Commentary Health Systems

What Sandy Wrought, Part 1: Health-Care Crises Remain a Year After the Storm

Sarah Jaffe

The storm ripped the roof off the Rockaways area of New York City, literally and figuratively, and shone a light on how woefully under-resourced the community was, and is.

This is part one of Rewire‘s examination of health care in New York City in the year since Superstorm Sandy. Part two will focus on reproductive health care.

The A train ride from the Rockaways at sunset is beautiful—the sun on the water and bridges, marshes, houses on stilts. The narrow peninsula at the bottom of Long Island is technically part of Queens, but it feels like its own town. Or rather, two towns: the beach community of vacation rentals and second homes, on one end, and on the other, working-class people, many of them of color, and lots of public housing, nursing homes, assisted living facilities, and halfway and three-quarter houses, concentrated in this part of town that is both beautiful and remote. It takes an hour or so to get to Manhattan on the subway, if it’s running on time.

The long train ride along the water perversely highlights how precarious the community, devastated by Superstorm Sandy nearly one year ago, still is. If another storm comes in and washes completely over the peninsula like Sandy did, and those bridges and trains go out again, the Rockaways are utterly cut off.

I was in the Rockaways on August 14 for a rally to save St. John’s Episcopal Hospital, the last hospital standing on that narrow strip of land. It’s threatened by the same economic pressures that felled Peninsula Hospital, which closed shortly before Sandy, in April of 2012. A large number of residents rely on Medicaid, meaning the hospital doesn’t make much, and when the storm hit and left residents stranded, the absence of Peninsula meant that St. John’s had to treat everyone, putting additional financial strain on the safety-net facility.

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I rode out to the rally with Nastaran Mohit, an organizer now with the New York State Nurses Association (NYSNA). She was deeply involved with health-care recovery work after the storm, including opening a pop-up health clinic.

“If we had two functioning hospitals and a number of clinics, we would have been in a very different position,” Mohit told Rewire. “We were already crying about how inadequate health-care services were in the Rockaways, and here we are nearing the year anniversary and you have St. John’s hospital, the only full service hospital on the peninsula, slowly cutting back departments. The storm ripped the roof off this community, literally and figuratively, and shone a light on the Rockaways–how woefully under-resourced this community was and is. The fact that this hospital could close is absurd. The fact that this is happening in a Sandy-ravaged community, it’s just unbelievable.”

At the rally, as hospital workers dressed in the purple of 1199 SEIU marched and chanted alongside community members, and political candidates made speeches, I spoke with residents about their hospital and the threats to it. Frank Menendez, a father of four and member of community group New York Communities for Change (NYCC), worried that without a hospital nearby, if anything happened while he was at work, his kids would be stranded without care.

1199 vice president and registered nurse Claire Thompson used to work at St. John’s. “We should have a place where care should be accessible. It’s not a privilege, it’s a right,” she said. While St. John’s may not close, she argued that closing departments—the detox department is already gone, community health clinics are being split off, and dialysis may be next on the chopping block—leaves the community vulnerable.

“God forbid there’s another hurricane or natural disaster and something happens to the bridges. We’re almost isolated out here, and there’s no hospital? That’s a death sentence to the residents of the community,” Milan Taylor of the Rockaway Youth Task Force said.

The groups rallying to save their community hospital know from experience how easily their needs can be forgotten. In the days after Sandy, while volunteers went door-to-door in neighborhoods in the dark, institutions failed many New Yorkers. Hospitals and pharmacies were closed, transportation was down, and everywhere, there was overwhelming need.

As communities struggled, volunteers stepped in to fill the gaps, providing immediate relief and care, helping to mitigate the consequences of the disaster. Nurses and doctors, organizers and neighbors banded together to care for the sick and disabled, clean up destroyed belongings and mold, and pressure the government to fix its mistakes and address its neglect. But as the acute crisis faded, the chronic crisis in health care became obvious to all, as hospitals like St. John’s face cuts throughout the city.

“This Isn’t Supposed To Be Happening!”

Pat Kane is an operating room nurse at Staten Island University Hospital and treasurer at NYSNA. During Sandy, she told Rewire, the hospital did not evacuate. “Those of us working were kind of held hostage to our workplaces while they were getting stabilized after the storm,” she said. “You’re there all night wondering, Are we going to end up evacuating in the middle of the night? Some of the nurses felt like the hospital should’ve been evacuated. But then what? Then all we leave on Staten Island is one hospital.”

Other hospitals did, of course, wind up evacuating in the middle of the storm: NYU Langone Medical Center, where nurses carried babies down nine flights of stairs using manual respirators to keep them breathing, and Bellevue. Kane and her colleagues were lucky in that sense, but found their workplace unprepared, without enough beds for staff to sleep in or food for them. Staten Island was battered by the storm, neighborhoods flooded, homes destroyed.

In Manhattan, Stacy De-Lin was a resident physician working in primary care at Beth Israel Medical Center, the only downtown hospital that remained open while Bellevue and NYU Langone evacuated. “Most of us lived downtown, didn’t have power or water, so we basically lived at the hospital for a week,” she said. “Every resident in the hospital was pulled from every rotation, wherever they were, we had so many patients we just had to keep up with the volume.”

When the water receded, NYSNA nurses were part of the first wave of volunteers providing relief to affected areas. Kane and others on Staten Island led the push for a door-to-door canvassing effort. Judy Sheridan-Gonzalez, an emergency room nurse at Montefiore Medical Center in the Bronx and vice-president of NYSNA, was part of the first wave of volunteers who went out to the Rockaways. The nurses found people stuck in high-rise public housing buildings with no power to run the elevators, and no lights to see their way up and down dark stairwells. “Some of them ran out of their medications or became confused about what they were supposed to take, some had chronic conditions. If they were feeling ill, they had nowhere to go, they wouldn’t know what to do,” Sheridan-Gonzalez said. “They couldn’t even think clearly about what they needed. People were confused about the day, they were disoriented because they had no light, no electricity, it was very hard to get good histories on what people did need.”

