The High Cost of Mental Health Care for One Family

October 7, 2019
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by Catherine Trautwein Tow Journalism Fellow, FRONTLINE/Columbia Journalism School Fellowship

This story and accompanying film, Waiting for Tearah, were produced as part of the FRONTLINE and Firelight Media fellowship to support diverse independent producers. 

In January 2017, Shayna Wilson’s 15-year-old daughter, Tearah, wound up in the hospital for the second time in three months. Tearah had struggled with aggressive behavior in the past — she was diagnosed with intermittent explosive disorder — but the incidents that spurred these latest hospitalizations were scarier.  

A few months earlier, Tearah had tried to choke Wilson’s fiancé and spent two weeks in an inpatient unit. Then, on January 19, Tearah’s school in Connecticut called 911 and sent her to a hospital emergency room. School staff told the hospital she had been acting “psychotic” and “homicial [sic],” according to her medical records. After nine days in the hospital, Tearah began banging her head on the floor and trying to hit staff, forcing them to restrain her.

So when the hospital told Wilson her daughter was ready to go home, she was worried. 

Wilson had always been Tearah’s champion. She likened motherhood to being a superhero, a particularly vital role for Tearah, who is deaf and has developmental delays and an intellectual disability. But after Tearah’s two hospital stays in quick succession, Wilson kept thinking of her two younger daughters at home.

“Tearah’s behavior has been becoming progressively worse, and her aggression has become increasingly dangerous to both herself and others,” Wilson wrote in an email to several state agencies, including Connecticut’s child protection watchdog, on January 30.

Several of Tearah’s clinicians recommended another option: residential treatment, a live-in facility where Tearah could receive specialized treatment and learn skills that would eventually help her come back home.

One doctor specifically recommended the American School for the Deaf, which had run a residential treatment program for decades. Tearah had attended the school, a 15-minute drive from her home, since she was three years old. Now, perhaps, she could be enrolled as a boarder.

The problem was, nobody seemed to want to pick up the bill. Wilson was told her insurance wouldn’t cover residential treatment, which can cost hundreds of thousands of dollars per year. As a single mother raising three children, she couldn’t pay for residential treatment on her own, and the American School for the Deaf didn’t take private pay.

Connecticut’s Department of Children and Families, which is responsible for child welfare in the state, turned her down. The Department of Developmental Services, which aids those with intellectual disabilities, also declined to cover the costs.

Tearah was instead transferred to Bradley Hospital’s Center for Autism and Developmental Disabilities inpatient unit in Rhode Island, 100 miles away from her home. Wilson took time off of work to make the drive as often as she could. 

Tearah lit up every time she saw her mom. On one visit, Wilson brushed Tearah’s hair with a yellow comb — her favorite color — and shared photos and memories from home.

Before she left, Wilson signed words of encouragement to her daughter. “I don’t know when home yet… I hope soon,” she said. “You’ve been so patient. Thank you. I know you’re like, ‘Come on. I wanna go home.’ I understand. But, soon, I think. I don’t know.” 

Wilson’s struggle to secure the recommended treatment for Tearah is part of a larger shift in the U.S.’s approach to treating children with mental illnesses. Residential treatment centers began to appear in the 1930s as progressive substitutes to orphanages and other youth institutions. By the 1980s, there were about 125,000 children in residential group care facilities around the country, a number that would nearly double by the end of the century, according to Martin Leichtman, a clinical psychologist who has researched the use of residential treatment.  

By then, these facilities had gained a reputation for warehousing children — in some cases abusing them. Disability advocates had begun to question the need to segregate children needing specialized care, and a growing number of advocates pointed out that there was scant evidence that it even worked. Meanwhile, alternatives to residential treatment, such as family therapy, began to emerge.

Across the United States, mental health systems began to focus on providing care for children that allowed them to stay at home. Now, there’s general consensus across the children’s mental health world that children develop best in families, according to Mickey Kramer, the state’s associate child advocate.

But the shift away from residential treatment didn’t happen overnight. By the mid-2000s, Connecticut was still relying “tremendously” on residential programs, Kramer said, adding that at the time, there were increasing concerns about the cost, efficacy and oversight.

“There was nobody keeping their eye on, ‘Are kids getting better or worse?’” Kramer said. 

In 2011, Connecticut’s Department of Children and Families announced a new set of standards that prohibited residential treatment for children aged six and younger in almost all cases and aimed to “dramatically reduce” out-of-home placements for older children.

“All children and youth in the State of Connecticut deserve the opportunity to grow up as members of a family, to succeed in school and to participate in their communities in a positive and characterbuilding way,” wrote DCF Commissioner Joette Katz. “Too many children and youth are not growing up with family and community ties.” 

Kids in programs out of state were brought back to Connecticut. Facilities closed and beds disappeared. In 2011, DCF reported placing 626 youth in residential treatment. Last year, 127 youth were admitted to residential treatment facilities, according to a report monitoring Connecticut’s Medicaid population. By 2018, according to a state report, there was just one residential treatment facility in Connecticut that catered specifically to children with developmental disabilities — children like Tearah. As of May 2019, the agency was providing funding for 14 children under the age of 18 to get residential treatment.

Wilson struggled to navigate this still shifting environment. In January 2017, after reaching out to multiple agencies, she was connected to Susan Shatney, a counselor at yet another agency — the Department of Rehabilitation Services.

