JOHNSTON, R.I. — With every day that passes, Kerri and Richard Cassino see their daughter’s childhood slip away, as she languishes at a hospital out of reach.
Ava turned 12 in January at Bradley Hospital, the acute-care psychiatric children’s hospital in East Providence where she has lived for nearly a year. Her parents say she shouldn’t be there, but there’s no step-down program for her behavioral needs and no support services for her if she comes home.
She has nonverbal autism and a tendency to hurt herself out of frustration of not being understood. She doesn’t sleep and spirals out of control. Her life has already been a carousel of medications, various therapies and programs, from early intervention to placements in hospitals in and out of Rhode Island.
Now, the fragile system for children and adults with disabilities has collapsed under the strain of the pandemic-driven staffing crisis. And Ava is just one of many who are falling through the safety net.
She should have come home on June 30, after three and a half months, but none of the home-based services had any workers available to help Ava, who needs 24-hour care, her mother said. Even when her parents found someone and the hospital prepared to discharge Ava, her needs changed, and the hospital wouldn’t adapt her care, her mother said.
Even though Ava is nonverbal, she seemed to know that she was supposed to go home, and when she didn’t, she had severe breakdowns. Her mother said it took six people to hold down Ava’s barely 5-foot frame.
The “Welcome Back Home Ava” sign remains on her bed.
‘FRIGHTENING’ WAIT FOR SERVICES
Until this latest hospital stay, Ava had been making progress. She had learned how to count to 10. She could say her name and her birthday. Her parents discovered that she loved to sing and be tickled.
As she’s grown older, her disability and needs have become more profound — and without anyone available for home-based care, or enough mental-health residential programs for girls in Rhode Island, the psychiatric hospital became the last resort.
Ava has been isolated from her family off-and-on during the pandemic. Without consistent access to a tutor at Bradley, her gains in education have slid backward. Now, she is receiving electroconvulsive therapy every two weeks to relieve her depression and anxiety. She wears a padded helmet to protect her from hurting herself, but is sometimes assaulted by other children. Without anyone helping her to the toilet, the preteen girl needs to wear a diaper.
Ava’s institutionalized days pass in a monotonous blur, at a place where children aren’t meant to remain. But there is a waiting list for services in Rhode Island, and nowhere for her to go. There are children who’ve been waiting to leave hospitals even longer than Ava. Some are even held at the Training School in Cranston, a correctional facility for juveniles who are detained or serving a sentence — even though the children with disabilities haven’t committed any crimes.
Her parents want to bring Ava home, if they can find someone to help them care for her. They don’t want her to go into a group home or residential program because she is still so young — and the only options are far out of state. That is, if there are any available beds in a place that could help Ava.
“I know it happens in other places, but it hits home when it’s your daughter,” Kerri Cassino told the Globe. “I’m helpless. … I just feel like Rhode Island has failed.”
It’s not like state officials and politicians don’t know there’s a problem. During the last several months, everyone from the state child advocate to the Family Court chief judge, to service providers, advocates, and top officials at the departments of Children, Youth, and Families, and Behavioral Healthcare, Developmental Disabilities and Hospitals have starkly told state legislators that Rhode Island’s most vulnerable children and adults are in crisis.
At a recent hearing at the Senate Committee on Rules, Government Ethics, and Oversight to address the waiting list associated with developmental disabilities, behavioral health, and child welfare, state officials at DCYF and BHDD admitted that the staff vacancies and turnover at home-based and congregate care programs — an increase of 91 percent since the pandemic began — had created “frightening” waits of months and years for services.
Senator Stephen R. Archambault said he was frustrated by referring to the problem as a “waiting list.” “These are children who are not where they are supposed to be, to heal and get the care they need,” he said. “These are children, [who] become more unstable. ... It’s a systemic failure. It’s a shame. It’s a travesty.”
When pressed by Chairman Louis DiPalma, the officials at DCYF and BHDD said they weren’t sure if the Centers for Medicare and Medicaid Services even allows a waiting list.
Advocates were clear, however.
Calling the waiting list “a symptom of a broken system,” Laurie-Marie Pisciotta, the executive Director of the Mental Health Association of Rhode Island, told the senators that states have a legal obligation to make sure people with disabilities can live and work and receive services in the least restrictive setting.
