One of Jennifer Maksel’s sons escaped the classroom where a gunman opened fire at Sandy Hook Elementary School.
But it was her older son that Maksel wanted to talk about Tuesday.
“I need help for him,” she told legislators during a hearing on mental health held in response to the Sandy Hook shooting.
Maksel’s son is 12, with a series of diagnoses: Asperger’s syndrome, obsessive-compulsive disorder, pervasive developmental disorder. He’s alone; he hasn’t been invited to a birthday party since second grade. As she testified, Maksel lifted her arm and pulled up her sleeve to show the bruise he gave her after he slammed his brother during a fight over a remote.
She said she didn’t want another tragedy like the one at Sandy Hook, perpetrated by another young man described as a loner.
“Would I think he would do it? I don’t think so, but who knows? He’s 12 years old,” Maksel said. “But if I don’t get him social skills to prepare himself, when he’s 18, what am I going to do?”
Getting help has been hard, she said. The school system has resisted. She’s been told the right resources aren’t available in her area. She’s taken him to the hospital, but because there are no services for young people with psychiatric needs after 5 p.m., they have to wait overnight.
Many of the challenges she described came up repeatedly Tuesday in spoken and written testimony: Too few outpatient services; young people stuck in hospital emergency rooms while they waited for a suitable psychiatric placement; difficulty getting the right services for family members who need help, especially young adults.
Those who submitted testimony offered differing views of mental illness.
People with schizophrenia, bipolar disorder and other conditions spoke of facing discrimination, fears of being scapegoated for acts of violence and concerns about reactive policy changes — including an effort to allow for mandatory treatment.
Parents of adult children with untreated mental illness described their frustration at being unable to require that their loved ones get treatment.
Mental health professionals warned that cuts to services could have dire consequences. They stressed the importance of early diagnosis and intervention, and noted that people with serious mental illness are more likely to be victims of violence than perpetrators of it.
Several people submitted written testimony referring to the ongoing discussion of gun violence stemming from the Sandy Hook shooting and suggested that changes should focus on mental health, not guns. Some gun owners said they felt vilified for the actions of people with psychiatric problems.
Those who offered comments had a wide range of suggestions: Better funding for the community mental health system. A public health campaign to remove the “shame and blame” associated with mental health treatment. More mental health professionals in schools. Require reporting of children with signs of mental illness in the same way teachers must report signs of abuse. Track people with mental illness in a database. Re-establish state mental institutions to keep people with mental illness away from society.
Nelba Marquez-Greene, a licensed marriage and family therapist whose daughter, Ana Grace, was killed at Sandy Hook Elementary, suggested integrating mental health professionals into natural settings like schools, churches, libraries and community centers as a way to reduce the stigma that keeps families from seeking help. She also suggested a campaign of public service announcements to provide information about mental-health resources and information for caregivers.
Marquez-Greene also identified gaps in the mental health system: not enough trauma-trained professionals, inadequate funding for programs that help children and families, insufficient training to address trauma symptoms, parents refusing treatment for their children. And she said the state must focus on ways to build empathy in young children, support parents so they can focus on their children’s emotional and developmental needs, and other ways to prevent problems from developing.
Mental Health and Addiction Services Commissioner Patricia Rehmer and state Healthcare Advocate Victoria Veltri said it’s often harder for people with private insurance to access mental health services than people covered by state programs. Rehmer spoke of stigma that leads many people to pay for behavioral health care out of pocket to avoid having any reference to it in their medical records, which she said would limit the ability to increase access to services.
Tinia Rodriguez: ”We’re still human. We still feel things.”
She and several other speakers said it’s particularly challenging to get services for young adults between 16 and 25, the age when signs of serious mental illnesses often begin.
Tinia Rodriguez, 23, came from Bridgeport to offer this message about people who, like her, have a mental illness: “Do not be afraid.”
“We’re still human. We still feel things,” she said. “The only difference is we just need extra help.”
Rodriguez said she grew up exposed to violence and abuse. Her family discouraged any attempt to address mental illness. “No, we don’t’ want you to go to a shrink because you’ll look crazy or take pills,” she said they’d say.
She was diagnosed with schizophrenia and depression. And she said she wanted people to know that people like her are just like everyone else. She’s a certified nurses assistant and volunteers at Bridge House, a psychosocial rehabilitation program for adults recovering from the effects of psychiatric illnesses.
After the Sandy Hook shooting, she said, stigma about people with mental illness increased. She said she worries about efforts to take away their rights or to restrict what they can do. Instead, she said, there should be more funding for existing programs that offer support.
Others submitted testimony urging lawmakers to focus on mental illness instead of gun violence.
Jeffrey Dudley of Milford submitted testimony urging the state to “get serious about treating mental illness once again,” referring to institutional care for people who were mentally ill and dangerous.
“It is clear that our modern experiment of outpatient treatment and halfway houses that were implemented in its place have categorically failed,” he said. “There needs to be a place for patients with these significant mental disorders to be treated with limited or no exposure to general society. We cannot turn our back on them any longer; they need help as do their families.”
Several people offered testimony about family members with mental illness.
Susan Gallagher of Wallingford described her 23-year-old son who was diagnosed with schizophrenia two years ago — five years after she first tried to get him help. After he turned 18, Gallagher said she faced even greater challenges; even when she cried on the phone trying to make an appointment with a psychiatrist, she’d be told that her son needed to make the call.
At one point, he cycled in and out of the hospital, attempting suicide after being discharged. Often, he would only be admitted after she convinced the staff he needed it.
“The sad truth seems to be that the mentally ill do not get the help they need until there’s a crisis. Can this be changed, or is it just the nature of the illness?” she said. “I would like to see restrictions lifted on parents for children over the age of 18 that are financially dependent on them.”
James Stone Sr., of Vernon, submitted a letter to his son who has schizophrenia and who he said did not believe he had a disease that needed treatment.
Stone wrote about noticing something wrong after his son went to college, and, later, the heartbreak of visiting his son in a psychiatric ward.
“If there were ever a way that I could reason with you, to explain that what you have is a disease that can be treated, and that if you were to keep taking your medicine it would help. That every time you go off of it and end up in the hospital, it gets a little harder to recover again,” he wrote. “And, even though your life will always be harder than everyone else’s, you could still live a decent life – you could have the job you want, and your own apartment, and drive your own car.”
“I could never tell you how many times we have struggled to get you the help you need, and how hard it is to get things done — how you have to hit the absolute bottom, at risk of losing your life, before anyone will help,” he wrote.
Stone wants Connecticut to allow court-ordered outpatient treatment for certain people with mental illness, something 44 other states allow, but which has been controversial here. Stone said families have to jump through hoops to get their loved ones care, but shouldn’t have to.
But other people who had watched relatives suffer with mental illnesses opposed requiring treatment.
Thomas Burr described eight years of living “every parent’s nightmare” as his son faced bipolar disorder. “At various times, he was hospitalized, incarcerated, homeless and very, very sick,” he said. “And in so much pain he tried to kill himself more times than I can bear to recall.” Twice, Burr’s son tried to kill himself in front of his young sisters.
Burr said he believes the eight years his son spent in crisis could have been shortened if he had not been forcibly restrained and medicated, which made it harder for him to agree to get treatment or to trust the medical community.
“People suffering from severe mental illness need to feel in control of their lives. Forcing treatment upon them, no matter how well intentioned, is completely counter-productive,” he said.
Now his son is doing well, “like a Poster Child for recovery,” sober, with a job, a fiancé and a condo he bought himself, Burr said. He warned lawmakers not to take reactive measures that would increase stigma and discrimination against people with mental illness.
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Related:
Report: Mental health care system fragmented, inadequate
Supporters say court-ordered mental-health care could help – but not stop extreme acts of violence
After Newtown: A rethinking of Connecticut law on outpatient commitment