Tom Wilemon

twilemon@tennessean.com

The day Linda Drain put baby's breath in her hair and said "I do," she had no idea that government policies would tear her apart from her husband.

But 33 years later, she and her husband, Larry Drain, separated so she could keep her health insurance.

Six months into the full implementation of the Affordable Care Act, the Drains are among 162,000 Tennesseans who got caught in a coverage gap. Their household income is too little to qualify for a government subsidy to buy health insurance, and they live in a state not expanding Medicaid.

Their predicament was caused by a series of legal, political and bureaucratic decisions that included the U.S. Supreme Court striking down part of the federal health law, but Larry Drain said he feels to blame.

"In September of last year, I made what looking back on it in retrospect was the worst decision I ever made in my entire life," he said. "I decided to take early retirement from Social Security."

Even though his monthly benefit was significantly less than the paycheck he had been bringing home, the decision changed the eligibility requirements for Linda Drain to continue receiving Supplemental Security Income. If she kept living with her husband, she would lose SSI eligibility, which would make her no longer qualify for TennCare.

Linda Drain has epilepsy. She has suffered so many seizures she has damaged the nerves in her back. She has spinal stenosis, a condition aggravated by the titanium in her back. Despite having undergone brain surgery to alleviate the seizures, she still has to take expensive medications to prevent them.

She cannot do without insurance. So she has either lived with her mother in Alcoa or stayed in a homeless shelter in Knoxville since the separation to avoid hitting the household income limit.

Meanwhile, Larry Drain lives alone in the small apartment in Maryville they once shared, making do without insurance and hoping the hernia he can't afford surgery for won't cause a bowel obstruction.

They got caught in the health-care cracks created by the U.S. government and the state of Tennessee. Had the federal government's income guidelines been different, she would not have lost her SSI or they might have qualified for subsidies to help them buy insurance on healthcare.gov. Had Tennessee expanded its Medicaid program, they both would have been eligible for coverage.

Every day, Larry Drain writes a letter to Gov. Bill Haslam asking him to expand Medicaid and posts it on a blog.

"In some ways, it is like a virtual sit-in," he said. "I couldn't go sit in his office, but in some way I need to say, 'I am here. I am going to be here. I'm going to talk about things you don't want talked about.'"

The Tennessee Plan

Behind the scenes, officials within the Haslam administration have been talking with federal officials about how Tennessee might qualify for Affordable Care Act federal funds to cover poor, uninsured people. But the governor ruled out expanding Medicaid in March 2013 and said he favored a plan to leverage federal funds to, instead, help the poor buy private health insurance. Haslam said then that a "Tennessee Plan" should require copayments so people would have "some skin in the game."

"Governor Haslam believes that more people having access to health care is a good thing, but you have to do it in a way that controls costs and provides for better outcomes," said Dave Smith, press secretary for Haslam. "The governor and administration continue to have discussions with HHS and CMS about the Tennessee Plan, the governor's approach for a third path to real health-care reform for Tennessee."

The Affordable Care Act allows the federal government to pick up the full cost of insuring new people who qualify for Medicaid under the expanded guidelines through 2016. It will then phase down to a permanent 90 percent matching rate in 2020.

But members of Tennessee's Republican-controlled legislature are wary of the federal promises and worry that Tennessee can't afford the 10 percent match the state would have to start providing. Tennessee tried Medicaid expansion once before in the 1990s, then had to scale back and force people off the program because of cost overruns.

Even without Medicaid expansion, the Affordable Care Act offers subsidies to Tennessee couples making more than $15,510 to help buy insurance on the federal exchange. But couples like Larry and Linda Drain who make less than that get nothing. The federal health law intended for the poorest people who were uninsured to obtain coverage through Medicaid expansion, but the U.S. Supreme Court took the teeth out of that part of the law, leaving the decision up to the states.

In Tennessee and most Southern states, couples who make less than $15,510 and individuals who make less than $11,490 are out of luck in getting any type of help toward obtaining health coverage.

Unfair, uninformed

It's a situation that Americans are beginning to recognize as unfair, according to a poll released by HealthPocket, an online service that helps consumers compare insurance plans. In the South, half of poll participants answered that the Medicaid coverage gap was unfair, compared with 19 percent who believed it was fair. The others said they didn't understand the issue.

