By: Tim Wheat
Enrollees in the Tennessee Medicaid program, called TennCare, believed the healthcare program was a compact with the community, that their health was important, that their lives were valuable. A few TennCare enrollees believed that they had to do something to protest the cuts in enrollment and benefits Tennessee Governor Phil Bredesen was instituting across the state. They felt betrayed by the governor who campaigned on the promise to “fix” TennCare.
Two years into his term however, the former healthcare entrepreneur now governor and head of TennCare, proposed the largest reduction ever in a U.S. state healthcare infrastructure. Because the federal Medicaid program matches state spending in Tennessee at over two dollars for each state dollar, Governor Bredesen’s state cuts trigger an additional loss of $1.2 billion in federal funds for the healthcare of Tennessee. TennCare was designed to get more bang-for-the buck by expanding enrollment to the working poor and people unable to get private insurance. Taking advantage of the federal match, TennCare brought into Tennessee more healthcare money that translates into more jobs, higher income, more state tax money and healthier residents.
Medicaid eligibility is determined by medical need and poverty. The cutbacks will directly impact over 190,000 individuals in Tennessee who represent the most disenfranchised segment of the state: people with significant health concerns that take their time and money, people with disabilities and people who are poor. A disproportionate forty-percent are African-American. Even enrollee advocates like Gordon Bonnyman, did not see the legislative or judicial process as a realistic way to prevent the governor’s rollbacks.
“Direct action is the only possible way to reverse the cuts,” said Bonnyman, executive director of the Tennessee Justice Center. “We have had direct action and have seen a turnaround in the past due to taking action in Tennessee. So far there have not been any arrests, any civil disobedience, but I feel that civil disobedience will become a part of the picture because you have lives at stake, lives have been lost already and more lives will be lost.”
On June 20, 2005 the TennCare Enrollees confronted Governor Bredesen.
“Two dozen of us crowded into the governor’s office to make our demands and when we did not hear back from Bredesen, seven of us stayed the whole night,” said Randy Alexander who led the direct action on the first day. “At the time we were thinking we might have to stay a couple of nights.”
For seventy-seven days, day and night, the TennCare enrollees kept pressure on the governor’s office to reverse the cuts and meet openly with demonstrators. The people that were facing the cuts were asking for an accounting from the governor. Protestors presented alternatives and asked the governor to explain his proposal.
Lydia Lenker, Governor Bredesen’s Press Sectary, said that the governor has offered many times to sit down with the enrollees and crunch numbers, but the governor does not believe the press would be productive at a working meeting.
“The governor did meet with the demonstrators on the second day with the press for nearly an hour,” she said.
The activists rotated shifts to keep a constant presence in the governor’s office and the protest took on the designation of “sit-in.” Nightly candlelight vigils were held outside the governor’s office in support of the sit-in, but the important impact of the direct action was that it focused the dissension from around the state.
“The governor has ignored cost-saving solutions,” said Randy Alexander of Memphis. “Tennessee is dead last at providing alternatives to expensive Medicaid nursing homes, and that is where this state could make some real savings like other states have.”
Tennesseans, even those not directly caught by the cuts, questioned the logic of such a large cutback. Sick people will obviously still seek healthcare from hospitals and clinics shifting the tax burden from the state to counties and communities. People directly facing the loss of TennCare are now also facing a loss of that compact with the community. Hundreds of thousands of Tennesseans who have lost their healthcare may feel that their health is not important, their lives are of little value.
The ripple caused by the action of TennCare enrollees reverberated clearly in Missouri where Republican Governor Matt Blunt had cut the state’s Medicaid program enrollment and benefits. Missourians felt the same kind of betrayal by their community that seemed to value the abstract state budget savings over the essential medical needs of the citizens.
“The governor lied to the public,” said Richard Blakley, the executive director of Disabled Citizen's Alliance for Independence in Viburnum. “[Governor Blunt] lied during his campaign when he said he was just going to cut waste, fraud and abuse and he didn’t, he cut out eligibility. Waste, fraud and abuse, people are still doing it, and the people that really need Medicaid are losing services.”
Rita Wesbecher of Viburnum was so disgusted by what she saw in Missouri, she traveled to Nashville to join the sit-in and give the TennCare enrollees her support.
“We are behind what they are doing because we have seen the devastation in people’s lives,” said Rita who now regrets having voted for Governor Blunt. “It is horrible; devastation and heartbreak. It is one of the worst times I’ve seen in Missouri. We have people that will most certainly go into a nursing home because they are losing their attendant services, and people with big, big spend-downs that will have to make the decision if they want to eat or if they want their meds. It never ends. This is an everyday thing.”
Institutionalization is a unique form of discrimination that is faced by people with disabilities. The 1990 Americans with Disabilities Act recognizes that institutions, like nursing homes, may be used to segregate people with disabilities from typical community life. In 1999 the U.S. Supreme Court ruled in Olmstead v L.C. that U.S. state programs could not unnecessarily institutionalize Americans with disabilities.
