Medicaid in Florida: 2 million kids. $24 billion battle. (Part 1)

Before he nearly starved to death, Malik Staton was a goofy, charming 12-year-old with an infectious smile, good grades and the kind of potential that teachers get excited about.

But life at home was difficult. His parents got divorced. His father went to prison, and Malik took on the role of the man of the house.

Malik was stoic at first, telling his mom that he would help her with his five younger siblings. But the self-imposed pressure was too much. Malik stopped eating.

As his weight dropped, the boy’s behavior became more and more desperate. He raged when one of his brothers or sisters got too close to him. On one occasion, he struck his mother. On another, he disappeared overnight.

Last January, after Malik had lost 27 pounds in eight weeks, his mother Anya took him to see his pediatrician, who was shocked by the boy’s appearance — and by his pulse rate, which had dropped to 70, then 60 beats a minute from a normal peak of about 100.

The doctor tried to get Malik into therapy through a program that would accept the family’s Medicaid insurance, but the boy fell outside the agency’s mandated treatment boundaries.

He did not fit the profile of a chronically troubled youth. He wasn’t addicted to drugs or hanging out with a rough crowd. Malik was simply starving.

And the health care system that Florida has in place to help such children and their families very nearly let him die.

Malik is among 2 million children in Florida — about half the state’s under-20 population — who depend on the state’s $24 billion Medicaid program for health care.

The program has a troubled past. Ten years ago, parents, pediatricians and pediatric dentists were so fed up, they sued the state for denying care to children.

Their stories were harrowing: a developmentally delayed child with AIDS was told to wait six months to see an ear, nose and throat specialist, even though his ears were throbbing and he was screaming in pain.

A 3-year-old child with pancreatic disease and chronic tooth decay was dropped from his dentist, who stopped accepting Medicaid patients. While his mother searched for another dentist, the tooth decay had so diminished the boy’s appetite that he was only drinking milk.

Pediatricians testified that their Medicaid patients with broken bones were unable to find anyone to set them, and said the state was guilty of medical neglect.

In December 2014, a federal judge fundamentally agreed with the child advocates, charging that Florida’s health agencies had denied care to Medicaid-enrolled children and deprived all 2 million of them of their rights to a baseline level of care.

But the litigation continues. In the summer of 2013, after years of legislative wrangling, Florida began rolling out a statewide privatized managed care system that delivers Medicaid benefits through private insurance companies. With nearly all 4 million members now enrolled in private health plans, this system theoretically streamlines the payment process for physicians and improves the availability of treatment.

The state says the new system is working, that the problems identified in the lawsuit refer to a program that no longer exists.

They say that poor people in Florida have never had better medical care. As proof they point to consumer satisfaction surveys recently completed by parents with children in Medicaid, showing that 81 percent would rate their plans at an 8, 9 or 10 on a scale of 0 to 10.

Critics say care has never been worse. They point to the following:

■ Florida ranks 50th out of 51 states and Washington, D.C., in per-child spending on Medicaid — $1,707, according to the most recent data analyzed by the Kaiser Family Foundation, ahead only of Wisconsin. Florida spends per child about one-third of the amount that top-spending states allocate.

■ Half the children in Florida’s Medicaid system do not receive adequate preventive care, and two-thirds receive no dental care, according to the latest state data provided to the federal government, which describes access before the statewide managed care rollout.

■ Doctors treating Florida’s Medicaid-insured children receive less than half the amount they receive for treating seniors covered by Medicare, according to an analysis conducted by the Urban Institute.

■ Larger percentages of children missed out on preventive care in 2014 than before the 2005 lawsuit.

“I have kids and babies with asthma who have waited three days for breathing treatments, gasping, struggling to catch their breath and choking,” said Dr. Carola Fleener, a longtime Sarasota pediatrician and owner of Sarasota Children’s Clinic.

One of Fleener’s patients, a newborn baby, waited more than two weeks to receive a life-saving sleep apnea monitor to alert her teenage mother when the infant would stop breathing.

The 19-year-old said she called 25 companies before one agreed to bring the machine. But a few days later the company took it back, saying Medicaid would not pay for it.

Without the monitor, someone had to constantly watch to make sure the baby did not stop breathing and die.

“I have a child in medical foster care, and in the four months since the transition to Medicaid managed care, he’s been placed into five different Medicaid programs,” says Dr. Patricia Blanco, a Sarasota pediatrician.