"The number of people who didn't understand the issue was very surprising," said Kev Coleman, head of research and data at HealthPocket. "You're talking one out of three people."

Across the South, nearly 4 million uninsured people fall into the same coverage gap as Larry and Linda Drain, according to a Kaiser Family Foundation report. In Tennessee, they account for 24 percent of uninsured, non-elderly adults.

Larry Drain said he didn't have insurance at his last job working at Blount Memorial Hospital.

"The irony of it was I was working full time at a hospital with no benefits," he said. "When I got the job, what they explained to me was the hospital was losing money hand over fist because of uncompensated care."

He worked most of his life in social work and counseling. Linda Drain said she tried to work but couldn't get hired or would get fired when employers found out about her seizures.

"My seizures got progressively worse over time," she said, explaining that seizures scar brain tissue, which in turn triggers even more seizures.

Special moments 'ripped away'

The couple did not know she would be at risk for losing her SSI and TennCare when he retired at age 62.

"We had it figured out that between what I got from retirement and from what she got from SSI that we would never be rich," he said. "We would basically always be below the poverty level — but we could live. We could pay our bills and have a little bit left over and we would do fine."

But two months later they got a call from Social Security. He tried to reverse his decision, he said, but that would have required reimbursing the checks he had received — money that had already been spent on rent, food and gas.

"After one or two months of crying and lots of prayers and lots of yelling and screaming, on Dec. 26 — after 33 years of marriage — we separated," Larry Drain said.

Now, they live about two miles apart, but they don't see each other every day. Even though he tries to make ends meet delivering pizzas, he has to budget the gas in his tank as closely as the dollars in his wallet.

She said she has applied for subsidized housing in Knoxville because her mother plans to move in with another daughter due to a medical condition. The city is about 25 miles away.

She misses him reading to her. He misses her sharing music.

"A thousand little things have been ripped away from us," said Larry Drain. "Little things that people do."

Reach Tom Wilemon at 615-726-5961 and on Twitter @TomWilemon.

Caught between two cracks

Federal

The Social Security Administration allows a couple to earn up to $2,249 a month in wages if someone receives Supplemental Security Income. However, the couple cannot make more than $1,102 when the income is not from wages. Even though Larry Drain's Social Security retirement check is significantly less than his old wages, his new and lower household income put them over the threshold. Linda Drain would have lost her SSI had she continued living with him — a scenario that would have caused her to lose TennCare coverage. These differing income formulas were in place before the passage of the Affordable Care Act.

State

The Drains made too little to qualify for a subsidy to help them buy insurance on healthcare.gov, the federal exchange. However, both would have qualified for TennCare while still living together if Tennessee had expanded its Medicaid program. Now, Linda Drain lives with her mother to keep getting TennCare. Larry Drain is uninsured. The Affordable Care Act would have basically required all states to expand Medicaid to people who fall within the Drains' income range, but the U.S. Supreme Court struck down that provision of the law.

People insured because of the Affordable Care Act

• 1 million young adults between 19 and 26

• 8 million who bought coverage on federal or state exchanges

• 5 million who purchased coverage directly from an insurer

• 6 million who enrolled in Medicaid or Children's Health Insurance Program

• Total: 20 million

— New England Journal of Medicine

A Medicaid gap

People left out

• Nationally: 4,831,580

• South: 3,800,940

• Tennessee: 161,650

Southerners left out

Ethnic breakdown:

• White: 40 percent

• Black: 31 percent

• Hispanic: 24 percent

• Other: 5 percent

— Kaiser Family Foundation

Left out

The poorest people in Tennessee get no health plan coverage or subsidies toward buying it from the Affordable Care Act because the state is not expanding its Medicaid program.

• Individual making less than $11,490: Nothing

• Couple making less than $15,510: Nothing

• Family of three making less than $19,530: Nothing

• Family of four making less than $23,550: Nothing

• Family of five making less than $27,570: Nothing

• Family of six making less than $31,590: Nothing

— www.healthcare.gov