Demand grows for inpatient ASD and ID programs

Half the beds in a new eight-bed inpatient unit heralded as Connecticut’s first specialized psychiatric unit for children with autism and developmental disorders were still empty nearly four months after its opening last December.

“I’ll be very candid and tell you that we have kids who are ready to come in, but it’s our self-imposed, very slow progression into this unit,” said Lynn Ricci, FACHE, president and chief executive officer of Hospital for Special Care (HSC) in New Britain, Conn., in a phone interview in mid-April.

“We are going to take our fifth patient this week. We’ve had one discharge. We have three patients currently on the unit and another one coming this week.”

HSC developed the unit with a $500,000 grant from the Connecticut Department of Developmental Services to treat the complex needs of children ages 10-21 who need intensive treatment for aggression, self-injury or severely impaired functioning that threatens their own safety or that of others.

Families with a child with a serious behavioral disturbance had long had to travel out of state to seek such specialized care. Before a place could be found, such patients often ended up in emergency rooms – noisy, stressful environments that can be detrimental to their well-being.

That’s still happening.

“There certainly is demand, primarily from the ERs who are being very respectful of our progression and understand because they know these kids and what their needs are,” Ricci said.

HSC’s small size unit, with a staff of 38, has complicated the patient mix. Ricci said a decision to admit a seven-year-old girl despite her being younger than the intended minimum age of 10 meant that HSC could not accept a physically large 16-year-old boy who was very aggressive.

It’s a lesson in planning and logistics for other states looking to establish a specialized autism inpatient unit.

Massachusetts and Vermont have no facilities offering such care, and that has burdened hospital emergency rooms. An 8-year-old boy with autism named Tyler who spent four weeks in South Shore Hospital in Weymouth, Mass., last summer before he could be placed at Hampstead Hospital in Hampstead, N.H., was the focus of a WBZ-TV news investigative report.

Tyler’s case was unique but not uncommon, said South Shore Hospital Emergency Department Chairman Jason Tracy, M.D. “We are required to find the next safe space to transfer care and if there is no space, we are the area that a child will stay,” he said.

“To take an 11-year-old and have them be in a room in an Emergency Department, which is a 24-hour hyper-stimulating environment with no access to natural light, outside activities, schoolwork, things that an 11-year-old child should have, it’s unconscionable,” Tracy added.

A Massachusetts Executive Office of Health and Human Services internal working group studying the problem of medical boarding of adults and children in hospital emergency rooms is likely to focus on the state’s lack of an autism inpatient unit. The group started meeting in January and will be providing recommendations to Secretary Marylou Sudders by mid-May, said member David Matteodo, executive director of the Massachusetts Association of Behavioral Health Systems.

Matteodo said the state has 266 child and adolescent mental health beds, representing about 10 percent of the total number of mental health beds.

“We’re still struggling with what is the right number of beds to have in Massachusetts,” Matteodo said, noting that seasonal fluctuations in demand complicate the picture.

“It’s very hard to run a unit in the summer, to run a unit for 12 months of the year for child and adolescent health when you only have one or two kids in July and August. Our census plummets in the summer.”

But while that may be true for a traditional psychiatric treatment setting, those who work in specialized autism inpatient care say their beds are in high demand year round.

“They couldn’t possibly build enough beds for Massachusetts,” said Matthew Siegel, M.D., a child psychiatrist and director of Maine Behavioral Healthcare’s Developmental Disorders at Spring Harbor Hospital in Westbrook, Maine.

“There is zero possibility they will have an empty bed. Zero. We almost never have an empty bed. So if that’s their concern, they need to talk to me.”

There are about 10 specialized autism inpatient units in the U.S. That number has doubled in the past five years, Siegel said. “And they’re probably going to double again in the next five years.”

Research on children with ASD and intellectual disability shows a significant reduction in aggression, self-injury and tantrums after treatment in a specialized inpatient unit.

Siegel led research published in 2014 in the Journal of Autism and Developmental Disorders that showed such improvements were sustained at two-months post-discharge. The mean length of stay of patients was 45 days.

The 12-bed inpatient program that opened in 2004 at Spring Harbor Hospital has received calls from Colorado, Florida and Tennessee regarding young patients seeking specialized treatment, Siegel said. “But our primary issue is to serve all of Maine, and we are almost always full with Maine kids.”

The hospital takes up to two out-of-state patients a year, Siegel said. “But then it is often very difficult to arrange the funding with the child’s home state Medicaid, or if they have private insurance I would say it works 10 percent of the time,” he added.

“If the state of Massachusetts wants to really address this, I think they have to look at their funding mechanism and their willingness to financially support the level of care that these patients need,” said Henry Sachs, M.D., medical director of Bradley Hospital in East Providence, R.I..

Bradley does not accept patients covered by Massachusetts Behavioral Health Partnership, which manages medical and behavioral health care for MassHealth Primary Care Clinician Plan Members. Sachs estimated the MBHP reimbursement covers just 30 to 40 percent of the true cost of services.

Bradley’s 19-bed Center for Autism and Developmental Disabilities (CADD) in Providence, R.I., is full “every day.” Sachs said. Bradley opened CADD in 1980 and serves patients ranging in age from 5 to 21. Average length of stay is at just over 30 days.

There were 143 total admissions during its fiscal year that ended Sept. 30, 2015. While 79 were Rhode Island patients, 31 came from Massachusetts, 22 from Connecticut and eight were from New York, according to Business Manager John Peterson. Patients are counted more than once if they have multiple levels of care.

HSC staff visited Bradley during the planning stages for the new Connecticut unit.

“They spent a lot of time with our clinical leaders, our docs, our nurses. They had people come to shadow some of our activities. They met with our dietary people, our psychologists,” Sachs said. “It was probably over a four-month period, maybe even longer…Multiple people came on multiple visits.”