Health care policy is controversial. Debates swirl and “facts” fly. Policy makers and media wonks talk about data, statistics, numbers, categories, funding and philosophy. Fundamental differences over “facts,” philosophies and the role of government divide us.
The personal stories below, as told by Ronnie and Nina themselves (not their real names), remind us that decisions must be rooted in the current reality of health care consumers’ lives if goals of the Missouri Medicaid Reform Commission are to be met. Starting from scratch is not a personal option, so policies must start where consumers are.
Ronnie’s and Nina’s stories do not necessarily represent the population of those who lost Medicaid coverage. Their stories do remind us, though, that each story is complex and unique, making made-to-order solutions difficult to find.
Ronnie Tells His Story
Ronnie is 45 years old. He lives with his wife in a mobile home in rural central Missouri. As of July 1, 2005, Ronnie lost his Medicaid coverage because of the cuts enacted by the Missouri Legislature and signed into law by Governor Blunt. This is Ronnie’s story.
Ronnie was born in Kansas City, Missouri. In the late seventies, he was destined for a college football scholarship, but he wanted a music career. With one and a half credits to go, Ronnie quit high school.
For several years, Ronnie performed and also took construction jobs to get by. He had grown up with construction and had a variety of skills to offer. By the early 80s, he was making good money and doing what he loved. Then his luck took a turn for the worse.
Ronnie was badly injured when he fell out of a truck going 45 miles per hour. He was trying to grab his friend’s gun cabinet, which was falling off the truck. This is a decision he regrets.
He suffered serious injuries, including a blow to the head and a gash that tore through his eardrum. Unable to work or play music, Ronnie moved in with his mom in a small town in central Missouri. His recovery was slow. He suffered severe headaches. Ronnie eventually went back to work as a brick laborer on major construction projects in mid-Missouri. As a hobby, he moved into the business of managing other musicians.
Then he met his wife. She had survived a car accident that should
have killed her and had spent time in Fulton State Hospital as a
result of mental problems caused by the accident.
They moved in together and got married in the late eighties. She
worked in a factory making wire cables. The work was taking a toll
on her body, and she quit in favor of less physically demanding
work.
Ronnie, meanwhile, had started his own construction business, doing mostly brick and concrete jobs, but also roofing, house framing and landscaping. His wife worked at several different jobs, including nursing home jobs. She became a certified medical technician and a certified nurse’s aide.
They moved to a small town in northern Missouri so his wife could
take a good paying job with a major book company. The job was
difficult. She rejected a supervisor’s sexual advances and found it
difficult to work with him after that.
Her dad was dying of cancer, so she took leave to care for him. She was promised a job when she came back. She and Ronnie also took care of an elderly man for several months. When her dad got very sick, she spent all her time with him and Ronnie took care of the elderly man.
After her father’s death, there was no job for Ronnie’s wife. She thinks the supervisor she rejected was responsible.
Following his father-in-law’s death, his wife’s mother started to go downhill fast. Ronnie and his wife took care of her for two years while living in a small camper trailer next to her mobile home on a farm in central Missouri.
Ronnie and his wife eventually moved to Columbia so he could find work. They rented a mobile home and moved Ronnie’s mother-in-law from the farm so they could care for her.
Ronnie got a job at a janitorial services company and advanced to
a supervisory role.
His work became more and more demanding and a promised “salaried
position” never came. They did put his wife on at the company
part-time. He was working seven days a week, but his hours varied.
Ronnie was injured when he was hit by a car while on a floor job. He went to the hospital and they prescribed physical therapy for six weeks. His boss thought he was faking and tried to reassign him to a job without lifting, but at lower pay. When he declined, he was fired and his wife quit in protest.
Ronnie’s mother-in-law was unhappy being off the farm. She couldn’t walk anymore and the doctor told her Medicaid wouldn’t pay for the surgery that would help her because she was dying of cancer. At her request, they moved his mother-in-law back to the farm to die.
Ronnie is proud that they kept her alive six months longer than the doctors predicted. About a year ago, she died.
After leaving the janitorial services job, Ronnie worked on construction jobs all over town. He was eagerly awaiting the Bass Pro construction project, because he knew he would get lots of concrete work from it. Then his luck took a turn for the worse again.
Ronnie was on a job painting and prepping townhouses for new tenants. The ladder that was supporting him 20 feet up in the vault of a ceiling started slipping from under him. He remembers clutching at the air and trying to catch onto something as the ladder fell flat beneath him. He landed on the side railing of the ladder as he was standing up, and his left ankle shattered.
Ronnie went to the emergency room at University Hospital, and they did surgery to set his ankle and screw his foot back together. Two weeks later, his foot became infected because there was dead bone left inside.
He had workers compensation coverage, and the company sent him to an orthopedic group. They did surgery again to remove the dead bone and they had to fuse his bones together. He can no longer move his foot from side to side, and it is scarred and swollen. His left leg is getting smaller from not being used. He walks with an inflatable boot and sometimes crutches.
Doctors assigned physical therapy. During a session, he was injured again when he lost his footing and fell down a flight of stairs into a concrete block wall.
Ronnie cannot feel his foot or the calf of his left leg. He feels an intense hot, tingling sensation instead. He finds it difficult to walk and has been trying to wean himself off crutches. His foot swells so much that he still needs crutches most of the time. He is in constant pain and he has arthritis, osteoporosis and misalignment. The bone is deteriorating and dying.
Ronnie becomes emotional when he talks about his wife. She still struggles to deal with all that has happened and the stress from caring for her dying parents. She suffers from panic attacks and is in urgent need of dental care. She has no health insurance at all, and he worries about that. She has cared for Ronnie for several months. He has needed help with bathing, meals and basic tasks like getting a drink of water. “I don’t know how much more she can take,” says Ronnie.
The family’s only source of income right now is the $120 per week that workers compensation provides. He thinks they will release his case soon and he is worried sick about what they will do with no income. While workers compensation has paid for expenses related to his fall from the ladder, Medicaid has paid for Ronnie’s other medical expenses and prescriptions.
Ronnie and his wife live in her mom’s mobile home and pay no rent or mortgage, but they also have accumulated credit card debt that he doesn’t know how he’ll make payments on, much less pay utility bills. Without income, he worries about the basic security of his family. He and his wife spent all their savings to take care of her mom and dad, and they have no retirement funds.
Ronnie says, “I always pulled my weight my whole life and never stood there and watched…I sometimes worked Saturday and Sunday just to keep stuff going. I’ve been a laborer and a construction worker all my life. I’m 45 years old, and I need to work.”
One of the few good things about Ronnie’s situation is that he has lots of time to practice his guitar. “If I could get a grant and get into recording, that would be a good thing,” he says. He can’t see that happening. He applied for Social Security disability, but he expects a long wait to be approved.
Ronnie thinks he sees his dad’s health failing. He’s getting forgetful and can’t bend over anymore. “He has gotten too big and is too depressed to do anything about it,” Ronnie says. He gets emotional again at the thought that he and his wife “will have to go through all this again with him.”
When asked what he wished everyone could understand about his
situation, Ronnie says, “Let them walk in my shoes for a month and
see if they can survive in the condition I’m in right now. If me and
my wife weren’t fighters, I don’t know where we’d be.”
