CHILDREN’S CHAT 

Coming Soon to Tennessee: The Katie Beckett Waiver Program

February 26, 2020 // Author: Donna DeStefano, Assistant Executive Director, Tennessee Disability Coalition

What is a Katie Beckett Waiver Program?

Katie Beckett was a little girl living with her family in Iowa. At five-months old, she contracted a devastating brain infection that resulted in her being paralyzed, on a ventilator, and in the hospital. Katie’s middle-class family had a million dollars of insurance, but that was soon exhausted. She went on Iowa’s Medicaid Program that paid for her hospitalization for nearly three years. Katie improved enough to live with her family, but Medicaid would only pay for her care if she remained in a hospital or nursing home – at much greater cost to taxpayers. President Reagan created the Katie Beckett Waiver, which allowed Katie, and children like her, to receive their care at home, while retaining their Medicaid coverage, regardless of their parents’ income.

The Role of Tennessee’s Family Leaders

Tennessee’s middle-income families of children with disabilities and/or complex medical needs who have private insurance struggle to meet their children’s needs. They deplete any resources they have paying out of pocket for co-pays and services that are not covered by private insurance. Some families have been forced to give up custody of their child or put them in an institution because they cannot afford their care. If families do not have private insurance, they are often left without options for care for their child with special health care needs. Many of these families have been advocating hard for their children. They have shared their stories and struggles with each other, with advocacy organizations like the Tennessee Disability Coalition, with their legislators, and the media. Their focus has been on creating a Katie Beckett Program here in Tennessee.

A Breakthrough

In 2019, the Tennessee General Assembly passed legislation directing the creation of a Katie Beckett Program to address the needs of Tennessee’s children under age 18 with disabilities and/or complex medical needs who are not Medicaid eligible because of their parents’ income or assets. On May 24th, 2019, Governor Bill Lee signed the legislation into law. TennCare, Tennessee’s Medicaid Agency, submitted a waiver amendment to The Centers for Medicare & Medicaid Services (CMS) to establish the new Katie Beckett Program.  As of this writing, the State awaits approval, with the expectation that this will come soon and they can then implement the new program.

On the Horizon 

Tennessee’s Katie Beckett Program will have two parts:

  • Part A for those with the most significant disabilities or complex medical needs
  • Part B designed as a Medicaid diversion program

TennCare has set up a website with information on the Katie Beckett Program that can be accessed at https://www.tn.gov/tenncare/long-term-services-supports/katie-beckett-waiver.html. Below is additional information on Parts A and B:

Part A is designed for 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) will run Part B.

As TennCare developed the request to CMS, parents, advocates, and health care professionals provided input about the program including their concerns about the program’s design. Families were particularly concerned about program eligibility— who will qualify (for both Parts A and B) and how children will be prioritized for enrollment in Part A.  Because of the families’ concerns, TennCare convened an ad hoc Katie Beckett Technical Advisory Group. Participants provided recommendations regarding the development of medical (or level of care) eligibility criteria for enrollment into both Parts A and B of the new program and prioritization for enrollment into Part A. The group consisted of complex care pediatric experts, representatives from advocacy groups, and parents of children with complex medical needs.

While awaiting CMS approval of the Waiver Amendment, TennCare has been working collaboratively with DIDD, contractors and external stakeholders to prepare for program implementation. If you want to know when the program is approved and will begin, you can give your name and information to DIDD by contacting your DIDD Regional Office:

West Tennessee Regional Office: (866) 372-5709

Middle Tennessee Regional Office: (800) 654-4839

East Tennessee Regional Office: (888) 531-9876

Recommendations

As the Katie Beckett Program is implemented in Tennessee, families and advocates recommend that:

  • TennCare convene an ongoing stakeholder group to advise on Katie Beckett implementation. In particular, the level of care criteria and priority list will need to be revisited as implementation moves forward. Families, health care providers and other stakeholders will be valuable in implementing the best program possible.
  • TennCare allow family members to be compensated for providing care to their children with disabilities and/or complex medical needs. In many states a custodial parent who is required to stay at home to provide care, rather than earn income outside the home, may be compensated for being the child’s caregiver as an alternative to a hired nurse or caregiver. Allowing paid family caregivers would help assure quality care, reduce the economic burden of disability on the family, and would help alleviate the direct support workforce shortage.

Donna DeStefano is the Assistant Executive Director of the Tennessee Disability Coalition.