COAL RUN VILLAGE, Kentucky — Two hours before sunrise, Mike Steele locked the front door of his tan brick house and shuffled past the red rose bushes he planted with his wife. In the dark, he walked to the white 10-passenger van parked next to his home and climbed into the driver’s seat. On this Wednesday, the temperature hovered just above freezing. He turned his key in the ignition, cranked up the heat and drove. At 5 a.m., few lights shone inside his neighbors’ homes.

The night before, he received today’s schedule: three patients, all of whom lived roughly 40 miles away and none of whom owned cars. Bobbing up and down steep hills, on narrow roads that wrap around mountains long mined for coal, it will take more than an hour to reach those patients, who qualify for transportation for a variety of health professionals through Medicaid.

For nearly seven years, Steele has driven a van five days a week for Sandy Valley Transportation Services, providing patients in remote reaches of Kentucky with access to a range of medical services, from surgical follow-ups to addiction treatment to routine vision appointments.

Across the country, but especially in rural regions, having a reliable vehicle can make or break your health; according to a 2015 report from the National Conference of State Legislatures, an estimated 3.6 million Americans forgo medical care because they lack transportation.

Here, people proudly tell you: “We take care of our own.” Driving a friend, family member or neighbor to a doctor’s appointment, dialysis treatment or prescription medication pickup falls within that line of duty. But to do this, several things must be true: The driver must own a working car with enough fuel or cash to travel to offices that could be hours away, and a job or lifestyle that allows them to set aside precious weekday time when doctor’s offices typically are open. The passenger usually needs to come up with between $20 to $75 to reimburse the driver for gas and time. And in a place hard-hit by coal industry losses, where many people who filled these roles have left to find jobs elsewhere, the threads that have kept tightly knit networks of family and friends together are fraying.

“That’s one of the biggest problems in eastern Kentucky,” Steele said. “It’s not availability of health care. It’s accessibility.”

“It’s not availability of health care. It’s accessibility.”

Significant changes to non-emergency transportation — and other Medicaid services — in Kentucky could come soon.

Medicaid covers one out of five Kentucky residents, or 1.2 million people. Since expanding Medicaid in 2014, Kentucky has had the largest increase of Medicaid and Children’s Health Insurance Program enrollments among states that took advantage of the option under the ACA.

Statewide, 3 percent of Medicaid recipients rely on non-emergency medical transportation to manage their health, according to the latest analysis from the National Academies of Sciences, Engineering and Medicine. It’s not a terribly big number, but for each person who uses it, the service is vital, and in some cases, even life-saving.

What Medicaid reform could mean for patients

Medicaid has been expanded in 37 states and the District of Columbia since it became an option through the Affordable Care Act. Expansion has offered more people with limited income and resources access to health care, including guaranteed transportation to medical services (something not offered by private coverage). Millions of Americans rely on this transportation to access a range of health services, from dental check-ups to dialysis treatment, and that number could go up as Baby Boomers age and chronic illness rates rise.

A plan from Republican Gov. Matt Bevin, approved by the Trump administration Nov. 20, would allow the state to enforce Medicaid work requirements for able-bodied adult Medicaid recipients without children or disabilities. Under the state’s proposal, Medicaid recipients also could face premiums, lockouts and retroactive and waiting period coverage.

Here, people proudly tell you: “We take care of our own.”

This means among nearly 500,000 Kentuckians who received health care coverage when the state expanded access to Medicaid in 2014, income-eligible adult Medicaid recipients without children would lose access to health care — including dental and vision coverage and non-emergency medical transportation — if they can’t complete at least 80 hours of work, job training or searching, or community service per month.

The plan — called Kentucky HEALTH, or Helping to Engage and Achieve Long Term Health — is one of the first responses to a call from the Trump administration last March for states to experiment with how they deliver Medicaid benefits using Section 1115 waivers. The purpose of these waivers, according to the White House, was to “improve access to high-quality, person-centered services that produce positive health outcomes for individuals.”

Critics say the Department of Health and Human Services, along with Kentucky, are doing this to cut costs at the expense of the state’s most vulnerable residents. “When you eliminate transportation to medical appointments, all you’re doing is making people delay care, use the ER, ration their care, go to the doctor less, fill fewer prescriptions, and seek services less often because they’re unable to get a ride because they don’t have reliable transportation,” said Emily Beauregard, executive director for Kentucky Voices for Health, said.

