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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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COVID-19 Update

Important Reintegration Information

The safety and health of our patients, students, families, and staff is our number one priority at Siskin Children's Institute. Please review the following regarding our reintegration plan and additional information on how we are protecting our families and staff during this time.

All programs and services are currently open and ready to serve.


The Early Learning Center reopened for business on Monday, June 15, 2020.
Temporary business hours for the ELC are from 8:00a to 5:00p.

The Early Learning Center has enhanced safety and health measures to help mitigate the potential risk of COVID-19. These enhanced safety measures were developed based on the guidance provided by the CDC as well as other guidelines issued at the state and local levels. All parents and families will receive packets with detailed information regarding our COVID-19 safety measures to protect their children and our staff.

Developmental Pediatrics and Therapy Services in both our Chattanooga and Nashville locations are now allowing limited in-person services by appointment only. Walk-ins are currently not available and access to our clinics is only allowed if you have passed our comprehensive screening process, detailed in patient appointment communications. If you have questions or need to schedule an appointment please call. 

Telehealth Services Available – We continue to provide medical and therapy services, including applied behavior analysis and home and community-based early intervention therapy, via tele-health during this time. Contact your provider for a referral today or visit our telehealth page for more information.

Institute Leadership
, with the guidance of our medical and therapy teams, has implemented a for precautionary/sanitation protocols, staff training, and patient traffic flow measures to protect our patients, students, families, and staff. This is a multi-phased approach to mitigate risks associated with COVID-19. Phase one of this plan has already been executed and all patients, families, and staff have been notified or trained. We will announce enhancements to our reintegration plan over the next weeks and months based on the guidance provided by local and state health departments and the CDC. 


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, click HERE.


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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If you would like to make a donation to support Siskin Children's Institute during this unprecedented time please click HERE.