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    Bob Crawford was between jobs last year when he received a letter from the state saying he needed to sign up for health insurance or pay a penalty. As a stopgap measure, he successfully applied for Medicaid. Crawford was getting ready to start work with a tree-care company in Louisville, so the Medicaid would keep him covered until the insurance kicked in at his job.

    Then, on Sept. 19, he was helping a friend remove a limb from a tree. They were up in the tree doing what he calls a “controlled drop.” “Me and another guy were holding the rope and (the limb) basically broke loose before it was supposed to. Then it fell,” he says. “It swung the other guy off the rope, and as soon as it swung him out of the way, the branch hit me from above in the head and I dropped probably 15 feet to the ground, and immediately I knew something was seriously wrong. I couldn’t really move my feet or my arms.”

    The spinal-cord injury put him in an intensive care unit at University Hospital for four weeks, followed by six weeks as an inpatient at Frazier Rehab Institute. Crawford and his then-fiancée Brandie, both in their late 30s, got married at the hospital on Oct. 8 because they weren’t sure if he’d survive a surgery scheduled for the next day.

    Brandie, who’d been a social worker for about 11 years, said she went into work mode as soon as she got to the ER the day of Crawford’s injury. “I don’t know if it was a coping skill or what,” she says, “but I was like, OK, here’s what the deal is, here’s what the problem is; now I just need you to tell me how we’re going to fix it.” She’s been in work mode almost nonstop ever since.

    If Kentucky hadn’t expanded Medicaid in 2014 as part of the Affordable Care Act, it’s likely that Crawford, being between jobs, wouldn’t have had health insurance. Before the expansion, Medicaid was really only open to elderly or disabled people, low-income pregnant women and children. After the expansion, anybody making 138 percent or less of the federal poverty level (about $16,394 annually for an individual or $27,821 for a family of three in 2016) could get coverage.

    Brandie never thought she’d have Medicaid either; she’d had employer-sponsored coverage her whole adult life. She tried to continue working her job at a therapeutic foster-care home, but when Bob came home from the hospital in November, it was clear that she couldn’t work full-time and take care of Bob, who is now in a power wheelchair and has very little movement from the neck down. They didn’t have any family members who were comfortable doing all the required care, so Brandie quit her job. Which meant losing her health insurance and signing herself and her three sons up for Medicaid.

    The Medicaid expansion covers about 67,000 Louisvillians and 440,000 Kentuckians. Kentucky’s expansion was among the largest of the 32 states that expanded the program after the Affordable Care Act passed. According to the National Health Interview Survey (which the CDC conducts annually), the uninsured rate among nonelderly adults fell from 18.8 percent in 2013 to 6.8 percent in 2015.

    At the Portland Family Health Center, Ashley Shoemaker helps people sign up for health insurance. She has seen a lot of clients who don’t have coverage through work, can’t afford private insurance plans and didn’t previously qualify for Medicaid. “(Signing up) changes their whole outlook, because maybe they can go see a specialist that they’ve been putting off, or they can go to the dentist and they haven’t been in years. So really, people leave excited,” Shoemaker says.

    But any excitement about signing up for Medicaid these days is probably tinged with nervousness. Since he started campaigning, Gov. Matt Bevin has been saying he wants to cut back the Medicaid expansion (among many other spending cuts). In June, he unveiled a plan called Kentucky HEALTH (an acronym of Helping to Engage and Achieve Long Term Health). It’s his administration’s answer to Section 1115 of the federal Social Security Act, which gives states the ability to design their own Medicaid programs, as long as the Secretary of Health and Human Services approves them.

    Sitting at a picnic table in Cherokee Park, Brandie Crawford picks up a copy of the proposal she has printed out and written comments on. She’s particularly worried about the part that would require able-bodied adults to volunteer or work for up to 20 hours per week, or submit proof that they’re looking for a job. It’s not certain the requirement would apply to her yet, but she says it would be impossible to meet because she takes her husband to physical and occupational therapy at Frazier Rehab five days a week and cares for him around the clock otherwise.