“She says, ‘I don’t fully understand why you were directed to my office, because everything that you’re looking for and need for your daughter does not exist,” Wilson recalls Shatney telling her, “but I will help you try to figure out how to get it.’”

Tearah's little sister holding a photo of Tearah.
Tearah’s little sister holding a photo of Tearah.

In May, after more than two months of driving back and forth to Rhode Island, Wilson set up a phone call with several of the agencies involved in Tearah’s care, including the school district, DCF and Bradley Hospital.

The hospital took the lead, recommending that Tearah enter residential treatment until she was ready to transition back home. But DCF again declined to support residential treatment, saying the agency didn’t need to be involved.

On the phone call in May, Bradley suggested a plan B: a collection of services to support Tearah at home. But it would take time to put those resources in place, and until then, Tearah needed to stay at the hospital.

In an interview with FRONTLINE, DCF bureau chief of external affairs Ken Mysogland said there have been times when providers may not be aware of the many services DCF offers to treat children at home. 

“Systems are complex and dynamic, with services being added or removed in our communities without all service providers being aware of what is offered at any particular time,” he wrote in an email to FRONTLINE. 

Mental health professionals indicate the system encourages families and children to exhaust every option before turning to out-of-home treatment. But Cheryl Smith, COO at residential treatment provider The Children’s Center of Hamden, said sometimes there is a case for residential treatment earlier on.

“In Connecticut, a child has to ‘fail up’ the system in order to access this level of care, and by the time a kid gets to this level of care, it’s really difficult to engage them,” she said.  

Wilson is not the only parent in Connecticut to discover that getting a recommendation for residential treatment is not a guarantee of placement. 

Valerie Wyzykowski, program manager at Connecticut’s Office of the Healthcare Advocate, estimates that her office hears from families seeking residential treatment up to a handful of times a week, most of them on a doctor’s recommendation.

“They just don’t know how to get the child to the next step, because there’s no beds available or insurance won’t pay for it and the families can’t afford [it],” she said.

In 2018, a report monitoring Connecticut’s Medicaid population counted 16 youth delayed from leaving a Connecticut inpatient psychiatric facility because they needed residential treatment and had to wait for it.  

Bet Gailor, an attorney for Connecticut Legal Services, said she sees about 12 cases a year where families can’t get residential treatment despite a recommendation, but believes there are likely many more.  “There just aren’t enough beds,” she said.  

Two experts told FRONTLINE access to residential treatment effectively “doesn’t exist.” And some families have gotten the idea from DCF that residential isn’t available for their kid, according to a 2017 report from the office of the ombudsman. 

The DCF defended their placement decisions. “The perception that we don’t place in residential — that’s just not true,” Mysogland said.

The agency now has 310 youth in congregate care, an umbrella term for 24-hour care for children that includes residential treatment. Mysogland said that the system was always moving to adapt. And he said that DCF is moving to create a pathway for families seeking services that doesn’t necessitate calling the department’s abuse and neglect care line.

“We’ve listened to families, advocates, kids, providers and our own staff to understand that families may not necessarily outreach to access services if they have to call the agency that they believe is ultimately the one that investigates abuse and neglect,” he said.

Meanwhile, there have been changes at the national level as well. Last year’s congressional budget contained the Family First Prevention Services Act, which the National Conference of State Legislatures says has the potential to dramatically impact child welfare systems nationwide. The law aims to help children obtain treatment at home through funding for prevention services, and outlines new criteria for residential treatment programs to meet to be eligible for federal reimbursement.

But concerns persist that children with the most complex needs may be left underserved, said Sarah Eagan, the state’s child advocate.  

“How often is somebody recommended for something they can’t get?” she said. “There’s no way to answer that question.”

“Are there times when a child with … very extreme, unstable behaviors may need or benefit from round-the-clock, intensive treatment and staff support? Yes. But is a bed for that always available when needed? No.” 

The Wilson family was caught in the middle of that gap in specialized care. It took 184 days before Tearah was discharged to home.

Wilson had spent the days and weeks before her arrival setting up Tearah’s room and buying new clothes — she’d outgrown her old ones since her time in the hospital. She’d also planned a welcome-home party with dancing, pizza and cake. “What’s coming home without a party?” she asked. 

But she also worried about what else Tearah was coming home to: the Bradley plan, through which Tearah’s care providers aimed to create a residential-treatment setting at home.

“I fought until I couldn’t fight anymore,” Wilson said. “I did everything I could to provide the services I thought would be most helpful for Tearah at home. And in doing so there were holes still left.”

In a statement, DDS said that it worked with recommendations from clinicians to create in-home support in the “most integrated community setting” for Tearah. But Wilson felt the program was mainly designed for elderly people who needed extra help at home. Tearah needs many hours of in-home care, and interpreters who communicate in American Sign Language.

“They put Tearah into a program that wasn’t designed for her, and we had to build around that,” she said.

Tearah is now 18. According to DDS, the agency has been working with Tearah for the past two years to provide continued in-home support, including funding for ASL interpreters that were in place as of last month.

There are still moments when Tearah breaks down, but Wilson has been working hard to help her manage her emotions, recently breaking off an interview to help Tearah practice a deep-breathing exercise. Wilson sees her job as preparing her to navigate the world on her own. 

“Tearah is going to be productive. Tearah is going to work. She’s going to be able to be independent,” she said. 

“But it’s my responsibility as her mother to make her feel safe and let her know we will get through this together.”

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