“The child came to me malnourished and incredibly delayed. He was given nourishment and started to gain weight and received some therapy, but the child has had so many interruptions of care that now he’s stagnant in development,” Blanco said. “The system is still broken, and it’s going to get worse.”

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In late January 2015, Malik, weighing 66 pounds — 30 pounds less than a healthy body weight for his height and age — attacked his mom after she tried to get him to eat dinner. Anya called the police to take him to a psychiatric facility.

He was admitted first to a psychiatric treatment center, then to Sarasota Memorial Hospital, where he was diagnosed for the first time with anorexia, obsessive compulsive disorder and depression. Doctors inserted a feeding tube to stabilize him.

As a hospital with a general-purpose pediatric unit, Sarasota Memorial could not provide specific treatment for eating disorders, but the hospital’s social work team, led by case manager Teresa Smith, got to work trying to find a treatment center that would accept his Medicaid insurance.

Malik’s Medicaid insurance company at the time, Integral Quality Care, sent Smith a list of about 10 facilities in the state. But when Smith called, none of them would take Malik. None even provided the treatment Malik needed.

Smith called treatment centers nationwide, and while they were all very sympathetic to Malik’s story, as soon as she mentioned Florida Medicaid, they said no, we don’t accept that.

But Smith kept dialing.

“It was so heartbreaking,” she said, “because we saw that he’d suffered so many traumas already. He had to have a chance,” Smith said. “For a child, how could you ever give up?”

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Managing the complex health needs of millions of the most vulnerable children and adults is not easy. Federal Medicaid law is clear that no matter where children live, they are entitled to a baseline level of medical care.

Based on interviews with families, it’s clear that the availability of care varies across the state. Families who live in cities such as Tampa or Miami with many medical providers say they have little trouble finding a doctor who will accept their Medicaid insurance.

But families in suburban or rural areas must make long drives to see a doctor and often wait months for an appointment.

Doctors struggle to provide care at Medicaid rates as low as $14.30 for a visit, and many have dropped some or all of the Medicaid insurance companies that operate in their region. That leaves patients in a constant state of uncertainty. The way they see it, when they find a doctor who will take their insurance, it’s just the luck of the draw.

State regulators are working with private health plans to transform what they say was a formerly inefficient and reactive program into a data-driven Medicaid managed care system that provides the highest level of care for the greatest number of people.

The early results of the statewide transition to Medicaid managed care are mixed. Nearly all of Florida’s Medicaid health plans met the basic requirements set by the state in the first six months of statewide Medicaid managed care.

But during that same time, barely half of infants made it to all six well-child checkups in their first 15 months of life; about 10 percent of children ages 7-11 years didn’t have access to a primary care practitioner; and 45 percent of adolescents missed out on key immunizations, according to performance measures for Florida Medicaid plans published by the National Committee for Quality Assurance, a nonprofit health plan accreditation organization.

It’s a complex system that, when operated well, ensures access to preventive and emergency care for the state’s most vulnerable residents.

But advocates see little change from the Medicaid program that parents sued in 2005. In frustration, U.S. Rep. Kathy Castor, D-Tampa, wrote a letter to the secretary of the U.S. Department of Health and Human Services, Sylvia Burwell, asking her agency to intervene to ensure better care for the millions of kids enrolled in Florida’s Medicaid program.

“Sick kids are not going to do as well in school and they will not to be well prepared to compete against their peers from other states with stronger health systems,” Castor said in an interview with the Herald-Tribune.

“If Florida lawmakers were smart, they’d make this small but important investment in the lives of their children. Most of them are going to stay here in the state, and we need a healthy future workforce,” Castor said.

She said she’s had talks with Burwell, but they’re still working out the details.

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After three months in the hospital, Malik’s weight and heart rates were up high enough so that he was discharged from Sarasota Memorial at the end of March. But even on the car ride home from the hospital, it was clear he wasn’t better.

By the end of May, his heart rate dropping further and his hair patchy from malnutrition, Anya took Malik to the emergency room at Sarasota Memorial.

Within a few hours, his dehydrated body went into convulsions. Doctors later told Anya that had he not come into the hospital that day, he probably wouldn’t have lived through the night.

The boy’s care team, headed up by Dr. Chinyere Uwah-King, the lead pediatrician on his case, and case manager Teresa Smith, contacted a treatment center in Clearwater. The facility, Fairwinds, had a bed for him if someone could figure out how to pay the bill.

But despite considerable pressure from Malik’s advocates, his insurance company, Integral, denied a formal request for the boy to receive inpatient treatment.

