Why are children who need mental health care still ending up in ERs?
While there was bipartisan support for the 2019 mental health investments, there is a sense of urgency now to move as quickly as possible, due in part to a May 11 state Supreme Court decision. (Dave Cummings photo)
During their three-day wait in an emergency room with an 11-year-old son in a psychiatric crisis, a couple watched an agitated adult patient pace the hallway, cursing, threatening people, and exposing himself. They weren’t allowed to close their son’s door. A 12-year-old girl in a nearby bed didn’t even have a door.
“It’s just so wrong that they are using the emergency rooms for this purpose,” said the Rockingham County mother, asking to be unnamed to protect her son’s privacy. “One boy had been there 21 days.”
Since the start of the pandemic, it’s not unusual for there to be as many as 15 to 30 children waiting in New Hampshire emergency rooms each day – sometimes for several days, often in traumatic circumstances – for one of approximately 60 child psychiatric beds. At one point in February, there were 49 waiting. With too few options for counseling and treatment in their own communities, families have turned to emergency rooms as their only option.
It’s a crisis lawmakers and mental health advocates thought would be alleviated by now. But nearly two years after the Legislature set aside approximately $20 million to expand mental health services for children, advocates say the most important piece – statewide mobile crisis response teams – may still be a year or more away.
“Why is this taking so long as kids and adults continue to pile up in the ER?” said Sen. Becky Whitley, a Democrat who helped write the legislation. “We’d be in a very different place if this had been stood up before the pandemic.”
A late budget veto in 2019 and the COVID-19 pandemic contributed to the delay. But advocates say the real slowdown has been a decision by the state Department of Health and Human Services to expand crisis response to include adults and prioritize creating a crisis call center over hiring and training crisis response teams.
Children in psychiatric crisis
Meet three families whose pleas for help led to an ER. Click on the headlines below to read their stories.
‘I’m worried about what is going to happen when I’m not here’
Terri Clyde learned soon after adopting her grandson in 2007 that fetal alcohol poisoning syndrome disorder had planted violent hallucinations in his mind, commanding him to hurt himself and others. Since then, Clyde and her husband have mortgaged their home three times and fought state and local health providers for years to get their grandson John treatment.
“John is an awesome kid, and he has awesome potential as long as there is available care,” said Clyde, 61, of Nashua. “But there is a huge lack of available care and a huge lack of understanding. I’m worried about what is going to happen when I’m not here anymore and he can’t navigate the system. Is he going to become violent because he doesn’t know how to express himself and end up in jail?”
Initially, therapist after therapist told Clyde her grandson was too young to treat. When John started school, teachers said he needed more discipline. He tried to jump from her car at 65 mph. Visions of bugs and blood and scary faces made him flail, sometimes dangerously so.
John, who is now 17, was hospitalized four times between the ages of 4 and 8, once for 30 days at New Hampshire Hospital, often in restraints. During one of those long emergency room waits, Clyde watched her grandson crush a cracker in a fit of fear and confusion. When he asked a nurse for a drink, she told him no, not until he picked up the crumbs.
Desperate and unsure what else to do, Clyde put all her frustrations in a letter to then-Gov. John Lynch in 2008.
“I just told him what had happened to John and asked him how he would feel if it were his child,” Clyde said. Within days, Clyde found herself at a meeting with state and local health care leaders. She left that meeting with treatment services her grandson was eligible for but she didn’t know existed, including special medical services, counseling, and in-home help.
But as John’s treatment needs – and eligibility for some of those services – changed, Clyde found herself back in a hopeless place.
Unable to afford private counseling and treatment, Clyde sought help through the Community Mental Health Centers network, which has a center in each of the state’s 10 counties. Clyde discovered that her county’s center did not have the specialized treatment her grandson needed but that a nearby one did. Clyde was willing to make the drive, but the centers’ contracts with the state prevent them from taking clients from outside their county.
Seeing no other option, Clyde filed a “child in need of services” with state family court knowing her grandson would get treatment if a court ordered it. “It was awful,” Clyde said. “I had to tell the court everything that had happened to him, including the abuse and neglect he had suffered by his birth mother.”
The court placed John at Spaulding Youth Center, a residential therapeutic school in Northfield, for three years. (Clyde has paid $96,000 and still owes $7,000 for her share of the stay. A law change last year exempts parents from charges for court-ordered treatment and services, but it is not retroactive.) John returned home in 2015 and now attends the Lighthouse School, a day school and treatment center in Chelmsford, Mass.