For people with disabilities, what might have been an inconvenience could quickly turn life-threatening. The loss of electrical power meant the loss of power for all sorts of equipment that helped with daily activities or even kept them breathing. The lack of public transit suddenly meant that home health-care workers couldn’t get to work, leaving the people reliant on them stranded. The Rockaways have more than their share of nursing homes, halfway houses, and long-term care facilities that had to be evacuated, leaving people homeless, disoriented, and out of contact with their families.

With only one hospital in the Rockaways, the area was already underserved. Within days, respiratory infections and fevers started popping up. And then, Sheridan-Gonzalez said, the public health issues began. The air quality, which had never been great, got worse. People were still without power and water, and hygiene was becoming an issue. “The medical problems almost were overshadowed by the sort of general sanitation, nutrition needs.”

Nastaran Mohit went out to the Rockaways with people she knew from Occupy Wall Street as that group began its relief efforts. She wound up at YANA (You Are Never Alone), a community center that had become a hub for relief workers. Doctors Without Borders, the international aid organization, wound up at YANA in its search for a place to set up its first domestic effort.

Mohit comes from a family of medical professionals, though her health-care experience has mainly been as an advocate for a national health-care system, and she jumped in right away, connecting the Doctors Without Borders team to the Rockaway Youth Task Force to set up a canvassing effort in the public housing buildings.

It was clear to her that more was needed, though, and with the help of Sal LoPizzo from YANA, she got access to a space across from YANA and set up a medical clinic, staffed with volunteer nurses and doctors, including NYSNA nurses and medical students from Mount Sinai. “We found out FEMA was referring people at their tents to YANA medical clinic for medical attention, and we had the Red Cross showing up saying, ‘Hey, what can we do?’ and we had St. John’s hospital referring people to YANA medical clinic for medical care, and I’m like ‘I’m a labor organizer! This isn’t supposed to be happening!'”

A Volunteer-Led Effort

The story of Sandy is a story of institutional unpreparedness, of those who should know better assuming that things were under control, of everyone assuming that someone else was taking care of people, and of volunteers stepping in where the big names fell down on the job.

One year later, some of the few institutions that existed during the storm are threatened.

According to Mohit, there was constant confusion as to who was supposed to provide health care. “What is FEMA? Federal Emergency Management Agency. Aren’t they supposed to manage this? No. They provide [Small Business Association] loans, they provide claim numbers, they process the appeals, what they do is very specific. They have no qualms about saying, ‘This is what we do,’” she said. Yet people expect more, and find themselves disappointed. The same for the Red Cross.

“People think that Red Cross provides medical [assistance]. They don’t. You would think that there would be thousands of Red Cross canvassers across these disaster areas. No, they’re giving out hot meals, and they have ambulettes that work in conjunction with FEMA, but they’re not doing any medical canvassing, they’re not providing medical clinics, they’re not providing volunteer medical professionals. They don’t do any of that,” she said. “Is the Department of Health supposed to do that? No, they don’t do that. Is DMAT [Disaster Medical Assistance Teams] supposed to take care of this? No, DMAT doesn’t take care of all of this. And then finally you come to realize, it’s all volunteers that have to do this.”

Out on Staten Island, Pat Kane was having the same experience. FEMA had sent ambulances, two of them, that were stationed at Miller Field, a public park near New Dorp Beach. “Every day we would more or less convince whoever those ambulance drivers were to take us out into the community,” Kane said. NYSNA had an RV stationed at Miller Field in the beginning, and the National Guard began referring medical needs to the nurses. But after a couple of weeks, city officials began pushing to move from what they termed “acute response” to recovery, and moved from Miller Field to an indoor relief center. But the conditions on the ground were still bad, so Kane and the nurses connected with Occupy Sandy and with community hubs, staging at a parking lot on Cedar Grove Avenue and at Midland Beach.

To the NYSNA nurses, the people working for FEMA and the Red Cross had good intentions, but they were caught up in a system that doesn’t work. “I look at it kind of like what some of the nurses go through in the institutions where they work,” Kane said. “They want to help every patient and do the best job, but management isn’t giving them the staffing and the other tools they need to do it.” Sheridan-Gonzalez added, “What we found out was that we had to sort of say ‘Hi, come with me and let’s do this.’ They just didn’t even know what to do.”

But the nurses and other volunteers could only do so much—in between their volunteer hours, they were still working full-time at the hospitals, which were stressed in turn because several facilities remained closed for months. And no matter how wonderful the volunteers were, how dedicated, Mohit noted, they couldn’t personally keep track of patients, because they could only commit to a day or two at a time.

Yet the big, well-funded agencies (according to Guidestar, the Red Cross had revenues of $3.4 billion last year) were referring those in need of care to the volunteers, leaving the volunteers scrambling. “We never say no, we say yes yes yes, but it has to come to a point where this is completely unacceptable,” Mohit said. “We’re already trying to leverage those relationships to get funding for them because FEMA got a huge grant for case management, and the Red Cross has a ton of money. They all have a ton of money, and we’re all doing this for free.”

What Went Wrong?

“There was no public health infrastructure preparation at all,” Sheridan-Gonzalez said. Before the storm, Mayor Michael Bloomberg gave a speech about preparedness, explaining that he had assured FEMA before the storm that New York City had “everything under control,” so its help was not needed; he said the agency should “help those parts of the country that don’t have all of the extensive facilities and agencies and practice that New York City does.”

The volunteers on the ground, of course, told a different story. After her second trip to volunteer in the Rockaways, Sheridan-Gonzalez helped organize a meeting with Physicians for a National Health Program (PNHP) and other groups to try and coordinate the volunteer effort. PNHP, NYSNA, Occupy Sandy, volunteer doctors, EMTs, and street medics met and discussed how to work together and how to get aid from the public agencies and the Red Cross. For round two of the meeting, they invited government and non-government agencies to attend, and, Sheridan-Gonzalez said, only federal representatives from FEMA and the Department of Health and Human Services showed up—no one from New York state or the city.

