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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.

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Institute Temporary Closing

IMPORTANT ANNOUNCEMENT

Siskin Children’s Institute has issued the following Health Advisory:

 

Ensuring the safety of the children we serve and our staff is our primary concern. In a moment where our community and nation is preparing for a potential outbreak of Coronavirus (COVID-19) the leadership of Siskin Children’s Institute has decided to close all of our programs, including the Siskin Center for Developmental Pediatrics, Early Learning Center, Home and Community-Based Early Intervention, Family Voices, and all Therapy Clinic Services including Occupational, Physical, Speech, and Applied Behavior Analysis.

 

Effective immediately Siskin Children's Institute will be closed to the public through Friday, April 24. 

Although closed to the public, there are critical aspects of our organization that will remain operational. We will be providing limited medical care, therapy services, ABA services, and home visiting services via tele-health.

 

Please be safe, follow safety protocols, wash your hands, and take care of your loved ones as we navigate through this challenging time.


For more information on how Siskin Children's Institute is addressing this health concern and links to important information locally, regionally, and nationally, including information about how to talk to your children about Coronavirus, and additional resources in the Chattanooga and Nashville areas, visit siskin.org/healthadvisory.


Prescription Refills or Questions? Click HERE for the Athena Patient Portal or Call the Nurse Line 423.490.7734. Please visit the Athena Patient Portal on our website and read our recently Updated Prescription Policy before calling the number above.


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