Institutionalizing her son was the only option; Now she’s fighting to bring him home

On his 330th day in the hospital, Charlie Edgmon repeats a well-worn refrain to his mother Carmin. I just want to go home.

“We hear you, babe,” she replies. She wants him home, too.

Charlie, 18, is dressed in a rust-red scrub shirt identical to the one he wore when he was admitted to Seattle Children’s in June 2021. He struggles to recall what hobbies he enjoyed before he arrived here. To perceive time, he keeps a calendar that reminds him of meetings with his therapist or calls with his mom. But every moment is infinite when they’re all the same.

“It just is forever to him,” Carmin says.

Institutionalizing Charlie was never Carmin Edgmon’s plan. But for years, she and her son have been locked in a cruel and dangerous cycle. Violent outbursts at home — Charlie once smashed out windows in the family home, and he regularly threatens to kill people and himself — usually lead to a visit by police, to the ER, or to juvenile detention. Charlie is always sent back to his home in Covington, without any new help to change the pattern.

When Charlie threatened to hit Carmin with a rock last summer, she reached a breaking point. Charlie couldn’t come home, she decided, until there was a plan to keep their family safe. He’s lived inside a locked stabilization unit at Seattle Children’s ever since.

While many Washington youths are living inside hospitals waiting for an inpatient psychiatric bed, as The Seattle Times has reported, Charlie’s situation illustrates how hospitals have also become a warehouse for young people whose families believe they can and should live at home with proper support.

Clinical staff say Charlie’s been ready to discharge for months. But for at least a year the family has struggled to access something, anything, that would help him manage life at home. The kind of services that could make that happen — help with hygiene, behavior supports, anger management, a crisis response team, volunteer opportunities to give him a sense of self-worth — weren’t made available by several state agencies, Carmin said. Eventually, Carmin says, she was told by state agencies that sending Charlie to a residential psychiatric facility — likely out of state — was her only choice.

“I’m a horrible parent,” she thought. “I’ve got to send my kid away to help him?”

Then, she learned that Charlie and thousands of young Washingtonians like him have a legal right to care that helps them live safely at home and out of an institution. A class-action lawsuit, settled nearly a decade ago, determined the state is legally compelled to create a system of support for youths up to age 21.

But Charlie’s experience raises new and serious doubts about how well Washington is living up to its promise. His case, which is detailed in a new federal lawsuit filed in March against the state, also illustrates the extreme lengths to which families go to guarantee rights that are already firmly enshrined in state law.

“It’s never a good sign if it takes a federal lawsuit for an individual to get services that exist on paper,” said Susan Kas, an attorney with Disability Rights Washington who is representing Charlie and was involved in the original class-action suit. “I think that’s a really good question for the people in the system … why did you have to get sued to do this?”

The program created to meet the terms of the settlement is called Wraparound with Intensive Services, or WISe. It was supposed to create access to outpatient services no matter where youth are first identified as needing help — whether that’s the child welfare system, the juvenile justice system, or the medical system.

The state and federal government together invest more than $120 million a year — or about $3,500 per youth per month — in WISe, which serves youth ages 0 to 20 who qualify for Apple Health. Last fall, after years of judicial monitoring to ensure the state did what it was supposed to do, a district court judge agreed with the parties and ruled that the state had finally met the terms of the settlement.

But experts who initially advised on WISe say the state took shortcuts that hollowed out the range — and intensity — of support it’s supposed to offer. A recent independent review, for example, found that WISe care coordinators meet face-to-face with each family for less than an hour per month, on average. The review also cited concerns about “rapid staff turnover,” delays in treatment and inconsistencies in the way WISe staff are trained.

State data suggests the program is doing a particularly poor job of serving the most vulnerable youth, with the most severe mental health conditions, while focusing instead on easier-to-manage cases.