“What we got out of that meeting, unofficially, is we were able to understand a little bit what the bureaucratic mechanism was to get aid, and it had to come from the mayor,” she explained. The mayor needed to make requests to various state agencies, which then applied to FEMA in order to “trickle it back down again.” And according to the federal representatives, those specific requests had not been made.

From there, the nurses moved to meet with the city, and finally, in frustration, organized a rally on November 16 on the steps of City Hall to protest Bloomberg’s slow response to the storm. The rally brought results, of a sort. They met with a representative from the mayor’s office, who, Sheridan-Gonzalez said, “started rattling off these statistics: the number of people that have been helped, the number of bottles of water they’ve distributed, the number of generators, the number of masks, just statistic after statistic of all the things they have done.” They may well have produced that many masks or bottles, she said, but when they started to tell her that certain neighborhoods in the Rockaways had been canvassed and were OK, she said, “We’ve been there, and they were not.”

Even when programs had been installed to deal with the health crisis after the storm, they often didn’t work as they should. “Probably the biggest holdup was this issue with the pharmacies,” Mohit explained. The state had created an emergency prescription assistance program, meant to help pay for medication for people in storm-affected communities who may have lost their prescriptions. But if a canvasser, trying to do the work for people stuck in their homes, had just one digit wrong in someone’s Medicaid number or insurance information, they couldn’t get the prescription filled. “So much of the stress of that whole operation was just trying to get these prescriptions filled and going up against these huge corporate entities,” she said. “I would say every single day in the clinic, ‘If this is not the strongest case for a universal health-care system I don’t know what is.’”

People living in New York’s outer boroughs were often not getting good health care on the best of days. “There were huge gaps in access already in the Rockaways. Peninsula Hospital, which closed in April, was the only other functioning hospital besides St. John’s, so now there’s just St. John’s. There’s just a few little providers kind of scattered around the peninsula, but none of them are comprehensive,” Mohit said. The people in the Rockaways, in Coney Island, in Staten Island are working class; many of them, particularly in the Rockaways, are working poor. It’s already become somewhat cliché to point out that the storm highlighted the rampant inequality in New York, but when it comes to health care, the case is particularly stark.

Ongoing Struggles

As power, medical services and a kind of stability returned to most storm-affected neighborhoods, the health hazards that remained were harder to see.

“A few days after the storm, a few weeks after the storm, it was so clear that the air quality was so horrible, you were coughing and you could see it in the air. And now that a lot of the garbage removal has tapered off, I think that people that come to the area, they think it doesn’t look that bad, but a lot of those dangers still exist. It’s in the air that we breathe, it’s in the water that we’re drinking,” Mohit said. “We’re on the skinny little peninsula, you had all of the flood waters come in and then recede and then dry up. And then with all of the construction, vehicles coming in, kicking up all of that material, every time a new house is demo’d, that material is kicked up, the asbestos is kicked up, the toxins, the oil, the sludge is kicked up. And then you have these huge dump trucks that are going from one end of the peninsula to the other to Jacob Riis Park to dump all of this trash, all of these trucks are uncovered, which is a whole other issue, so we’re breathing in all this crap and breathing in the mold.”

According to Pat Kane, from the beginning, anyone with respiratory problems was having a hard time, and they had to fight in order to get portable nebulizers to bring to people who were having trouble breathing. Mohit saw residents complaining of breathing problems, children with asthma that they’ve never had, people coughing up dark mucus or blood. She’s also received complaints about the water quality. But according to the Department of Health, she said, the air and water were fine. “We know that’s not the truth,” she said. “We heard a similar story after 9/11, and we don’t want this to be a repeat.” (New York Congressman Jerrold Nadler echoed Mohit’s concerns in March.)

According to a survey from New York Communities for Change in January, two-thirds of residents in the Rockaways had mold in their homes or paid out-of-pocket for mold remediation. The New York Times reported in March that a plan to treat 2,000 moldy homes was being funded by a public-private partnership, but estimates of how many homes might need treatment ran to more than ten times  that number. Volunteer groups like Respond and Rebuild stepped in to fill the gap, holding trainings for residents and sending volunteers into homes to fight the mold.

Linda Bowman, a resident of Far Rockaway and member of NYCC, said in August—some ten months after the storm—that she’d only recently had her basement gutted. “We got help from people, yes, but we didn’t get what we need,” she said. “I’m still working on it.”

The mold at least got some attention, but even less acknowledged was the creeping mental health crisis among people displaced by the storm. “It’s the devastation that people are showing—losing their home, losing their communities, being without services, being without heat, just people’s lives torn asunder,” Sheridan-Gonzalez said. “You could feel the tension in the air of people being forced into small spaces. A lot of family drama. A lot of fear. That was the thing we felt most of all, that people had no idea what was going to happen.”

The city has a program, known as Project HOPE, that is funded by a FEMA grant to provide counseling in disaster-affected areas. Kane grimly joked about it: “We hope for Project HOPE.” A Google search returned one date, January 11, when Staten Island residents could access trauma counseling. Ads and flyers continue to dot the subway system and grocery store windows, offering help.

People who barely stop to get care for acute medical needs take little time to care for their mental health, and every setback provides another trauma. For those who were displaced, living night after night without a home, in a hotel, or on a friend or relative’s couch makes it impossible to return to “normal.”

Volunteers have been trying to fill in the mental health-care gaps as well. Nastaran Mohit has been working with Mount Sinai’s global health institute, which has a disaster psychiatry program. “Mental health is a long-term project,” she noted.

If many New Yorkers had little access to primary health care before the storm, there’s little chance that they were already getting good mental health care. Then, as noted above, the Rockaways and Coney Island, the areas hardest hit by the storm, were also home to long-term care facilities for those with mental health problems, as well as halfway and three-quarter houses for formerly incarcerated people or those exiting rehab programs. Coney Island Hospital still has not reopened its psychiatric emergency department, and with Interfaith Hospital in the Bedford-Stuyvesant neighborhood of Brooklyn threatened, the New York Times has noted the borough will face a “severe shortage” of mental health care.

