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“I needed somebody to actually sit down and talk to me.”
That’s what 19-year-old Corae Lawrence said would have helped her when she was struggling through a mental health crisis. She was 14 years old when she began working with IICAPS, a program that provides mental health services to people at their homes, rather than in a hospital or facility.
Lawrence, who spoke at a Thursday forum hosted by several Democratic state legislators to advocate for mental health services funding, said she had been admitted to a hospital for a suicide attempt and had been through outpatient programs. But those options hadn’t worked for her the way IICAPS did.
“Honestly, I felt like because they weren’t trying to really see why I was going to do what I was going to do. I just felt like they were just trying to get me medication and stuff, and that’s not really what I needed,” she said.
At first, Lawrence said, she wasn’t a fan of IICAPS. She didn’t like having people come to her home and ask questions. But she said the IICAPS worker persisted, and managed to motivate Lawrence to go to school and took her to appointments.
She also engaged with Lawrence’s aunt, who Lawrence said eventually came to accept the mental health provider after some initial resistance.
“My aunt … she doesn’t like people to tell her basically what she’s doing wrong or what she’s not doing enough,” Lawrence said. “Once she realized that my IICAPS wasn’t basically coming at her — they were trying to help her – that’s when she grew to love her.”
The number of young people needing mental health treatment skyrocketed during the pandemic, leading legislators to pass a comprehensive mental health bill last year. A recent survey found that in 2021, about a third of all high schoolers — and nearly half of high school girls — in Connecticut reported feeling sad or hopeless for more than two weeks. But the same survey found that only 22 percent of high school students said they were always able to get the help they needed.
State Rep. Tammy Exum, D-West Hartford, told CT Examiner that the main items that needed continued funding were urgent care centers, crisis stabilization units and school-based mental health centers, as well as trauma specialists. IICAPS, she said, was also a priority.
Exum said much of the funding that originally went toward these programs came from one-time federal coronavirus relief funds, and they now needed to be transitioned to the state’s general fund.
“We can’t solve a crisis in one year with [federal coronavirus] funds. So we need those to be [state] general funding and then continue to build on those other programs as we can,” she said.
‘Shouting from the rooftops’
Joining Lawrence at the forum were several parents who spoke of their experiences bouncing from hospitals to residential treatment centers to in-home services, trying to find providers to help their children, and being denied care by the organization tasked with helping them navigate the behavioral health system.
One of the main themes of parents’ struggles revolved around waitlists. The IICAPS program, for example, had 500 children on a waitlist earlier this month, according to reporting from CT Insider.
Parent Tanya Iacono said her 14-year-old son, Rylan, who was diagnosed with autism, began having behavioral challenges a year ago. She started reaching out for services and soon realized her son needed to be placed in a special school. But there was no school immediately available to take him, she said.
“That meant daily phone calls about things that were going on at school. I got lists and lists of providers handed to me. I felt like I was speaking to my pediatrician on a weekly basis to see if there was something else that we could possibly be doing for him,” Iacono said.
Iacono said she was making 10 to 20 phone calls weekly trying to find a provider who could evaluate her son for medication. Meanwhile, Rylan’s behavior deteriorated while he remained in the public school.
At one point, she said, her son began banging his head against the wall. The school called 211, Iacono said, but she arrived there first and decided to take her son to the hospital. At the hospital, she said she was told it could be two days before her son would be seen by a social worker.
Her son ended up at Yale Psychiatric Hospital, where Iacono said he was treated well. But she insisted there were other forms of treatment that would have been more beneficial for her son.
“We were able to get Rylan on medications through the hospital. Wasn’t the ideal way to go about it. We could have avoided the hospital had we not had [a] six-month, one-year wait. We should not have had to go through that trauma,” Iacono said. “… When we were shouting from the rooftops asking for the help, when we initially knew that we needed help … it should have been available to us, and it just wasn’t.”
‘Beyond overwhelming and nearly impossible’
State Rep. Liz Linehan, D-Cheshire, noted that a crisis looks different for every child and family, and that a program that worked for one child won’t necessarily work for another.
