Institutionalized in R.I.: A thousand nights stuck in a system that fails kids

Despite repeated efforts to care for Rachel at home, her mother said, she always ended up back at Bradley, the only pediatric psychiatric hospital in Rhode Island.

“She essentially lived there,” Mary McDonough said in an interview with Globe Rhode Island and Rhode Island PBS. “She was there more than she was home.”

The McDonoughs have calculated that Rachel spent more than 1,000 nights at Bradley from 2017 to 2022, often staying for 6 to 9 months at a time.

Rachel is one of hundreds of children who have languished there since 2017, according to the US Department of Justice, which found that the Department of Children, Youth and Families illegally warehoused children at the psychiatric hospital. And the hospital president, Dr. Henry Sachs, said the issue dates back even further than the federal investigation.

“This has been an issue intermittently for many years,” Sachs told the Globe in an interview. “At least 10 years.”

The federal investigation puts a bigger spotlight on a problem that advocates say they have been shouting from the rooftops for years: There are not enough foster care families, community-based services, and mental health supports for children in Rhode Island. And children in the DCYF system are suffering because of it.

“No one is surprised, because this has been an issue that’s been pervasive in our system for some time,” said Katelyn Medeiros, Rhode Island’s Child Advocate. “What I’m hoping is that the difference here is that we’re going to start to see sweeping, systemic change.”

The DOJ has not blamed Bradley for the problem, placing responsibility squarely on state officials for failing to find adequate placements for children who are ready to be discharged from the hospital.

State officials are now scrambling to solve a problem they’ve acknowledged is real and have also attributed to “nationwide mental health staffing challenges.” If an agreement isn’t reached with the Department of Justice, the case will land in court.

Rachel McDonough had developmental disabilities from birth and exhibited signs of behavioral issues in preschool, where she pinched other children, her mother said. The first time she was suspended from school, she was just 3.

At 6, Rachel was diagnosed with autism. She was tough to diagnose because she was talkative, social, and funny, not presenting like a typical autism case, McDonough said. In classrooms with nonverbal autistic students, she got frustrated by her peers’ lack of ability to communicate with her, and lashed out.

“As the years went on, she became very aggressive,” McDonough said. “She was doing a lot of self-injury, head banging, biting herself.”

When she was really in a rage, she lifted a heavy wooden table and threw it. “She seemed to have this strength that was incredible,” McDonough said. Her parents realized they could not keep her safe from herself, or from harming them.

That was how Rachel, at age 9, ended up in Bradley Hospital for the first time in 2017. Her mother noticed a sign in the lobby that said to expect a stay of seven to 10 days.

Instead, Rachel stayed for months. It was difficult to find an appropriate placement for her outside the hospital, and in-home services were scarce. Each time she came home, the McDonoughs struggled.

“It didn’t seem like anything was working for her,” McDonough said. “And we tried. We tried to keep her home. We did it for as long as we can, but as she got bigger, she was throwing me against the wall and she was pushing me onto the floor.”

Over and over again, Rachel landed in the emergency room at Hasbro Children’s Hospital. From there, she would go back to Bradley.

At the hospital, Rachel’s education suffered. The Providence Public School District was required to educate her, but the tutor they sent for a few hours a week was not enough, her mother said.

She was barred from accessing a classroom that was set up at the hospital following a 2020 WPRI investigation into the lack of schooling for patients, because the teacher was not a member of the Providence Teachers Union. (The district has since changed its policy, according to PPSD, and the 21 patients from Providence currently at Bradley have access to non-Providence teachers.)

Eventually, the McDonoughs made an excruciating decision: to find a residential treatment facility for Rachel. While it meant institutionalizing her for longer, it was better than living at a hospital for years on end.

But finding a facility proved difficult. There are few options in Rhode Island, especially since DCYF has stopped sending children to St. Mary’s Home for Children in North Providence after an investigation found neglect, abuse, and mismanagement at the facility. St. Mary’s was a top location for children discharged from Bradley.