Mohit said that many residents of the Rockaways already faced the day-to-day trauma of economic uncertainty and living in poverty. Then they had everything they did own wiped out in the storm, or had no power for weeks on end. “You can imagine what it does to your psyche to live in cold, night after night after night. You don’t sleep, you’re stressed, you get sick, you’re worried about your kids, you have to get yourself to and from work, it takes hours. Mental health professionals talk about this all the time, this feeling of uncertainty, what that does to you long-term,” Mohit said. “I’m surprised everyone’s not sick. It’s overwhelming.”

Lessons, and Getting Back to “Normal”

For much of New York, life has returned to normal. Almost all subway service has been restored, the fallen trees have been cleared from the streets, and if you don’t live in the handful of hardest-hit areas, you could easily forget that parts of the city are still dealing with the fallout from the storm.

Coney Island Hospital reopened most of its departments at the start of January, and Bellevue reopened in February. The Manhattan VA hospital reopened fully in May, and NYU Langone has reopened and is in the midst of a “modernization effort” that includes additional storm protections.

But the lessons of the storm—that health-care facilities are desperately needed, and need to be prepared for emergencies—seem to be lost on some. Last winter, David Sandman, senior vice president of the New York State Health Foundation and a member of the Berger Commission, a 2006 project by Republican then-governor George Pataki to “rightsize” medical care in the state, told WNYC that Sandy was “a wake-up call” about “excess inpatient hospital capacity.” “When two very large hospitals—Bellevue, with 900 beds, and NYU, which has close to 900 beds—were suddenly taken out of service, we did have some backlogs and wait times at other places, but the system was able to absorb most of that capacity,” he said. Translated from the bureaucrat, that means he’s hoping for more downsizing.

But for residents in storm-ravaged neighborhoods like Red Hook, in Brooklyn, and the Rockaways, the loss of the closest hospital to them could be devastating, and in an emergency, backlogs and wait times can cost lives. NYSNA nurses are fighting hospital closures in multiple boroughs—Long Island College Hospital in Cobble Hill in Brooklyn, adjacent to flooded and already-underserved Red Hook, and Interfaith Hospital in Bed-Stuy, as well as St. John’s out in the Rockaways and departments in the Bronx and Manhattan.

Mohit pointed out that the closure of departments has less to do with community need or some perceived lack thereof, and more to do with which departments and hospitals make money. Lower-income neighborhoods have a higher amount of uninsured patients or patients who rely on Medicaid; in the Rockaways, which have the highest number of drug-dependent patients in Queens, she said, the detox department at St. John’s nevertheless closed. At St. Luke’s Hospital in Harlem, the detox department and the pediatric inpatient services closed down, and Sandy was part of the excuse. “They said we need to close these departments to make way for the overflow from NYU and Bellevue. Why would patients from NYU and Bellevue come all the way to Harlem/Morningside Heights? But they closed the departments, they transferred those nurses, and they did it without any community input. Those departments still have not opened.”

Stacy De-Lin noted that the coming merger of Beth Israel and Mount Sinai Medical Center also might see downsizing, possibly from 1,000 beds to 400, even though Beth Israel remained busy well after Bellevue and NYU Langone reopened. “Beth Israel is a safety-net hospital, most of the patients that go there are uninsured or on Medicaid,” she said. “I think they’re looking at it purely as a matter of dollars and cents. What gets missed in that picture is what the cost is to the overall system or to the state of New York when these patients lose access to care and their conditions get out of control. That’s something that could’ve been managed, but now it’s more serious. No one would argue that we don’t need those beds. It’s just being looked at from a purely corporate standpoint, when ultimately it’s a public health issue that has economic implications for the state.”

NYSNA started, along with other medical professionals, a campaign to “Build Back Better” after the storm, which then merged into the Alliance for a Just Rebuilding, a coalition of over 50 community, labor, faith, and environmental organizations. Sheridan-Gonzalez explained, “We’re returning people to a system that didn’t work. So our big responsibility as activists is to expose the bankruptcy of the medical care that people receive in general and the lack of disaster preparedness in the nation. We worked on the ground to try to see what people needed, and what we found, no surprise, aside from the fact that people were totally devastated, we also found that most of them weren’t getting good health care anyway. With flashlights and a stethoscope we provided more information and care to people than they had probably ever gotten.”

Residents express anger; Kane noted that Staten Islanders feel like the “forgotten borough” all over again, and Linda Bowman told me on August 14, “We need help out here. If we don’t get help, Far Rockaway’s gone. We don’t exist out here.”

The comparisons to Hurricane Katrina, to the people who were left out of relief and recovery efforts in New Orleans, are heard all over the city. They know, Mohit said, that poor people, people of color, immigrants, and working-class communities come last. A protest sign at one of the Build Back Better rallies called attention to the time it took to get Wall Street up and running: two days.

And yet the volunteer experience also brought positive lessons. The community medical clinic in Far Rockaway left the people who worked there wondering what it would be like to have a functioning community clinic all the time, outside of disaster relief. “It gave us kind of a glimpse into what this world could look like,” Mohit said.

The nurses at NYSNA and the doctors at PNHP already advocated for a single-payer national health-care system, one in which struggling to find insurance numbers and arguing with pharmacists to honor prescription aid programs wouldn’t be issues. Sheridan-Gonzalez and others see the incomplete disaster response from the government as only part of the problem; the for-profit health-care system that pushes costs down and prioritizes making money over meeting human needs, they said, is the real problem, one that’s only highlighted more by the attempts to shut down hospitals that saved lives during the storm.

Residents wondered, too, where the money that was donated so generously in the immediate wake of the storm went. Celebrities like Lady Gaga opened their deep pockets, and as of December 17, according to its own website, the Red Cross had raised $202 million. It was hard to hear over and over about the money that’s been given while not seeing the results on the ground. “People appreciate all the work, the not-for-profits, the groups that have helped them, but they keep asking, ‘Where is all this money going that’s being raised?’” Kane said. “They would just like the money.”

