Young people with severe autism languish in U.S. hospitals

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals in the United States, sometimes sedated, restrained or confined to mesh-tented beds, a Kaiser Health News investigation shows.

These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help, according to more than two dozen interviews with parents, advocates and physicians in states from Maine to California.

There, they wait for beds in specialized programs that focus on treating people with autism and other developmental disabilities, or they return home once families recover from the crisis or find additional support.

Ben Cohen, age 16, spent 304 days in the ER of Erie County Medical Center in Buffalo, New York. His room was retrofitted so the staff could view him through a windowpane and pass a tray of food through a slot in a locked door. His mother, who felt it wasn’t safe to take him home, worried that staff “were all afraid of him … [and] not trained on his type of aggressive behaviors.”

The hospital “is the incredibly wrong place for these individuals to go in the beginning,” says Michael Cummings, the Buffalo facility’s associate medical director and a psychiatrist who worked on Ben’s case. “It’s a balancing act of trying to do the … least harm in a setting that is not meant for this situation.”

Nationally, the number of people with an autism diagnosis who were seen in hospital ERs nearly doubled from 81,628 in 2009 to 159,517 five years later, according to the latest available data from the federal Agency for Healthcare Research and Quality. The number admitted also soared, from 13,903 in 2009 to 26,811 in 2014.

That same year, California’s state health-planning and development department recorded acute-care hospital stays of at least a month for 60 cases of individuals with an autism diagnosis. The longest were 211 and 333 days.

Dwindling resources:

The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the shortcomings of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that dwindled long ago, and then came the Great Recession of 2008, when local, state and federal budget woes forced sharp cuts in developmental and mental health services.

“As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental health needs in children and adolescents with autism,” says Aaron Nayfack, a developmental pediatrician at Sutter Health’s Palo Alto Medical Foundation in California, who has researched the rise in lengthy hospitalizations. “And we have nowhere near the resources in most communities to take care of these children in home settings.”

So, families struggle — with waiting lists for programs, low pay for government-supported in-home help and backlogged or ineffective crisis support. Often they’ve faced some of these challenges for years. Autism is a neurodevelopmental condition typically diagnosed at a young age and characterized by impaired communication, difficulty with social interaction and repetitive behaviors that fall along a spectrum of mild to severe.

Adolescents and young adults with severe autism may still have the mental age of a child, and short-term care to stabilize those in crisis who are nonverbal or combative is practically nonexistent. Longer-term care can be almost as hard to find. It must be highly specialized, usually involving intensive behavioral therapy; someone with severe autism gets little benefit from traditional psychiatric services.

General hospitals “are not really equipped to handle someone who is autistic,” says Mark De Antonio, director of adolescent inpatient services at Resnick Neuropsychiatric Hospital in Los Angeles. Several times a month, he hears about patients with no immediate care options being medicated and sedated as they’re held. “It’s a huge problem.”

Frozen out:

In New Hampshire this summer, 22-year-old Alex Sanok spent a month in Exeter Hospital after he became violent at home, breaking windows and hurling objects at walls. His mother called 911, and paramedics spent half an hour trying to calm him before restraining him.

At the hospital, his wrists and ankles were strapped to an ER bed for the first week, and he spent several more weeks in a private room before he could be transferred, according to his mother, Ann Sanok. State agencies that handle developmental disabilities and mental health offered little help, she says.

As the days passed, she and her husband wondered: “What if [Alex] escalates again, what are we going to do? We were getting no answers. Everyone seemed to kick the can down the road.”

Exeter Hospital said in a statement that its policy is not to use restraints unless there is an “imminent threat to patient or staff safety” and that any use is reviewed hourly. Sanok was moved in June to a special-needs residential school in Massachusetts, where his mother says he is doing well.

The federal government does no routine tracking of how autism is treated in ERs, but many experts say the problem of lengthy and inappropriate stays is nationwide and growing. Kaiser Health News identified some of the more extreme cases through interviews with autism and disability advocates, physicians and families in California, New Hampshire, New York and six other states: Arizona, Connecticut, Maine, Maryland, Michigan and Rhode Island.

Nancy Pineles, a managing attorney with the nonprofit group Disability Rights Maryland, says a group home took one young adult to a Baltimore ER earlier this year after he hit a staff member. And that’s where he remained for several weeks before the hospital moved him to a room in its hospice wing, she says — not because he was dying, but because there was nowhere else for him to go.

Such cases have been “on the increase,” Pineles says. “People with autism and more intense behavioral needs are just being frozen out.”

In Connecticut, the head of the state’s Office of the Child Advocate told lawmakers during a hearing on disability issues in May that the problem had reached a “crisis” level.

Lengthy stays:

Private-insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that young people ages 12 to 21 with autism are four times more likely to go to the emergency room than peers without autism. Once there, they are three and a half times more likely to be admitted to a hospital floor — at which point they stay in the hospital nearly 30 percent longer.

The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits for a mental health crisis almost doubled from 2005 to 2013.

