Ordinary heroes: Drains honored for speaking out for health care equality
y Linda Braden
Larry and Linda Drain are quiet, unassuming people. But when circumstances arose that threatened Linda’s life, they both began speaking out, their voices ringing loudly to bring awareness to — and a solution for — themselves and others who have fallen through the cracks of the health care system in Tennessee. Their income is too high to qualify for TennCare, Tennessee’s public insurance program, and too low to qualify for federal subsidies under the Affordable Care Act, also called Obamacare.
In acknowledgement of their efforts, the Tennessee Health Care Campaign presented the Drains with the 2014 Heroes for Health Award in August at the John Seigenthaler First Amendment Center, Nashville. The award was given “for your dedicated support to affordable access to high-quality health care for all Tennesseans.”
The event honoring the Heroes was part of the Tennessee Health Care Campaign’s 25th Anniversary celebration. In addition to the Drains, Laura Sell was honored for the major work she did as a volunteer to promote and support enrollment in the Patient Protection and Affordable Care Act, collaborating with the Blount County Public Library.
Larry said, “It was a very eventful night. We got to speak to a lot of people, meet a lot of people that were heavy-hitters that we knew about or read about. That was neat. And to get people to treat us like we were important. As we were walking out the door, I said, ‘Linda, do you ever get over being surprised when people treat us nice?’ I’m surprised every single, solitary time. It’s just been a strange happening. When it first started out, we didn’t have a clue ... The way we look at it is that we are extraordinarily ordinary people, and the idea that people would know who we are or that people would listen to what we have to say — I wouldn’t have predicted that in a thousand, million years. Then when it took off, it went insane.”
The story began with Linda, who has been drawing Supplemental Security Income (SSI) for some time because of epilepsy, brain surgery and additional health conditions. Larry said, “She has TennCare. She has to have the TennCare in order to live. If she does not have the medication, if she doesn’t have the medical care, she will die.
“Ten years ago, a good day for her was having 10 to 15 grand mal seizures. She went through brain surgery, and the last 10 to 14 years have been extraordinarily eventful, but the medication is her pathway to life.”
After Larry turned 62 last September, he decided to take early retirement and begin drawing Social Security.
“If I had to take all the dumb, stupid, worst things in my entire life that I have ever done, that one is so far to the top that there is not a second place,” he said. “The way we had it figured out, we could live if we took what she made in SSI and what I made in retirement. We weren’t going to be rich — in fact, we were going to be poor — but we would be able to pay our bills, do what we needed to do. We were going to be OK.
“After a couple of months, Social Security called us in and said, ‘You guys make way too much money.’ They were very nice, not cruel or mean or anything like that. ... But they said, ‘We have a limit on unearned income, and you guys are way over it.’”
Larry questioned how that could be, and was told that his Social Security retirement is considered unearned income. He said, “I asked them, how could that be unearned income? I worked 47 years for that. It’s my money. They said, legally it’s unearned income. They told Linda that her check for $720 was going to become $20. We were going to lose $700. I said, ‘I’ll just give the retirement back. I’ll just get another job and we’ll be OK.’ And they said, ‘Well, you can do that, but the only way you can do that is to give us back every single penny we have given you today.’ Well, if I could give it all back today, I would never have needed it to begin with.”
Larry thought he could continue drawing his retirement and also have a job to make ends meet. He said, “What they said after that has basically driven the whole situation. They said, ‘You have to understand, that because your wife is on TennCare, if you make over $85 in a month, she will lose her TennCare.’ So we went home, and we did all the figuring we could.”
Their projected budget for January would leave them with $30 for essentials such as food and gasoline, and the following months would be worse. “We looked at everything we could, trying to find a way. ... But there wasn’t a way,” Larry said. “We were in a position where, if I got a job to give us enough money to live on, it would kill my wife. It would take her insurance away, and it would kill her. If I didn’t get a job, we couldn’t live. We couldn’t live on a dollar a day. It just wasn’t doable. So on Dec. 26, after 33 years of marriage, we separated.”
The original plan was for Linda to stay with a relative until they could find her a permanent place so she could retain her SSI and TennCare. Larry would then find a place as close by as he could. Larry said, “At that time, our understanding was that, according to the way the laws were in the state of Tennessee, we would never again live together as man and wife.”
There were two possible solutions: Change Social Security laws or expand TennCare, the state’s managed Medicaid program which provides health care coverage primarily for low-income children, parents, pregnant women and elderly or disabled adults. Social Security laws were not going to be changed, but Tennessee Gov. Bill Haslam could spearhead expansion of Medicaid. Larry said, “If he expanded Medicaid, then Linda didn’t have to be a member of a category, she didn’t have to be ‘disabled,’ to get it. All she had to do was be poor. If he expanded Medicaid, then she would have her insurance, which meant we could live together, I could get a job, and although we’d struggle, we would live. Without him expanding Medicaid, we had no help at all.”
Letters to governor
Larry began drawing attention to the need for TennCare expansion by writing a series of letters to the governor. Some were very personal, some general and policy oriented, but in each letter, Larry pleaded with Haslam to submit a plan for TennCare expansion. The 100th letter was emailed on Sept. 2. As of that date, the governor had not responded to the Drains, but he did announce on Aug. 28 that he plans to submit a proposal to Washington to expand Tennessee’s Medicaid program. He did not release any details, however.
Larry said more than 1,200 individuals from across Tennessee have told him they also contacted Haslam. Larry’s 100th letter to the governor begins to list the names, and he plans to continue adding names in subsequent letters until every one is included.
Each letter is available atdeargovernorhaslam.wordpress.com and is viewed by 4,000 to 6,000 persons daily. In addition, a petition entitled “Gov. Haslam: Expand TennCare and Let Me Stay With My Wife!” at www.thepetitionsite.com has almost 46,000 signatures in support of the Drains.
The Drains’ story was told in the Nashville Tennessean and other major news outlets, drawing even more attention to those who, as Larry said, “didn’t fall through the cracks — we live in the cracks.”
Twenty-five miles separate this couple now. Linda is in Knox County, while Larry is in Blount County. They are waiting for the time when they can once again live together as man and wife without Linda losing her life.
Larry said, “I should not have to drive 25 miles to see my wife. It’s wrong in every sense of the word.”