What Does the Katie Beckett Program Mean for Children and Families?

/ November 17, 2020

By Cara Kumari

Editor’s Note: The program described below is for children under 18 and is not directly related to employment of people with disabilities, but I believe this information is extremely important for families of children with disabilities.  If families and children are able to get the resources and supports they need early on, before and during the time children are in school, those children may come out better prepared for employment as they exit school.

For a more than a year and a half, there’s been a lot of talk about bringing a Katie Beckett Waiver Program to Tennessee.  During the 2019 General Assembly, families and their children with intellectual and developmental disabilities were frequent visitors to Capitol Hill, as the parents advocated for a program dedicated to providing Medicaid services and supports for their child. After the law passed, the Department of Intellectual and Developmental Disabilities and TennCare worked with families, advocates and other stakeholders to develop a proposed two-part program and submit it the federal government for approval in September 2019.

While waiting for approval from the federal government, DIDD and TennCare worked to develop systems, hire and train case managers, and collaborate with medical experts and families on child-specific criteria for levels of care for the program. Finally, on Nov. 2, 2020, Tennessee received the news it had been waiting to hear: that Tennessee’s Katie Beckett Program had received approval from the Centers for Medicare and Medicaid Services.  DIDD and TennCare announced that families can begin to apply on Monday, Nov. 23, 2020.

First, I want to start off with a bit of background on the Katie Beckett Program.  This is a program for children with disabilities and/or complex medical needs under the age of 18.  These children would qualify for Medicaid/TennCare if not for their parents’ income and assets.  In other words, their parents make too much money to be financially eligible for Medicaid services.  These families often have private insurance, but Medicaid covers certain services needed by some children that aren’t covered by private insurance.  The goal of the Katie Beckett Program is to provide a pathway to Medicaid eligibility for children with significant disabilities and an innovative, new way for other families to “fill the gap” between a child’s needs and what insurance will cover.

Second, you’ll hear a lot about Part A and Part B when talking about the Katie Beckett Program.  There are differences between the two parts.

  • Part A is for children with the most significant disabilities or complex medical needs. This will provide them with Medicaid services such as home health, private duty nursing, therapies and durable medical supplies, in addition to home and community-based services to help meet a child’s medical needs and sustain family caregiving.  It’s expected that with the current funding, the state can serve up to 300 children in Part A.
  • Part B is what’s called a Medicaid diversion program. Children enrolled in Part B will not receive Medicaid services.  Rather, they will receive up to $10,000 annually to help families cover the out-of-pocket costs associated with caring for their child.  The key to Part B is flexibility: Families can choose from a variety of ways to spend the money—from premium assistance in paying for their private insurance to a health savings account type program to home and community-based services.  The goal is to allow families to direct the funds in a manner where they will receive the most financial, physical and emotional support. Based on current funding, the state expects to serve 2,700 children in Part B.

One of the biggest questions we get asked is “What makes a child eligible for Part A and what makes a child eligible for Part B?”  Tennessee had to create criteria specific to children to answer that question.  Based on Tennessee’s Katie Beckett law, Part A is reserved for children with the most significant disabilities or complex medical needs, who meet what’s called “institutional level of care.”  To help TennCare and DIDD determine that criteria, the two agencies convened a Technical Advisory Group made up of pediatric medical experts dedicated to complex care, families who had advocated for the law, behavioral health experts, and advocacy groups.  The end result of these meetings was the development of the following Tiers for Part A:

  • Tier 1-Medical: Children who have very significant and complex medical needs.
  • Tier 1-Behavioral: Children who have intellectual disabilities or autism and very severe behavioral health needs.
  • Tier 2: Children who have significant medical needs, children with intellectual disabilities with multiple substantial functional limitations, or children with co-occurring disabilities and behavioral health needs.

For Part B, a child must meet “at-risk level of care,” which means the child has an intellectual or developmental disability and requires assistance from others, or the child has a medical diagnosis and requires skilled interventions.

This is just an overview of these levels of care.  The full guide and more details about the different criteria can be found in this guide.

As we move quickly towards Nov. 23, we do expect a large volume of self-referral forms to be completed in the first day.  We understand people have been waiting for a long time for this program to start, and we are excited to begin assisting families with applying and enrolling.  Depending on how many self-referral forms we receive, it may take some time for a Katie Beckett case manager from DIDD to contact you to set up an assessment. We will work through the applications as quickly as we can, in the order we receive them.  It’s easy to preach patience but we understand that it’s hard to practice when so many families have waited for so long. However, please know we will be working as hard and as quickly as we can to make sure eligible families can have access to benefits.

We hope you will continue to connect with us through our social media pages as we post program updates, and the DIDD and TennCare Katie Beckett pages will be updated frequently to provide resources and documents.  We are excited that the day so many people have been waiting for is almost here, and we look forward to working with families to support their children and help them navigate this new program and all it has to offer.  DIDD plans to add a recording of this week’s webinar with specifics about applying for the Katie Beckett Program very soon on its webpage.

I want to thank Cara for her swift response to my request for a blog post on the Katie Beckett Program. I know many families and advocates have pressed Tennessee for years to develop such a program, and we are all anxious for families to begin to enroll. As DIDD Commissioner Brad Turner mentioned during budget hearings for his department recently, this program will provide much-needed relief from the financial pressures of caring for a child with significant disabilities and will save marriages, because in the past, couples actually divorced in order for their son or daughter to be able to receive needed Medicaid services.

So, I want to thank all of you who had a hand in making this program a reality in our state. I want to thank the families who were willing to publicly share their struggles and were willing to bring their children to Capitol Hill, the children who had to sit through hearings and meetings with legislators, the advocacy organizations that coordinated the campaigns, the legislators who heard the pleas and responded, Gov. Bill Lee, who signed the legislation, the health care providers who lent their expertise to crafting the criteria, and to DIDD and TennCare for all the work they’ve done in incorporating stakeholder input and laying the groundwork for implementation. This is a big deal for our families, and I appreciate everyone who had a part.

Cara Kumari smilingCara Kumari is the assistant commissioner of Communications and External Affairs for DIDD.  In her role, she oversees DIDD’s internal and external communications efforts for the state’s HCBS waivers, Katie Beckett Program, and the Tennessee Early Intervention System.  Prior to joining DIDD seven years ago, she spent more than a decade in TV news as a state government reporter in Nashville, Kansas, Arkansas and Missouri.  She is a proud graduate of the University of Missouri School of Journalism.

November 17, 2020

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