Sandy Hook One Year on, the Nation Struggles With the Stigma of Mental Illness

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Photo by Robert Stolarik.

NEWTOWN, Conn. -- Sandy Hook Elementary School has been razed.

The process of destroying the school -- where last year Adam Lanza, a socially awkward 20-year old, massacred 20 first-grade students and six teachers and staff in a matter of minutes -- began earlier in the year and is now nearly complete. It was a secretive project. Construction workers who participated in the demolition of the site were forced by town officials to sign nondisclosure agreements promising not to speak about their work or to take pictures or video recordings. They remain forbidden from removing so much as a brick from the site. Officials promised they are having all the debris hauled away and destroyed at a clandestine location.

They have recently warned that the site of the school is contaminated. At a recent council meeting, it was revealed that there were higher than expected levels of lead, asbestos, and PCBs in the construction debris collected from the leveled site. A glance at the area around the school reflects the fact that this is indeed treated like poisoned land.

Last year, the road leading from the small downtown of Sandy Hook was lined with all manner of makeshift tributes to the victims of the shooting. Piles of flowers, stuffed animals, letters scrawled on scrap paper cut into the shape of hearts taped to utility poles, votive candles in rows of 26 could be found everywhere around the school. Now, nearly a year later, those dedications have been swept away. In their place are rows of municipal signs warning visitors away. DO NOT ENTER. No Parking Anytime. No Trespassing. Violators Will Be Prosecuted.  

A wrought iron gate blocks the entrance to the site where the school, built in 1956, once stood. A video monitor is mounted above the gate next to another sign that reads: Electronic Surveillance Equipment In Use, with an image of a camera on it. Last year, mourners hung handmade foil stars with names of the dead children off the bushes and trees near the entrance to the school. They have been replaced with pink and blue ribbons tied on by Newtown officials indicating spots for soil testing.

Aerial shots of the site show a dirt field, mostly landfill, criss-crossed with the tracks of construction vehicles. Next to the flattened site are gravel piles of varying size and patterns. From above, they look like massive primitive grave mounds.

A new school is slated to be complete by 2016.

“We can do better than this” 

While local officials are preoccupied with wiping any physical trace of the school off the face of the earth, its the memory, and the enormity of what occurred there, that has become a touchstone for all manner of public policy reform across the state, and the nation. As the residents of Newtown deal with the stigma of the tragedy, advocates, politicians and experts still invoke their notorious hometown to call for change in state houses and school houses across the country.

The Sunday after the shooting, President Barack Obama visited Newtown and delivered a speech in a crammed auditorium at the local high school. He promised to concentrate the powers of his office on preventing another massacre.

“We can’t tolerate this anymore. These tragedies must end. And to end them, we must change,” he said. “We will be told that the causes of such violence are complex, and that is true.  No single law -- no set of laws can eliminate evil from the world, or prevent every senseless act of violence in our society.”

But, he added, the nation had an “obligation to try.” And, they have -- local officials, advocates, policy experts, and even the parents of the slain children -- have worked to “do better.” The president started a conversation that night that put mental health reform at the forefront of political discourse like it had never been before. It is a conversation that still continues today less than a week removed from the anniversary of the killings.

Darcy Gruttadaro and her colleagues at the headquarters for the National Alliance of Mental Illness have been monitoring the policy reforms from her nondescript office building in a business district of Arlington, Va. Although she said there is still a lot of work left to be done in terms of lifting barriers to access, and in filling dire shortages of  mental health workers, she thinks meaningful mental health reform has been done since the shooting at Sandy Hook.

Lets take it out of the context from Newtown a minute and take all the recent tragedies -- we have seen Aurora, Colo., we have Tuscon, we have Virginia Tech, and now Newtown,” she said. “People didn’t necessarily know what to do, or they didn’t take action or nothing was really done to connect them in a meaningful way to mental health services and supports.”

With increases in spending, hearings on the state and federal levels, the empaneling of commissions and task forces, new legislation and the introduction of new bills, Gruttadaro said she is confident real changes can be made. And as important, she said, is that the discussion about how to fix the problems remains a vibrant one.

“What is hopeful about the dialogue now is that people are really interested in what can we do, what should we do, how do we approach someone and what action do we take -- and that’s an important first step,” she said. “Then the question is: Do you have the services and supports in place that are needed at the state and community level? And that’s where I think we need to do some work.

At the federal level, the most significant change that has been made is the finalization of Paul Wellstone and Pete Domenici’s Mental Health Parity and Addiction Equity Act of 2008, which when combined with provisions in the Affordable Care Act, will allow access and get rid of discriminatory practices by insurance companies for millions of people. The rules of the act, which will go into effect for practical purposes in 2015, were published a few weeks ago.

“In terms of impact and scope, these are the two most significant policy initiatives to be passed since the shootings at Newtown last year,” said a policy expert who specializes in mental health reform. “It prohibits insurers and employers from imposing higher cost sharing or greater treatment limitations on people in need of mental health care.”

The act, in concert with the ACA, will also tear down what she described as discriminatory practices of the insurance companies, like putting limits on visits and obstacles to treatment, that have been a staple of coverage of the mentally ill for decades.