The problems that New York is facing were, many of them, foreseeable for those who paid attention to the aftermath of Hurricane Katrina—the disparities in care and relief, the communities that can bounce back and the ones that keep struggling, the health problems mounting. And, Mohit noted, storms like this are going to continue to happen—Sandy was a first-ever crisis, warm oceans later in the year allowing a hurricane to blend with a vicious winter storm, but as those oceans get warmer, storms like Sandy will become more common. Without a plan in place to deal with them, Mohit noted, this crisis will repeat, and volunteers once again will have to fill in the gaps.

“The analogy I use is, if you’re sitting at a pool and there’s a lifeguard, and there’s somebody drowning, if the lifeguard isn’t saving the person, you’re going to jump in and save them. But is the lifeguard eventually going to do his job and save people who are drowning, or are you going to be expected to constantly be jumping in and saving drowning victims?” Sheridan-Gonzalez asked. “There are taxes being paid, there’s money being donated, on an ongoing basis. for organizations and structures to do this work. When they’re not doing the work, or they’re not doing it well, in a way that meets people’s needs, you have an obligation to expose that, to say we deserve and demand something better.”

Analysis Politics

Advocates: Bill to Address Gaps in Mental Health Care Would Do More Harm Than Good

Katie Klabusich

Advocates say that U.S. Rep. Tim Murphy's "Helping Families in Mental Health Crisis Act," purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

The need for reform of the mental health-care system is well documented; those of us who have spent time trying to access often costly, out-of-reach treatment will attest to how time-consuming and expensive care can be—if you can get the necessary time off work to pursue that care. Advocates say, however, that U.S. Rep. Tim Murphy’s (R-PA) “Helping Families in Mental Health Crisis Act” (HR 2646), purported to help address gaps in care, is not the answer. Instead, they say, it is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

“We believe that this legislation will result in outdated, biased, and inappropriate treatment of people with a mental health diagnosis,” wrote the political action committee Leadership Conference on Civil and Human Rights in a March letter to House Committee on Energy and Commerce Chairman Rep. Fred Upton (R-MI) and ranking member Rep. Frank Pallone (D-NJ) on behalf of more than 100 social justice organizations. “The current formulation of H.R. 2646 will function to eliminate basic civil and human rights protections for those with mental illness.”

Despite the pushback, Murphy continues to draw on the bill’s mental health industry support; groups like the American Psychiatric Association (APA) and the National Alliance on Mental Illness (NAMI) back the bill.

Murphy and Rep. Eddie Bernice Johnson (D-TX) reintroduced HR 2646 earlier this month, continuing to call it “groundbreaking” legislation that “breaks down federal barriers to care, clarifies privacy standards for families and caregivers; reforms outdated programs; expands parity accountability; and invests in services for the most difficult to treat cases while driving evidence-based care.”

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Some of the stated goals of HR 2646 are important: Yes, more inpatient care beds are needed; yes, smoother transitions from inpatient to outpatient care would help many; yes, prisons house too many people with mental illness. However, many of its objectives, such as “alternatives to institutionalization” potentially allow outpatient care to be mandated by judges with no medical training and pushed for by “concerned” family members. Even the “focus on suicide prevention” can lead to forced hospitalization and disempowerment of the person the system or family member is supposedly trying to help.

All in all, advocates say, HR 2646—which passed out of committee earlier this month—marks a danger to the autonomy of those with mental illness.

Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force, explained that the bill would usurp the Health Insurance Portability and Accountability Act (HIPAA), “making it easier for a mental health provider to give information about diagnosis and treatment … to any ‘caregiver’-family members, partners or spouses, children that may be caring for the person, and so forth.”

For the communities she serves, this is more than just a privacy violation: It could put clients at risk if family members use their diagnosis or treatment against them.

“When we consider the stigma around mental illness from an LGBT perspective, an intersectional perspective, 57 percent of trans people have experienced significant family rejection [and] 19 percent have experienced domestic violence as a result of their being trans,” said Rodríguez-Roldán, citing the National Transgender Discrimination Survey. “We can see here how the idea of ‘Let’s give access to the poor loved ones who want to help!’ is not that great an idea.”

“It’s really about taking away voice and choice and agency from people, which is a trend that’s very disturbing to me,” said Leah Harris, an organizer with the Campaign For Real Change in Mental Health Policy, also known as Real MH Change. “Mostly [H.R. 2646] is driven by families of these people, not the people themselves. It’s pitting families against people who are living this. There are a fair number of these family members that are well-meaning, but they’re pushing this very authoritarian [policy].”

Rodríguez-Roldán also pointed out that if a patient’s gender identity or sexual orientation is a contributing factor to their depression or suicide risk—because of discrimination, direct targeting, or fear of bigoted family, friends, or coworkers—then that identity or orientation would be pertinent to their diagnosis and possible need for treatment. Though Murphy’s office claims that psychotherapy notes are excluded from the increased access caregivers would be given under HR 2646, Rodríguez-Roldán isn’t buying it; she fears individuals could be inadvertently outed to their caregivers.

Rodríguez-Roldán echoed concern that while disability advocacy organizations largely oppose the bill, groups that represent either medical institutions or families of those with mental illnesses, or medical institutions—such as NAMI, Mental Health America, and the APA—seem to be driving this legislation.

“In disability rights, if the doc starts about talking about the plight and families of the people of the disabilities, it’s not going to go over well,” she said. “That’s basically what [HR 2646] does.”

Rodríguez-Roldán’s concerns extend beyond the potential harm of allowing families and caregivers easier access to individuals’ sensitive medical information; she also points out that the act itself is rooted in stigma. Rep. Murphy created the Helping Families in Mental Health Crisis Act in response to the Sandy Hook school shooting in 2012. Despite being a clinical psychologist for 30 years before joining Congress and being co-chair of the Mental Health Caucus, he continues to perpetuate the well-debunked myth that people with mental illness are violent. In fact, according to the Department of Health and Human Services, “only 3%-5% of violent acts can be attributed to individuals living with a serious mental illness” and “people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”

The act “is trying to prevent gun violence by ignoring gun control and going after the the rights of mentally ill people,” Rodríguez-Roldán noted.

