It’s no understatement to call Tosha Downey a daddy’s girl.
As an only child, William and Geraldine Downey put everything into helping their daughter grow into a decent, caring person who now works as advocacy director at a Memphis education nonprofit. There is nothing she won’t do for her father, 67, so when he went into cardiac arrest in June after picking up a heavy table at his regular poker game, she jumped into action.
“He fell and had a head injury and was out for four days,” Tosha said. “He started to gradually recover and come back this way.”
Tosha describes her father, William Downey, as a good-natured Southern gentleman. He worked as a heavy equipment operator, “the trucks that move the dirt,” she said. In his community, he’s known as the mayor of South Memphis.
Loving her father is easy. She thought doctors would do the hard part of helping her father heal, but little did Tosha know she would have to run the Tennessee Medicaid gauntlet to ensure her father received care and recovered. Her experience has bolstered her belief that the state’s decision to seek federal approval for a Medicaid block grant for TennCare is the last thing residents need.
“The big issue was everybody was on this little clock,” Tosha said about the limited days her father was able to get care in a combination of hospitals, rehabilitation centers and at a nursing home. He had Medicare A and B, but if William wasn’t covered by Medicaid or didn’t have supplemental coverage, specific services such as rehabilitation would soon run out.
Health care officials knew the family would become liable at some point: “My dad didn’t have Medicaid until July 26. A family can’t have more than $2,000. You can’t have any assets.”
William has been disabled and not working since 2010. Her mother has been disabled for some time, too.
“To save money, you’re going to keep people off the rolls,” Tosha said about the shift to a block grant.
The Tennessee Legislature has approved a measure to pay for Medicaid using a block grant, making it the first state to do so if federal Centers for Medicare & Medicaid Services (CMS) gives final approval. The grant would fix the federal dollars allotted for the state’s Medicaid program, known as TennCare, which provides healthcare coverage for low-income pregnant women, children, the disabled and elderly. The federal government splits the cost of Medicaid 65%–35% with the state, investing up to $8 billion annually in Tennessee.
Tennessee is on track to submit a waiver amendment by Nov. 20. It could take roughly six to nine months for CMS to complete the review process, and because Tennessee is the first state to try this, it could take longer, according to Sarah Tanksley, TennCare spokeswoman. After that, the state has to go back and “approve any block grant waiver agreement prior to implementation,” she wrote in an email.
The way Medicaid works is the federal government matches state health care spending, considering the per capita income of each state, and there’s no limit on the amount of money the federal government matches. Tennessee’s argument for a block grant is the promise of delivering healthcare more effectively if the state can avoid “overly prescriptive federal involvement to pursue meaningful innovation,” according to TennCare.
Tennessee has asked “for a broad set of flexibilities to change benefits and do away with some reporting requirements,” said Mandy Pellegrin, policy director at the nonpartisan Sycamore Institute. “There’s not a lot of information about how the flexibility would be used.”
Health advocates argue the move is illegal, and the planned efficiency outcomes are improbable.
“If you have a fixed amount of dollars that aren’t growing at the same rate of actual health spending, most likely the state will be in a situation where they have to cut benefits or cut enrollment, said Akeiisa Coleman, a program officer for the federal and state health policy initiative at The Commonwealth Fund, a D.C.-based foundation that promotes healthcare access. “The general consensus is where the state may gain flexibility to do innovative things, they may not be able to produce savings fast enough to meet growth in healthcare costs.”
Point blank, there’s a fear that flexibility “would be used in ways that are very negative,” Pellegrin said.
TennCare is Shelby County’s largest insurer for underserved populations, in a county where 21.7% of residents live in poverty, compared with 11.5% in Tennessee and 12.3% in the United States, according to the University of Memphis Poverty Fact Sheet. Nearly 13 percent of Shelby County residents over age 65 are impoverished. And 20% of black elderly county residents live in poverty, compared with 6.4% of white residents. Shelby County grew poorer in 2018 by 15%.
The Sycamore Institute says 27% — 250,889 people — of the county’s population is on TennCare. Among Shelby County children, 55% or 145,290 are insured under TennCare.
And because Tennessee refused to accept the Affordable Care Act expansion, 380,000 adults are already left uninsured, and the state is forfeiting $26 billion in federal payments, according to The Commonwealth Fund.
Opponents say the move to block grants is a cynical one to cover fewer people. Some have wondered aloud which companies and individuals stand to gain financially from a block grant system purported to give the state more flexibility — but not citizens.
“What happens is the federal government sends us money. We spend it on health care, and the more cost-efficient we are, the more money the state retains,” said state Sen. Katrina Robinson (D-Memphis). “And so how do you become more cost-efficient? You either eliminate coverages [or] you reduce reimbursements. There’s going to be a lot that happens that makes access to healthcare even more difficult even without us expanding Medicaid.
“This is not a step forward, it’s more to step backward,” Robinson said.
This “backward” movement resonates with Tosha who is skeptical of what she calls a “morality narrative” that has gripped state politics. She is concerned a block grant scheme would thwart everything from birth control access to quality reproductive health care education for girls and women.