It took a year to get Rachel into the Judge Rotenberg Center in Canton, Mass. She spent almost all of that time languishing at Bradley, just waiting to be discharged.

“The state of Rhode Island has failed her miserably,” McDonough said. “Has failed our whole family.”

The warehousing of children at Bradley is an “appalling failure” by state officials, according to Rhode Island’s US Attorney Zachary Cunha, who has accused the state of violating the civil rights of children who spent months — or even years — at the hospital.

The Americans with Disabilities Act and a 1999 Supreme Court decision known as Olmstead require that people with disabilities be placed in the least restrictive setting possible. The psychiatric hospital is meant for short-term stabilization, after which children can move to less-restrictive facilities, or go home and access outpatient therapies or in-home services.

But from 2017 to 2022, DCYF failed to find less-restrictive options and left 527 children at the hospital and segregated from the community well beyond the acceptable time frame, Cunha alleged in an 18-page letter to Governor Dan McKee and DCYF Director Ashley Deckert on May 13.

“The idea that instead of living the normal life of a kid, you’re in a locked room in a psychiatric hospital, the potential consequences of that are terrible,” Cunha said in an interview.

In a two-paragraph letter responding to Cunha’s office on May 22, Deckert said, “Ensuring the safety and well-being of Rhode Island’s children is DCYF’s top priority,” while also blaming the issue on “nationwide mental health staffing challenges.” She pledged to cooperate with the DOJ to address the findings from their investigation.

Both Deckert and McKee declined to speak to the Globe and Rhode Island PBS about how they will address the crisis.

“DCYF and the Department of Justice are currently engaged in confidential discussions concerning the DOJ investigation; it would be premature to characterize any next steps,” McKee spokesperson Laura Hart said.

Cunha confirmed the McKee administration is in talks with the DOJ. If an agreement isn’t reached, he said the federal government will file a lawsuit.

“The goal here is to get these kids the care they need, not to wind up in court for many years, but we’re going to see where these discussions go,” Cunha said. “If the state needs to revise how it conducts these programs structurally, if it needs to revisit how it does discharge planning, whatever the cause — the state needs to fix it.”

Cunha does not place blame on Bradley Hospital, crediting the doctors there for raising the alarm about the children who needed to be discharged.

Indeed, Sachs told the Globe, the hospital “repeatedly” contacted DCYF and the Office of the Child Advocate, the DCYF watchdog agency, to alert the officials to the problem. But state officials failed in their discharge planning, the federal officials allege.

“If we discharge them, we discharge them to the street or to an emergency shelter,” Sachs said, explaining why the hospital cannot discharge children that are considered ready to go. “DCYF would have to come pick them up, and they literally have nowhere to put them.”

Bradley, which is owned by Lifespan, has responded by opening its own residential center, group homes, and outpatient programs over the years, all of which are options for DCYF children discharged from the hospital.

Residential facilities where the children might be sent — widely considered to be a last resort — are in short supply. Medeiros, the state Child Advocate, said there has been a push for years to reduce reliance on such facilities, but without the corresponding investments in community-based services that would allow children to safely live at home or with foster families.

“We saw a push for downsizing congregate care, but without necessarily building up other parts of our service array,” Medeiros said.

Morna Murray, the executive director of Disability Rights Rhode Island, argues institutional settings are almost never the right answer.

“These kinds of residential settings are harmful for children,” Murray said, pointing to the issues at St. Mary’s as an example. “Far from being an answer, they actually exacerbate distress and other behavioral health challenges that children are experiencing.”

But with options dwindling, state officials have routinely sent children in DCYF care to facilities out of state. There are currently 76 children placed as far away as Alabama, Idaho, and Tennessee, according to a list of facilities provided to the Globe. The most expensive placement costs the state $1,650 per day.

Two years ago, state lawmakers approved $45 million to build a new 16-bed residential facility for girls in Exeter. Construction is set to begin this summer.

