Why is Tennessee’s Katie Beckett Program so essential?

December 2021 // Heavyn Jennings

The Necessity 

Tennessee’s Katie Beckett program is a Medicaid waiver for children under 18 years old with special healthcare needs who are ineligible for other Medicaid categories due to their parental income being over the limits. These children have complex disabilities and medical conditions. Their families need help paying for medical services. These families often have private insurance, but it usually has limits on what it will cover. These children need extra support and without the support they would be institutionalized. Katie Beckett programs give them the chance to stay home and receive the services they need there. This allows the children to retain the natural supports found in the home such as familial presence and social interactions which can have positive effects on child well-being and development.  

The first Katie Beckett waiver was implemented in 1981 after President Ronald Reagan was inspired by the story of Katie Beckett. She was a young girl in Iowa who developed a brain infection when she was 5 months old which led to her being paralyzed and spending three years in the hospital. While she was hospitalized, she was able to get Medicaid coverage. After three years, her condition became stable enough for her to return home. If she returned home, she would lose Medicaid coverage due to her parents’ income being over the limit for other Medicaid coverage. Additionally, her family had reached the million-dollar cap for their private insurance. This was a devastating situation. After hearing the story, the Reagan administration developed the Katie Beckett waiver which allowed state Medicaid programs to make an exception to its eligibility rules for children like Katie. This allowed them to receive care at home AND keep Medicaid coverage. Katie’s home state, Iowa, implemented the first Katie Beckett Waiver. 

Last year, Tennessee became the 50th state to implement a Katie Beckett waiver. Before Tennessee’s Katie Beckett program was implemented, these children were generally excluded from TennCare coverage unless they were institutionalized. If families wanted to keep their children at home and/or get them TennCare coverage, they had to find alternative solutions which often included selling valuables and incurring expensive medical bills. We are proud of Tennessee for joining the rest of the United States and supporting children with special healthcare needs. 

The Benefits 

Part A  

Part A is for children who need institutional level of care, these are the most medically needy children. There are 300 slots, and the child must maintain private insurance and sometimes pay a premium. The children who qualify for part A are so medically vulnerable that they qualify for care in a nursing home or other skilled facility, but the family wants to care for them at home. It is also less expensive to care for them at home.  

Children in Part A get full TennCare Benefits. This means they have EPSDT protections. EPSDT is a set of federal guidelines which say state Medicaid programs must cover all services which are deemed medically necessary for children under 21. This includes things like home health care, private duty nursing, therapies, and even transportation to medical appointments. There are a few exceptions, but families can appeal denials. TennCare will also assist in paying for the child’s private insurance co-pays and deductibles 

In addition to TennCare, children in Part A can get extra support to help their family meet their needs at home. These are called HCBS (Home and Community Based Services) or wraparound services. These extra supports include respite care, personal assistance, community transportation, assistive technology, home and vehicle modifications, and more. ​ Children can get up to $15,000 per year in these services. 

Part B Medicaid Diversion 

Part B is for children who are “at risk” of needing institutional level of care, but do not qualify for institutionalization yet. Some children who qualify for Part A may also be placed in Part B if Part A slots are unavailable. Part B has 2,700 total slots. There is no premium or private insurance requirement.  

As the name implies, children in Part B do not get TennCare benefits. This means they are unable to take advantage of EPSDT protections. Nonetheless, the child will get HCBS/wraparound services like those in Part A to help the family care for the child at home. This includes help paying for the child’s insurance premiums and paying for care the child needs that insurance doesn’t cover. Part B allows families to take advantage of a Health Reimbursement Account (HRA). This allows families to be reimbursed for medical services they paid out of pocket for based on IRS publication 502.  The total cost of wraparound services a child in Part B can get is $10,000 each year.  

Part C Continued Eligibility 

Part C is for children who are already on Medicaid and who qualify for institutional level of care. These children are losing Medicaid due to an increase in their parent’s income or assets. They qualify for Part A but can’t enroll because there is no available Part A slot. Part C allows them to continue getting Medicaid coverage while they wait for a Part A slot.​ There is no premium or private insurance requirement, but children in Part C must move to Part A once a slot is offered to them. Part C does not have a slot limit.  

Children in Part C will receive all the Medicaid benefits available to children enrolled in TennCare. This means they can take advantage of EPSDT protections just like in Part A. However, children in Part C will not receive any HCBS/wraparound services.  

To learn about more about eligibility and specific requirements, check out our previous webinars and informational flyer. Families can apply on or by phone at 855-259-0701. If you would like help with the application or appeals process, you can contact the Tennessee Justice Center at or toll-free at 1-877-608-1009.