For Janet, a Brattleboro mom, parenting was hard enough before Covid-19.
Her 8-year-old adopted son Jeremiah, who has attention-deficit/hyperactivity disorder and post-traumatic stress disorder, will fly into fits of rage, kicking and punching and yelling until he runs out of steam. He’ll threaten violence and occasionally follow through. Once, he ran off toward the river, and Janet had to call the police.
But when the pandemic hit, the tenuous balance Janet had created suddenly snapped. Jeremiah’s behavior grew worse, and it was all she could do to keep him focused on his Zoom counseling sessions. Helping him with his remote math and reading classes was less like teaching and more like enforcement.
There was no break.
“It was exhausting,” said Janet, 56. “It felt like we were just holding on.”
In April, she allowed her son’s school to call 911. Jeremiah spent five days in the emergency room at Brattleboro Memorial Hospital.
Janet, who also adopted and raised Jeremiah’s mom, has found herself slipping into depression, unable to check off her to-do list for days on end. For months, the twice-weekly calls from Jeremiah’s case manager provided her only relief.
“It was a good resource for me to melt down to,” she said.
Janet, whose last name VTDigger agreed to withhold to protect her son’s privacy, isn’t the only person buckling under the strain of mental health crises at home. As lawmakers have drawn attention to the number of children languishing in emergency rooms as they wait for mental health care, their families are voicing pleas for help.
Parents — overwhelmingly mothers — report intense isolation, stress and uncertainty of caring for a child with mental illness for months on end, often with minimal help from mental health professionals. In many cases, there wasn’t even help from the child’s school.
“People are just desperate for information and knowledge,” said Laurie Emerson, executive director of the Vermont chapter of the National Alliance on Mental Illness.
It is parents’ desperation that often spurs them to call 911, said Larry Crist, executive director of the Vermont Parent Representation Center. Sometimes, they refuse to pick their children up at the Brattleboro Retreat in the hope that it will help them get services.
“The parents get to a point where they can’t deal with their children any longer, but they can’t get any help,” Crist said.
One exasperated single mom from Chittenden County said she called a long list of providers to get help for her nonverbal 12-year-old daughter, who has autism and a developmental disability, but was merely placed on monthslong waitlists.
Out of options and exhausted at 1 a.m. one April night as her daughter hit herself, the mother brought her child to the emergency room.
“I just broke down and I was like, I just can’t do it anymore,” she said.
The girl spent the night sleeping on a hospital stretcher and 17 hours later was sent home.
“The system is failing these children,” the mother said. “My child needs help.”
‘A barometer of the level of need’
Vermont relies on 10 state-funded designated agencies to provide care for kids and their families.
As part of the regional offerings, families on Medicaid can qualify for respite care, a case manager, and individual and family therapy, among other services. About half of kids on Medicaid who have mental health needs get counseling through their schools, according to Department of Mental Health Commissioner Sarah Squirrell. Private mental health providers fill in the gaps for families on commercial insurance or for those with more specific needs.
But the number of kids reporting mental health challenges has surged during the coronavirus pandemic, stretching the resources available at every nexus of the mental health system.
The designated agencies have a combined 780 staffing vacancies, said Dillon Burns, mental health services director at Vermont Care Partners.
More than 100 of those are at the Howard Center in Burlington, which in turn leads to longer waits, said Chief Client Services Officer Catherine Simonson. The agency has a waitlist of about 60 youth waiting to see a counselor.
The waitlists didn’t exist six months ago. Now, they’re “a barometer of the level of need in our community,” Simonson said.
More intensive treatment is also hard to come by: Vermont’s inpatient mental health beds are full to capacity, in part because the state also has a shortage of placements for kids who are ready to leave the hospital but aren’t yet well enough to return home to their families.
Without full-time school, children and teens lack the social connections and the most easily accessible services that could prevent them from needing more intensive care.
When a child has to wait six months for an appointment with a therapist, “it should be no surprise to anyone (that) things keep spiraling downward until they get the help they need,” said Rep. Anne Donahue, R-Northfield, a mental health advocate.
