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One Year After Sandy Hook, Progress On Mental Health Care Is Real, But Slow

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"One Year After Sandy Hook, Progress On Mental Health Care Is Real, But Slow"

That mental health would become a focal point of the post-Newtown furor was almost inevitable from the moment that the perpetrator, 20-year-old Adam Lanza, was revealed to have a history of mental illness. Lanza had a mild Autism Spectrum Disorder (ASD) called Asperger’s — an already-stigmatized condition that doctors rushed to shield from wanton speculation after Newtown.

“There really is no clear association between Asperger’s and violent behavior,” warned psychologist Elizabeth Laugeson, an assistant clinical professor at the University of California, Los Angeles, a day after the shooting.

That didn’t stop National Rifle Association (NRA) Executive Vice President Wayne LaPierre from rushing to scapegoat mental illness as the root of America’s gun violence epidemic. “The truth is that our society is populated by an unknown number of genuine monsters — people so deranged, so evil, so possessed by voices and driven by demons that no sane person can possibly ever comprehend them,” he said during his infamous press conference one week after the shooting.

LaPierre would later call for a national registry of Americans with mental illnesses while blasting the idea of such a database for gun owners as outright tyranny.

Notably missing from LaPierre’s aspersions was actual data to back up his claims — perhaps because there isn’t any. Almost all mass shootings are done in family or workplace contexts by a perpetrator with no mental illness and a mere four percent of people who commit violence in the United States are mentally ill. In fact, a person with a mental illness is about five times as likely to be the victim of violence than the perpetrator of it. Over half of all mentally ill people who die by a gun commit suicide, and those who harm others usually have an undiagnosed or untreated serious mental illness such as schizophrenia or bipolar disorder.

The massacre that took place at Sandy Hook one year ago prompted action on two major policy areas: gun violence prevention and mental health care. Some have criticized the post-Newtown focus on mental illness as misguided and stigmatizing; others say it provided a much-needed jolt to an issue that is traditionally glossed over at best and actively ignored at worst. But one thing is clear: states took important steps to plug holes in the mental health safety net in the year since Sandy Hook, even as bipartisan federal legislation remains held up in Congress.

Here’s a look at the state of mental health care in the one year since Newtown’s tragedy:


Stigmatizing The Stigma

One proposal that cropped up after the shooting was the SAFE Act, passed by New York just a month after Sandy Hook. Gun safety advocates hailed it as one of the toughest gun control measures in America; mental patient advocates were less enthused about provisions requiring doctors to report patients who reveal having violent thoughts to state authorities.

“It undercuts the clinical approach to treating these impulses, and instead turns it into a public safety issue,” Columbia University’s Dr. Paul Applebaum, a psychiatrist, told the Washington Post in January.

The question became this: As mental health turned into an inextricable part of the conversation, influencing major aspects of gun violence prevention measures, would that also increase the already-pervasive stigma associated with mental illness?

According to Linda Rosenberg, president and CEO of the National Council for Behavioral Health, the answer is, “[I]n the short term, yes.”

“Obviously some of the proposals are quite repressive — that everybody should either be put in a hospital or court-ordered into treatments, those are things that certainly I do worry about,” she told ThinkProgress in an interview.

Mental health professionals say that provisions like those in the SAFE Act are problematic for doctor-patient relationships based on trust and the expectation of privacy, and may actually exacerbate problems by discouraging patients from seeking help or being honest about thoughts of suicide and violence. “[N]o patient is going to tell you anything if they think you’re going to report them,” said Dr. Steven Dubovsky, chairman of the psychiatry department at the University at Buffalo, in a January interview with the Washington Post.

Stigma has always been one of the biggest barriers to seeking treatment for mental health patients, second only to the unaffordable costs of American mental health care. Over 37 percent of the Americans who should have received treatment in 2011 didn’t believe that they needed any or thought that it wouldn’t help; another 35 percent were afraid of the negative social consequences or being institutionalized:

samhsa mental health stigma costs survey

CREDIT: Substance Abuse and Mental Health Services Administration

Still, advocates say that the increased focus on mental illness is a good thing in the long-run, shining light on an issue that’s often swept under the rug in America. “The public is engaging in a dialogue around mental illness, and the need for additional treatment capacity, in ways that this has never been a public discourse before,” said Rosenberg. “So I think that is a small silver lining in this terrible tragedy.”

That discourse may even lead to the sorts of cultural shifts that could help reach President Obama’s stated goal of “bringing mental illness out of the shadows.”

“I think in the long run the stigma is disappearing,” said Rosenberg. “I think if you talk to any young group of people, they are blogging, they are tweeting about their own mental illnesses… And if you think about cancer, nobody talked about it [originally]. They whispered about ‘The Big C.’ So I think we’re in the same process, and I think stigma is actually much less of an issue.”