In addition, advocates note, HR 2646 would make it easier to access assisted outpatient treatment, but would also give courts around the country the authority to mandate specific medications and treatments. In states where the courts already have that authority, Rodríguez-Roldán says, people of color are disproportionately mandated into treatment. When she has tried to point out these statistics to Murphy and his staff, she says, she has been shut down, being told that the disparity is due to a disproportionate number of people of color living in poverty.

Harris also expressed frustration at the hostility she and others have received attempting to take the lived experiences of those who would be affected by the bill to Murphy and his staff.

“I’ve talked to thousands of families … he’s actively opposed to talking to us,” she said. “Everyone has tried to engage with [Murphy and his staff]. I had one of the staffers in the room say, ‘You must have been misdiagnosed.’ I couldn’t have been that way,” meaning mentally ill. “It’s an ongoing struggle to maintain our mental and physical health, but they think we can’t get well.”

Multiple attempts to reach Murphy’s office by Rewire were unsuccessful.

LGBTQ people—transgender, nonbinary, and genderqueer people especially—are particularly susceptible to mistreatment in an institutional setting, where even the thoughts and experiences of patients with significant privilege are typically viewed with skepticism and disbelief. They’re also more likely to experience circumstances that already come with required hospitalization. This, as Rodríguez-Roldán explained, makes it even more vital that individuals not be made more susceptible to unnecessary treatment programs at the hands of judges or relatives with limited or no medical backgrounds.
Forty-one percent of all trans people have attempted suicide at some point in their lives,” said Rodríguez-Roldán. “Once you have attempted suicide—assuming you’re caught—standard procedure is you’ll end up in the hospital for five days [or] a week [on] average.”

In turn, that leaves people open to potential abuse. Rodríguez-Roldán said there isn’t much data yet on exactly how mistreated transgender people are specific to psychiatry, but considering the discrimination and mistreatment in health care in general, it’s safe to assume mental health care would be additionally hostile. A full 50 percent of transgender people report having to teach their physicians about transgender care and 19 percent were refused care—a statistic that spikes even higher for transgender people of color.

“What happens to the people who are already being mistreated, who are already being misgendered, harassed, retraumatized? After you’ve had a suicide attempt, let’s treat you like garbage even more than we treat most people,” said Rodríguez-Roldán, pointing out that with HR 2646, “there would be even less legal recourse” for those who wanted to shape their own treatment. “Those who face abusive families, who don’t have support and so on—more likely when you’re queer—are going to face a heightened risk of losing their privacy.”

Or, for example, individuals may face the conflation of transgender or gender-nonconforming status with mental illness. Rodríguez-Roldán has experienced the conflation herself.

“I had one psychiatrist in Arlington insist, ‘You’re not bipolar; it’s just that you have unresolved issues from your transition,'” she said.

While her abusive household and other life factors certainly added to her depression—the first symptom people with Bipolar II typically suffer from—Rodríguez-Roldán knew she was transgender at age 15 and began the process of transitioning at age 17. Bipolar disorder, meanwhile, is most often diagnosed in a person’s early 20s, making the conflation rather obvious. She acknowledges the privilege of having good insurance and not being low-income, which meant she could choose a different doctor.

“It was also in an outpatient setting, so I was able to nod along, pay the copay, get out of there and never come back,” she said. “It was not inside a hospital where they can use that as an excuse to keep me.”

The fear of having freedom and other rights stripped away came up repeatedly in a Twitter chat last month led by the Task Force to spread the word about HR 2646. More than 350 people participated, sharing their experiences and asking people to oppose Murphy’s bill.

In the meantime, Sen. Lamar Alexander (R-TN) has introduced the “Mental Health Reform Act of 2016” (SB 2680) which some supporters of HR 2646 are calling a companion bill. It has yet to be voted on.

Alexander’s bill has more real reform embedded in its language, shifting the focus from empowering families and medical personnel to funding prevention and community-based support services and programs. The U.S. Secretary of Health and Human Services would be tasked with evaluating existing programs for their effectiveness in handling co-current disorders (e.g., substance abuse and mental illness); reducing homelessness and incarceration of people with substance abuse and/or mental disorders; and providing recommendations on improving current community-based care.

Harris, with Real MH Change, considers Alexander’s bill an imperfect improvement over the Murphy legislation.

“Both of [the bills] have far too much emphasis on rolling back the clock, promoting institutionalization, and not enough of a preventive approach or a trauma-informed approach,” Harris said. “What they share in common is this trope of ‘comprehensive mental health reform.’ Of course the system is completely messed up. Comprehensive reform is needed, but for those of us who have lived through it, it’s not just ‘any change is good.'”

Harris and Rodríguez-Roldán both acknowledged that many of the HR 2646 co-sponsors and supporters in Congress have good intentions; those legislators are trusting Murphy’s professional background and are eager to make some kind of change. In doing so, the voices of those who are affected by the laws—those asking for more funding toward community-based and patient-centric care—are being sidelined.

“What is driving the change is going to influence what the change looks like. Right now, change is driven by fear and paternalism,” said Harris. “It’s not change at any cost.”

Commentary Abortion

One Year Later: Texas After the Filibuster Stands Stronger Than Ever for Reproductive Justice

Andrea Grimes

Naysayers would have us believe that Texans have surrendered to the inevitable, that they have stopped working for reproductive rights after the fervor of the summer of 2013. Nothing I have seen in the last year suggests that they are any less angry, any less passionate, than they were last June.

Read more of our coverage on Wendy Davis’ historic filibuster and the fight for reproductive rights in Texas here.

When people talk about the summer of 2013 in Austin, Texas, they’ll inevitably talk about state Sen. Wendy Davis’ courageous 13-hour filibuster on the senate floor. They’ll talk about her pink sneakers, and her tenacity, and her calm in the face of overwhelming opposition from right-wing lawmakers out to silence her at any opportunity.