“One of the most important effects the parity act will have is that it recognizes that we shouldn’t treat the brain different than we treat the body,” she said. “That when you’re treating a child you are treating the whole child -- mind and body -- that the brain should be treated the same way you would treat an injured limb.”

The ACA reforms mental health in another fundamental way for millions of people in the criminal justice system. 

“Most people leaving the justice system or leaving jail, they disproportionately have mental health issues, and don’t have insurance and are poor,” said Laura Usher, program manager of NAMI’s crisis intervention team, which works with law enforcement and school resource officers to develop mental health training.  “For youth it’s particularly high.”

National health care reform makes it easier for people in the justice system to get coverage and treatment.

“If they have access to a computer they can now apply for coverage before they leave prison,” Usher said. “When they’re back in the community then they can get coverage right away, they can get their meds, they can get an appointment to see a doctor right away.”

But as experts and advocates applaud the policy reforms that have been made, they warn that there is still a long way to go. Some suggestions are concrete -- like the need for more money to provide psychiatric beds, and the desperate shortage of pediatric mental health specialists; others however, are resistant to legislative fixes.

New Laws, but the Stigma Remains

One of the paradoxes of the legacy of the shooting at Sandy Hook, experts and providers say, is that while it has sparked meaningful conversation and substantive policy changes it has at the same time reinforced the worst, and misinformed, stereotypes about mental illness and violence, making the stigma attached to mental illness, particularly with parents and children, more acute.

“The stigma is a huge problem still,” said Kate Mattias, executive director of NAMI Connecticut. “Whether they’re children or adults, stigma keeps them out of care. They don’t want to be associated with someone like Adam Lanza, the parent doesn’t want that either. It becomes a Catch-22. They can’t get the treatment because they don’t want the diagnosis. And they don’t want the diagnosis because they don’t want that stigma.”

When the average reader who is not immersed in the world of mental health statistics sees a picture of a vacant-eyed, sallow-faced Adam Lanza with the words “Satan” splashed on the frontpage of a tabloid, it peddles the false notion that the mentally ill are inherently violent, when the latest scientific research suggests the opposite.

“Those stereotypes I think cause youth and younger people to feel like, I can’t come out because everyone will think ‘I’m like that’ and I can’t access care because I’m admitting I’m that,” Gruttadaro said. “But what’s walking around them every day are people with mental illness who are living ordinary lives with stability. They’re not experiencing any of that.”

That impression, experts say, drives people, especially parents, away from seeking help, worried that their child and their family will be stigmatized. That stigma derails policy discussions and changes how people deal with a friend who is mentally ill.

“It’s very easy to say to your friends, ‘Jimmy has cancer,’ but its really hard to say to your friends, ‘Jimmy is bipolar’ because there’s still this stigma,” said Emily Cepla, NAMI’s program manager, Child and Adolescent Action Center. “Say I’m a teen with a mental illness and I know that I need help. All my friends look at me and they say, ‘you go to class, you do your homework, you come out with us on the weekends, you’re not like that kid that shot up Newtown, you’re fine -- get over it.’”

So that teen doesn’t have that support, she added, because his friends don’t understand that mental illness looks very different than how it’s portrayed in the wake of headline grabbing massacres.

There is one mental health professional in northern Virginia who said he worked out a secret system with one of his patients to get him help. When the mental health professional’s client  is having thoughts about hurting others he tells him. But instead of telling the hospital that the client is talking about hurting others, the professional says he is suicidal.

“If we didn’t have that understanding, he wouldn’t come to me for help,” said the patient’s mental health provider. “It’s that simple. After Newtown, the stigma on people with mental illness who have those thoughts about hurting other people is too much.”

The health care professional said he hopes that the promise of change that flourished in his state after the shootings at Virginia Tech do not lose steam in Connecticut. He said there was a lot of grandstanding from local politicians in Virginia, as well new laws, but that in many ways the state is worse off in delivering mental health services after the shooting than it was before.

“What’s the point of a new law requiring additional psychiatric beds without the money to pay for them” he said. “There is no point. They’re worthless.”

A psychiatric nurse practitioner who works near Newtown, said she knows her patients are still wrestling with the stigma. Many of her patients, she said, had anxiety after the incident at Sandy Hook. Many of them lived so close. Many patients feel they need to live secret lives.

“I don’t know how you break that,” said the nurse, who spoke on the condition of anonymity to protect her patients’ privacy. “Depression, anxiety, they’re not as remote as other health problems. But a lot of people are still struggling with their diagnosis, a lot of people are getting help but they don’t want to talk about it.”

Right now she works with families helping them develop what she calls their emotional expression, aiming to normalize the language around mental illness.

“I always compliment the children I work with that you are getting skills in emotional expression that most adults don’t have,” she said. “Expressing your emotions, that’s therapy 101.That’s why I hope when people talk about prevention after Newtown that that’s the direction we’re going.”

