Young people with severe autism languish in hospitals

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals, 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.

Sixteen-year-old Ben Cohen spent 304 days in the ER of Erie County Medical Center in Buffalo. 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," said 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 patients with an autism diagnosis. The longest were 211 and 333 days.

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 3 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 associated with a mental health crisis almost doubled from 2005 to 2013.

"You're looking at an increase in unmet need," said 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."