“It was even worse than I feared,” said Eric Bruns, professor of psychiatry and behavioral sciences at the University of Washington School of Medicine, and a former WISe adviser, said of the review. In 2015, Bruns wrote a letter to the state warning of several problems with the program, including a lack of high-quality services, engagement with families, and training. Bruns, who directs two national children’s care coordination centers, stopped advising Washington government officials, he said, “when the state signaled that certain of those recommendations were not going to be part of the way that WISe operated.”

Others are more blunt.

“It’s a total mess,” said Tyler Sasser, an attending clinical psychologist in the psychiatry and behavioral medicine department at Seattle Children’s. He regularly refers patients to WISe as a matter of practice, but “What’s actually needed is not available. It’s not even offered,” he said, noting that evidence-based services like parent training aren’t accessible through WISe. And persuading families to stay enrolled in WISe can be difficult, he said, because they get frustrated by the lack of services. The cost, he says, is that families “spiral deeper and deeper.”

WISe served just over 6,100 youth last year, state data shows, and by certain measures, the program appears to help many of those who are enrolled. But not everyone who wants services has them: the state served below its target number of 3,345 youth per month during every month of 2021. And as of June, at least 518 Washington youth were waiting to get into the program.

Government officials acknowledge the program has shortcomings, and note that it’s difficult to attract and keep mental health providers, who are in drastically short supply across the state’s mental health system. Families might wait three or more months to get enrolled, officials say.

But even then, they’re not guaranteed access to the kind of care they need.

Charlie’s family, who enrolled in WISe nearly three years ago, is still waiting.

“I just miss home”

Charlie was born with a genetic condition that’s caused him to develop several brain tumors over his short life span. He’s also prone to severe seizures and has undergone a life-altering surgery — a functional hemispherectomy that separated one side of his brain from the other — to stop them.

He’s lost muscle mass in his face, which gives him a smirky smile that Carmin finds cute. And he walks with an uneven gait, which Carmin affectionately calls “his penguin.” He also has low cognitive abilities. While he’s incredibly close with his mother, a single mom with two other twin children, he’s acted out violently toward her during moments of rage.

At Seattle Children’s, he’s taken the antipsychotic risperidone and is often lethargic and confused. He’s been there so long, his therapist Ivyanne Smith says, that his aggression is waning as his mood slips toward despair.

“I hear him every day crying to his mom or crying to me saying, ‘I just miss home. I want to go home, it’s been too long,’” Smith said.

Recently, Smith started taking Charlie on walks to the hospital cafeteria or an outside courtyard to show him scenes of life outside the four walls of his inpatient room. He needs practice interacting in the real world, she says, before he goes home. But the hospital won’t discharge him until he’s guaranteed proper outpatient care, which in her opinion, should include a full-time therapist and a crisis response team on standby, ready to step in during an emergency.

State agencies only started talking seriously about finding outpatient care, Carmin said, after Charlie became the subject of the federal lawsuit filed in March. The suit names the Washington State Health Care Authority, Charlie’s public health insurance Coordinated Care of Washington and Sound Health as defendants; HCA and Sound Health declined to comment on Charlie’s case, citing the pending litigation. Coordinated Care did not respond to requests for comment.

When Charlie first became enrolled in WISe, the suit alleges, his WISe provider Sound Health didn’t follow standard protocol: The agency didn’t evaluate him for services, arrange for an evidence-based therapy he needs called Applied Behavior Analysis, secure an in-home caregiver to help Charlie bathe or offer access to 24/7 crisis care. When Charlie’s behavior became explosive, the lawsuit alleges, Carmin was forced to call the police because no one from Sound Health showed up when she called.

“Instead, defendants discussed seeking out-of-home group homes and institutions,” the lawsuit reads. “When all local providers declined his referrals, defendants began discussing a search for an out-of-state facility.”

Had Charlie been offered outpatient care early on, it’s less likely his family would have reached the crisis point that caused his hospitalization, said Carmin’s former attorney Lindy MacMillan, of the Northwest Justice Project.