Linehan said she wanted to focus on the first points of contact for children with the mental health system, to address their needs as soon as possible and prevent them from worsening.
“I think that we need to continue to strengthen those very first touches to families in crisis, because then we can really work on the more severe side of things for the kids that haven’t gotten what they needed in the beginning,” she said. “I would rather hear that and be able to stand up that second half for those who need it, [rather] than knowing that we failed them in the beginning and that’s why they became so acute.”
Kristen Graham said she struggled for years to find mental health care for her son, who showed signs of a behavioral health condition at a young age. He was diagnosed with pervasive development disorder – a diagnosis that is now under the autism spectrum – and one she said the school district did not accept.
Eventually, she took him to outpatient services at the Yale Child Study Center, a process that involved a half-hour car ride, a long walk from a parking garage, down several hallways and taking the elevator to the waiting room.
“This process for my 7-year-old was beyond overwhelming and nearly impossible,” she said. “The last time he stepped into that building, it landed him in the hospital and resulted with [him] being kicked from the program. That was one of about 15 hospital stays over the years.”
Graham said her son responded best to in-home programs, but the constant waitlists and lapses in treatment landed him in the hospital multiple times. The school called her so many times to pick up her son that she was ultimately forced to leave her job, she said, which left her family on unstable financial ground.
Graham, who now works for the organization Favor, which advocates for families who have children with mental and behavioral health conditions, said things are better now for her son. He’s 18 years old and back in public school.
She credits nonprofits like Clifford Beers, along with the Alfred J. Solnit Center and IICAPS, for their flexibility.
But through her job at Favor, she has continued to watch other families go through the same struggles she experienced.
“I see the frightening, lengthening waitlist continue to grow to an alarming number across the state, due to the increased family need and chronic staffing shortages,” Graham said. “This is a serious concerning barrier for providers, adolescents, and caregivers — and, ultimately, a systems issue.”
‘Heartbreaking and typical’
Exum said another goal was to provide funding to increase the payment rates for mental health providers and find ways to incentivize more providers to come to the state.
Victoria Stob, co-director of IICAPS Model Development and Operations, said IICAPS had recently received a 15 percent rate increase, which Stob said would allow them to raise starting salaries for master’s level clinicians from $42,000 a year to just under $50,000 a year. But Stob said most clinicians with a master’s degree expect to start out at $80,000 yearly.
“This is incredibly stressful and difficult work,” she said, adding that in order to staff the program, they needed to offer salaries that would keep pace with cost of living.
Stob said clinicians went into the homes of students who were dealing with intense difficulties, while the families were often also grappling with depression and anxiety.
“Right now, what we’re doing is going into homes and seeing kids that aren’t going to school, can’t get out of bed, are on reverse sleep cycles, are compulsively using their social media and their phones, are chronically suicidal, are running away from home and breaking the law at much earlier ages,” Stob said.
Melanie Rossacci, executive director for the New Haven-based mental health nonprofit Clifford Beers, said the reimbursement they receive from Medicaid, private insurers and grants from DCF cover only 70 percent of the costs of outpatient care. They have to fundraise for the additional 30 percent.
“The rates are completely inadequate. The [state] Medicaid rates are inadequate, private insurance rates are inadequate, and the small, tiny crumbs of increases that we’re receiving — 2 percent or 3 percent — we try to give cost of living increases to our staff.”
Nonprofits across the state are asking for funding increases of 9 percent in 2024 and 7 percent in 2025, including immediate increases to Medicaid rates for behavioral health. The state budget has not been finalized yet, but House Speaker Matt Ritter, D-Hartford, said during a news conference Wednesday that the current draft offers nonprofits about a 3 percent increase each year through various funding sources.
Rossacci said every level of children’s mental health care — from community–based treatment programs run by nonprofits to residential medical rehab or treatment facilities to the hospitals — are “grossly underfunded.”
“We need to get angry together as a state system, as a private system, as legislature, and be rowing the boat in the same direction to fix the broken way in which the mental health system is funded,” she said.
“Your stories are heartbreaking and typical,” Rossacci said, turning to the parents. “That should not be the case, that they’re typical.”