Now, she’s experiencing the other side of the life cycle by coordinating elderly care. William Downey’s recovery stalled early on.
He was initially at Methodist Olive Branch Hospital for a full month then transferred to Regional One in July, Tosha told MLK50: Justice Through Journalism. He had a feeding tube inserted because he couldn’t get enough nutrition. He also had to go to rehab because his capacity to move had diminished.
Regional One prepared the Downeys for what would come next because William wasn’t making enough progress to move to another floor where he could participate in advanced rehabilitation. He was sent to Allenbrooke Nursing and Rehabilitation Center, LLC in late July.
While deemed at risk of falling, William did manage to gain some mobility.
“In his mind, he would walk. He was very fuzzy and had lots of hallucinations,” Tosha said. “He talked in loops and lost short-term memory. He could remember stuff from way back in childhood. We were starting to see some patterns of memory loss.”
Downey feared her father was developing dementia, but center staff did not provide a prognosis on those specific symptoms.
His risk of falling became more serious as he was falling every day: Tosha organized shifts where family members — mom, uncle, cousins — could be at the center to watch him as long as they could. The center has a no-overnight policy, she said, so if he fell during the night, he would have to be taken to the emergency room.
That is exactly what happened.
After his third fall, William developed a “big knot on his head,” said Tosha, noting her father was now on blood thinners and had developed a hematoma at that point. William had to leave the nursing home and head back to Regional One for two days then go back to Allenbrooke.
“The falling is perpetually a challenge,” said Tosha, who observed more mental changes in her father. The family told the team, “We think you should do a psych and neurological evaluation.”
William’s agitated state and what Tosha considered still-undiagnosed dementia made it so he couldn’t stay put. He ended up at St. Francis, but the family was eventually told they’d have to take him home.
That vexed Tosha, whose elderly mother is not in the best of health, either. How could she work and provide professional nursing care?
Tosha inquired at several care facilities but kept hearing the same thing over and over again:
“We don’t take Medicaid. We don’t take Medicaid. We don’t take Medicaid. We don’t take Medicaid,” Tosha recalls. “Don’t have supplement, we can’t help you.”
Tosha agreeing to take her father to Quince Nursing and Rehabilitation Center, LLC. But he couldn’t stay there indefinitely, either. Her 74-year-old uncle stayed there all day; she stayed every night; and her mother cooked and brought food for them.
Unmarried with no small children, Tosha said she has had to run a bureaucratic gauntlet to become her father’s financial representative so she could pay the household bills for a family home she now owns.
The Downey family journey presages potential access issues for low-income Tennesseans. This could exacerbate factors that drive a person’s well-being, such as living in poverty, discrimination, housing and education, according to Ruby Mendenhall, Ph.D., assistant dean for diversity and democratization of health innovation at the Carle Illinois College of Medicine.
“Scholars describe these factors as social determinants of health because they are embedded in where people live, learn, work, play and worship,” Mendenhall wrote in the Journal of Law, Medicine & Ethics. “Scholars also use an image of an iceberg to drive home the point that much of what drives a person’s health takes place outside of the doctor’s office, or even hospital. It is important to understand and address social determinants of health because they often lie beneath the ‘surface’ but play a critical role in health disparities and premature death.”
Right now, Tennessee is not healthy.
The state ranks in the bottom 10 for the health of women, infants and children, according to United Health Foundation’s 2019 America’s Health Rankings. On adverse childhood events like economic hardship and neighborhood violence, the state is in the bottom 31 to 40 of states.
Tosha Downey’s resolve has been tested during this ordeal, but she knows one thing for sure:
“The sickest, the poorest, and the neediest — this is who is covered by TennCare,” Tosha wrote in a recent Facebook post. “My father is one of those sickest, poorest, and neediest. Until five months ago, my dad was a pillar in the neighborhood where we’ve lived; he’s served his country in the U.S. Navy. He’s spent the last 53 years of his life in partnership with my mother.
“He was a deacon, Little League coach, and ‘granddad’ to hundreds of children in the church programs run by Christ Quest. And after a fall, cardiac arrest and a permanent brain injury, he now requires 24-hour care. He’s been in three hospitals and two nursing homes. Expanding Medicaid is what we need. Not block grants.
Today, William Downey is being cared for at home with the help of five daily hours of nursing care, courtesy of TennCare. The Downeys are doing their best to do what trained nurses should do inside a hospital or care facility, which includes checking his blood pressure and feeding tube, turning him and administering medication.
Moreover, the Downey family is doing the things they know they can do, which is keep Mr. William Downey — mover of dirt, lover of children, unofficial mayor of South Memphis — cleaned, fed, combed and loved.
This story is brought to you by MLK50: Justice Through Journalism, a nonprofit newsroom focused on poverty, power and public policy. Support independent journalism by making a tax-deductible donation today. MLK50 is also supported by the Surdna Foundation, the Southern Documentary Project at the Center for the Study of Southern Culture and Community Change. Sign up for our newsletter.