There have been additional emergency hospitalizations for suicidal thoughts, and Clyde fears there will be more. In testimony to lawmakers this year, Clyde pleaded with them to increase funding for mental health treatment and services.
“There is a huge lack of available care and a huge lack of understanding,” Clyde said. “Mental health illnesses are very real in our children, and our families are struggling to find care, pay for care, and be supported. There needs to be a system of care. There needs to be more collaboration.”
– Annmarie Timmins
‘The system is fractured’
A Bow mother did not call 911 or rush to the emergency room when she found her son trying to hang himself in September 2019. She’d done that five months earlier when he revealed a suicide plan, and felt two nights in the emergency room and subsequent one-week hospitalization had made things worse for her son.
She instead spent the night at her 16-year-old son’s side and called his therapist the next morning. Between her and her husband’s private insurance and personal means, she hoped to bypass the ER and quickly admit their son to a quality hospital that would treat him, not just stabilize him.
She was wrong.
After her son’s therapist called 911 to the house, the boy was taken back to the emergency room, this time by ambulance. The two nights there made him worse, not better: “I get the thinking. … They are trying to dial it down on the crisis mode,” she said, asking not to be named to protect her son’s identity. “But that does nothing to address the emotional pain they are going through, and it just delays the real work. It does not work.”
Over the next seven months, the couple spent nearly $120,000 to save their son – and still went through what so many parents do when their child is in crisis: long traumatizing waits in emergency rooms, battles with local and state mental health agencies, few counselors with openings, and court hearings where they feel voiceless.
The second trip to the emergency room was worse.
The couple were not allowed to see their son and were unaware until much later that staff had mistakenly increased one of their son’s medications from 75 milligrams to 300 milligrams. (The hospital apologized, reduced their bill, and said it was reviewing medication procedures.) And they didn’t know they could object when the hospital asked a court to involuntarily admit their son to New Hampshire Hospital.
During their son’s two-week stay at New Hampshire Hospital, his private therapist advised the couple to hire an “educational consultant,” an advocate to represent the family in its push for inpatient treatment at a private hospital. They did, at a cost of $3,500, because they believed it was the only way they would be heard.
The consultant was successful in getting their son admitted to Elevations, a residential treatment program in Utah, where he spent 10 months. Since his return in August, he has completed high school and been accepted to three colleges. He sees a private counselor regularly and has been able to more successfully cope with stressors.
She knows that few parents whose children are in similar crises have access to that same level of care, especially if they are insured by Medicaid.
“The system is fractured and insufficient to meet the needs of the community,” she said. “It’s like you are hunting for a needle in a haystack of other needles. And while trying to find that one, you have to sift through all the other painful options that may or may not make things better.”
– Annmarie Timmins
‘I’m not sure we are willing to step foot in there again’
Amber never disagreed with counselors who said her daughter needed residential treatment. The child’s homicidal rages began in preschool and had become more than emergency rooms and short hospital stays could manage.
But getting that treatment took years of long, painful emergency room waits, often in restraints; fighting with schools for educational services; and counselors who said her daughter was too dangerous to treat.
Amber, who asked that her last name not be used to protect her daughter’s privacy, could not afford residential treatment, which cost one family in this series $100,000 for a three-year stay. If her daughter’s school made the placement, however, the school district would cover tuition. The school refused.
“We had gotten to the point where our safety plan was to call the police because that is what the community mental health center told us to do,” said Amber, who lives in greater Concord. “We were so scared of ever taking her back to the ER that we thought, ‘How far are we willing to let her go because I’m not sure we are willing to step foot in there again.’ ”
At age 3, Amber’s daughter was diagnosed with ADHD and prescribed medication. Counseling started the next year, and with each counselor came a new diagnosis: Autism. Oppositional Defiant Disorder. Reactive Attachment Disorder. “They didn’t know what to do with her,” Amber said.
Her daughter was taken to the ER for the first time at age 9, for violently attacking Amber during a doctor’s appointment. Once her daughter was calm, the hospital sent Amber home with no referrals or appointments for follow-up care.
That pattern repeated itself multiple times, once resulting in a five-day wait for an opening at Hampstead Hospital. Amber’s daughter was put in restraints multiple times during those five days, prohibited from leaving her room, even with a parent, and received no counseling.
On Christmas, Amber had to call the police when her daughter lost control and became violent. Her admission to Hampstead Hospital a few days later was a turning point.