But I want to shift the spotlight. I want to talk about the people without whose support Wendy Davis could never have taken the floor that day. The hundreds of witnesses who stayed through the night at the people’s filibuster on June 20, only to be told by a Republican representative that their stories were tiresome, repetitive. The two sisters who cut short a vacation in South Padre Island to arrive at the capitol building in the early morning hours of June 25. The legislative staffers who worked tirelessly collecting testimony, researching precedent, combing through arcane parliamentary procedure. The tens of thousands of people who screamed and cheered and raged and cried in their own living rooms, in their office cubicles, from barstools and in classrooms across Texas, and across the country.

What Wendy Davis did was incredible—but it was no more incredible than the bravery I saw from my fellow Texans over those three weeks in June and July 2013.

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When folks started showing up for what would become known as the “people’s filibuster” at the House State Affairs Committee hearing, I didn’t have high expectations. I arrived at the capitol a little before noon that day, figuring we’d turn up a hundred people, maybe, to tell our right-wing, anti-choice lawmakers all the medically sound, science-based information they were already hell-bent on ignoring.

Twelve hours later, I sat in an overflow room surrounded by cookies, tacos, and pizza donated by people all across the country who’d tuned in to watch the Texas legislature’s finnicky livestream. And I heard the incredible number: seven hundred people had signed up to testify that night. The goal: run out the clock until the end of the special legislative session, suck up as much time as we could, in hopes of blocking what would be known as SB 5, the omnibus anti-abortion bill set to shutter all but a handful of legal abortion providers in a state with 26 million people.

I will never forget watching Lesli Simms testify that night, after State Affairs committee chair Byron Cook told the crowd he was growing tired of our “repetitive” testimony—growing tired of Texans’ abortion stories, of folks’ struggle to find affordable contraception, of hearing about heartbreaking but necessary decisions made to end wanted, but medically untenable, pregnancies.

“My presence isn’t repetitive,” Simms, a first-generation Texan, told Cook. Everyone was rapt. She gestured to the packed room and continued: “Their presence isn’t repetitive. I’m a Black woman, and I’m coming back.”

And she did come back—along with thousands of other Texans who refused to be cowed by the odds. When I talk about bravery, that’s what I mean: the resilience and determination of a people who knew they’d been dealt a losing hand from the get-go. Texas has been deep red for two decades, and the last six or so years have been particularly hard for moderate and liberal Texans alike, as the Tea Party has capitalized on white folks’ fears of an ever-diversifying Texas and of a Black president who will stop at nothing to take away their guns. The game’s been rigged by racist redistricting and voter identification laws meant to dissuade minority voters from exercising their most basic rights as Americans.

And yet still they came.

Over the next week, a thundercloud of orange settled over the state capitol building as Texans from all walks of life gathered to watch our indomitable pro-choice legislators fight for every minute they could find before sine e die, the end of the special legislative session. It’s usually chilly in the capitol building; not so last summer. The heat of a thousand angry—joyfully angry—bodies filled the house and senate galleries, and those who couldn’t snag a coveted seat inside to watch the action set up watch outside chamber doors.

The threat was so, so real: at any moment, we could make the wrong move and send SB 5 into the hands of Republican and Tea Party legislators who would pass the bill without hesitation.

But that thundercloud of orange held fast; by the morning of June 25, only Wendy Davis and 13 hours stood between SB 5’s looming passage and midnight, when Gov. Rick Perry would be forced to call another special session if his party wanted to take up the legislation again.

You know what happened next. You know Davis stood for 13 hours. You know she read the testimony of Texans who’d been turned away from that State Affairs meeting, You know she was reprimanded for putting on a back brace and for talking about family planning funding cuts—not “germane,” apparently, to the matter at hand: whether Texans would ever again be free to decide their own reproductive futures.

You know that with just fifteen minutes left before midnight, state Sen. Leticia Van de Putte stood, defiant, and demanded to know: “At what point must a female senator raise her hand or her voice to be heard above the male colleagues in the room?”

You know that moment was when the thundercloud turned into a raging storm, with hundreds of Texans inside the senate gallery and hundreds and hundreds more outside screaming, chanting, and clapping with such ferocity that right-wing legislators couldn’t hear to take a final-moment vote. You know that Lt. Gov. David Dewhurst tried to change the timestamp on the final vote; you know that sometime in the wee morning hours of June 26, the good news came: SB 5 was dead.

When my husband and I stopped on the way home to grab dinner from the HEB—ranch dip, if I recall, and chips and salsa—I could see dawn hinting at the horizon.

“Were y’all down there? At the capitol?” our cashier asked. We said we were. We left with ranch dip, salsa, and fist-bumps from employees who’d been watching the filibuster from their break room and on their phones inside the store.

But a matter of days later, we were back at the capitol again: this time with thousands of orange-clad Texans swarming the state capitol lawn. Gov. Perry had called a second special session, and this time he came to pass the bill at all costs. Perry jammed the capitol with state troopers, hoping to subdue what David Dewhurst had derided as an “unruly mob.” Anti-choice groups bussed in students from out of state, and evangelical preachers convened in the outdoor rotunda, turning what had been a place of quiet refuge for overwhelmed protestors into a circle of soapbox misogyny.

And, you know, it worked. What was SB 5 became HB 2, and this time the Republican Party wasn’t going to be caught off-guard by a bunch of scrappy liberals. They confiscated our tampons at the senate chamber doors, and accused us of trying to bring 18—18!—jars of human feces into the senate gallery, jars which to this day have never turned up in evidence. And they passed the bill, just before midnight on July 12.

I filed my news story—”Texas Senate Approves Omnibus Anti-Abortion Bill“—from a crowded hallway somewhere on the third floor of the capitol building. Floors below me, state troopers began arresting—sometimes violently—the protestors who refused to leave, in last-ditch acts of civil disobedience. People streamed by me, sobbing. On the capitol lawn outside, we milled around, wondering what—anything please what—we could do next. But the night was over.