“No one is connecting the dots”

In Hartford, Conn., legislators passed an unprecedented gun law in the wake of Newtown, with numerous restrictions on buying guns, a higher age limit and a gun registry for violent criminals. The law also forbids gun purchases by people who admit themselves voluntarily to a psychiatric hospital within six months. But there were a number of mental health reforms included in the law, too.

One measure that came out of Hartford as part of the state’s sweeping Omnibus Gun legislation is the increase in the number of Assertive Community Treatment Teams. These are teams of clinicians and peers that either work for the state or have been contracted by health agencies to go into the community and engage people with mental health problems. They oversee people to make sure they have access to care, that they are getting that care and their proper medications, and have housing.

“The person might already have a case manager,” Mattias said. “But that case manager might not notice that their client is not keeping appointments, or that they have run afoul of the legal system, or are having trouble maintaining themselves. The ACT teams go out once a week and make sure the things that need to happen are happening and also reach out to people who haven’t gotten themselves established with with treatment management.”

One of the major problems that providers on the ground and advocates agree on is the need to reach teens with mental illnesses. Some studies find that one out of five children are affected with mental illness, and that of that 20 percent of that population only half get treatment. Often, experts say, those children are written off as disciplinary problems, so they go undiagnosed and untreated, and eventually drop out.

“No one is connecting the dots,” Mattias said. “So they see it as a behavioral problem not a mental health problem. Very often, with the problem left unidentified, they go untreated. The science has shown the earlier the intervention the better the prognosis.”

Mattias said she could not overstate the need for more education for identification of children with early onset mental illness -- for teachers, counselors and administrators, but also for parents. The new law provides for that training, but she wants the state to do more.

“They need more information on how to talk to parents about those issues, and ways to engage parents that won’t make them defensive,” she said. “One of things we will go back at in future legislative sessions is something we really believe strongly in, which is school-based health, mental services and mental professionals in every school in Connecticut for high school and grade schools. We’d really like to see that.”

Mattias who has visited Sandy Hook since the shooting, said residents are asking hard questions, questions she hopes other residents are asking to avoid another tragedy.

“They are asking how could we have missed this, how could we have missed this mom struggling with this son,” she said. “Instead of circling the wagons and just living with their sadness and anger they’ve decided that what’s going to come out of Sandy Hook is positive.”  

The Glen

There is an uneven cobblestone staircase near a bridge at the corner of Washington Avenue and Churchill Road, below the small collection of shops and dinettes that passes for a downtown in Sandy Hook. The staircase leads down to a tiny clearing near a stand of leafless maple trees. A wooden bench is there so visitors can listen to the gentle susurrations of the Pootatuck River and watch fisherman cast their lines. A small wooden sign jammed into the ground says this oasis is called The Glen. It is a New England idyll.

In the day after the shooting, if you were sitting on that bench you could see a cryptic message painted on to the support wall below the bridge. It read:

“We have everything and we have nothing small and unstable we self destruct we are sleeping sheep and there are wolves among us.”

Today, the uncanny message is gone. In its place is a gray rectangular slab of pale gray paint.

This is the other part of the tragedy that still haunts the residents of Sandy Hook. Beyond the horror and sadness in the wake of the killings, is the notion, palpable here, that the town’s idea of itself as a quaint getaway from the chaos of big city life has been destroyed, just as the elementary school down the street has been. It too is stigmatized, now ground zero for one of the signature American tragedies in the 21st Century. Everything about it that makes it seem so pretty and so tranquil is just a reminder of what happened down the road one December morning.

As the anniversary of the shooting approaches, residents have said they have made a pact not to talk to the media when they descend on their hometown. Others have decided to depart weeks ahead of time to avoid the scrutiny. Some have decided to leave altogether. Rows upon rows of “For Sale” signs line the blocks that surround the school site.

“There is a point -- and I think we had already passed it at the six-month mark -- where the continued media fascination with Newtown's psychological state becomes an impediment to the healing process for many people” said Curtiss Clark, the editor of the Newtown Bee, the local newspaper that serves the residents of Sandy Hook, in his explanation for declining an interview. “We, here at The Bee, are keenly aware of that local sentiment, and our main mission has always been to respect and serve the interests of our audience, which is the Newtown community.”

It is hard not to be confronted by the jarring juxtapositions that the tragedy has created. Something innocuous like a banner fixed to the Sandy Hook Volunteer Fire & Rescue Company building now seems like a painful reminder of what happened at the school that once stood next door. It announces Fire Prevention Week 2013. It features a picture of dog puppets holding pots and pans. A few feet away, fixed to the red brick wall of the firehouse, is a plaque that says: “Dedicated to the memory of the women and children who tragically lost their lives Friday December 14. Breaking hearts across our country and across the world.”

Even the signs greeting visitors show how much what happened at the school, no matter how much care is taken by city officials in annihilating each of the building’s bricks, has become woven into the fabric of this New England village. Just past the town line separating Monroe from Newtown there is a road that runs parallel to some woods, less than a mile from the leveled school site. A string of  26 angels has been strung off of two leafless trees just behind a metal guardrail. Scrawled in grease pencil on the bellies of each paper cut out is the message:

“Welcome To Sandy Hook”

 All photos by Robert Stolarik.