And once he was at Children’s, “It was never laid out for [Carmin] that there are legal entitlements that Charlie has that would allow him to come home, and come home safely,” she says.

“That’s the big civil rights issue that’s raised in Charlie’s case.”

“Fundamental flaw”

More than a decade ago, attorney Patrick Gardner helped win the original class-action suit guaranteeing services for Washington families like Charlie’s.

Gardner had won similar cases in other states that were missing a key piece in their youth mental health system: intensive outpatient care that would keep kids from living in hospitals and institutions.

Those precedents would make it tough for Washington to win in court, so in 2011, Washington’s case — the T.R. lawsuit, as it’s known — went to settlement negotiations that resulted in the creation of WISe.

Since then, state data shows, more than 15,200 Washington youths have received care through WISe. Youth enrolled in WISe for at least six months show improvement across lots of metrics, such as their propensity to self-harm, have anxiety or other mood disorders, and face family stress or problems in school. For instance, about 79% of youths who first enter the program have emotional control problems, but six months later, that number drops to 57%.

“This does really work,” when it’s done right and there are enough resources, Gardner said.

But a closer look at nearly a decade’s worth of state data reveals a system of care that’s struggling to keep up with an increasing demand for services, Gardner and others say. A recent quarterly report, for instance, shows the number of young people served each month gradually declined more than 10% from March to December 2021.

“At a time when the need is greatest during the COVID disaster, their capacity is actually declining, which is inexcusable,” Gardner said.

The program may overserve kids with less-complex needs — and underserve those with complex issues who often need the most help or are traditionally harder to treat, such as older youth and those experiencing a range of serious concerns such as psychosis, bipolar disorder and substance use disorders.

Using Medicaid data that approximates youth demographics and health conditions, the state projected that of all young people who may need WISe, about 23% would be 18-20 years old. But in practice, this age group makes up only 3.1% of WISe enrollees; meanwhile, about 40% of youngsters in the program are ages 5-11, twice as many as projected.

Similarly, about half of the state’s children with bipolar disorder who might need WISe are likely missing out on services, the state data shows. And the program serves a disproportionately high number of those with mental health conditions that are sometimes less severe, such as anxiety, ADHD and impulse control problems; Sasser notes that it’s likely some kids with ADHD have multiple diagnoses, however, which would make their treatment plan more complex.

Those ages 18-20 are harder to attract into WISe because they have more rights over their own care, and they may not want to be told what to do, said Tina Burrell, a Health Care Authority acting supervisor who has been involved in implementing WISe since 2014. Burrell said HCA is now paying a youth peer to do outreach to this age group.

HCA officials caution that there are complicated factors behind the numbers: For example, certain conditions like bipolar are being categorized differently now, compared to when the state created its original estimate.

But Gardner sees these discrepancies as a form of cherry-picking kids who are easier to serve, “and the result is you don’t necessarily get to the kids who are like the young person who is now stuck in the hospital,” he said, referring to Charlie.

“It’s a fundamental flaw,” he added.

At least one other state, Maine, could face serious legal consequences for similar shortcomings. On June 22, the civil rights division of the U.S. Department of Justice unveiled details of an investigation of Maine’s pediatric mental health system, finding the state had violated the Americans with Disabilities Act. Similar to Washington, hundreds of Maine children who are eligible for outpatient or community-based care are instead living away from their families in hospitals and other residential treatment settings.

As Charlie passes one year locked inside Seattle Children’s, he has missed every holiday, celebrating his 18th birthday, and his high school graduation. Every week, his mom still joins a Zoom call with upward of 40 people from various state agencies, medical providers — and lots of lawyers — to talk, and talk and talk about what’s next.

A couple of days each week, a caretaker from an outpatient provider called Good Intentions visits his hospital room to work with him on behavior. Carmin sees this new service as a small win.

But the fight’s not over, she said, until Charlie comes home.