Anguished mothers with mentally ill children have sought out Liza Long for help ever since she wrote an essay, "I am Adam Lanza's Mother," comparing experiences with her son to the emotionally troubled 20-year-old who carried out the Sandy Hook Elementary School shooting.
The massacre sounded alarms nationally about gaps in mental health care and led to calls for better screening and services, especially for young people showing a propensity for violence, but some key reforms enacted in the wake of the Sandy Hook shooting depend on funding that has yet to be delivered by Congress. And Long still hears almost daily from families overwhelmed by their children's behaviors and struggling to get treatment.
"We're still not seeing the health access, the access to mental health care," said Long, an Idaho mother of four and community college instructor who credited her essay with attracting the attention of a physician who correctly diagnosed and treated her then-13-year-old son for bipolar disorder.
Like other mass shootings before and since, the tragedy prompted calls for tighter controls on guns and improved mental health treatment, but five years later, mental health care providers are waiting for promised boosts in funding, and many families are still battling insurance companies to cover their children's services. While advocates say the quality of mental health care varies widely by state, they also see reason for optimism in a push for more early intervention programs and changing public attitudes about mental illness.
"There's a lot of reason to feel optimistic," said Ron Honberg, senior policy adviser at the National Alliance on Mental Illness. "But there are a lot of challenges too, particularly around financing these services."
The 21st Century Cures Act, which was signed into law by then-President Barack Obama in December 2016, was inspired in part by the tragedy and included what proponents touted as the first major mental health reform package in nearly a decade. The measures that were included in the law but still await funding include grants for intensive early intervention for infants and young children showing signs of mental illness.
"There were a lot of things people took credit for passing," said U.S. Rep. Elizabeth Esty, a Democrat whose district includes Newtown. "If they're not funded, it's a nice piece of paper and something hanging on somebody's wall, but it's not going to help save lives."
Mental health experts point out the vast majority of people diagnosed with psychiatric disorders do not commit violent crimes, and no motive has ever been determined for the Dec. 14, 2012, massacre in which Lanza fatally shot his mother at home and then gunned down 20 children and six educators at the school in Newtown.
A report by the Connecticut Child Advocate noted Lanza's mother rejected recommendations that her son be medicated and get treatment for anxiety and other conditions, but it concluded his actions were not directly caused by his psychiatric problems.
Rather, it said, his "severe and deteriorating internalized mental health problems," when combined with a preoccupation with violence and access to deadly weapons, "proved a recipe for mass murder."
In her column, Long wrote that she was terrified of her son, who was prone to violent rages and had been placed in juvenile detention facilities four times. Only a few weeks earlier, her son had pulled out a knife and threatened to kill her. Since receiving treatment, her son, who is now 18, has not had another violent episode.
"People don't understand the world that parents live in when they have a child with mental illness," Long said. When other mothers reach out to her, she tries to match them up with resources in their states.
Many patients find the right treatment only after going through a lot of detours, said Dr. Vinod Srihari, director of the clinic for Specialized Treatment Early in Psychosis at the Connecticut Mental Health Center in New Haven.
"The nature of these illnesses is that they're often misunderstood," said Srihari, also an associate professor of psychiatry at the Yale School of Medicine. "And so, families with a young person with psychosis can often not rely on others around them to assist because what they're struggling with is misunderstood and could be a source of shame and embarrassment. And that means that they can't leverage their community supports to get the care they need."
U.S. Sen. Chris Murphy, a Connecticut Democrat, said he expects it will be difficult to secure funding for the new programs in the Republican-controlled Congress. But, he said, there are other recent reforms that are also making a difference.
The creation of an assistant secretary position at the U.S. Department of Health and Human Services dedicated to improving behavioral health care has put pressure on insurance companies to cover the cost of mental health conditions equally as physical health, he said.
The 21st Century Cures Act also created a committee to advise Congress and federal agencies on the needs of adults and young people with serious mental illness. It is scheduled to meet Thursday, the fifth anniversary of the Sandy Hook massacre, to discuss the group's first report to Congress.
Committee member John Snook, executive director of the Virginia-based Treatment Advocacy Center, said there is cautious optimism about improvements to come from the focus the Sandy Hook shooting put on mental health.
"We are definitely cognizant that the window is closing and attention is shifting," Snook said. "You don't want another tragedy to be the reason people are reminded they need to focus on these issues."