I woke up on the morning of July 13—a Saturday—feeling broken, enraged, helpless. Even after a few hours’ sleep, I was more exhausted than I’ve ever felt in my entire life. Days before, I’d made the mistake of telling my husband I’d have brunch with his father-in-law and some of his work colleagues. When it came time to get out of bed, I didn’t even bother. I don’t know what I told my husband to tell the guys. I didn’t really give a fuck. I wanted to sleep, I wanted to cry, I wanted to fall through the mattress, through the floor, through the crawlspace, through the dirt, down deep into the Texas soil beneath our house and nest there, hide where no one could tell me it was time to go to another meeting, time to file another story, time to gather up my shit and move to another hearing room, time to plead with lawmakers who couldn’t even be bothered to pretend to half-listen to reason, lawmakers who played on their phones and passed notes while my fellow Texans broke their hearts open between pink limestone walls, telling stories they’d never even whispered aloud before that summer.

So I slept, and then I ate some Lipton instant rice with about half a tub of sour cream on top. That’s what I eat when I’m sad. Lipton instant Spanish rice. Daisy Light sour cream. I think I Instagrammed it before I went back to sleep, grudgingly setting my alarm for 4 p.m. Because I had another thing to do: drink beer. And I dreaded it.

Which is, uh, unusual for me. Let’s say that. Unusual. “Dread” and “drink beer” are about as far apart as two things can get on my emotional spectrum. But the Saturday after HB 2 finally passed was the same Saturday I’d scheduled our usual Austin feminist meet-up—really, more of a “drink up” group that’d been meeting monthly since November 2011. We called it #ATXFem, most of us knew each other from Twitter, and it had come to be sort of a thing. We’d wear name tags, drink beers, do feminist coloring projects, talk shit, organize. And for the first time in more than 18 months, I didn’t want to go hang out and get drunk with a bunch of feminists.

But #ATXFem is sort of my baby. So I dragged my ass out of bed, threw on my “Wendy F’N Davis” tank top, and arrived late to my own Internet nerd party.

When I walked into the bar, all I could see was orange. The Dog & Duck, a malty-smelling pub just a few blocks from the state capitol building, was packed from, well, dog to duck with people wearing orange t-shirts. I didn’t make it to the beer line for ten minutes—there were too many hugs, too many tears. That Saturday was our biggest #ATXFem meeting yet, and we closed down the bar making plans for what to do next: where to donate, who to call, who to write.

Since that day, I have seen nothing that looks like a loss of passion or a surrender to the inevitable, though GOP pundits and mainstream Texas newspapers seem to love the narrative that progressive, liberal and moderate Texans forgot everything they learned last summer as soon as they were home safe, tucked in their beds.

What I have seen is an incredible outpouring of time, of money, of soul. Because the knowledge that Texans gained last summer—how to testify in front of a committee hearing, how to contact their legislators, hell, how to just know the names of their representatives—can’t be taken away from them. They now see how the system works, and how the system has been manipulated by right-wing lawmakers who have grown lazy and self-satisfied, comfortable with their bully pulpit.

Who can say that Texans have lost faith, when 19,000 people sent comments opposing HB 2 to the state Department of State Health Services (DSHS), demanding our health-care regulators do whatever they could to mitigate the damage done by the new law? Never in its history had DSHS received that many comments on any new regulations. That, to me, does not signal surrender.

Nor did it signal surrender when, in February, Texans lined up once again to testify before the Senate Health and Human Services Committee’s interim legislative hearing, scheduled by right-wing lawmakers to be an assessment of their own “legislative achievements” in women’s health care. Instead, the orange army turned up once again, anxious to discuss the terrible impact of Republican-fueled family planning funding cuts and the clockwork-like shuttering of abortion clinics in the wake of HB 2.

Is Fund Texas Women  a new nonprofit organization—started by a 20-year-old Austin woman—that helps rural Texans pay for the bus tickets and hotel rooms they now need in order to travel hundreds of miles roundtrip for legal abortion procedures, an act of forgetting? The nascent West Fund now operates out of El Paso, helping West Texans with the resources they need to access legal abortion in a part of the state that has seen the closure of three abortion providers in the last year.

Nor has Nuestro Texas, a collaborative study and storytelling project from the National Latina Institute for Reproductive Health and the Center for Reproductive Rights, shied away from calling what havoc legislators have wrought in the Rio Grande Valley—rising and troubling reproductive organ cancer rates, rapidly shuttering family planning clinics that never even provided abortion care—a “human rights violation.”

When I traveled to East Texas earlier this spring to cover the closure of the Beaumont Whole Woman’s Health clinic—the last abortion provider in East Texas—I talked to college students who’d felt empowered to finally start a feminist club on the Lamar University campus, and University of Texas at Tyler students who told me they tuned into the filibuster last year, online, day after day. They told me that last summer has made it easier, just a little bit easier, for people to see shades of purple behind the pine curtain.

I know Battleground Texas volunteers in Dallas and Fort Worth who show up, week after week, to phone bank and block-walk for people like Sameena Karmally, the North Texas woman who is boldly challenging HB 2 sponsor Jodie “Rape Kits Clean A Woman Out” Laubenberg’s house seat. I see the Lilith FundNARAL Pro-Choice Texas, and the TEA Fund going stronger than ever before, organizing fundraisers and advocacy trainings for folks in Houston, San Antonio, and across the state.

I have seen Amy Hagstrom Miller, the CEO of Whole Woman’s Health, return to court time and time again for her right—and for other abortion providers’ rights—to provide legal abortion care in the State of Texas, despite the looming shadow of the anti-choice Fifth Circuit Court of Appeals in New Orleans. Two abortion providers in Dallas, whose clinics are doomed to shutter this September when HB 2’s mandatory ambulatory surgical center operational requirements go into place, successfully sued a hospital that tried to revoke their admitting privileges because they provide legal abortion care.

What Texans learned last summer can’t be unlearned. The passion they felt won’t be diminished, and they cannot and will not be unbound from their comrades in reproductive justice now. As I discovered that day last July, after I had lost all sense of purpose, any glimmer of hope: We now have thousands of sisters, brothers, family members, across the state who know what it is to proceed against all odds in righteous, joyous anger.

Come and take it.