The move to shift Texas’ Medicaid program from a state-run system to a managed care system was intended to cut costs and improve the coordination of sick Texans’ care. Instead, it cost the state billions while patients lost access to critical care, journalists J. David McSwane and Andrew Chavez discovered in their “Pain and Profit” multi-part investigation for the Dallas Morning News.
The series started with McSwane hearing murmurs from parents, “saying they recently had been lumped into this private Medicaid system and their kids were being denied all kinds of services and drugs that they needed,” McSwane said in a phone call with Journalist’s Resource. “It just seemed like there was something there, so I wrote a story about what they were saying was happening.”
“Around that time, we heard about a baby, a foster baby who had nearly died,” McSwane continued, “because he pulled out his tracheostomy breathing tube. He was supposed to have a nurse there, but the company in charge of his care denied it, and it just sounded pretty horrific … From there, we wondered how much of this has to do with this managed care system?”
McSwane posed questions to the Texas Health and Human Services Commission about the breathing tube incident. The commission, which oversees the state’s provision of Medicaid, the Children’s Health Insurance Program, and other health care services, denied that it had happened, McSwane said. “We just felt like our questions weren’t quite being answered, so we started to dig in.”
Through tips, McSwane and Chavez were able to find the baby, D’ashon Morris, who is now in a persistent vegetative state. He has seizures daily and is reliant on machines and drugs to remain stable, McSwane and Chavez have reported.
“What had happened to him was really sort of a step-by-step breakdown of how this system was failing patients,” McSwane explained.
Through public records requests, statewide door-knocking efforts and original data analysis, the two put stories and numbers to the failures of the system. “We reviewed more than 70,000 pages of documents, including patient medical records and material that state officials and the companies tried to keep secret,” they write in their series. “We crunched financial and insurance-industry data and talked to hundreds of families, doctors and policy experts.” Here’s how they did it.
“This system was so big and confusing and murky that we started by casting a wide net,” McSwane explained. “I was asking generally for contracts and audits, things like that.”
Eventually, McSwane and Chavez honed their approach. Here are a few of their tips for getting relevant public records.
- Narrow your requests by key words. Chavez looked at the deliverables — the goods and services promised in the contracts between the state and the managed care organizations — and then requested documents with mentions of the specific items listed in the contracts. “We found a lot of our stories in looking at the stuff [reports] that the state received from companies that it had not itself analyzed,” Chavez explained. “Every contract outlines the stuff that has to be delivered back to the state and the intervals that it has to be delivered on… it was easy for us to go in there and see not just what was supposed to be in the various reports, but what the volume was going to be like on them. And that allowed us to find documents that we wouldn’t have otherwise known existed.”
- Ask industry experts for help identifying terms and phrases to look out for. “Ultimately we were buried in tens of thousands of records,” McSwane said. “Being here in Austin, I’m able to form some connections with state government, and eventually people would guide me toward stuff that made our lives a little bit easier.” He explained, “For instance, we were told to request all email that contained sort of ‘trigger words’ that are really only used in bureaucracy — for instance, ‘member harm’ — and that request ultimately pulled thousands of emails that were directly related to people being hurt as a result of managed care failures or policies or denials.”
- If you think an agency is unlawfully denying a records request, call them on it. “Sometimes it’s just kind of calling them on it — sometimes it’s educating agencies on how they’re supposed to do their own jobs,” McSwane said. “Part of what we were noticing was it didn’t seem like the commission knew what it had, because its record-keeping was so discombobulated … We were told ‘Oh that doesn’t exist, we don’t have those.’” So he talked to sources that said the records did exist and, armed with that new information, returned to the commission. “I said, ‘Well, what about this?’ to the commission, and it turns out — lo and behold — they did have a bunch of records,” McSwane said.
- If you’re denied a records request, look at the agency’s records log to see if anyone else has received the information. Public records request logs provide a history of requests made to an agency along with details of how the agency responded to the request. McSwane explained that in one instance, the records log revealed lobbyists had requested and received documents that he was interested in. “We were able to show that, yes, you have provided this in the past, so we’d like it, too,” he said “And then, what do you know? A few weeks later we had some accounting.”
- Check the records law. “Under the records law, we presume everything is public, so we’ll request it and then if it’s denied we’ll fight it,” McSwane said. “Sometimes we have to send letters to the attorney general; more than once we got our attorneys involved to advocate on our behalf to the attorney general.”
- If at first you don’t succeed … “Come back with a more narrow records request, such as ‘I want these emails containing these words,’” McSwane suggested. “As you figure out what they’re trying to deny, you can generally find ways to get what you want that they can’t justify withholding under an exemption. It’s kind of a process, and more than once we had about four records requests where we were trying for the same thing in different ways.”
“The people who are being affected by this system, it’s not like we could crowdsource on Facebook and find them, because most of them aren’t on the internet, or they’re disabled and/or extremely poor, and they’re not paying attention to Twitter,” McSwane said. “So, ultimately, connecting these decisions to human outcomes was a huge challenge.” They used the following strategies to locate sources:
- Build trust with the sources you have. “At the end of the day, some sources had to take risks to get us information about specific individuals who were being harmed. And that required months and months of building trust,” McSwane said.
- Protect your sources. Medical records are protected by the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which places restrictions on access to these records within and without the health care system. “In some cases, we had to get patients to sign HIPAA waivers so that we could get their information directly from the state,” McSwane explained. “It really just takes some sensitivity to protecting your sources, but also protecting personal information. We didn’t include any personal information for people we hadn’t talked to on the record.”
- Search records logs to find potential sources. These logs are essentially lists of other individuals who might have relevant information, like attorneys, who often make records requests, Chavez explained. “Folks who are denied care, if they have advocates or a little bit of knowledge of the system, they’ll end up being represented by disability attorneys,” McSwane said. “So I reached out to them, said, ‘Hey, who do you have who might be willing to talk?’ and it took about three steps and a HIPAA waiver, but eventually I was connected with people.”
- Start knocking on doors. To get government workers to talk, McSwane said he “did a lot of door stepping.” He continued, “I’d get a lead on a name or find somebody in an email and I’d try to get them after hours and see if they’ll help me out.” He cast a wide net and his persistence paid off: “After a while you get the right people who want to help you.”
- Do it yourself. McSwane and Chavez replicated two state-ordered studies meant to assess the outcomes of the managed care operation. In one instance, they analyzed the raw data collected in a prior study. “We did the estimate for them,” they write in Part 2 of their story. “Using the most conservative assumptions, we found that at least 8,000 patients – and as many as 14,000 – in that program may be going without the services they need. That’s out of about 50,000 total.” In another instance, they replicated a “secret shopper” quality assessment in which researchers called health care providers looking for appointments. The state’s study neglected many health care specialties. “So The News did its own study,” they write. “We called a random sample of the specialist providers listed in networks for three managed-care companies.” They found that 2 out of 5 providers listed led to dead ends – either the specialist wasn’t practicing at that office any longer, or they didn’t accept the insurance plan.
“I think that we can relate to that human experience far more than we can utilization review data, things like that,” he added. “We just tried to tell a human story and put the data where it belongs.”
This article was originally published on How they did it: Reporters find dire problems with Texas’ Medicaid system