Behind “Right to Fail,” a ProPublica-Frontline Collaboration to Overcome Roadblocks and Privacy Restrictions
Reporter Joaquin Sapien interviewing Nestor Bunch.
In early 2017, I received a tip that the New York State Department of Health was trying to evade a federal court order that required officials to move thousands of people with mental illness out of troubled adult homes and into their own apartments.
The landmark ruling had grown out of a 2002 Pulitzer Prize-winning investigation in The New York Times, which exposed the group homes as centers of neglect and abuse. Advocates sued. Ultimately, U.S. District Judge Nicholas Garaufis ordered the state to offer adult home residents the opportunity to transition into their own apartments under a system called supported housing. The idea was to give people enough help to make it on their own without being overly intrusive.
To get a sense of how the existing system worked, I began visiting adult homes, including Oceanview Manor on Coney Island. In the time I spent there, two people died; one resident slashed another with a knife; the police were a frequent presence. I could see that residents lived in boredom and squalor, with little in the way of therapeutic services. Some ate from trash cans. Others begged for change. They complained of predation and thievery. Some had been there decades.
I wrote what I saw, and then I kept digging.
I started to hear stories of those struggling in their new apartments, almost completely out of sight from the state. An independent court monitor appointed to oversee the transition had noted in his reports that the state failed to track bad outcomes for those who had moved out of adult homes. While the monitor said many in supported housing were doing well, he recounted cases of some who were not. My editor, Alexandra Zayas, and I found the anecdotes alarming, both in the depth of the despair and the lack of involvement by state and social service agencies.
One woman stopped taking her medication, began soliciting sex from passing cars, swapped alcohol for drugs with neighborhood children and ultimately became homeless. We began thinking about how to assess the extent of the problem. If the government wasn’t tracking it, maybe we could.
Our quest, captured in a FRONTLINE documentary that airs tonight at 10 p.m. EST, led us into a kind of journalistic and ethical minefield, fraught with questions about consent, privacy, civil rights and the future of care for a population made a perennial promise of a better life that too often falls short.
Here is how we navigated them, for three of the men whose stories appear in the documentary.
Early on, I heard about a man with schizophrenia whose experience in supported housing reflected its biggest shortcomings. He was described to me as almost childlike in his naivete, unable to care for himself. At first, I had only a pair of initials to go on — the wrong ones. Eventually, I learned his name was Nestor Bunch.
People with severe mental illness can be difficult to track: some wind up on the street or in psychiatric hospitals; phone numbers often change. After a series of dead ends, I was elated when I found Bunch — until I realized he could not reliably narrate his own life. As he jumbled the timeline of his addresses and experiences, it became clear he had a traumatic story to tell. It involved finding his first roommate naked and dead, landing in the hospital with a serious injury and being sent to the trash-strewed apartment of another roommate who died.
By that point, I had partnered with Tom Jennings, a producer with FRONTLINE. We knew that if we were going to tell Bunch’s story, we would need to find sources who could speak to his experience and obtain the records that documented their accounts.
This raised a thorny question we would have to confront again and again. Medical records are private, for good reason; mental health records, even more so. Bunch would have to sign them over to us. Could we reasonably expect him to make a coherent decision about releasing such personal information?
After many long discussions, Jennings, Zayas and I decided it was imperative that we collect such documents; that we explain to Bunch in the clearest possible terms why we were doing so; and that we get them from as many entities as we could.
While it was true that Bunch and his peers could be prone to delusions, hallucinations and mania, the state had decided that they could choose for themselves where and how they wanted to live. It seemed fair that they should also be able to make decisions about who could see their records. We consulted veteran mental health reporter Meg Kissinger, who teaches at the Columbia University School of Journalism. She urged us to let our subjects tell their own stories, in their own words; this included sharing records if they agreed.
In Bunch’s case, we were fortunate to notice a Christmas card in his room with the return address of Nora Weinerth, a family friend. She told us the remarkable story of his late mother, a grassroots mental health advocate who fought for independent living. Weinerth felt strongly that sharing Bunch’s story would help fulfill his mother’s wish to destigmatize the plight of people with mental illness.
And so we began the long process of asking Bunch to fill out release forms, often getting them notarized, and taking them to entities that cared for him: hospitals, his former adult home, the nonprofits charged with his care, government agencies, his therapist. The records opened a window to Bunch’s world we otherwise never would have seen.
