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Katie Beckett Waiver

What is it?

Tennessee lawmakers passed a bill that proposes to create a new program for children under age 18.  These are children who:

  • Have disabilities or complex medical needs, and
  • Do not qualify for Medicaid because of their parent’s income or assets (like bank accounts or other property).

The bill directs TennCare to ask the federal government to approve a program that would have 2 parts or groups.

Part A would serve children with the most significant disabilities or complex medical needs. These are children who would qualify for care in an institution but want care at home instead. Their parents’ income and assets would not be counted in determining their eligibility for Medicaid. If they qualify, they would receive full Medicaid benefits to help pay for care their private insurance doesn’t cover. They may also receive Home and Community Based Services (or HCBS) for other things they need that Medicaid and private insurance do not cover.  Parents may be required to purchase private insurance and pay premiums for Medicaid (on a sliding fee scale based on income) to help offset program costs.

Part B would also serve children with disabilities or complex medical needs.  But they may not qualify for care in an institution. Children in Part B would not be enrolled in Medicaid.  They would receive up to $10,000 per year in services to help them cover the cost of private insurance premiums and things their insurance does not cover.  The Department of Intellectual and Developmental Disabilities (DIDD) would run Part B.

The federal government could approve both parts, only one part, or ask us to make changes before they approve.

Who would qualify to enroll in the new program if it’s approved?

This program would serve children under age 18 who have disabilities or complex medical needs.  These are children who don’t qualify for Medicaid because of their parent’s income or assets.

How many people would be served in the new program?

We do not know how many children would qualify for and enroll in the program.  Nor do we know exactly how much it will cost to serve these children.

Lawmakers approved a set amount of money for the program. The funding they approved is based on serving up to 300 children in Part A and up to 2,700 children in Part B. That’s a total of up to 3,000 children.

If both parts of the program are approved, most of the children—up to 2,700 would be enrolled in Part B.  The approved funding would allow for each child to receive up to $10,000 in assistance.

No more than 300 of the children could be enrolled in Part A unless the cost of serving children in Part A is less than projected in the approved program budget. These are children with the most significant disabilities or complex medical needs.  If the cost of serving children in Part A is higher than projected in the approved program budget, then we would not be able to serve as many children.  We can only serve as many children as the funding will cover.  

Over time, we’ll know more about how many children will enroll and the services they will need.  Then, we can adjust the program to use the funding we have in the best way to meet the needs of as many children and families as we can.

When would the new Katie Beckett Program start?

The earliest we expect people could begin enrolling in the new program is 2020.  That’s because there are many steps we must to take to start a Katie Beckett Program.

First, the bill must become law.  That happens when the Governor signs it.

Then, we must get approval from the federal government to create the program.  We need their approval to receive the roughly 2/3 federal funding for the program we are asking them to provide.

To get federal approval, we must make a request—called a waiver amendment.  TennCare has 120 days to work with DIDD to submit a waiver amendment once the new law takes effect.

We will use that time to gather input from families of children who may qualify for the program.  We want to make sure we understand the kinds of services people need most.

Once we submit the waiver amendment, we do not know how long it will take the federal government to review and decide if they will approve it. We will use that time to get ready to start the program if it is approved.

We cannot begin enrolling people in the new program until it is approved.

When and how can people sign up for the new program?

First, we have to make sure the program is approved.  In the meantime, TennCare and DIDD are working on a process to begin collecting interest forms.

For now, if you want to be sure we tell you when sign-ups start, you can give your name and information to DIDD. You can call your DIDD Regional Office at:

West Tennessee Regional Office: 
(866) 372-5709

Middle Tennessee Regional Office:
(800) 654-4839

East Tennessee Regional Office:
(888) 531-9876

Not everyone who signs up may qualify to enroll. We will enroll as many eligible children as program funding will cover.

How can you get more information?

To stay up to date on the Katie Beckett Program as we move forward, visit: