Waiting for the next crisis: Parents struggle with children’s mental health needs

West Hartford -- Nancy remembers the party at her friends' house, a gathering of a couple of dozen parents. They knew each other because they had children with mental health problems, but that night, they were there to enjoy themselves.

Then a cellphone rang.

"The entire room of 25 people went silent, like that," Nancy said, snapping her finger. "And it just struck me that all of these people are standing on the edge of the knife, waiting for a crisis at any moment."

Long before Adam Lanza shot and killed 20 first graders and six educators at Newtown's Sandy Hook Elementary School, bringing a new focus in the state and nation on mental health issues, these parents had formed an informal support network to talk about their children's needs. They met in hospital emergency rooms, visiting their children in residential treatment, or in court.

They've struggled for years to get the right services for their children, many of whom are now teens or young adults.

Ellen cards

One mother keeps a binder of cards of people in the criminal justice and mental health systems because she's met too many to remember while seeking help for her son.

There's Nancy. Her family's first crisis came when she found her 5th grader hanging from a second-story window, wanting to kill himself.

There's Renee, whose daughter entered the mental health system at 7. When her daughter was 11, raging and out of control, the other parents advised her that the way to get her daughter care would be calling an ambulance to the emergency room.

There's Marie, whose son spent six months homeless after she had to get a restraining order against him. He was 18 (but looked 14, she says), and she thought someone would be there to help him when the judge said he couldn't go back to his parents' home. She was wrong.

Their children's diagnoses seem to change regularly, straining their hope that experts can help. Treatment is hard to access, often requiring moving between private insurance and the state system. They've spent thousands of dollars out of pocket and put their children on medications despite worries about side effects, desperate enough to try anything a professional recommends, in case it's the thing that works.

"We're well-educated people doing the best that we can, and we're failing," said Rachel, an attorney who has binders full of documentation about what her 19-year-old son has been through. "And so we often think of, how about people who don't have the education, the extended support to do what we do for our kids. What about those people?"

At a West Hartford vigil after the Newtown shooting, one of the mothers approached state Sen. Beth Bye and told her, "We want to talk about this. Our kids are really challenging and sometimes violent and we're worried, and there's a chance to do something." The next morning, 12 mothers met with Bye, the first of several meetings to discuss potential policy changes.

They recognize that it's not yet known if Lanza had a diagnosed mental illness, and that people in the mental health community are careful to point out that most people with mental illness are not violent. But their struggles give them another perspective.

After the Sandy Hook massacre, "We all felt for Adam Lanza and the family," Marie said. "I'm a former kindergarten teacher, so I was devastated. But my thought was, he was a victim, too."

Isolation and blame

Madeline and Brad's daughter Jennifer was hospitalized for the first time at the end of third grade after she told a police officer she would kill people. They decided they wouldn't tell anyone they knew. Otherwise, if she got better, it would be there to haunt her.

Like the other parents, they asked not to have their real names used because of concerns about the effects it could have on their child.

Despite their agreement, Madeline was lonely and desperate to talk. Trying to help her daughter had become a full-time job. She met other parents during weekly groups at a program Jennifer attended after leaving the hospital. The parents were told not to socialize with each other, but Madeline found comfort with them.

"[They] had the same wide eyes, like 'Oh my God, this has just happened to us and none of our neighbors will talk to us and I can't tell my friends. My parents think I'm crazy,'" she said.

On the way to the parking lot one day, Madeline surreptitiously asked two other parents if they could have lunch. They did. It was the first time she told everything.

Rachel binders

Rachel keeps documents about her son's struggles in thick binders.

Over time, she collected others. She called Rachel after learning that her son had been hospitalized. "I just about leapt off the couch in glee," Rachel said.

Rachel's son is 19. She believes the three years he spent in residential treatment "probably saved his life." He lives at home now. Recently, she's had to go to the library to get on the Internet because her son broke the family's modem after getting angry that his parents wouldn't give him money for a trip.

"Families who have somebody who struggles with mental illness, it's not because the family does anything wrong," she said. "It's not because the parents aren't paying attention. These are not situations where you can just say, 'Why don't those parents just tell their kids to behave right?'"

But people look to blame the families, she said. An educator once asked the psychiatrist evaluating her son, "Is this a home problem or a school problem?"

"The people that I know through this struggle, parents would do anything they possibly can to help their child," Rachel said.

Fail first

Getting her daughter the right treatment was "brutal," Madeline says. It took two years and seven hospitalizations, but not because professionals didn't know what she needed.

It was because they had to navigate through a complicated mental health system that often requires people to "fail" at one level of care before moving to the next.

"They made us go to the partial hospitalization programs, they made us go to the intensive outpatient programs, they made her try, I don't know, 20 different medications, lots of things before she got the care that really smart people knew she needed two years [earlier]," Madeline said.

"It's like having cancer discovered at an early stage and saying, 'We're not going to treat it until it gets to be stage 4,'" Brad said.

Their daughter's problems began with refusing to go to school in kindergarten, and escalated as she got older, when she would run out of the building. She was in the first week of kindergarten on Sept. 11, 2001, and a classmate's father died the year after. She was afraid her mother would die while she was at school.

By second grade, she was threatening other people. "She would've done anything to get out of that building," Madeline said. "It's like she was trapped."

A team of professionals told Madeline and Brad that their daughter would need more care, but the school system said she could stay there. Then, at the end of third grade, she told the officer the threat about killing people, and she was taken to the hospital in an ambulance. She went to fourth grade at a school for children with emotional challenges, and in the first few weeks, Madeline and Brad were told Jennifer would need residential care.