“You’re looking at an increase in unmet need,” says Nayfack, who with Stanford University colleagues documented a similar trend from 1999 to 2009 in hospital admissions for young Californians with autism. By contrast, they found, hospitalization rates held steady during that decade for children and teens with Down syndrome, cerebral palsy and other diagnoses.

Tyler Stolz, a 26-year-old woman with autism and a seizure disorder, was stabilized after a few weeks in a Sacramento hospital, yet she remained there 10 months, according to Disability Rights California, an advocacy group that described her case in its 2015 annual report.

Ultimately, Mercy San Juan Medical Center went to court to demand that Stolz’s public guardian move her. The court filing noted that Stolz “previously harmed hospital staff” and that “a security officer is posted to the patient’s room 24/7.”

Although her conditions no longer required her hospitalization, they still “represent dangers to defendant and possibly to others if she were discharged to the community,” the facility contended. “There is no safe place for the client to go.”

The advocacy nonprofit helped place Stolz at a Northern California center that offers intensive behavioral therapy, says Katie Hornberger, its director of clients’ rights. The medical center did not respond to a request for comment, but two years after an investigator found Stolz in a bed covered by a mesh tent, the case remains vivid in Hornberger’s mind.

“I don’t believe we put people in cages,” she says.

New York stands out:

Some of the longest hospital stays in the nation, averaging 16.5 days, occur in New York state.

James Cordone, 11, spent seven weeks in a Buffalo, New York, children’s hospital in a tent-like bed, with a hospital receptionist or instrument sterilization tech in his room at all times, his mother says. The difficulty families like hers face is “the dirty little secret no one wants to talk about.”

Debbie Cordone of Cheektowaga, New York, was a retired police dispatcher who had raised her own children when she and her husband adopted James as a toddler. Diagnosed with autism at 3, James was a boy with a bright smile who loved to cuddle, she says. At 8 and a half, James began to grow combative. To ward off injury, the Cordones locked up their knives and forks and put away glass picture frames.

But then their son started head-banging — a problem in some children with severe autism. The Cordones’ house bears the scars of his pain, including holes in the drywall and a shattered window.

On his 9^th birthday, in December 2014, James went into a rage, Cordone said. It took four adults to restrain him.

“He was trying to put his head through the window, sweating profusely,” she says. “He was not there. It was a blank stare.”

The family called 911. James was taken to the Women & Children’s Hospital of Buffalo, where he was sedated on and off for 13 days. He went home, but a fit of rage a few months later landed the young boy in the same hospital for seven weeks in March 2015. “We couldn’t ride out the storm any longer,” Cordone says.

Cordone says her son lived out those weeks in a ‘Posey Bed,’ which resembles a child’s playpen propped on top of a hospital bed. During that time, she joined her adult children in a social media campaign to pressure her insurer to pay for intensive behavioral therapy.

The family prevailed, and James went to a center in Baltimore where staff — three counselors for his case alone — focused on his communication skills and adjusted his medication. He now lives in a group home near the Cordone family. He is “a success story,” Cordone says, albeit a rare one among children with severe autism.

“This is a crisis,” she says, “and no one is recognizing it.”

Women & Children’s Hospital of Buffalo did not return calls seeking comment.

Money well spent:

Mary Cohen, who also lives in the Buffalo area, has endured a similar struggle as a single mother. Ben’s 6-foot-1, 240-pound presence dwarfed her petite frame.

She began locking herself in a basement room to escape his outbursts, while still monitoring him via cameras she’d installed throughout the house to make sure he was safe. As the lock-ins became more frequent, she realized, “I can’t keep going like this.” She found a nearby group home, covered by his disability and Medicaid payments, that could accommodate Ben.

On 1 August 2016, it all imploded. Medication changes and an ear infection triggered a rage, Cohen says, and Ben hurt one of the staff members. Someone called 911, he was taken to the psychiatric emergency room at Erie County Medical Center, and a waiting room there is where he lived until early this summer.

“Staff was on the other side of the window watching him 24 hours around the clock,” Cohen says.

Though a 304-day stay is a record there, cases like this have surged at the hospital, says Cummings, its executive director of behavioral health. They spurred him to launch a grant-funded home-visit program aimed at keeping families with children on the spectrum from reaching a breaking point. He and his clinical partner have counseled nearly 400 families to help manage their youngsters’ medications and find services, and their ER visits have dropped by nearly 50 percent, he says.

“It’s money best spent now, because you’re going to spend it in the end,” stresses Scott Badesch, president of the Autism Society. The organization, well aware of what Badesch calls hospital “warehousing,” is pushing lawmakers nationally to spend more on behavioral counseling and in-home support for families.

A bed finally opened up for Ben at Baltimore’s Kennedy Krieger Institute — a private, highly regarded facility that offers intensive therapy, psychiatry and family coaching. Cohen held out for a placement there, hoping the staff could turn Ben’s behavior around. The teen and his mother made the 360-mile trip in June by ambulance and plane.

“I want to do the right thing for him,” Cohen says. “Because one day I’m not going to be there for him.”

This story originally appeared on Kaiser Health News. It has been slightly modified to reflect Spectrum’s style. Kaiser Health News’ coverage of children’s health care issues is supported in part by a grant from The Heising-Simons Foundation.