good start in our fight for access to affordable healthcare for all Tennesseans.

If your family may qualify for help under the Katie Beckett program, feel free to call TJC if you have questions or want to learn more (615-846-4711). Also, you can call your regional DIDD office West Tennessee Regional Office: (866) 372-5709.