“We would advocate for taking ... a significant portion of the money that’s going towards residential beds and putting that towards community services,” Murray said. “They are a fraction of what residential care costs.”

Cunha also said the issue is not about constructing more beds.

“The problem is, you’re keeping kids who do not need to be in an institutional hospital setting in that setting,” Cunha said. “Adding more beds so that you can long-term institutionalize more kids who can be adequately cared for in the community, that’s not the solution. That’s exacerbating the size of the problem.”

One of the community-based options for children ready to leave Bradley is therapeutic foster care, where foster parents are trained and given supports to care for children with special needs.

But the state cut the top rates paid to those families in 2020, according to the DOJ.

“Because the change in reimbursement policy no longer incentivized placements of children with intense behavioral health support needs, providers reported losing half of their available [therapeutic foster care] parents,” Cunha wrote in the letter outlining the DOJ’s findings.

“Of course, we’re outraged by that, and we can’t understand that,” Murray said. “At the same time, state governments are constantly robbing Peter to pay Paul.”

Asked for an explanation about why the rates were cut, DCYF spokesperson Damaris Teixeira said the rates were made more “equitable” by basing them on the level of need of the child, ranked from 1 to 5. While this resulted in a rate cut for some new foster families, others received an increase, she said.

Overall, the highest possible rate dropped from $89 per day before the change, to $77 for a level 5 child today, according to DCYF. (On the low end, foster families with a level 1 or 2 child are paid as little as $28.32 per day.)

“We have said for years that foster parents need to be truly valued,” said Tanja Kubas-Meyer, the executive director of the R.I. Coalition for Children and Families, which represents foster care agencies. “And compensated and supported as though they’re valued as front-line caregivers.”

Advocates have been pushing for change at the State House long before the DOJ’s investigation. But multiple bills have failed to make it to the governor’s desk, including one to require a plan for the state to comply with the 1999 Olmstead decision that the DOJ says Rhode Island is violating. Only seven states, including Rhode Island, don’t have an Olmstead plan or published strategy.

Another bill would have required DCYF to conduct a needs assessment in order to get a better sense of how many and which types of mental health providers are needed.

Both measures passed the Senate this year, but not the House.

“While we declined to pass legislation establishing different oversight and advisory structures, those options remain open to us as we monitor progress,” House spokesperson Larry Berman said. He pointed out that the needs assessment is funded in the budget, though it is not a requirement, giving DCYF the flexibility to focus on addressing the DOJ’s concerns.

Kerri White, a spokesperson for Rhode Island’s health and human services agency, said the McKee administration is working on an Olmstead plan, which has been in progress since 2020. The plan is expected to be done in March 2025 and will cost $850,000.

The state budget approved by lawmakers this month also includes $37 million in additional funds for DCYF, including for foster care and workforce development, though it’s ultimately up to the agency to decide how to spend it.

Medeiros said she’s hopeful that change is coming, though she cautioned that it wouldn’t be quick.

“This did not just happen overnight,” Medeiros said. “The solution is not going to happen overnight.”

“I’m worried about the speed,” Sachs said. “One of our biggest concerns is that there isn’t an awful lot of childhood behavioral expertise in state government.”

Sachs said while state officials work on ensuring children are getting the right treatments, they also need to invest in interventions to prevent children from needing inpatient psychiatric care in the first place.

McDonough hopes the new DCYF funding is put toward home-based services, so children can live with their families while getting the care they need. While Rachel is doing well at the facility in Canton — including finally getting an education — the McDonoughs can only visit their daughter twice a week for 30 minutes.

They have no idea how old she will be by the time she can come home. They dream of her living quasi-independently in their home, attending college classes someday, and having a job. Rachel wants to be a veterinarian.

“We want her home,” McDonough said. “And we need help for that. We just need help.”

Steph Machado can be reached at steph.machado@globe.com. Follow her @StephMachado.