Deborah Merriman is struggling to understand why she's been left out of the great Medicaid expansion that occurred across half the nation on New Year's Day.
"I'm in a wheelchair, and I'm going blind," the 51-year-old Cleveland, Tenn., woman said. "I've been trying to get on disability. ... It's not easy. If you don't have health insurance, you can't even get in to see a doctor."
Merriman and her 29-year-old daughter, Peggy, both unemployed, were counting on help to get insurance coverage from the federal Affordable Care Act when major provisions of the law took effect Jan. 1.
That didn't happen. They are among some 161,000 low- or no-income adults in Tennessee, 191,000 in Alabama, 400,000 in Georgia and nearly 4.9 million nationwide who have fallen into what the Kaiser Family Foundation, which provided the estimates, calls a "coverage gap."
It's because they live in one of the 25 states, including Tennessee, Georgia and Alabama, where mostly Republican political leaders such as Gov. Bill Haslam opted not to participate in the Medicaid expansion. The expansion is entirely federally funded through 2016.
At the same time, people like the Merrimans don't qualify for tax credits to help them pay for private insurance offered on the health exchanges created by the law.
But if the Merrimans lived in neighboring states such as Kentucky or Arkansas, they'd have insurance today. Those states and 22 others, as well as the District of Columbia, opted for the expansion.
Gordon Bonnyman, who on Wednesday stepped down as executive director of the Tennessee Justice Center, said Merriman "is very typical of the people left behind" by the state's failure to expand its Medicaid program, known as TennCare.
"The people who will remain uninsured are the working poor," added Bonnyman, who remains a staff attorney for the advocacy group. "Most Tennesseans find it hard to believe the reality that, as a result of the state's refusal to accept the federal dollars, it is the working poor who remain uninsured, while people with higher incomes will be able to get subsidized insurance. That's not the fault of the Affordable Care Act, but the result of our state leaders' decision."
The Tennessee Justice Center estimates the state would receive $6 billion in federal funds between 2014 and 2019 if it expanded Medicaid.
A University of Memphis study estimated the expansion would generate some 18,000 jobs.
In the meantime, Tennessee hospitals say they'll be left high and dry without expansion because the federal government is dramatically cutting special reimbursements for indigent and charity care provided by hospitals.
The disparity came about as a result of last year's U.S. Supreme Court ruling on the Affordable Care Act, widely known as Obamacare.
The ruling left it up to states to decide whether to expand the Medicaid program for the poor, which traditionally has covered low-income pregnant women, their children and the disabled.
The law presumed these people would be covered by Medicaid. The expansion covers adults under 65 who make up to 138 percent of the federal poverty level or about $15,800 a year for one person and about $32,500 for a family of four, according to the U.S. Department of Health and Human Services.
Haslam decided in March not to pursue the expansion for now. Instead, he outlined an alternative approach he calls the "Tennessee Plan."
Haslam wants to use dollars available for the Medicaid expansion to buy people insurance on the federally operated insurance exchange.
Arkansas received approval to do just that. But Haslam is asking for more from the Obama administration: he wants to require newly eligible enrollees to share more costs of care and drop some "wraparound" services required by Medicaid for the medically fragile.
The governor also wants health care providers, such as hospitals, to be paid based more on the quality of care and outcomes than for traditional fee-for-service reimbursement.
Haslam has talked with U.S. Health and Human Services Katherine Sebelius but hasn't submitted an official Medicaid rules waiver. When Sebelius pointed that out last month, Haslam fired off a two-page letter to her last month.
It stated: "We do not see a path forward in the current environment that will allow us to extend coverage to the Medicaid Expansion population until the aforementioned issues have been resolved and flexibility is given to allow us to address health outcomes and cost in a way that the traditional program does not."
He told reporters "I don't know if I would call it a final offer. This is just about us being real clear about where we are."
Merriman, who moved to Tennessee to be with her son nearly three years ago, called the situation "just really a vicious cycle."
