Transportation troubles hinder care for health care super-users

When a team of health-care and social service workers in Allentown went looking for frequent visitors to emergency departments and hospitals, they quickly learned that many were dialysis patients.

Ask those patients what's most important for maintaining their lives, and they'll, of course, say the dialysis treatment, when a machine cleans the bloodstream the way healthy kidneys would.

Next on the list? For many, it's transportation.

For a significant number of the patients served in the Allentown Super-Utilizer Partnership, the issue of simply getting to treatment is critical and sometimes more problematic than getting the treatment itself. It's a situation when life-and-death care can run into a jumble of federal and state rules. The picture is complicated often by the disabilities and haphazard lives of super-utilizer patients, who have complex health issues and are in and out of the hospital.

Locally, this collision created any number of frustrated customers, especially after last winter's storms. Even when the weather cooperates, however, patients say traveling to and from dialysis can take as much time as the three- to four-hour treatment.

Transportation problems are a "universal issue" for low-income, sick people, said Dr. Jeffrey Brenner, the leading promoter of super-utilizer programs like the one in Allentown. Indeed, it's a challenge for many low-income patients, not just super-utilizers.

"If you're very disabled, very sick, try catching three buses to get to the doctor," he said.

With a grant funded through the federal Affordable Care Act, a small partnership of health-care workers, case managers, social workers, community volunteers and clergy in Allentown seek to surround these patients — many of whom have multiple chronic health problems, mental illness and poor social settings — with services and attention to help them gain more control over their health and lives. With that, Brenner and his supporters say, patients' health will improve and health-care expenditures will decrease. And figuring out the easiest, least costly way of getting patients to and from their life-sustaining appointments is a key part of those services.

Through the efforts of the partnership and regional transit provider LANTA, improvements in the pickup and drop-off of patients seeking life-sustaining treatment have taken hold in recent months. But it will always be much more than a simple matter of pickup and drop-off for many patients.

Take the story of Sandra Lewis.

A mother of seven daughters, the 60-year-old Allentown woman cleaned rooms at the Allentown YMCA and lived modestly in subsidized housing in Cumberland Gardens and then in private apartments for most of her life. She took pride in her cooking, citing her Spanish rice, lasagna and chicken pot pie. "The real chicken pot pie," she added.

She eventually developed diabetes, but things seemed under control until about five years ago, Lewis said, when she was bumped in a store and fell, breaking a leg. A cascade of health issues followed, including kidney failure and congestive heart failure. Along with them came the social costs. She could no longer work and lost her apartment.

Diabetes also can wreak havoc on the circulatory system, threatening the feet and limbs of patients. For Lewis, foot infections became common, leading to multiple hospitalizations.

Lewis says these conditions landed her in five nearby hospitals — the Lehigh Valley Health Network hospitals in Salisbury Township and Bethlehem, the St. Luke's University Health Network facilities in Allentown and Fountain Hill and Sacred Heart Hospital in Allentown. By this time, Lewis' care was being paid for by Medicaid, the shared federal-state program for some low-income people and the disabled. Her admissions were so common, hospital staff would recognize her when she was wheeled in.

"They'd say, 'Oh, you were here before,'" Lewis said.

Another broken foot kept her in a double room in ManorCare in Bethlehem, which by this summer had become her home for two years.

On Aug. 4, Lewis says, she had a scheduled trip with LANTA's paratransit van service to see her podiatrist but she never got on the van. Whether it was a miscommunication or a missed trip is unclear; LANTA has no record of a complaint for that date from a ManorCare resident.

It is clear that Lewis did not get to her appointment and ManorCare staffers handled her foot care until her next appointment. Soon, though, her foot began to ache. Drainage seeped from the wound. An infection set in and Lewis was admitted to Sacred Heart.

This time, it was extremely serious. Doctors debated whether she needed the foot amputated. In the end, they grafted skin onto her wounded left foot, hoping to save it.

A ManorCare spokeswoman said federal privacy law prevented her from discussing Lewis' care directly, only saying that caregivers followed Lewis' doctor's orders.

No one can say for sure if Lewis' hospitalization could have been avoided if she had seen the doctor on Aug. 4. But her case shows how critical transportation is to patients' health and how a kink in the system can send health-care spending soaring.

Lewis' case is just a single anecdote in the story of how Medicaid has ballooned in Pennsylvania from $13.9 billion in 2000 to around $29 billion now. And it's super-utilizer patients driving that spending. Nationally, the top 5 percent of beneficiaries consume more than 50 percent of Medicaid spending.

"These are appointments that she cannot miss at all," said her daughter Christina.

After the September travel problem, Lewis was unhappy, but remained philosophical.

"Waiting for the buses to take you here and there is very bad," she said, adding, "God is good. I keep my trust in him."

Barriers to getting there

Like field generals who have to plot a new strategy every day, laying out the daily plan for the fleet of vans that carry diabetics, cancer patients and other ailing people — as well as qualified elderly people who are healthy — is a daunting logistical challenge.

LANTA, through its subcontractor Easton Coach, has about 450,000 van runs a year, picking up medical patients and others. LANTA's Medicaid transport program costs about $3 million a year, said former Executive Director Armand Greco, who recently retired.