‘It’s just me’
As lawmakers and advocates drew attention to the high numbers of kids in emergency rooms, families called VTDigger to share their stories. Often the messages came in the form of a plea, a last-ditch cry to be heard.
A mother named Lori said she had cried every single day since her 16-year-old son experienced a cannabis-induced psychotic break in October.
Before that episode, he had not shown signs of a serious mental health condition. Lori said it felt like she had inherited a new son. Matt spent five days in the emergency room and went to the Brattleboro Retreat for three weeks last fall.
On the way home, he had another psychotic episode, and soon after, jumped out of Lori’s moving car, worried she was taking him back to the hospital.
“No one told me what to do,” she said.
Lori has learned about the condition and how best to support her son by researching internet articles about psychosis, often during her work hours. While Matt has spent nearly every day for the past seven months alone in his room, Lori has spent the time urging, cajoling and sometimes nagging him to do his school work or get outside or go to the gym.
She worries that Matt won’t return to the social, athletic teenager he was before the psychosis.
“Frankly, I was becoming a complete mess over it,” she said. Lori said she would like more treatment options, but regular check-ins, some companionship and a mentor for Matt might be enough to help him.
“It’s exhausting, and I don’t know if I’m doing the right thing,” she said. “It’s just me.”
Demand has surged in nonmedical programs as parents seek other ways to get the help they need. A record number of parents signed up for the eight-week, family-to-family classes offered throughout the year by the Vermont chapter of the National Alliance on Mental Health — more than double the normal enrollment, said Emerson, the organization’s director.
Calls to the hotline at the Vermont Family Network have also risen, said Vickie Crocker, a family support consultant. The calls are generally lasting longer as families report more acute symptoms and require more help.
“Parents are really becoming the sole provider for education, and they’re stuck being the primary provider for mental health,” she said. “Families feel very isolated.”
A growing number of calls come from grandparents now caring for their grandchildren, Crocker said. Many callers report that mental health challenges are leading to truancy from school. Some people will call back five or six times to discuss the same problem, unable to get the help they need elsewhere, Crocker said.
The challenges of families who care for loved ones with mental health crises is not new, nor is their need for support, said Robyn Freedner-Maguire, a Burlington resident and a parent of an adoptive daughter with mental health needs.
During a particularly difficult week, a parent will inevitably “become extremely fatigued. You’re tired. You’re low-resourced. It’s difficult to manage. You become uncertain what to do, and you need backup,” she said.
But Freedner-Maguire said more children suffering during the pandemic has brought a silver lining: more awareness.
“I am pleased with the sense of urgency that that’s happening right now,” she said, “but if Covid hadn’t occurred, I honestly don’t know if that would have changed.”
A community based system
Pressure on the system — and ultimately on families — will likely decrease as kids return to school full time and Covid-19 restrictions loosen, allowing for more treatment options, said Laurel Omland, director of the Child, Adolescent & Family Unit at the Department of Mental Health.
The department is seeking to make improvements, Omland said.
She pointed to a slate of solutions officials had put forward to open up additional beds and cut down on wait times for kids.
She also highlighted a plan for a mobile response unit in Rutland. The state had allocated funding for a pilot project, which would show up at a home or school to deescalate a mental health crisis and help families connect with services, reducing reliance on police and emergency rooms.
The legislature simply needs to allocate more funding for additional services and higher wages in order to mitigate the crisis long term, Simonson said.
“We need more support for community-based services,” she said.
The dearth of community based services was what ultimately led Janet to send her son Jeremiah to the emergency room.
He spent more than two weeks in inpatient care and endured a grueling experience in the emergency room. But in some ways, it worked: The crisis was enough to persuade the local mental health agency to move Jeremiah up the list for a mental health “community worker,” who is supposed to start meeting with him this week, Janet said.
While he still struggles with controlling his anger and other mental health challenges, a few more hours of services each week is a start.
“I want something done now while he’s young so he can function as a productive member of society,” Janet said.
She’s hopeful it’ll help both her son and her family as a whole. For the past year, “it’s felt like we were constantly putting a little ointment and a Band-Aid” on the gaping wound that was her son’s mental health.
“I’ve been trying to do everything I can,” she said. “I’ve tried everything.”