"It's the [federal] government trying to work with the state and the state's not working - and you're caught in the middle of this hurricane."
She said she injured her back 10 years ago while working in a distribution warehouse in Oklahoma.
"That's when it began," she said. Since then, Merriman said, she's developed "major arthritis" in both knees, has problematic calcium deposits on hip joints and is struggling with macular degeneration in her eyes.
"Everything's blurry," she said.
She uses a wheelchair she got free from Goodwill. While grateful, she noted it doesn't have working brakes.
Merriman said HHS officials told her she could get on the exchange but wouldn't qualify for any credits because she was eligible for the expanded Medicaid program. So, Merriman said, she contacted TennCare officials.
"They get mad at you," she said.
Merriman said she needs to see a doctor and update her documents to bolster her case for disability. If granted, it would make her eligible under Medicare, according to Bonnyman. And even if she's approved for disability, Bonnyman said, there's a two-year waiting list for health coverage.
Merriman's son and daughter in law both work in retail and have insurance, she said. But their incomes leave little once the bills are paid, she said.
Rae Young Bond, executive director of the Chattanooga-Hamilton County Medical Society, said the state's refusal so far to expand Medicaid hurts people in Hamilton County too.
Bond had hoped Medicaid expansion would significantly reduce the need for a local program she oversees. Project Access connects about 375 uninsured people a month with donated medical services. Without Medicaid expansion, all but a fraction of those people will remain uninsured, and demand for Project Access will remain just as high, Bond said.
"It's very disappointing because the goal of the [ACA] was to expand access to care, but unless we have Medicaid expansion, health coverage remains out of reach for our poorest citizens," said Bond.
"It is devastating for people to have a sense of hope that they are finally going to be able to get insurance, and for them to discover that it is still out of reach," said Bond.
The local medical society is lobbying for expansion and has been in talks with the county's legislative delegation about the issue.
State House Majority Leader Gerald McCormick, R-Chattanooga, recently said Tennessee Republican legislative leaders back Haslam, arguing that while Uncle Sam pays the full bill during the first three years of Obamacare, future expenses would fall increasingly on the state.
That would likely swallow up funding for other areas like education, he said.
"It would be an easy decision for us to go ahead with the federal government paying for all of it and let future legislatures worry about paying for it when the bills come in," McCormick said. "And they are going to come in, and they're always bigger than the federal government estimates."
Republicans also say they fear the federal government could cut its support.
State Rep. JoAnne Favors, D-Chattanooga, a retired nurse and health care executive, said she remains "disturbed" Tennessee isn't participating in the Medicaid expansion.
More than 100,000 people would benefit, she said, adding, "that's a lot of people in a state with a little over 6 million. I'm hoping there will be some changes in their [Republicans'] heart ... that changes have to be made."
Bonnyman said the 161,000 figure estimated by Kaiser is the most common one among a range of estimates. Others range up to 330,000.
But the attorney noted that while all children, except those who are undocumented immigrants, are already eligible under TennCare or a CoverKids program, an estimated 90,000 aren't signed up.
"There is a lot of evidence that ... when parents are covered, children are more likely to be enrolled, too," he said. "The denial of Medicaid coverage to working parents makes it more difficult to reach and enroll their eligible kids.
In the meantime, Kentucky Gov. Steve Beshear, a Democrat, this week celebrated the start of Obamacare. Some 31,672 Kentuckians enrolled in the state-operated health exchange, according to his office. Another 84,840 signed up for the state's expanded Medicaid program.
Expansion will help Kentucky's economy too, he said, saying it will generate nearly 17,000 new jobs for Kentuckians and bringing a $15.6 billion positive impact between 2014 and 2020.
In a statement, Beshear said he believes it's the "most important single decision for the health of Kentuckians in our lifetimes."
Staff writers Ellis Smith and Kate Harrison contributed to this report.
Contact staff writer Andy Sher at firstname.lastname@example.org or 61l5-255-0550.