Autistic Man's Abandonment In Hospital Emergency Room Is Tip Of Deepening Problem

The way the state defines an emergency — the death or incapacitation of a developmentally disabled person’s caregiver — has contributed to the plight of the young man with autism abandoned by his parents at Manchester Memorial Hospital five months ago, and to similar cases across the state.

This rising threshold for an emergency is tied to budget cuts and the increasing costs of running the state’s remaining institutions. It has gotten to a point, advocates said in interviews this week, that a person with developmental disabilities who essentially has been living at a hospital emergency department, and is periodically disruptive and a burden to the staff, will not trigger an urgent state response.

And the Manchester case, though extreme, is not unique.

“Virtually every Connecticut hospital has recently dealt with or is presently dealing with one or more patients like this,” said Carl Schiessl of the Connecticut Hospital Association.

Schiessl, who directs regulatory and advocacy efforts, said hospitals are “often faced with few if any options for safe patient discharge for a variety of reasons. As a result, hospitals continue to care for these patients, but it is not an optimal situation for the patient or the hospital.”

The abandonments “break your heart, because, as a mother, you’d cut off an arm to not have to do that, right?’’ said Leslie Simoes of West Hartford, a mother and co-director of Autism Resources & Services Connecticut, based in Wallingford.

“Well, it shows how the system has fractured,” she said. “We have seen more of these abandonments in the last few years, but I’m surprised there aren’t a lot more, because there easily could be. Families who have been denied services are pushing beyond the edge, to bankruptcy, divorce or even homelessness,” to continue to care for a son or daughter with developmental disabilities.

Early on, abuse-investigation officials had taken a look at the case of this 21-year-old, who also has an IQ below 69 and behavior and impulse-control problems, and determined he was being sheltered, clothed, and fed at Manchester Memorial. His presence in the busy community hospital, with no medical condition and no treatment for his disabilities, did not constitute an emergency, said Nancy Alisberg, legal director at Disability Rights CT, a private advocacy group in Hartford.

“That has been their position in the cases of abandonment at hospitals, that the person is ‘safe’ — and that is a concern to us,” Alsiberg said, referring to the investigations unit at the state Department of Developmental Services.

It’s a concern, she said, because without the declaration of an emergency, the process of finding a suitable placement never starts.

Had it started, the first step would have been to draw up an “immediate protective services plan,” said Alisberg. The next step is a detailed review of the person’s condition and needs, called a “functional behavior analysis,” and after that, a specialist would try to communicate with the person on some level.

“Then you figure out a placement,” said Alisberg, adding that an out-of-state residential center could be considered if a spot cannot be found within the state’s expansive public and private network of group homes and respite centers.

The state has a relationship with about 30 or more out-of-state providers, including one in Florida.

Jordan Scheff, commissioner of the Department of Developmental Services, has said certain legal impediments have slowed the department’s response in the Manchester case. He said the agency is trying to find an emergency placement for the young man.

The problem in many of these cases, Simoes said, is that the definition of emergency “has been elevated and elevated and elevated. The state’s default position now is: It’s not an emergency unless the person’s final caregiver, the parent or the guardian, is totally incapacitated or has died.”

Alisberg said this high threshold “is tied to the waiting list [with more than 2,000 people waiting for residential placements] and budget cuts.”

DDS has a budget of about $1 billion, but cuts of tens of millions of dollars over the past two years have limited the department’s ability to take on new clients. Even the fund the agency draws from to make emergency placements has been reduced.

Yet, at the same time, operating costs at the remaining state-run institutions are consuming a higher percentage of the budget.

“What line won’t we cross anymore?” asked Shannon Jacovino, director of advocacy and public policy at The Arc Connecticut.

She said it’s more expensive to keep the young man at Manchester Memorial than to arrange appropriate care at private group home, yet he is forced to keep living at the hospital.

“The cost comes second to figuring out how to help him,” Jacovino said. “He’s certainly slipped through the cracks of a flawed system.”

She said she has conferred with Child Advocate Sarah Eagan, and expects that the legislature, during its next session, will take up the problems of abandonments of both children and adults at emergency rooms and delays in the state’s response.

State Rep. Heather Somers, a Republican from Groton and co-chair of the legislature’s public-health committee, said she will ask the state’s hospital-licensing authority to weigh in.

“When an emergency room is the only resource left, that’s testament to a system that lacks the flexibility to make common-sense decisions that help in these situations,” Somers said.

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