The next time she was hospitalized, that December, a social worker pulled them aside and told them to apply for the Department of Children and Families' voluntary services. It was the only way their daughter would get what she needs, they were told.

Madeline and Brad, like the other parents in their group, have private health insurance. But to get many of the services their daughter required, they've had to turn to a DCF program for families seeking mental health care. That's because private insurance doesn't cover many of the services children with mental illness require, particularly those offered in the community or at home. And some services, including residential programs, don't take private insurance or allow families to pay on their own, even if they could afford treatment that can cost $150,000 a year.

Eventually, Jennifer went to residential treatment and, later, therapeutic day schools. She's now healthy, attending public high school. She plays sports and has a job.

"The truth is, my family is one of the lucky ones," Madeline said. "We actually got what we needed. It took a long time and a ton of work, begging, cajoling, letters, lots of different things. But we were very fortunate."

She worries that it will be harder for others to get the right care now that DCF has restricted its use of out-of-state residential treatment. Commissioner Joette Katz has made reducing out-of-state placements a major priority and requires that she personally approve any out-of-state placement. The move to restrict such placements was applauded by advocates. But Madeline and other parents who have gotten voluntary services through the agency say the policy has been too restrictive.

The change came just as Ellen, another mother in the group, had secured a bed for her son at a residential facility in Vermont, where he was to go after being discharged from the Institute of Living in Hartford. It hadn't been easy. She'd visited facilities in Massachusetts, Maine, New Hampshire and Colorado. She couldn't find anything available and suitable for him in Connecticut.

The night before he was to be discharged, Ellen packed his things for the trip to Vermont. Then the school called, saying it had been denied. She drove to Vermont the next morning and begged them to take her son. She offered to pay cash. They told her they didn't have a bed for a cash-paying patient.

"I said, 'I have nowhere for this child to go,' and they said, 'I'm so sorry,'" Ellen said.

Some of the parents say there's an inherent problem in having children's mental health services handled by DCF, a child protection agency. While DCF has pushed to have more kids in the child welfare system served by community-based programs rather than residential or institutional settings, some of the parents said they've been frustrated by resistance to getting their children residential placement when other options have not worked. Similarly, while keeping a foster child in a Connecticut, rather than in an out-of-state, residential facility can help keep the child's family together, it's not always the best policy for families that are intact but seeking the right services, they say.

"DCF wanted us to start back at the beginning of community-based care," Rachel said. "They wouldn't listen to our team of experts saying, 'that didn't work, that didn't work, that didn't work.'"

DCF spokesman Gary Kleeblatt said there's widespread agreement that if a child must be treated outside the home, it's best to be in close proximity to family. As of Jan. 23, there were 70 children out of state, an 81 percent drop from two years earlier.

Still, he said, "The commissioner will continue to allow placements outside the state when it can be shown that a child's specific needs cannot be met in state."

As for separating the department's child protection and mental health functions, Kleeblatt said Katz "believes that children's behavioral health services should continue to be provided in a consolidated children's services agency where the special needs of children remains the focus of our attention and efforts."

It's not just DCF that has frustrated the parents. They say private insurance sets the bar too high for keeping their children hospitalized during a crisis, a sentiment echoed by hospital psychiatrists and the state's healthcare advocate. Madeline said her insurance would stop covering hospital care soon after a stay began because, inside, her daughter wasn't a threat to anyone.

Marie said her son once left a psychiatric hospital with a doctor telling her, "He'll be here next week."

"If you make the analogy to medicine, it's as if you have somebody dying, but they have a few breaths left in them so they can go home without any support," Nancy said. "Our standard of care for a kid to be in the hospital is, 'Are they a threat to themselves or someone else?' That's it. It's not 'Can they function in their community, can they go to school?' It's none of the things that a healthy child can do."

'And then it gets worse'

Many of the parents worry about what will happen as their children age and become subject to the adult mental health system, or reject it after being "therapied out." They say the system needs to better address the needs of those age 16 to 26.

Nancy thinks it would be helpful to have people who are not parents, whose advice comes off as nagging, who could encourage young adults to take the next steps in their lives.

They believe families need better tools to navigate insurance coverage and mental health care, and a better system for finding resources.

They want it to be easier for other parents, so they don't have to go through what Ellen calls "such a long, challenging, lonely road that we went down."

Lawmakers are crafting responses to the Newtown shooting, focusing on mental health, school safety and gun violence. Bye, a Democrat from West Hartford, has been working to get the parents' concerns heard. But fixing the mental health system might be harder than addressing guns or school safety.

"I feel like it will be a success if we can keep it on the table at all," Nancy said. "Keep the conversation going, because it's complicated. There are no quick wins here. There are no easy solutions. This is a marathon and not a sprint. Gun control's the sprint. And people like the quick wins."

"That's where we need people who will be committed to this and be diligent to get a broader solution," she said.

In the meantime, they get together and they talk.

"We're very, very hopeful," Marie said. "We say, 'Things can't get any worse, so it's going to get better.' Then it gets worse."

"And we say, 'Things can't get any worse because it's going to get better.' And then it gets worse."

"And we say, 'How many more times can we say that before it gets better?'"

Follow Mirror health reporter Arielle Levin Becker on Twitter @ariellelb.

Related:

Hearing evokes varying views of mental illness

Report: Mental health care system fragmented, inadequate

Post-Newtown, advocates hope for clarity on mental health coverage

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