So then what are the issues? “[P]eople don’t know how or where to get care.”


In The States, A Playground Of New Mental Health Legislation

It’s difficult to exaggerate the sorry state of American mental health care. Of the one in five Americans with a mental illness, those with the most common conditions — anxiety, depression, and substance use disorders — usually don’t have access to care or can’t afford it. Over half of psychiatrists don’t accept private insurance due to low reimbursement rates, and mental health doctors are significantly less likely to accept Medicare and Medicaid than other doctors. Americans in rural regions are especially likely to live in an area with a shortage of psychiatrists.

Things are even worse for the seriously ill — patients with schizophrenia and bipolar disorder — who also tend to be poorer. A steady stream of post-Recession cuts to state mental health funding has stripped away resources like available public hospital beds for psychiatric emergencies and money for community-based mental health programs.

“Many states appear to be effectively terminating a public psychiatric treatment system that has existed for nearly two centuries,” according to a 2012 report by the Treatment Advocacy Center (TAC), a mental health policy nonprofit.

All told, states cut their already under-funded mental health budgets by over $4 billion between 2009 and 2012. It’s no surprise that America’s jails have consequently become some of the largest de facto mental health providers in the country.

But at least some states re-examined this culture of perennial cuts after Sandy Hook, proposing more resources for the types of programs that advocacy groups have long encouraged. “This is one of those, is the glass half full or is the glass half empty questions,” said TAC executive director Doris Fuller in a telephone interview. “There is more that could be done, but the glass is definitely more full than it was a year ago. So, to that extent, of course we’re encouraged.”

Fuller, whose group tracks and helps write statewide mental health legislation, said that mental health proposals spiked sharply in the last year. “We saw more than 125 bills come up in state legislatures that dealt in some way with a mental health issue, although not necessarily a treatment issue,” she said. “On top of that, nine states passed meaningful legislation that makes treatment more available to the population with the most severe mental illnesses: people with schizophrenia, bipolar patients with psychosis, and other psychiatric conditions that really impair the ability to make informed choices because you’re really not in the world.”

TAC typically sees just two or three of its bills enacted into law in any given year — a number that tripled in 2013, not including pending legislation in Ohio. “So, that in itself is an indication that the environment is much more favorable at the state level,” said Fuller.

Just under 40 states passed legislation expanding outpatient mental health resources for the seriously ill, increasing funding for clinics, or encouraging mental health first aid programs for children in their schools and communities, according to a Politico analysis from earlier this month. These include Nevada, Texas, and Utah, which each adopted laws to help public schools identify children at risk for mental illness through screenings, requiring staff to take courses on mental health first aid, and mandating school districts to inform parents on the best way to talk to their children about possible mental health issues.

Other states and medical organizations have taken more experimental approaches to expanding access. Minnesota approved a new program where professionals can treat children right at their schools, irrespective of insurance status. The law also lets doctors work directly with teachers in the classroom — particularly important considering that mental disorders with lifelong impacts commonly set in by the age of 14 and parents may find it hard to find a doctor within driving distance.

In New Mexico, the Robert Wood Johnson Foundation (RWJF), General Electric’s philanthropic arm, and doctors from the University of New Mexico Health Sciences Center are working on a pilot program where mental health professionals use the Internet to train primary care doctors how to identify and treat mental and substance abuse disorders. People involved with the project hope that the model, called Project ECHO (Extension for Community Healthcare Outcomes), will make a difference for patients in rural areas who usually don’t have an easily-accessible psychiatrist.

Health systems in Oregon and New York are also trying to bring primary care doctors and mental health specialists into the same setting. “If a patient gets comfortable with a counselor before ever leaving the building, he’s much more likely to return,” said internist Thomas Goforth, medical director of the Family Health Center of Harlem, in an interview with the Wall Street Journal.


How The Federal Government Fits In

Progress has been considerably more stilted on the federal level. Lawmakers from both parties have introduced strong mental health legislation in Congress — but not a single bill has actually passed.

“The federal level is a bigger ship, so it doesn’t turn as fast as the little ‘state boats,’” said Fuller, laughing.

That’s not to say that the federal government has done nothing — 30 million Americans will get mental coverage for the first time thanks to the Affordable Care Act. Another 32 million people will find mental health care more affordable in the coming years thanks to recently-released Obama administration regulations finalizing a 2008 parity law that requires all insurance companies to cover mental illnesses in the same that they do other medical problems. On top of that, psychiatrists currently reluctant to accept private insurance over low payments will be more likely to take it under the new system, and millions of Americans who were regularly turned down for insurance over a pre-existing mental condition will no longer be discriminated against under Obamacare.