For the next two months, while Malik’s weight was increased via a feeding tube, his mother appealed Integral’s denial.

Finally, Anya and her team were granted a court hearing via conference call with Medicaid officials to discuss the case.

The hearing lasted 13 minutes. Of course Malik needed inpatient treatment, Integral’s chief medical officer said.

During the conference call, Dr. Uwah-King could not contain her frustration. “What was almost unbelievable to me, as we were trying to get Fairwinds to finalize acceptance for Malik — let’s be blunt — it seemed that there were almost stalling tactics from Integral and they tried to block Fairwinds’ approval.”

The hearing officer, who represented the Department of Children and Families, apologized. She explained that they were “still working out the kinks” with the new Medicaid managed care companies.

Integral agreed to fax over the one-page payment form to Fairwinds that day.

“I couldn’t believe it was just a one-page fax,” Anya said. “After everything we’d been through, it was only one page.”

Malik was admitted to Fairwinds on Sept. 1.

Under federal Medicaid law, children are entitled to preventive screenings, dental, vision and hearing care, and treatment for any health issues discovered during a visit.

The state’s contracts with Medicaid managed care plans require that the plans create an adequate network of medical providers within a reasonable distance from a member’s home. If the plans fail to comply, the state can fine them.

For families who believe their children are not receiving adequate care, there is a complaint process that includes a website and a hotline.

It is not well known by parents. Anya didn’t learn of the complaint hub until the conference call hearing.

In November 2014, the first full month of statewide enrollment in the Medicaid managed care plans, there were 182 patient complaints filed in a system with more than 4 million members.

That rate held relatively steady for the first year of managed care.

Florida Medicaid Director Justin Senior says he is “gratified” by the low level of complaints.

“Based on this data, we see that people are happy with their plans and getting the care they need.”

Patient advocates see the low rate of complaints as evidence that few understand their rights.

“Often, it’s not just that they are unsure how to make a complaint; it’s that they are unaware they even have a valid complaint or grievance to file,” said Amy Guinan Liem, an attorney with Florida Legal Services.

“People generally assume that they are getting accurate information from their health care providers and health plans, so when they are told that they can’t get an appointment or access medically necessary services for six months, it’s very likely that some patients will just accept that.”

Complaints can lead to fines and sanctions again the health plans. But this is rare.

From July 1, 2013 to Oct. 22, 2015, the state imposed 154 fines on insurance companies, according to data from the Agency for Health Care Administration.

All but five were for paperwork violations: failure to submit a file, failure to timely file a report, failure to follow submission guidelines.

Though they look like paperwork problems, Senior said that in a managed care system, failure to file paperwork is directly related to patient care.

“The reports tell us if patients are getting their medication or had a preventable hospitalization, and failure to get timely data means that we don’t have an accurate picture of our program and we can’t go to bat for our patients,” Senior said.

Integral was not fined for its handling of Malik’s case.

Last November, Integral was bought by another insurance company, Molina Healthcare, which declined to comment on Malik’s case.

Malik came home before Christmas and Anya had high hopes for the holidays. This year was dramatically different.

Last year he could barely be inside the house when his family ate meals. This year he sat at the table, ate Christmas dinner and had a slice of pumpkin pie.

“Now that I’m home, I just want to stay home and be part of my family’s life, and do good at school,” he said.

His hair has nearly all grown back. He is working hard to make up for the year of school he missed. While eating will likely be a lifelong struggle, he’s able to be out in the world. The highlight of this holiday season was seeing the latest Star Wars movie.

His mother, while overjoyed at his return, spends hours a week driving Malik to doctors’ appointments throughout Southwest Florida and haggling on the phone with the new insurance company to arrange for the boy’s continuing care.

“It’s the same old thing, just like before,” she said. “There’s a lack of any element of compassion from the insurance company, which you’d probably find with most insurance companies, I guess, but it seems like there should be a little bit more compassion when you’re dealing with low-income families.”

“Medicaid reaches the most vulnerable people in society, who are going to have the most difficulty navigating the system, who have the greatest need and the ones with the smallest voice, the least heard.”

The good news, she says, is that if you can figure it out and nail it down somehow, you can get the care you need.

Anya, who cut back to part time in her job as a caregiver at a foster home to manage Malik’s illness, is now taking college classes to become a hospital social worker. Her goal is to get a job with insurance coverage so her family no longer has to deal with Medicaid.

[This story was originally published by the Sarasota Herald-Tribune.]

Photographs by Rachel S. O'Hara/Sarasota Herald-Tribune.