A hospital social worker persuaded the school district to agree to residential placement and worked with the school to find a place willing to take the 13-year-old. Twelve said no, one had a four- to six-month waiting list, and one, Crotched Mountain, enrolled her April 1. She is doing well.
“The biggest frustration is that we knew when she was little (that she needed treatment), and if people had put those things in place back then, I question whether we’d be in this place now,” Amber said. “Money and systems are set up in such a way that there is not intense therapy for a 3-year-old, a 4-year-old, a 7-year-old. These kids languish until they turn 10, 11, and 12, and then it costs even more money to treat them.”
– Annmarie Timmins
Erica Ungarelli, director of the state Bureau of Children’s Behavioral Health, said the state is negotiating with a company to run the call center, and expects to sign a contract “very soon.”
She understands the frustration coming from families, advocates, providers, and lawmakers. “A lot of work has been done, is being done, and needs to be done,” she said. “These sorts of major transformations take a long time. It feels vital especially now … when kids are struggling. But this does take a while, and we want to get it right.”
Hiring and training the response team staff could take many months, advocates said.
The state and New Hampshire’s 10 community mental health centers agree that the centers, which already contract with the state to provide mental health services in their regions, should also provide the crisis response teams. But they disagree over how challenging and lengthy the hiring process will be.
Treatment advocates said the new call center and mobile crisis teams will require 200 workers, a majority of whom will need clinical credentials. Meanwhile, the centers are struggling to fill nearly 240 current vacancies, about 200 of which are clinical staff who work with clients. A persistent workforce shortage and higher private-practice salaries will make recruitment a long-term challenge.
Jay Couture, chief executive officer of the Seacoast Mental Health Center, is concerned the state and community mental health centers will be competing for the same job candidates. Recruitment may be harder for mobile crisis teams given that treatment happens in potentially volatile home settings, she said.
“I think mobile crisis is really a great thing,” Couture said. “There is a lot of pressure to get this up and going ASAP, but if we are hiring for the same credentials, it would be unlikely to see everyone being staffed.”
Roland Lamy, executive director of the New Hampshire Community Behavioral Health Association, the joint network of the mental health centers, agreed. He said much will depend on how much money the state will provide the centers for hiring and training. “If it’s funded properly, I think this is the right play,” said Lamy, who, like Couture, supports expanding crisis response to adults. “We want to be the source (that provides crisis response), but workforce and dollars. … I hate to say it, are an extraordinary issue.”
Ungarelli sees it differently.
Call centers in other states resolve about 80 percent of calls over the phone, and she expects the same will be true here. Call center staff will be trained to use standardized assessments to gauge a caller’s intervention and treatment needs, de-escalate a crisis, make safety plans and referrals to community providers, and follow up with callers within 48 hours, according to the contract requirements.
Mobile crisis teams will be dispatched to the other 20 percent of calls, Ungarelli said. With both pieces in place, fewer people will need to go to emergency rooms, she said. She believes the center staff who are currently handling cases in emergency rooms can be reassigned to mobile crisis teams.
“We are hoping to shift from one type of crisis response to another type of crisis response,” she said. “We feel it is a change in response, not an additional response.”
The Rockingham County couple who spent three days in the emergency room with their 11-year-old son said they would prefer to call a treatment team instead of the police when their son has a psychiatric crisis.
In-home counseling is the only treatment that has helped their son, who has autism and becomes destructive and violent in unfamiliar office settings. But that has been difficult to get.
After several hospitalizations and emergency room trips, Medicaid approved in-home counseling but later revoked approval for reasons the family didn’t understand. After multiple appeals, the couple learned they’d been reapproved in February, while they and their son were in the emergency room.
They believe a residential school is the best treatment for their son because he would receive counseling in a comfortable setting and get more beneficial special education services than his public school can offer.
“But it’s pretty inaccessible,” the mother said. “You can’t just sign up for it. You either have to press charges against your child or go through the school system. Both take a long time, and the school isn’t going along with it.” (If a school makes a placement, the school district pays for the stay.)
Republican state Sen. Jeb Bradley co-sponsored mobile crisis legislation in 2019 and sees continued bipartisan support for giving families far more options for affordable and accessible mental health care in their own communities. Success, he said, will require not only launching the mobile crisis response teams but also persuading private insurance companies to expand behavioral health coverage, Medicaid to rethink reimbursement rules, and recruiting more health care workers to the state.
“It’s a lot slower than people want,” he said, “but I think we are going in the right direction.”
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