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Poor oversight of Medicaid managed care programs takes toll on patients Date: 08/22/13

Jenni Bergal
Jenni Bergal

By Jenni Bergal

When Kaiser Health News hired me as a freelance contractor earlier this year, I was given only one assignment: Write about Medicaid managed care.

It’s an important topic, and I had co-authored two investigative series about problems with Florida’s program in the 1990s when I was a newspaper reporter in Fort Lauderdale. Now, about 30 million people on Medicaid belong to a privately-run health plan. Millions more are expected to be enrolled as Medicaid expands under the Affordable Care Act starting next year. Thirty-six states and the District of Columbia have enrolled some or all of their Medicaid population in risk-based managed care plans run by insurance companies, which were paid about $108 billion last year.

For my first story, I decided to examine how well the states are overseeing and monitoring the quality of care provided by the managed care plans they contract with, and how states compare with each other.

That was easier said than done.

It turned out that while the federal government requires states to set up quality standards for Medicaid plans and monitor their compliance, it doesn’t specify how to do that. That has resulted in a patchwork of requirements and data collection that make it difficult to do comparisons or figure out whether patients’ health is actually improving.

I talked to health policy experts, who agreed that there was tremendous variation between states, both in the quality of monitoring and the quality of care.

I started looking into how states evaluated managed care. Some required accreditation from the National Committee for Quality Assurance; others did not. Other quality measures also varied. And federal rules didn’t offer specifics, such as how many doctors a plan must contract with or how often state officials have to review the adequacy of a plan’s network of doctors.

I came across a very helpful analysis of how 20 states monitor Medicaid managed care quality by The Urban Institute. Kaiser Family Foundation’s survey of Medicaid managed care in 50 states also provided lots of good statistical information. I talked to health policy experts and state Medicaid directors and staffers. I pored through reports from the Government Accountability Office and the U.S. Health and Human Services Inspector General that focused on Medicaid managed care. Even the head of the industry trade group told me his members were frustrated by the lack of consistent quality measures from one state to another.

I also interviewed advocates and legal services attorneys in a number of states, who complained about the lack of aggressive oversight and monitoring of Medicaid managed care.

I ended up writing an overview story that ran in Kaiser Health News and USA Today.

As I was talking to advocates, I kept thinking that while health policy stories are important, so are people stories.

Several people I had interviewed mentioned that one state in particular was having a rough time with its new Medicaid managed care program: Kentucky.

Ever since the commonwealth scrambled to move about 550,000 Kentuckians on Medicaid into managed care within a four-month period in late 2011, it had been a bumpy road.

Hospitals and doctors accused the health plans of delaying or denying payments, prompting state legislators to hold hearings. The plans announced they were losing huge amounts of money because the state had underestimated the costs and set rates too low. A large regional health care system sued one plan. Another plan sued the state and has already dropped out.

Patients said they have been denied treatment or forced to travel long distances in rural areas because there’s no longer a nearby doctor or hospital in their plan’s network. And advocates argued that the care system for vulnerable mentally ill Kentuckians had deteriorated significantly.

I interviewed doctors, hospital officials, the state Medicaid director, legislators and advocates, among others. But I also wanted to humanize it, to explain how real people were affected. And I needed to be in Kentucky to do the interviews with families in person.

Advocacy groups helped put me in touch with doctors and other health and social services workers who knew of patients experiencing problems under the new system.

That’s how I learned about Kaden Stone, a tiny, happy-go-lucky, energetic 8-year-old from rural south central Kentucky who quickly showed me his scars from some of the dozens of surgeries and procedures he had endured after he was born without a rectum or bowel control.

Kaden’s mom had been fighting unsuccessfully to get his Medicaid health plan to pay for PediaSure, an expensive nutritional drink that he uses several times a day to keep his weight up because he can’t digest many foods. Medicaid had always paid for the supplement, as had his Medicaid health plan until it suddenly denied coverage for it last fall, saying it was not “medically necessary.”

Kaden was the lead in my story, which ran on Kaiser Health News and in The Washington Post. I also profiled the VanHoeves, of southeastern Kentucky, a missionary family who had been trying to get their Medicaid plan to pay for testing and counseling for their son, Reuben. The bright, but troubled, 17-year-old was depressed, often hyper-focused and got agitated if he had to do multiple tasks. Reuben’s doctor believed the teen had Asperger’s syndrome and recommended he get testing at an autism center an hour away because no local child psychologists were in the plan’s network. But the health plan denied the request.

I also visited Participation Station in Lexington, a “peer-run” center that offers education and support to adults with severe mental illness. More than half a dozen people sat around a table describing the problems they’ve encountered post-Medicaid managed care.

“Oh, my God. It’s been a nightmare,” said Oyo Fummilayo, an outspoken 63-year-old who suffers from chronic clinical depression and post-traumatic stress disorder and said she can become violent if she is not taking medication.

Fummilayo said that when she brought her pre-authorized prescription to the pharmacy, she had to wait 10 days before the managed care plan gave its approval.

“I cried every day,” she told me. “I tried to stay away from people, actually. I sort of isolated myself because I knew if anybody said anything to me that I heard the wrong way, it would be devastating to me and to the other person. I don’t tend to act on myself. I tend to act on other people.”

These are the stories that can make health policy issues come alive. So can the stories in which you expose a systemic problem that gets little attention but affects lots of people.

As health care reporters forge ahead covering the implementation of the Affordable Care Act, it’s important to keep peering into those nooks and crannies and talking to the people most affected – the patients.

Jenni Bergal is an investigative reporter who specializes in health care. She previously was a senior editor at NPR, a project manager for The Center for Public Integrity and an investigative reporter for the South Florida Sun-Sentinel. She is co-author of the book, “City Adrift: New Orleans Before and After Katrina.” She has won dozens of journalism awards, including the Gerald Loeb Award and the Worth Bingham Prize. She is a two-time Pulitzer Prize finalist.