25 Investigates: Kids with developmental disabilities hit hard by mental health crisis

Mental health resources for children were scarce before the pandemic. COVID-19 exacerbated the problem.

For more than a year, 25 Investigates has reported on the struggles kids in mental health crisis and in need of in-patient services face. They often end up boarding in hospitals. That’s when a patient waits in an emergency room for a psychiatric, in-patient bed.

In many cases they’re stuck there for days, weeks and even months.

But as anchor and investigative reporter Kerry Kavanaugh found, kids with developmental disabilities, like autism are disproportionately affected by the crisis.

“Every time we went to the ER was a traumatic event,” said Jennifer Drohan. “My son Sam is an 18-year-old who has autism and some comorbid mental health issues, included ADHA, anxiety and depression.”

The Southborough mom says finding appropriate care for her son has been difficult and devastating to endure.

“We have come home worse than when we came in,” she said. “It’s just complete and utter hopelessness.”

The pandemic has hit the autism spectrum disorder community, and those with other developmental disabilities, harder than it has any other population, according to Dr. Yael Dvir, a child and adolescent psychiatrist at UMass Chan Medical School’s Center for Autism and Neurodevelopmental Disorders, also known as the CANDO center.

“It is significantly more likely that a youth with a diagnosis of autism spectrum disorder or intellectual disability will board in an emergency room for a longer period of time if they require an inpatient stay,” she said.

With specialized services on hold during the pandemic, the population on the autism spectrum has been especially hard hit when it comes to mental health episodes.

Drohan says her son, Sam, began experiencing bouts of frustration and aggression even before the pandemic. He boarded in hospitals four different times in 2020.

“We were discharged on March 17, when the world was completely shutting down, with nowhere to go,” recalls Drohan. “We had already been in an 8 by 8 room for seven days and we found that there was nothing coming up on the pike.”

For many, emergency rooms may be the only place to turn to, though not always the best.

According to the Massachusetts Health and Hospital Association, 619 patients, including 78 pediatric cases, were boarding in emergency rooms or other medical floors across Massachusetts hospitals as of July 5th.

“It’s going to be important and crucial that we develop a hybrid system of being able to provide in person services and telehealth services to meet the level of challenges that that all of these kids have,” said Dr. David Cochran, director of the CANDO center.

The Worcester facility her runs offers specialized resources for kids with autism spectrum disorders and emotional health struggles on an outpatient basis.

Cochran adds that more community-based centers and mobile crisis teams are a must if the needs of this vulnerable population are to be met.

“Prior to [COVID-19], kids with autism spectrum disorders were nine times more likely to present to an emergency room for psychiatric concerns and six times more likely to need hospitalization than kids without autism,” he said.

Drohan says families of individuals with developmental disabilities deserve a level playing field.

“We have a responsibility to not just sit by and say this is a broken system,” she said. “We are in grave need of those clinicians that understand the intersection between both disabilities like autism and mental health.”

25 Investigates wanted to know how many other patients like Sam are boarding in the state’s emergency rooms. We contacted the Department of Mental Health, Department of Developmental Services, the Massachusetts Health and Hospital Association and the Association for Behavioral Healthcare but none had data on psychiatric boarding patients with developmental disabilities.

In a statement, the state’s Executive Office of Health and Human Services (EOHHS) said in part: “The Baker-Polito Administration has invested in services for children with an ASD [autism spectrum disorder] diagnosis who need crisis level behavioral health services. In July 2020, EOHHS launched a consultation service of specialty ASD providers to support individuals with ASD experiencing a BH [behavioral health] crisis across the state. In 2020, a wraparound program for children and youth with ASD through the Department of Developmental Services and the Department of Elementary and Secondary Education was expanded. This program provides community-based supports to prevent the need for residential placement to help keep children at home with their families. In 2021, the Administration provided support for the development of 2 ASD psychiatric inpatient specialty units at Cambridge Health Alliance, which opened this spring. The Commonwealth is also investing in the development of community-based acute treatment (CBAT) programs that specializes in providing children and youth with ASD short-term crisis stabilization, therapeutic intervention, and specialized programming in a 24/7 staff-secure environment.”

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