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Katie Beckett Waiver

March 15th, 2019

In 1981, President Reagan personally intervened when a mom reached out to him to share the story of her daughter, Katie Beckett. Katie contracted viral encephalitis at just five months old and spent the better part of three years in an Iowa hospital. Katie had Medicaid that covered her while she was an inpatient, however, when she was ready to go home, she was dropped from Medicaid simply because her parents made too much money. Therefore, their only option was to remain in the hospital. 

Impassioned that any parent could face this situation, President Reagan created the Katie Beckett Waiver with help from Congress through the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) which allowed Katie, and children like her, to retain their Medicaid coverage regardless of their parent’s income. This gives parents the option of taking care of their children at home instead of them remaining hospitalized. 

Currently, there is no program in Tennessee designed as a pathway to Medicaid for children with complex medical needs and long-term disabilities. Lacking options, some families have been forced to give up custody of their child just to get them the care they need. Other parents have gotten divorced just to reduce their household income and make their child eligible for TennCare. Some desperate families have permanently moved from Tennessee to a state with a program that covers their child. 

A Katie Beckett/TERFA Program in Tennessee would make Medicaid benefits available to children (age 18 or under) who qualify with a diagnosis of complex medical needs or a long-term disability. Representative Sam Whitson and Senator Kerry Roberts have filed a bill HB0498/SB0476 and are working on additional language to create this program through legislative action. Governor Bill Lee could include this in his budget proposal or our state legislature could include it. 

Do you have a child, or know of a child, with complex medical needs or a long-term disability that has been directly affected by Tennessee’s lack of coverage for children of middle-income families? Tell your story, and tell your legislators.

Join the movement alongside Family Voices of Tennessee at: http://www.facebook.com/FamilyVoicesofTN/ 

To share your story directly, please call: (615) 383-9442 or email: katiebeckett@tndisability.org

To contact our Siskin Children’s Institute Family Voices Coordinator, Lisa Spurlock, please call: (423) 648-1700 or email: lisa.spurlock@siskin.org 

Check out our local NewsChannel 9 station’s coverage of the Katie Beckett Waiver here.