Brandi McCutchen calls her son “Smiley Brylee” because he always has a smile on his face, despite facing the serious challenge of cerebral palsy.
At 20, Brylee is only 58 pounds and 49 inches tall. Without the ability to walk, talk or clear his throat, he requires constant monitoring by his family and health professionals at his home in Hendersonville, Tennessee. His survival depends on it.
But the medical costs and needs are high, which leaves Brylee and his family fully reliant on the care they receive through Tennessee’s Medicaid program, known as TennCare — health coverage used by approximately 1.6 million people in the state.
Some now say TennCare is under threat because of changes made by the Trump administration that will last for a decade. Less than two weeks before President Joe Biden came into office, the Trump administration provided Tennessee a 10-year waiver that caps the state’s Medicaid funding. It also allows Tennessee lawmakers to use a portion of any federal cash they save from the program in other areas of the state.
Critics say it will encourage Tennessee to make cuts to Medicaid to shore up other state programs and fundamentally change TennCare. That’s why the McCutchens, along with 11 other Tennessee families, filed a lawsuit with the Tennessee Justice Center against the Department of Health and Human Services last month. Their aim is to force the Biden White House to rescind the changes.
For their part, the McCutchens have already seen the 168 hours of care — the amount prescribed by Brylee’s doctor for each week — whittled down to 150 because Tennessee's Medicaid program cut the number of hours it will cover. They fear this new form of Medicaid approved under the Trump administration will bring additional cuts and hurt Brylee further.
“What are we supposed to do? We do all that we can, but we don't have the means,” said Brandi McCutchen, who cares for Brylee while her husband works overnight shifts as a deputy for the local sheriff’s office. “We pay all we can, but what’s left is what the government funds are for and why the state approved Medicare and Medicaid services.”
The Department of Health and Human Services, which is named in the lawsuit, declined to comment on the Tennessee case.
This case, and similar ones in other states, has the Biden administration walking a legal tightrope to unwind President Donald Trump’s Medicaid policies.
Some observed that will be a challenge while the agency still has key leadership positions unfilled. The agency is working without a permanent general counsel or head of its Centers for Medicare and Medicaid Services. Eighteen of the 31 senior leadership positions in HHS are currently filled by those in “acting” roles.
Yet, the legal maneuvering, policy decisions and negotiations the state and federal governments need to make over the country’s public health care coverage remain — and grow increasingly fraught. It could be a particular challenge without the political hierarchy fully in place at the agency, especially without a cemented general counsel’s office ready to assess litigation risk.
“You don't have the general counsel, you don’t have the CMS administrator, so given everything else that's coming at the secretary's office, can they really manage all this?” said Andy Schneider, a Georgetown University McCourt School of Public Policy professor who has worked on Medicaid for the past four decades. “At some point, somebody with authority has to decide this.”
It’s also happening while the Department of Health and Human Services is contending with unprecedented challenges, including the global pandemic and immigration issues.
“A huge factor for HHS leadership is that they’ve really had to focus on Covid and unaccompanied minors on the border,” said Eliot Fishman, who worked on state Medicaid waivers during the Obama administration before becoming the senior director of health policy at the consumer advocacy group Families USA. “There are huge bandwidth challenges.”
The Medicaid challenges
There are political dimensions, legal risks and further obstacles at play for the Biden administration, and that’s just regarding Medicaid alone.
The Tennessee waiver would allow for a capped form of Medicaid funding — commonly called block grant funding — that Republicans have long sought and Democrats have long foiled.
“And they don't have that much time to figure out a path forward with the current TennCare program, which expires June 30,” Schneider said. “That’s pretty much the whole program. That's their Medicaid program. It's their whole managed-care scheme.”
Trump also allowed states to institute work requirements for Medicaid, for example in Arkansas and New Hampshire. This has developed into a case before the Supreme Court and could be a potential legal headache for the Biden administration — though the Supreme Court has pulled the case from its docket for the current session.
Around the same time the Tennessee waiver was put in place, Trump further committed the federal government to pay billions to Texas for unpaid medical bills racked up by low-income Texans who can’t afford insurance coverage. (Texas has the largest uninsured population in the country, according to HHS data.) That commitment lasts for the next 10 years, which some say gives state lawmakers the excuse to avoid Medicaid expansion.
Last month, the Biden administration announced that they would rescind Texas’ Medicaid waiver and the $11.7 billion promised to the state annually through 2030. Officials said in a letter that the move was because the Trump White House approved the waiver without having it face a public comment period.
Republicans on the Senate Finance Committee have since voted against the president’s nominee to head the Centers for Medicare and Medicaid Services, Chiquita Brooks-LaSure, in protest.
Sen. John Cornyn, R-Texas, who first blocked a vote on Brooks-LaSure, said the administration had set a “dangerous precedent of undoing agreements made in good faith,” despite Texas having an opportunity to refile its waiver request before the funds run out in September 2022. Texas Attorney General Ken Paxton has also threatened to sue the federal government.
Some Democrats in Texas said they don’t necessarily oppose rescinding the waiver, as it could force a conversation about Medicaid expansion, but they weren’t clear on the path forward regarding the waiver and other health care initiatives.
Texas state Rep. Garnet Coleman, a Democrat, has pushed to expand health coverage in Texas for three decades and worked with the Obama administration on the Affordable Care Act. He said he is somewhat frustrated by the unfilled leadership positions in the Department of Health and Human Services. While he has spoken to members of Congress about avenues forward, he said he has yet to figure out who to speak to within the Biden administration.
“If I can’t figure out who to talk to, then I’m just doing a lot of talking by myself,” he said. “I don’t think the Biden administration really wants to show their hand right now. They may be having conversations, but they're just conversations — not anything concrete.”
Those conversations in Texas, however, have time to continue. Those in Tennessee may not, and the McCutchens’ lawsuit puts that in sharp relief.
Brandi McCutchen said she’ll do whatever it takes to ensure her son continues to have coverage and the care he needs, whether that’s in court against the Biden administration or otherwise. The stakes for her family are beyond policy and politics.
“You can't put a price on your loved one’s life, and that's all there is to it,” McCutchen said of her son’s situation. “So I’m going to fight — fight until the end.”