Kentucky's 2018 fight over Medicaid Jan. 12: Centers for Medicare and Medicaid Services approves Kentucky’s request for a waiver, which includes work requirements. June 29: U.S. District Judge James Boasberg blocked Kentucky from implementing its plan. Boasberg said a review of Kentucky’s proposal showed “the Secretary never adequately considered whether Kentucky HEALTH would in fact help the state furnish medical assistance to its citizens, a central objective of Medicaid.” July 1: In response, Gov. Matt Bevin yanked dental, vision and non-emergency medical transportation benefits for roughly 400,000 Kentuckians. He reinstated them by the end of the month. Nov. 20: Centers for Medicare and Medicaid Services re-approves Kentucky’s waiver. April 1, 2019: If unsuccessfully challenged in the courts or by Congress, the changes would go into effect on April 1, 2019, and remain in place until Sept. 30, 2023, according to the federal agency’s approval letter to Kentucky Medicaid Commissioner Carol Steckel.

Those who support the changes say they would also prevent Medicaid fraud and abuse. Bevin said the work requirements would position his state “to lead the nation in transforming Medicaid in a fiscally responsible way” and that the waiver “is essential to the long-term success of the state’s Medicaid program.”

Overall, Kentucky officials estimated that restrictions in its state could save $331 million and cost 95,000 people their health care coverage under Medicaid, court documents showed.

The Kentucky Cabinet for Health and Family Services, which is in charge of implementing these changes, did not respond to multiple requests from the PBS NewsHour for comment on this story.

Other states, like Arkansas, have implemented similar work requirements, causing 12,000 people to lose Medicaid coverage. These changes could be a model for other states across the country that may be looking to scale back changes made through the Affordable Care Act, something the Republican-led Congress has so far yet to repeal and replace, as it has pledged to do.

Many health care providers say rather than solve problems, the changes pose a number of new issues. Patients who are cut out of Medicaid would flood the region’s emergency rooms, adding to the state’s medical costs, said Chad Street, the only full-time oral surgeon in Eastern Kentucky who accepts Medicaid patients. Emergency rooms “will be overwhelmed,” and due to the administrative burden of more paperwork and no changes to reimbursement, fewer health care providers, including Street, will accept Medicaid expansion patients

“Patients who are getting harmed in the proposal are the ones who fall through the cracks,” he said.

A lack of national data

Because there is scant national data, it’s hard to tell how many people in total use this service, or what the return on state investments may be. In 2013, Medicaid paid for 103.6 million trips, according to a 2014 estimate from the Texas A&M Transportation Institute. And under Medicaid expansion, an additional 270,000 new enrollees would need transportation services, one 2016 estimate from the National Academies suggested.

Medicaid has the largest among 88 federally funded transportation programs. Yet overall, funding for transportation services amounts to less than 1 percent of Medicaid’s overall budget — about $3 billion in 2015. But these services are hugely valuable in connecting the nation’s most vulnerable Medicaid recipients to medical care, the National Academies of Sciences, Engineering and Medicine analysis said.

And experts say it’s been especially critical in maintaining health care access in rural areas like Eastern Kentucky, where transportation, public or otherwise, can be hard to come by.

As it is, the system, run through a complex series of state-managed transit and third-party brokers, is fraught with poor oversight, inefficiencies, long waits, missed rides and thus missed appointments.

Kentucky’s problems are not unique. For as many people as it serves around the nation, Medicaid’s non-emergency medical transportation is generally complicated and riddled with issues. The service is offered across all 50 states and the District of Columbia, but no two systems are alike, says Linda Cherrington of Texas A&M Transportation Institute. Some states rely on statewide brokers. Some states contract with a managed care organization to handle the logistics of transporting Medicaid recipients to and from medical appointments.

Still, patients said if not for people like Steele, who drives the van to and from their rural homes, they would not be able to go to the doctor at all.

And as providers like Geraline Hatfield, a registered nurse who for 15 years has operated a primary care clinic mountains in Phelps, Kentucky, pointed out: If people “can’t get here without transportation, how are they going to get work” — and meet the state’s new requirements — “without transportation?”

“It’s a better benefit than it is a problem, I can tell you that”

This kind of transportation is critical for patients who visit Hatfield’s primary care clinic, along a winding mountain road worn down by rattling coal trucks.

Hatfield has lived here in Phelps, Kentucky, her entire life. She can’t imagine leaving, but because the local economy has taken such a hit through a loss of coal jobs, Hatfield said, most young people have gone to find work elsewhere, leaving behind an increasingly older, medically frail and disadvantaged population. For five days a week over the last 15 years, she has seen in her practice everything from brain tumors to kidney failure, breast cancer to diabetes and stubbed toes.

