Implementing Katie Beckett
states that utilize the HCBS waivers.
Although TennCare closed enrollment in 2016 to three Home and Community-Based Services waivers offering programs for those with disabilities, it created a new long-term services program for people with intellectual and developmental disabilities called Employment and Community First CHOICES.
Parents’ income is not counted when determining a child’s eligibility for the CHOICES program if the child’s disabilities are severe enough to necessitate the high level of care typically provided in a hospital, skilled nursing facility or intermediate care facility.
Still, some middle- and high-income families, like the Kauffmans, have found themselves in limbo.
That’s in part because state funding is enough to support only a limited number of children within the Essential Family Supports benefit group, and, with enrollment priority given to those who need assistance to get or keep a job, the program is full except for extreme cases.
As of Oct. 5, there were 811 individuals enrolled in the Essential Family Supports benefit group, which was created for families caring at home for a child under the age of 21 who has an intellectual or developmental disability, according to the TennCare Bureau.
Disability advocates say that because of the program’s focus on employment, and not on families with young children, it does not address the hardships the Katie Beckett program was intended to alleviate. Under Section 134 of the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982, the Katie Beckett provision allows states to make Medicaid benefits available to children with disabilities who would not ordinarily be eligible because their parents’ income or resources are too high. States have significant flexibility in how they implement the option. They can either establish their Katie Beckett program through their Medicaid state plan — in Tennessee that would be TennCare — or through a home- and community-based services (HCBS) waiver. States consider the following points when choosing between the TEFRA option and the HCBS waiver option for covering children with disabilities, according to a report by the U.S. Department of Health and Human Services.
First, states may not impose enrollment caps under the TEFRA option, as they can under the HCBS waiver option. If elected, the TEFRA option must be available to anyone who qualifies anywhere in the state.
Second, states must provide to children eligible under both the TEFRA option and the HCBS waiver option the same early, periodic, screening, diagnosis and treatment benefits provided to all other Medicaid children in the state. However, the HCBS option allows states to offer additional services of a nonmedical nature.
Finally, states may impose a share-ofcost obligation on children in an HCBS waiver program but not on children eligible under the TEFRA option.
“I can say with confidence there is no program in Tennessee designed as a pathway to the Medicaid program for children with long-term disabilities or complex medical needs,” said Sarah Sampson, deputy director of the Tennessee Disability Coalition.
Roberts said while he was moved by the story about the Kauffmans — who are his constituents — he wanted to talk with state officials to understand the scope of the issue.
“I think that it’s worthy of a deeper look,” he said, adding that he is interested in how other states have handled the issue.