They showed that he struggled, at one point attempting to gouge out his eyes. The records showed he was often hungry and could not keep his refrigerator stocked. They described, in great detail, how he was hospitalized for injuries so severe, doctors suspected an assault. They showed that his caregivers repeatedly said he needed more help than was available in supported housing, but he stayed in it anyway.
We realized Bunch’s roommates were equally important, particularly Bernard Walker, who died during a blizzard a few weeks after the two had moved in together.
To understand Walker’s story and get his records, we would need to find and gain the trust of his family. Our first break in that effort came when Jennings and I visited a source in a New York housing project who had worked with residents. Just before we arrived, the source threw a box full of records into the trash chute.
With his permission, we spoke with a maintenance worker, who opened up the trash compactor, found the garbage bag and allowed us to rummage through it. Mixed in with the dirty diapers and plastic foam takeout trays, we found a spreadsheet that contained Walker’s Social Security number. We used that to find his next of kin.
I went to the home where he had grown up, just south of Prospect Park in Brooklyn, and met his brother Michael, a former New York City police officer who was also looking for answers about Walker’s death. Together, we obtained the autopsy from the medical examiner’s office and the police report.
His mother, Rosetta Walker, agreed to help us obtain her son’s medical records. She filled out countless release forms and notarized requests. The nonprofit Federation of Organizations, which was supposed to help Walker with his medical care, held out. Its compliance officer told us that it would only fulfill a request from someone we could prove was responsible for Walker’s health care decisions while he was still alive.
Rosetta Walker agreed to become the voluntary administrator of his estate. She had to go through a proceeding at Kings County Surrogate Court, which required her to fill out a notarized affidavit and provide proof of payment for her son’s funeral expenses and an official copy of his death certificate.
Federation finally sent records to her this month. These and other records showed that Walker had been inconsistent in taking his medication, that he asked for more help and that a Federation worker had visited him two days before his death to check his pillboxes and watch him pack his medicine.
We learned that the state conducted an investigation into Walker’s death. But even with all the work the Walker family put into obtaining the results, neither the Department of Health nor the Office of Mental Health would disclose it. In response to Freedom of Information Law requests, the state agencies said that such records would “constitute an unwarranted invasion of personal privacy” and that because they are “quality assurance records,” they are shielded by state law.
Even after presenting the voluntary administrator certificate, the family was still refused. It is not lost on them that the same law that protects Walker’s privacy in death is now being used to shield from public view the actions of the state agencies that oversaw his care.
Last summer, we began to widen our reporting beyond the experiences of Bunch and his roommates. We soon found Abraham Clemente, a 69-year-old man with schizophrenia who had spent most of his life behind bars and in institutions. We were stunned by the state of his apartment. It was alive with insects and reeked of spoiled food and feces. Sometimes he told us he was living this way by choice; other times, he said he was miserable and lonely and wanted help.
The question of consent arose again. Could he coherently agree to allow us to film him?
Once again, we decided the answer was yes.
In this case, Clemente almost always invited us into his apartment, no matter his temperament that day or presentation. He assured us that he understood what we were there to do, and we asked his permission every time, just in case. There were concerns from his neighbors, who worried that he was not getting enough help and that they might suffer for it. He had started two fires in his apartment.
We began to wonder what might happen if we chose not to tell Clemente’s story.
Clemente, too, decided to share his records with us.
They were as revealing as Bunch’s.
The company that had been managing his health care at the adult home warned that he was not interested in learning how to administer his own medication: “At this time, we cannot safely provide service to this member in a supported apartment,” a registered nurse for the company wrote. But state officials decided he could be moved to supported housing. A care coordinator told the police he tried to hit her after being off his medication for five days. An aide quit because she was “in fear of her life,” records show.
Clemente remained in supported housing until the fall, when he made it back to his adult home, convinced that he had a job there as a security guard and that residents owed him money. An ambulance was called, taking him to an emergency room, where he got into a physical altercation and wound up in a psychiatric ward. Finally, on Nov. 1, he moved back to the adult home.
In our meetings since, Clemente has thanked us. He acknowledged that he was struggling on his own, that he needed more help. Slowly, he is beginning to consider another attempt at independence.
Tom Jennings, Kate McCormick, Nicole Reinert and Marcia Robiou contributed reporting.