As many as one-fifth of her patients “would never be able to come here or go anywhere for medical care without that transportation,” Hatfield estimated, but she said the wait times can be difficult for patients. Sometimes, they don’t expect to stay through lunch time and become hungry as they wait for the van to arrive, she said.

“It’s a better benefit than it is a problem, I can tell you that,” she said.

The current system is not perfect, and wait times are a common complaint. Medicaid recipients often are picked up hours before their scheduled appointment and then may wait hours more before they can be picked up to return home.

People who want to check on their ride’s status often phone call centers hired by vendors, which may or may not have accurate information. Some people may be told their ride is around the corner when it’s in fact minutes or hours away. Sometimes, they discover the vendor didn’t know the requested vehicle needed to be wheelchair-accessible. Limited data documents these complaints, and Cherrington said there is nothing available at the national level to get a sense of how rampant or rare these instances are.

Patients like Curtis Hamilton have found ways to avoid the uncertainty. At age 7, retinitis pigmentosa scarred Hamilton’s retinas, leaving him largely unable to see color and light.

The beauty of this place — so close to the mountains and the sky — can transform into a danger during a medical emergency.

For more than four decades, he has been legally blind and relies on his parents to drive him to doctor’s appointments, including those at Hatfield’s clinic, and Stopover Church of God, where he plays an active role in his congregation. Hamilton and his wife, Debra Hamilton, live close to his parents, in an eight-decade-old cabin Hamilton’s coal-mining grandfather built by hand, up the holler from the family cemetery plot and his parents’ trailer. When it is time for his annual optometrist appointment, or if he needs to see his retina specialist, Hamilton said he pays his father $25 to take him to Pikeville, 38 miles away.

His parents are both in their 70s, and while Hamilton’s disability means he should not be affected by Kentucky’s changes to Medicaid, he said he is concerned that these changes could lead to an overall lack of transportation services where he lives.

“As time goes on, I’m probably going to have to depend on that service, if they still have it,” he said.

Tracking both success and shortfalls of this benefit can be tricky. Data to monitor how states deliver differs greatly from one to the next. Those numbers would help policymakers, researchers and the public better understand of the impact of current practices on health outcomes for Medicaid clients and how to develop and evaluate improvements.

“We need more and more transportation to get individuals to medical services because that enhances the opportunity to provide better medical care and overall lowering the price of medical and health services,” Cherrington said. “That doesn’t just have to be limited to Medicaid beneficiaries. Everybody can improve their transportation and get to better chronic care services.”

When transportation is a barrier to treatment

Melanie Mullins was 20-weeks pregnant and raising three children on her own when she decided she wanted to seek help for her year-long use of methamphetamine.

On Nov. 1, her 23rd birthday, her oldest son looked up at her and told her she was his hero. She picked up the phone and made a call to a maternity care center for pregnant women struggling with substance use in Louisa, Kentucky. She told the intake coordinator if they didn’t pick her up the next day, she would bail on treatment. She had once before.

Today she is learning how to cope with cravings and rebuild relationships at Karen’s Place, a house perched high on a hill covered in oak trees that overlooked Highway 23. It’s run by Addiction Recovery Care, based out of Louisa, Kentucky, which operates a network of 12 facilities that use medication-assisted treatment, along with therapy, peer support, drug screening and targeted case management to treat an average of 225 people each month.

“I decided to get help before I was caught,” she said.

After serving in the U.S. Army from 2015 to 2016, she said she sold methamphetamines, and was so successful she bought two cars with the money she earned.

She has since given those cars away, saying she did not want to keep vehicles “bought out of drug money.” One day, she said, she wants to go to college. But the thing that keeps her going more than anything: “I want to go and see my kids.”

She longed to be reunited with her two sons, ages 4 and 5, and a daughter, age 1, who waited for her 159 miles south at her father-in-law’s home in Pineville, in one of Kentucky’s impoverished counties.

Mullins said she wants to establish a support network to help her start again when she returns home, but she said those resources are tough to find. She doesn’t know any counselors where she lives, and the ones who do practice and accept Medicaid “don’t listen. It’s just in and out.”

While treatment for substance use disorder under Kentucky’s revised Medicaid plan is covered, Mullins is concerned about access to rides covered by Medicaid. Without a car of her own, she said, “I will probably have to use a lot of medical transportation.”

