Jonesborough mother, daughter testify to House committee about need for Katie Beckett waiver

Zach Vance • Updated Mar 15, 2019 at 8:55 AM

A single mother and daughter from Jonesborough traveled to Nashville this week to testify before a House subcommittee in support of legislation to expand TennCare coverage to disabled children who are currently ineligible because of their parents’ income.

Michelle Gross, with her 6-year-old daughter Asher by her side, told TennCare Subcommittee members, including Chairman Matthew Hill, R-Jonesborough, how she works one night a week as a certified nursing assistant just so her income remains below the federal poverty level and Asher can remain eligible for TennCare coverage.

Asher was born with a rare chromosomal translocation, as well as a cleft lip and cleft palate.

“Though a Katie Beckett program may not change Asher’s medical coverage, it would provide vital support for some of the other children we know,” Gross said.

“We are not wanting to take advantage of a system. We are seeking to supplement our children's needs. We work. We pay insurance premiums, deductibles and copays, but that does not provide adequate coverage for complex medical and long-term disability needs.

“The types of needs these families are desperately needing are rarely found in commercial insurance benefits, such as intensive ongoing therapy, feeding supplies, mobility equipment, & skilled in-home nursing.”

Another mother, Rosalie Howes of Cookeville, told the subcommittee the dilemma she and her husband confront as they contemplate divorce just so their 7-year-old son, Hiram, could be eligible for TennCare.

“We realized our only option was that we needed to separate, because with my husband out of the house, my son would qualify for the care that he needed,” Howes said, holding back tears.

“This waiver would help families like mine so much. We would be able to stay together as a family and not have my husband live somewhere else. He’d be able to stay and tuck his kids in at night and read them stories.”

The testimonies of Gross and Howes came in support of an amendment, introduced by Rep. Sam Whitson, R-Franklin, that unveiled the details of a two-tiered waiver program, commonly known as a Katie Beckett waiver.

However, that program comes with a high-price tag that has some legislators concerned.

Based on the Tennessee Disability Coalition’s estimate of 3,679 disabled children needing supplemental coverage, TennCare Director Gabe Roberts estimated the program will cost the state about $43 million per year.

Whitson’s proposal, which received input from TennCare and the Disability Coalition, would establish two coverage groups, Part A and Part B.

Part A would model a traditional Katie Beckett program by offering full TennCare eligibility to children with the highest medical needs, regardless of parent’s income. That population is estimated to be around 10 percent, or 368, of the 3,679 children.

For children to be eligible for Part A, parents must maintain private or employer-based insurance — as long as the cost of it does not exceed 5 percent of their total gross income — and pay a sliding-scale premium to TennCare to offset the cost of the program.

Roberts did express concern at the 5 percent cap, citing statistics that show an average family of four in Tennessee makes $48,000 a year and pays roughly 12 percent, or $5,600, in out-of-pocket insurance expenses.

Type B would be a “Medicaid diversion plan” offering a capped package of $15,000 worth of “wraparound” services, such as therapies and medical supplies, to children in an effort to keep them from obtaining full TennCare eligibility. Type B would also provide premium assistance on a sliding-fee scale.

Rep. Jason Zachary, R-Knoxville, expressed concern about the state already anticipating $100 million in additional TennCare costs this year from a growing share of the Federal Medical Assistance Percentage and inflation.

“We already have a program in need of $100 million additional dollars. So to begin a program with a universe that is as expansive as we’re talking about right here, I don’t see how we can do that and be fair to TennCare and all parties involved,” Zachary said.

“Because those resources would have to come from somewhere else to come into the (Katie Beckett) program, and would maybe go to families who, if a universe was constricted, could actually afford services, but would jump on a program because they qualify.”

Following those comments, Zachary said he plans to introduce an amendment at the TennCare Subcommittee’s March 20 hearing to cap the program at 500 percent of the federal poverty level, or around $128,750 for a family of four.

Hill, a cosponsor of the bill, did not hide his dissatisfaction for capping income as part of eligibility.

“It is not my intention to support a piece of legislation that caps anything. We have 3,600 children and 3,600 families that are coming to their government, to the state of Tennessee, and they are begging for help. Here’s the secret. We have the resources. Do we have the will? I do not in any way support capping this,” Hill said.

As time ran out, Hill said his subcommittee would hear Zachary’s amendment at its March 20 meeting.

Editor’s Note: A previous version of this story stated Michelle Gross worked as a nurse. She is actually a certified nursing assistant, or CNA. 

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