    The Crawfords, who live in Shelbyville, say the proposal strikes them as demeaning and condescending. Part of it would require members who don’t pay the proposed premiums to take a financial literacy course or be locked out for the next six months. “A financial course isn’t going to help my situation or any other family’s situation. We’re all very much aware of our financial situation,” Brandie says. “You can’t financially manage something that you don’t have a lot of.” Brandie estimates their annual income is about $18,000, which includes Bob's disability payments and assistance from family. They raised money to buy a wheelchair-accessible van.

    There’s also a section about managed-care reform that the Crawfords fear could apply to Bob. Basically, it says that the state would provide incentives for Medicaid plan providers to cut spending. So far, Bob’s provider hasn’t questioned any of his physical and occupational therapy because he keeps making progress on assessments, but he’s seen it happen to other patients like him. “They’re deeming a lot of stuff Frazier does as experimental. And it’s crazy,” he says. “I see other patients coming there and doing this stuff and making improvements and they’re just getting turned away.” (Without insurance, the Crawfords would need to pay $2,500 a month out of pocket to cover Bob’s physical therapy.)

    To consider the proposal, the federal government requires at least two hearings at which the public can comment, and a period for written comments on the plan. Emily Beauregard, executive director of the health-advocacy coalition Kentucky Voices for Health, has been at all three hearings, in Bowling Green, Frankfort and Hazard. (She says there’s been criticism that the hearings weren’t in Louisville and Lexington, which have the largest populations affected by expanded Medicaid.) She notes that a lot of people have had the same concerns as the Crawfords about the work and volunteer requirements and proposed premiums and co-pays. She says there’s also outcry against eliminating vision and dental coverage, the basic versions of which Medicaid is covering. If the proposed plan works out, people insured by Medicaid would have to take health classes or do community engagement activities to get up to $500 a year to go toward “enhanced benefits” like vision, dental and gym memberships.

    These changes to the Medicaid expansion will only happen if the U.S. Secretary of Health and Human Services approves them. There won’t be any word on that until at least September. But Bevin has said he’ll get rid of expanded Medicaid completely if his plan isn’t approved.

    Since Bevin’s inauguration in December, there’s been a lot of confusion among Kentuckians regarding health insurance. Anne Peak, who does community engagement for the Shawnee Christian Healthcare Center, said she was at an event in Chickasaw Park recently, handing out information about health insurance. “Several people came up to me and said, ‘I thought Kynect was gone,’” she says.

    Technically, Kynect — the online platform used to sign up for Medicaid and other individual health insurance plans — still exists, but Peak says some people think Kynect and expanded Medicaid are the same thing. Shoemaker from the Portland Family Health Center and Jan Louden, who signs people up for insurance at Louisville Metro Corrections facilities, say they hear the same thing frequently. “They’ve heard about the changes that are going to be put forth, that our governor really isn’t a supporter of (expanded Medicaid), and they think (Kynect) is just gone,” Louden says.

    Brandie Crawford says she’d love to return to work and get off Medicaid, but right now there are only three options: do what she’s currently doing; go back to work and, because Bob would be covered under any insurance plan she’d get, risk losing the access to the care he’s getting through Medicaid and other state assistance; or move Bob to a nursing home. She gets tears in her eyes as she says, “I promised him that day in the ER that as long as there’s air in me, he won’t go to a nursing home. That’s just not going to happen.”

    Bob wants to get back in the workforce too, in some capacity. Right now, he treats his therapy like a full-time job. His goal is to keep making improvements at every six-week assessment so he can continue therapy. At this point, he can stand and take a few steps with the help of a walker and an assistant. He can also lightly pinch his left thumb and pointer finger together. It’s a big improvement considering that right after the accident, people at the hospital told Brandie he’d have to be on a feeding tube for the rest of his life.

    “There seems to be this tunnel vision of, ‘Well, you’re just a freeloader, and you need some skin in the game.’ We’ve got a lot of skin in this game,” Brandie says. “I feel like we give up a pound of flesh daily, because every day I’m battling something and every day he’s battling and working as hard as he can.”

     

    Photo by Mickie Winters

     

    This originally appeared in the August 2016 issue of Louisville Magazine. To subscribe to Louisville Magazine, click here. To find your very own copy of Louisville Magazine click here

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    About Amy Talbott

    Piscean. INFJ. Cat person. Runner. Mediocre housekeeper. Excellent cook. Scours the sleaze on Craigslist so you don't have to.

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