Katie Beckett program for kids with disabilities falls short in first year

By: - September 27, 2021 5:01 am
Rep. John Ragan, R-Oak Ridge, center, and Sen. Kerry Roberts, right, chair the Joint Government Operations Committee. (Photo: John Partipilo)

Sen. Kerry Roberts, right, has expressed concern about the pace of enrollment in a program designed to help Tennesseans with medically fragile or disabled children. (Photo: John Partipilo)

A program for Tennessee children with disabilities or complex medical needs has enrolled fewer than 1,000 children as it nears the end of its first year in operation, far short of the 3,000 children that state officials originally estimated would be served annually.

The Katie Beckett program was signed into law by Gov. Bill Lee in 2019,  approved by federal officials in November 2020 and — by last February — had enrolled nearly 300 children, but then its pace slowed.

The program steers thousands of dollars to families who care for medically fragile or severely disabled kids at home, but make too much money to qualify for Medicaid. Tennessee was one of the last states in the country to implement the program

The program offers two level of services: children enrolled in Part A get all services covered by TennCare in addition to intensive at-home services – nursing care, ventilator assistance, therapy and other service for kids with such debilitating conditions they could otherwise qualify for a nursing home care.  Children who need a lower level of services are enrolled in Part B, which offers some in-home care but does not enroll kids in Medicaid.

Thus far, 67 children are enrolled in Part A, although there are 300 slots available, and 915 enrolled in Part B, which has 2000 available spots.

Fewer than 1,000 of the families and kids eligible for the Katie Beckett program have enrolled and Sen. Kerry Roberts is questioning the pace of enrollment: “If you’re a family who has waited on this for years, I wouldn’t want us to be the problem here.”

Lawmakers and advocates for kids with disabilities are questioning why more children have not yet been enrolled program that was allocated $77 million annually, but has spent just $19 million thus far.

“These families have been advocating for this for years and we had a pretty good sense, a really good sense, of how many families wanted to take advantage of it and that sort of guided the slots that were made available in these various parts,” Sen. Kerry Roberts, R-Springfield, who co-sponsored the Katie Beckett legislation said while questioning TennCare officials during a legislative hearing earlier this month.

“I guess my concern would be, are we moving too cautiously,” Roberts said. “Are we having people who are waiting or are people being too slow to apply? If you’re a family who has waited on this for years, I wouldn’t want us to be the problem here.”

TennCare Director Stephen Smith defended the enrollment numbers, saying agency officials were carefully weighing the needs of applicants with the program’s fixed budget.

Stephen Smith, director of TennCare (Photo: Tennessee.gov)
Stephen Smith, director of TennCare (Photo: Tennessee.gov)

“We’re being very cautious to make sure that we are enrolling people into Part A in a manner where we’re not going to exceed our budget,” Smith said.

“That doesn’t mean they’re not receiving services,” Smith said.  “What’s happening is we have individuals being enrolled into Part B immediately as they await being included in Part A.  As we now see where we are, we can make adjustments.”

Smith said the agency is receiving about 150 referrals for the program each month.

Some children with the most complex medical needs are being enrolled in the secondary tier of services — Part B — which does not include Medicaid but does include some home care services. TennCare is in the process of shifting more than 100 of these children from the lower tier to the Part A, the higher tier of care, a spokesman said.

Smith also said the agency had no way of knowing the actual demand for the program, relying instead on estimates provided by the Tennessee Disability Coalition while the legislation was still being drafted.

Carole Westlake, executive director for Tennessee Disability Coalition said last week that her group was “very concerned” about the lower-than-projected enrollment numbers.

Many of these families get to this waiting list and feel like why should they continue to apply? These families talk to each other. People are getting discouraged.

– Carol Westlake, Executive Director, Tennessee Disability Coalition

Westlake’s group is hearing from families steered into the lower tier of care – Part B – who are struggling to get the services that their children need because they cannot access a higher level of care.

Those families, she said, are receiving letters saying their children qualifies for the Part A tier of care, but are being enrolled in Part B and put on a waiting list for more intensive care.

Instead of access to all Medicaid benefits — including doctors visits, hospital care, private duty nurses, physical therapy and other services — the families on Part B are given “wrap around” services at home that include adaptive equipment and home medical supplies.

“Many of these families get to this waiting list and feel like why should they continue to apply?,” Westlake said. “These families talk to each other. People are getting discouraged.”

TennCare officials, Westlake noted, were originally concerned that estimates of 3,000 children needing Katie Beckett services was a “low ball estimate.”

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Anita Wadhwani
Anita Wadhwani

Anita Wadhwani is a senior reporter for the Tennessee Lookout. The Tennessee AP Broadcasters and Media (TAPME) named her Journalist of the Year in 2019 as well as giving her the Malcolm Law Award for Investigative Journalism. Wadhwani is formerly an investigative reporter with The Tennessean who focused on the impact of public policies on the people and places across Tennessee. She is a graduate of Columbia University in New York and the University of California at Berkeley School of Journalism. Wadhwani lives in Nashville with her partner and two children.