Routes change as people move in and out of care programs and living quarters. Weather and traffic can throw schedules into a tizzy. Even with last winter's seemingly endless snowstorms, Greco said the van service was within a 30-minute window — 15 minutes ahead of schedule and up to 15 minutes late — about 90 percent of the time.

Transportation also can be confounded by patients' appointments, he noted. If a doctor is running late, a van to pick up the patient for the return trip either has to wait a few minutes or figure out another option for getting the patient home. "That happens a lot," Greco said. "Every time we make a move here, it affects what we do there."

While logistics are always a challenge, bureaucracy also plays a big role. Federal Transit Administration rules, the Americans With Disabilities Act and other federal measures dictate how LANTA can provide service.

For example, federal rules require LANTA to certify that riders have the least costly, most effective mode of transportation if they qualify for subsidized travel. For some, it's a pass on a regular LANTA bus. Those who use a wheelchair or are frail enough to qualify for door-to-door van service have to share the ride with other qualified passengers.

That means if it's most effective to pick up and deliver a rider going to a hair appointment before a rider needing life-sustaining treatment, so be it.

"We are not permitted to give priority to any type of service," Greco said. "If you called up and said 'I've got to be at my doctor's office at 'X' amount of time,' that priority doesn't change over someone who says I want to go to the movies."

The rules also don't permit bunching riders to one facility, unless it is the most efficient route for that day and time.

Further, Lehigh Valley patients are required to receive medical certification to qualify for subsidized transit. Patients have to get a physical at the Goodwill Keystone Area center on Lehigh Street in Allentown to confirm they need the van service, even those who are on dialysis or use a wheelchair. And while patients new to dialysis need immediate care, the process of getting to Goodwill and getting the physical could take weeks.

Angela Garner, a clinical social worker at dialysis provider Fresenius Medical Care in Allentown, said she has seen a number of patients hospitalized because of the lag time in getting approved for transportation.

Garner this summer recalled a woman new to the Lehigh Valley who was diagnosed with end-stage kidney disease and went right back into the hospital because the van went to the wrong home.

"This story is very common," she said. "The bus came to the wrong house, she ended up in the hospital and Medicaid pays."

Josh Chisholm, deputy director of the Allentown church-based community organizing agency Pennsylvanians Organized to Witness, Empower and Rebuild — POWER — and a member of the super-utilization partnership, has heard multiple stories about the clash of patient needs and subsidized transport.

One patient, he recalled, had to be hospitalized at great expense after missing a ride to dialysis. That's a lost reimbursement to the dialysis center as well.

"When LANTA doesn't pick them up, it turns into a $70,000 train wreck," Chisholm said.

For a comparison, Chisholm priced a 15-passenger Ford van. It cost $7,000 less than the man's hospital stay. For the cost of his hospitalization, Chisholm said, "this patient could have bought his own van."

The partnership earlier this year enlisted a Lehigh University graduate student to study the van system's routes. At a meeting at Christ Lutheran Church in Allentown in June, Peiran Zhao presented recommendations to revamp van service, including providing additional services to dialysis patients and basic medical training for van drivers.

The partnership's big goal was to get a dedicated van service just for patients needing life-sustaining treatment. But it would not be possible under regulations set by the Federal Transit Administration, Greco said. "All requests for trips are accepted on a first-come, first-served basis," LANTA Van's Customer Guide says. "There are no wait lists — any trips that are booked are provided."

Dialysis centers and their patients could set up their own specialized transportation plan, Greco said, but that would require their own dispatching, arranging for daily pickup and drop-off and administration.

So the partnership worked with LANTA on what could be accomplished. Among other agreements, LANTA will begin providing van service applications in Spanish; will tighten communications with dialysis providers when storms threaten; and will provide rides to patients receiving life-sustaining treatment such as dialysis and chemotherapy for 30 days while their applications are being processed.

But all the streamlining of registrations and communications improvements will do nothing to help when traffic congestion and tight scheduling leave a patient waiting hours for the ride home.

One day this summer, Elaine Dries waited patiently in the shade outside the Fresenius Medical Care facility on Hamilton Boulevard in South Whitehall Township. She had a 10 a.m. treatment and was eager to get back to her Allentown apartment. "I'm a diabetic," she said. "I need to eat before my sugar goes low."

This particular day, Dries' ride arrived before 4:30 p.m. If everything went smoothly, she'd be back home in time to get care from an aide, who visits during the week from 5:30 p.m. to 6:30 p.m. Dries, who uses a wheelchair, can't afford to miss a ride or arrive late.

"Sometimes I miss her and then she just gets paid for free and I'm stuck," she said.

After Dries left, another van, driven by Isabel Nogueira, came for the next group of patients. Sweat beaded on her forehead as she wheeled patients onto the bus ramp and locked one after another in for their ride home.

"We hustle," Nogueira said. "It's an ongoing battle."

This day, the last patient to get picked up — at 5:41 p.m. — finished his dialysis at 3:15 p.m. He waited 21/2 hours for the van. Then his ride home began.