Breaking Ground 97 - Tennesseans of All Stripes Come together for Children with Significant Needs

by Lauren Pearcy, Public Policy Director, Council on Developmental Disabilities

Watching the effort to develop a “Katie Beckett” program in Tennessee is an experience I will never forget. As Public Policy Director for the TN Council on Developmental Disabilities, I am  familiar with how policy is developed. It can happen a million different ways, but there are generally key factors common to success: data, political will, and human stories. Advocacy in some form shepherds the process along. Although I do not consider myself jaded, I have come to accept the fact that many proposals – even those with good stories, good data, and good advocacy – don’t make it through the policy process. That’s why it has been extraordinary to watch the legislation that passed this year to create a Katie Beckett program. It showed how groups can come together to solve a problem using the policy process.

The history behind the term “Katie Beckett”

The term “Katie Beckett” is short for Medicaid programs for children with significant disabilities and healthcare needs, regardless of their family’s income. The term was coined in the 1980s after Katie Beckett, a little girl who used a ventilator and lived her first three years in a hospital. The Beckett family helped reveal a public policy problem: private insurance would not cover the supports Katie needed if her family wanted to care for her at home, and because her family’s income was too high, Medicaid would only cover the cost of services and supports that took place at a hospital. Through incredible advocacy via their Congressional representatives and eventually President Ronald Reagan, the Beckett family prompted a change to federal law that allows states to create programs to support children like Katie at home. Read about the programs that exist all over the country today, thanks to this policy change, here:

Katie Beckett Legislation in Tennessee: A case study in effective advocacy

During the 111th General Assembly, Representative Sam Whitson (R-Franklin) and Senator Kerry Roberts (R-Springfield) introduced legislation creating a dedicated Katie Beckett program in Tennessee. Previously, there was no waiver program with services just for children with significant disabilities and medical needs.  Whitson, whose granddaughter has a disability, said he considers it “the honor of a lifetime” to be able to introduce and support the legislation.

Meanwhile, the Tennessee Disability Coalition helped organize those key ingredients for policy change: data, political will, and human stories told by families. Throughout the month of March, legislative hearings held discussion about the bill’s details. Who will the program cover?  How much will it cost? How much detail will be included in the bill, versus leaving details to be decided later through rules and federal documents?

At the beginning of each hearing, families testified about what it’s like to care for a child with complex medical needs. They shared both heartwarming and heartbreaking stories that brought this legislation to life. As the chairman of one subcommittee put it, “I don’t know how this is possible, but my heart hurts and I’m smiling at the same time.” The director of TennCare later repeated that thought, letting his voice trail off and then apologizing that he went off script. Unguarded moments like those marked the hearings.

As the state’s policymakers and disability leaders discussed these complex issues and tough questions (i.e. how to decide who can enroll), it was striking how each one showed respect for their colleagues’ differing views,  impressive understanding of the technical details, and real willingness to find a solution. When the bill passed out of the first subcommittee, the room erupted into applause, which is against the rules of legislative hearings. The chairman pointed this out and then added, “and I would not change a thing.” The humanity of everyone involved – which is all too often forgotten during tough debates – was on full display.

Details of the Legislation

Two state agencies will share responsibility for the Katie Beckett law program: the Division of TennCare (the State Medicaid Agency in Tennessee) and the Department of Intellectual and Developmental Disabilities (DIDD). The bill requires TennCare and DIDD to work together to design and run the programs. It also creates two different programs for children with different levels of need:

Katie Beckett Program Part A

Part A would offer a way to qualify for Medicaid services, including home-and community-based services, for children (under age 18), no matter how much money their parents make. Details about exactly which children can enroll will be decided when the official proposal is sent to the federal government (more on that below). Part A is designed to help children with the most significant disabilities or complex medical needs whose families are most likely to have severe financial problems because of medical costs.

Katie Beckett Program Part B

Part B is designed as a Medicaid diversion plan, which means that children in Part B are not enrolled in Medicaid. Part B would be administered by the Tennessee Department of Intellectual and Developmental Disabilities, offering benefits known as “wraparounds” to offer much-needed services for child health and family stability. These are the long-term supports and services traditionally provided as home-and community-based care. The cost of these services would be capped at $15,000 per year, per child. Part B is designed for children who won’t be in Part A, but still have needs Medicaid terms “at risk of institutionalization.”

What’s Next

After the bill is signed by Governor Lee, TennCare and DIDD will design the program and submit it to the federal government, the Centers for Medicare and Medicaid Services (CMS), for approval. The program design will include details such as what kind of services are offered and who will be eligible. TennCare and CMS may have to work through different ideas about the details, which could result in more changes. Public comment periods will be part of the process; this is when you can say what you think about the plan.

The passage of Katie Beckett legislation is a proud moment for Tennessee. I’ve often thought to myself that it could be a case study in how grassroots (“bottom-up”) policy change can meet with buy-in from the highest levels of our government. 

Be sure to sign up on our website for the Council’s Public Policy Newsletter to track the next steps for this bill. 

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