Federal Medicaid policy, however has not kept up with progress in civil rights. Every U.S. state must offer institutional care in its Medicaid plan, but alternatives to institutional services are optional parts of the state plan. A governor that wishes to cut his or her state Medicaid portion cannot cut institutional care although it is the least desirable and most expensive form of long-term care. So the big losers in the system are the optional Medicaid programs that often go beyond the required minimums and may be popular services. Most of the optional Medicaid programs were developed to save state money, especially with preventive care, where savings may be significant. But preventive savings are for the long-term, at least longer than a governor’s term. Medicaid optional program cuts show savings for the state budget today.
Attendant care and home and community-based services are long-term care alternatives to institutions that help states hold down their Medicaid long-term care costs. The services provided in a person’s home help that individual to avoid expensive facilities, enjoy his or her life and even return to work. In Missouri many people are asked to “spend-down” in order to keep Medicaid services like attendant care. The spend-down is a process of voluntarily lowering one’s income to below poverty by mailing everything over $670 per month (for a single person) back to the state. The regressive nature of this system can mean that many low-income individuals pay over 50% of their income for healthcare. Kim Sternemann, an attorney specializing in disability issues, believes that the Missouri Medicaid cuts have moved the state farther away from compliance with Olmstead.
“We have created a bigger disparity between what you get if you are willing to be institutionalized and if you want to stay in the community,” explains Sternemann. “You can go in a nursing home at 300% of the poverty level, you then are entitled to Durable Medical Equipment (DME) and all the other healthcare needs you would have. If you want to stay in the community on the self-directed program you don’t get DME paid for and you have to meet the spend-down requirement, which means every month you have to spend-down to 85% of the poverty level to qualify for Medicaid for the rest of the month.”
Similar to Tennessee, Sternemann found that taking action was the only thing with promise to reverse the turn against healthcare. Gordon Bonnyman suggested that it is the people, with their lives on the line that must face the general public and break the myth that Medicaid covers everyone.
“Direct action will have to relate directly to the general population. They have to see that the state is putting people’s lives on the line, that people die or [the general population] will lapse into the myth that the healthcare system works for the poor,” said Bonnyman.
Coincidentally, a week after the TennCare sit-in started, the nonpartisan Henry J. Kaiser Family Foundation released a poll showing strong support for Medicaid. The survey indicates that 74 percent of the public considers Medicaid a "very important" government program. Diane Rowland, executive director of the Kaiser Commission on Medicaid and the Uninsured said that the poll shows that Americans across the political spectrum value the role Medicaid plays in our healthcare system.
Despite the general support for the federal Medicaid program, Kim Sternemann found that translating that support into the details of state legislative support was nearly impossible.
“We did all those traditional channels of diplomacy that you do: passed research to the legislature, attended hearings and made testimony and we got very little,” said Sternemann. “People were kind of desperate, we knew the governor was getting ready to sign the bill [to cut Medicaid] and we knew that there was going to be a rally, so a handful of us got together and some of our folks chained themselves to the house chamber door. That was the beginning and people finally got a taste of power, they finally realized that they had a way to fight back when all the other doors are closed. Since then we have done about an action a month.”
Congress has approved the Bush administration’s budget that requests a $10 billion reduction in federal Medicaid spending by 2007. The National Governors Association points out that federal and state spending on Medicaid has grown an average of 10 percent a year over the last five years - much faster than federal or state revenues - and now totals more than $300 billion annually. State governors and legislators are looking for ways to deal with a shrinking commitment by the federal government to the Medicaid program and many eyes are on Tennessee and Missouri.
On a federal level, many people fear the idea of block granting Medicaid. Rather than state officials having to deal with budgeting for uncertain need, there would be an exact amount in the state healthcare budget. This concept seems to be advantageous to the various statehouses attempting to balance yearly budgets, but clearly trickles down to more healthcare rationing for the poor and uninsured.
Gordon Bonnyman says that the mystery, the dog that hasn’t barked in the night, is Senate Majority Leader Bill Frist of Tennessee. Frist was part of the creation of TennCare, a proponent, and because of his background he surely understands the consequences of Medicaid cuts. Although Medicaid is originally a federal program, Bonnyman says that Frist has simply sat on his hands.
“I think only if there is direct action,” said Gordon, “it begins to draw out some of those tensions, some of the incongruities between those stated positions of the majority leader and where he is here. Between the rhetoric of the governor, who said everybody is going to be okay and the reality we know: people are not okay, in fact, some of them are literally dying.”
“I am working now to get my own healthcare system in place,” said Don DeVaul a TennCare enrollee and key figure in the sit-in. “We are focusing right now on the legislature, on various town hall meetings across the state and being in front of the governor whenever he is in public. We will pop-up again.”
- Tim Wheat