Addiction Recovery Care’s Chief of Staff Matt Brown said non-emergency medical transportation services haven’t innovated or become as efficient as he hoped.

“What becomes a barrier because people are less likely to use something that’s not tailored to their individual medical and transportation needs.”

In October, a report from the National Academies of Sciences, Engineering and Medicine that Cherrington co-authored studied non-emergency medical transportation nationwide and at the state level. Among other recommendations, the report suggested that state Medicaid agencies consider broader use of technology to innovate medical transportation services, including the adoption of rideshare apps, similar to Uber or Lyft.

This would allow agencies to electronically verify each rider’s Medicaid status beforehand, and people could also request and track the status of their ride. The apps would store the data for each ride’s date, time and location — a deterrent for fraud, but also an indication of demand.

Brown said he would like to see Uber or Lyft play a bigger role in expanding access to transportation and treatment.

But social justice advocates, including Georgia Burke, directing attorney for Justice in Aging in San Francisco, said not everyone owns a smartphone that would be compatible with apps, and people in rural areas may not even have cell phone service.

In the remote mountains of Eastern Kentucky, even satellite-enabled GPS devices lose signal, and not everyone can afford a cell phone or computer to track these services.

As it is, it’s not uncommon for a patient to “catch a Medicab” as early as 9 a.m. for a 1 p.m. group therapy session at a clinic, sometimes riding with five more people. It can take as long as five hours for the van to come back.

“That becomes a barrier because people are less likely to use something that’s not tailored to their individual medical and transportation needs,” Brown said.

Under Kentucky’s Medicaid waiver, a person struggling with a substance use disorder doesn’t have to meet the work requirement if they are receiving treatment. A person with the disorder who isn’t seeking treatment must work, participate in community service or job training or lose their Medicaid.

Brown, who has been in recovery for nearly five years after an 18-year addiction to pain pills, said the current system isn’t perfect and he supports Kentucky’s changes (People struggling with addiction “would be vital parts of our workforce”). But, Brown said he doesn’t know how long it will take to update Eastern Kentucky’s infrastructure to meet the region’s needs.

Kentucky’s latest approved Medicaid waiver for work requirements has already set off a new round of legal battles. A decision is possible before the waiver’s April 1 start date, but it could launch into further appeals. Jane Perkins, legal director for the National Health Law Program, which has resumed a lawsuit against the Department of Health and Human Services and Kentucky over these work requirements, said in a statement that the Trump administration’s decision to support Kentucky’s push “would reduce Medicaid coverage, restrict access to health care services, and harm the health of Kentuckians” by placing “a burdensome work requirement, premiums, and lockout penalties on Medicaid enrollees.”

“Medicaid is a health care program, not a jobs-training program,” she said.

Meanwhile, Kentucky Cabinet for Health and Family Services encourages people to log into the state’s website to ensure an enrollee’s name, address and phone number are correct (or risk losing benefits).

An uncertain future

Over the past decade, business for Sandy Valley Transportation Services, the public transportation agency Steele drives for, rose 42 percent. The business focuses in Eastern Kentucky’s Pike, Magoffin, Floyd, Martin and Johnson counties where the percent of people in poverty hovers above 30 percent — nearly double what’s seen statewide, according to Census data.

To request a ride, passengers must submit their request 72 hours in advance, and the transportation service vets paperwork to confirm a patient’s Medicaid status and that also that doctors had submitted proper paperwork. As many as half of patients Steele transports have appointments to receive treatment for substance use, he estimated — a fast and drastic change over the last two years. He doesn’t know if that’s because of a change in legislation or the epidemic is getting worse. Before that, he primarily picked up and dropped off patients for chemotherapy or dialysis.

Leann Prater, 33, sits in her oral surgeon's office days after she had to have 25 teeth extracted during emergency surgery in Pikeville, Kentucky. Photo by Laura Santhanam/PBS NewsHour ‘There’s way too many people out there [who] can’t get no help’ People most at risk under Kentucky’s proposed changes to Medicaid are people like Leann Prater. Before she had Medicaid, several teeth had broken off at the gumline, exposing her nerves. The 33-year-old twice sought dental treatment at the ER. Both times, she laid in bed for as long as five days, taking antibiotics because that’s all doctors there could give her. The third time she felt the pain deep in her upper jaw, in November, she thought it was another normal toothache. But by Sunday, the right side of her face began to swell. While this time she had coverage, her needs exhausted what an oral surgeon could deliver in his office. She was admitted to the emergency room, where 25 of her teeth were extracted, the roots removed, her abscessed jaw drained of pus. The total billed to Medicaid would be $3,385 — or roughly 460 hours worked at Prater’s job at a tobacco and cigarette shop, where she makes $7.35 per hour. Right now, Prater works 20 to 30 hours a week — enough to meet the proposed requirements. But if her hours are reduced and she doesn’t notify the state and then compensate for those lost hours, she could lose her health care again. “It’s crazy,” she said, speaking carefully since her right cheek remained puffy and sore. “There’s way too many people out there that needs something done with their mouth and can’t get no help.”