Rhode Island is one of seven states that does not have an Olmstead Plan, which came from a 1999 U.S. Supreme Court ruling that states have a legal obligation to ensure that people with disabilities can live, work and receive services in the least restrictive setting allowed by their disabilities.
TREATMENT FACILITIES, HIGHER WAGES PROPOSED
Rhode Island has “too few” outpatient programs for stepdown care, no psychiatric nursing homes, no psychiatric residential treatment placements for girls, who are referred to out of state facilities, Pisciotta said.
“And we violate [the Americans with Disabilities Act] rights when they spend months or years in hospitals because there are no group homes, and our failure to provide them with adequate housing causes them to be homeless and incarcerated,” Pisciotta said.
DCYF operates a psychiatric residential treatment facility for girls in collaboration with St. Mary’s Home for Children, but it’s not enough; most girls are referred to out of state facilities, according to DCYF. Last fall, Family Court Chief Judge Michael B. Forte told legislators the state was risking a sex-discrimination lawsuit.
“The crisis is real … and escalating at a significant pace,” Tina Spears, the executive director of the Community Provider Network of Rhode Island told the senators. “There’s no need for studies, we simply need action.”
The lengthy wait for services that never come was already having an impact on children with autism and behavioral needs, said Spears, who represents the nonprofit trade association of private providers of services to people with developmental disabilities and intellectual disabilities
Left waiting for treatment, children and adults with autism and behavioral needs will “escalate” and end up in hospitals, or incarcerated, or homeless, the advocates said.
Rhode Island KIDS COUNT executive director Elizabeth Burke Bryant listed the providers across the state who’ve had to scale back services or even close programs because of vacancies. She begged the Senate Oversight Committee to consider applying funds to stabilize community-based services for children and end the waiting lists.
In October, Governor Daniel J. McKee proposed spending $12.5 million in “workforce stabilization payments to the staff of the service provider organizations contracted by the DCYF.”
Last month, McKee unveiled a budget proposal that includes $6 million to establish one or more psychiatric residential treatment facilities. Rhode Island doesn’t have intensive residential treatment options for adolescent girls and young women with severe and complex behavioral health needs. The proposal also includes raising the starting wages for direct support professionals to $18 an hour.
The proposals don’t go far enough, said State Child Advocate Jennifer Griffith, who warned that Rhode Island is risking a lawsuit because children and adults with disabilities unable to find services in the state.
“I cannot express the urgency. I just feel at this point it’s a liability, it’s simply unacceptable,” she told the senators. “These are children of Rhode Island. These are someone else’s child and could be our child who needs help.”
Later, Griffith said, “It’s the inability or failure to act that’s troubling me the most.”
A SYSTEM ‘IMPOSSIBLE TO NAVIGATE’
Last week, Kerri Cassino contacted McKee’s office and was brushed back to state legislators. She emailed all members of the General Assembly, pleading with them to help her daughter and others like her.
“I’m doing this to advocate for my daughter and I’m advocating for what they call the ‘throwaway kids,’” she said. “This is something no parent should be going through.”
She wants state leaders to address higher pay ranges for the people providing the services for children and adults with disabilities, to help attract and maintain staffing. She’d like to see teaching hospitals require new doctors to work in the fields of behavioral services before they graduate. Rhode Island needs an education ombudsman to make sure all children have access to an education and protects children with special needs to make sure they are receiving the entitlements, she said. Legislation for the ombudsman is expected to be introduced this session.
“Why has Rhode Island allowed this to happen for so many years and done nothing?” Kerri Cassino wrote in her email to legislators. “Why did Rhode Island look away so many years and pretend nothing is wrong with mental health system and do nothing to fix it. ... The adult special needs system is impossible to navigate, and now as adults, they have to qualify for services that are not there?”
DiPalma, chairman of the Senate Committee on Oversight, was one of the few to respond to her.
The Cassinos resist just grabbing Ava out of the hospital and taking their chances, on their own, but they know it wouldn’t be safe for her without services. So, they visit her at the hospital, not knowing when she will be home.
“Ava still remains brave and happy through all this,” Kerri Cassino said. “It breaks our heart when we leave her.”
Her parents have been Ava’s voice. Now they know what it’s like not to be heard.
Amanda Milkovits can be reached at firstname.lastname@example.org. Follow her on Twitter @AmandaMilkovits.