The Obama administration also made a $100 million pledge last week — just four days before the Sandy Hook anniversary — to bolster mental health services in community clinics and rural regions with money appropriated generally under the health law.

But Fuller says that those measures, while undeniably important steps, only help a certain portion of people with mental illness. “It’s great that people who are well enough to seek treatment can get parity for their mental health care — it doesn’t do much for the population that is most at risk for the most dire consequences of mental illness,” she explained.

Several bipartisan bills currently in congressional limbo would do much more for that population. Sen. Mark Begich’s (D-AK) Mental Health First Aid Act, Sens. Debbie Stabenow’s (D-MI) and Roy Blunt’s (R-MO) Excellence In Mental Health Act, Sen. Al Franken’s (D-MN) Mental Health In Schools Act, and former psychologist Rep. Tim Murphy’s (R-PA) Behavioral Health IT Act would collectively increase funding for mental health treatment in communities, set up screening programs in schools, bolster emergency psychiatric care, and make it easier to keep track of available mental health beds and the sickest patients’ records.

The Health IT bill could have serious impact by “giving the organizations that treat people with the most serious mental illnesses the ability to have and use electronic health records,” said Rosenberg. “And that would help in terms of identifying people who are becoming ill, who are actively psychotic, and allow for an emergency room to electronically transmit to a community agency information on someone they need to follow up on.”

That may sound like obvious policy, but it has yet to be adopted — and the consequences can be tragic. Just last month, former Democratic Virginia gubernatorial candidate and current state Sen. Creigh Deeds’ troubled son, Gus, killed himself and nearly killed his father one day after he was sent home due to a shortage of available public psychiatric beds. It turned out that several hospitals had available beds that night, but the local community health board overseeing the younger Deeds didn’t know about them.

Only one of the federal mental health bills — the Excellence In Mental Health Act — has made any tangible progress in Congress. The Senate Finance Committee adopted the bill on Thursday as an amendment onto another piece of health care legislation. If passed, the bill will “establish criteria for certified community behavioral health clinics to ensure the providers cover a broad range of mental health services — including 24-hour crisis care, increased integration of physical, mental, and substance abuse treatment so they are treated simultaneously rather than separately, and expanded support for families of people living with mental health issues,” according to a press release from Stabenow’s office.

But why has mental health legislation, deemed a moral imperative by lawmakers from both parties over the last year and introduced on a bipartisan basis, been held up for so long? Some think it boils down to money. “We have a certain segment of the American population and those they elect to Congress who believe no-to-little government is good government, and everyone is survival of the fittest,” said Rosenberg.

Others propose an even more depressing theory: boredom. “There is tremendous bipartisan support in both the House and Senate for doing something on mental health, as well as support from law enforcement, veterans’ organizations, and mental health experts,” wrote one Senate aide in an email to ThinkProgress. “Unfortunately, the talk about doing something really spikes up after tragedies occur, then seems to get lost in the shuffle again during budget fights, government shutdowns, and those sorts of things.”

Almost no media outlets covered the Finance Committee’s adoption of the Excellence In Mental Health Act on Thursday, just two days before the Sandy Hook one-year anniversary. Fewer covered — or even showed up to — Rep. Murphy’s introduction of a package of new mental health legislation to boost outpatient mental health care, make it easier for Americans in rural regions to get treatment, and create behavioral health awareness programs to reduce mental health stigma among teens on the same day.


Teaching Empathy

Friday, the day before Sandy Hook’s one-year anniversary, several dozen Senate staffers gathered to hear a presentation by Bryan Gibb, Director of Public Education for the National Council on Behavioral Health. Gibb gave the attendees a compressed version of the eight-hour mental health first aid training program that would be funded by the Mental Health First Aid Act.

“We provide information on how to recognize signs of mental illness and what to do about it,” said Gibb in a telephone interview. “We look at the background of those illnesses and what they look like, but most of the time we focus on, what is a safe and productive way to respond to that person, to help that person? Or if they’re in crisis how to de-escalate that person and get them some help.”

Gibb also does hands-on exercises to emulate mental illness symptoms that a constituent might exhibit during an event. One such exercise replicates auditory hallucinations by having two people carry on a conversation while a third person whispers unrelated phrases into one of the volunteer’s ears. “It kind of demonstrates how distracting that can be for a person going through it,” he explained.

Gibb has held several of these events for Congressional staff both before and after Sandy Hook. In many ways, they represent the dual challenges of reforming American mental health care: getting state and federal governments to care enough to spend money on the issue while simultaneously increasing individuals’ awareness — and capacity to respond to — mental illness.

“We hope this will help them develop some empathy for our fellow citizens, while teaching them how to respond to potentially difficult circumstances,” he said.

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