On this Wednesday, he pulled up next to Donna Smith’s robin’s egg-blue trailer. She was waiting in the cold. Smith, 42, has four children between the ages of 5 and 17. It was almost a quarter to seven. Her appointment was more than two hours away, and she was already nervous about the test she was scheduled to receive in Harold, 35 miles away from home. In July, Smith’s doctors had removed several tumors, including one the size of her skull, along with her uterus. She wanted to know why she continued to experience pain (“like a charley horse in the bottom of your stomach”).

From there, Steele drove five miles south to Phelps, where Paul Hurley, 58, sat in a motorized wheelchair on his white trailer’s front porch. Hurley wore a black baseball cap that said “Retired Miner” (he worked in a coal mine for about three years, he said).

Hurley was scheduled to see his radiologist in Pikeville for an ultrasound to check his abdominal aneurysm. Before boarding the van, he and Smith each smoked a cigarette. A black dog paced around them. Rheumatoid arthritis had twisted Hurley’s fingers like tree branches, and the cold tormented his aching joints. He winced when he rubbed his sore hands together to warm them. Steele sent a text message to Nancy Coleman, his dispatcher in Pikeville, to tell her he picked up the two patients. Another patient who lived above a nearby billiards hall had called to cancel that morning.

Gray morning light unveiled the mountains as the van rolled on. Under brown, bare trees, freshly decorated family graves sat high on hills behind trailers and houses. Two-by-four wooden crosses and heart-shaped garlands made of artificial red, pink and white flowers dotted the roadside in memory of where driving had proven too treacherous for others. Red-cabbed coal trucks rumbled by, sometimes rattling the van when they passed on the narrow roads. Burned-out trailers sat next to well-tended homes and yards, ready for Thanksgiving with inflatable lawn turkeys.

You couldn’t find a better place to raise a family, Steele says, describing how willingly people will help others in need. But, he warns, “you don’t want to do anybody wrong.”

He gets attached to patients and listens attentively for familiar names when the local radio station reads daily funeral announcements shortly before 8 a.m. He turns up he the volume so he doesn’t miss one.

It’s not uncommon for people to tell stories of losing a loved one because an ambulance driver got lost or took nearly an hour traversing winding mountains roads to bring needed care. The beauty of this place — so close to the mountains and the sky — can transform into a danger during a medical emergency.

Around 11:30 a.m., Smith emerged from her obstetrician-gynecologist’s office. She received a prescription for medication that should relieve the pain in her bladder.

The other patient, Hurley, was delayed leaving his medical appointments, so Steele’s dispatcher told him to drop Smith off at her home in Freeburn. Dolly Parton’s cover of “Swing Low, Sweet Chariot” played on the radio until the signal faded. Steele got antsy when the van grew quiet.

Along the way, her black eyebrows knit together when she looked out the windows at the overcast sky. Every now and then, she tipped her head back, shut her brown eyes and snuck in a nap. She had woken up at 5 a.m. and was exhausted. An unexpected road repaving project less than 10 minutes from Smith’s front door added an extra 30-minute trip across the Tug Fork, a tributary of the Big Sandy River, and into West Virginia.

For years, Smith said, she neglected her own health, especially when she was raising her children. If not for the van, Smith said she wouldn’t go to the doctor.

Over the last two years, she felt dizzy, her stomach ached and she said she endured three menstrual cycles a month. She let it ride, but “knew something wasn’t right.”

When her obstetrician-gynecologist examined her, Smith said the doctor told her she hadn’t seen a case like hers in 21 years of practice. What had been mistaken for a large uterus was a tumor the size of Smith’s head. A week later, doctors performed a hysterectomy. Medicaid covered the operation.

The van was her only way to go back and forth for those visits. Without it, she would not receive potentially life-saving care.

“I would have to pay somebody to take my kids, but I wouldn’t go myself,” she said. “I’m just now getting caught up on everything I have to have done for me.”