Little Lobbyists Statement Opposing Medicaid Block Grants

Little Lobbyists strongly opposes the state of Tennessee’s proposal to block grant Medicaid. On May 29, 2019, the Tennessee state legislature passed a bill requiring the governor to seek federal approval for a waiver to convert much of the federal funding for its Medicaid program into a block grant. This waiver proposal, released by the Governor this September, would limit the funding Tennessee receives to a predetermined set amount from the federal government – regardless of how much is actually needed by Medicaid recipients in the state. This limit would negatively impact 1.4 million Tennesseans currently covered by TennCare, the state’s Medicaid program. (1) Jeopardizing the health care and services for poor, elderly, and disabled Tennesseans; including children with complex medical needs and disabilities.

In addition to a block grant for Medicaid, this proposal gives the state broad authority to drastically limit the health care available to Medicaid recipients by allowing TennCare to change or reduce covered services without federal oversight. Therefore, if Tennessee only receives a set amount of funding for Medicaid through a block grant and the actual costs exceed that amount, the state would have to choose to make up the difference themselves or could instead limit health care with serious and sometimes deadly consequences. There could be a return to health care rationing, with Medicaid only permitting 14 days of inpatient hospital stays per year, potentially fatal for many children with complex medical needs who frequently require longer hospitalizations. Additionally, this proposal aims to create so-called “closed formularies” which severely restrict the number and variety of medications covered with no clear option for appeal. For many of our families, this is not a tenable situation. Given the complex needs of children with multiple disabilities and in many cases rare diseases, medical teams need to have the option to prescribe what works for the patient, not the state’s pocketbook. This proposed amendment takes treatment and therapy decisions out of the hands of doctors and puts it firmly into the hands of bureaucrats.

Tennessee has already experienced a significant loss in the number of rural hospitals, which rely heavily on Medicaid funds. By incentivizing cuts to Medicaid, block grants would inflict further harm on these communities and increase the risk of closure for the remaining rural hospitals and medical centers that many families in Tennessee, including those with children with complex medical needs, rely on for care. (2)

Until the summer of 2019, Tennessee was the only state in the country without a Katie Beckett Medicaid Waiver for children with complex medical needs to be cared for at home with their families instead of in an institution. Fortunately, after the heroic advocacy of the disability community, Tennessee passed this waiver. But now, just as families of children with complex medical needs and disabilities are celebrating its passage, the state is poised to effectively avoid enacting this policy. Block grants create an increased incentive to save money by making cuts to covered services and supports. In the past, Tennessee has taken drastic measures to deny access to Medicaid by freezing enrollment. (3) We have already seen the creation of closed formularies limiting the availability of medications, and it is likely that there will also be cuts to the long term services and supports our children will need when they reach adulthood. While we applaud the state of Tennessee for finally taking action to provide Medicaid coverage for children with complex medical needs and disabilities, we have grave concerns about whether they will actually receive the health care that they need to survive and thrive if this proposal goes into effect.

Little Lobbyists is a family-led group that advocates for the health care, education and community inclusion that children with complex medical needs and disabilities need to survive and thrive. This proposal puts our children’s lives at risk, and we strongly urge the state of Tennessee to reject this amendment and any future block granting of Medicaid. Our children’s lives depend on it.

Podium with a Little Lobbyists sign and mic in front of the Capitol on a clear summer day.

(1) Hannah Katch, Judith Solomon, Aviva Aron-Dine, “Tennessee Block Grant Proposal Threatens Care for Medicaid Beneficiaries, Center on Budget and Policy Priorities;” https://www.cbpp.org/research/health/tennessee-block-grant-proposal-threatens-care-for-medicaid-beneficiaries , September 25, 2019

(2) Brett Kelman, “Tennessee’s Rural Hospitals are Dying Off. Who’s Next?” Nashville Tennessean, https://www.tennessean.com/story/news/health/2019/05/16/tennessee-rural-hospitals-closing-medicaid-expansion-ballad-health/3245179002/ Published 10:00 p.m. CT May 15, 2019 | Updated 10:05 a.m. CT May 16, 2019

(3) Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, “Issues in Developing Programs for Uninsured Children: A Resource Book for States. TennCare,” https://aspe.hhs.gov/report/issues-developing-programs-uninsured-children-resource-book-states/tenncare March 2, 1998,