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Nowhere Else To Go
From the Epoch Times: http://www.theepochtimes.com/n3/7969...re-else-to-go/
As Mental Health Centers Close in New York, a Parent Fears Inadequate Care
By Amelia Pang, Epoch Times | July 12, 2014
NEW YORK—When John Cosentino was left alone, he ate. He ate cigarette butts. He ate the padding from chairs. He ate screws. He had once eaten so many inedible objects that he had to throw up a gory spew of screws, plastic, and feces. The plastic that he’d eaten from his chair cover had tangled his colon, which prevented him from excreting.
John Cosentino, 49, is a wan, tall man with chestnut hair and soft eyes. He has severe behavioral disorders such as aggression, autism, and pica, a disorder that causes him to eat inedible items.
John Cosentino is one of the many adults living in locked down residential units at the Brooklyn Developmental Center (BDC) in East New York who suffers from a severe developmental disorder. To ensure their safety, they need a structured life and 24-hour care by highly trained professionals. For the most part, they receive that at BDC. But BDC is slated to close in December 2015.
Propelled by a 1999 Supreme Court decision that favored integrated settings for people with mental disabilities, psychiatric hospitals and developmental centers have been closing or consolidating nationwide in order to transition patients into more humane, community-based homes that encourage independence. For many patients, it is a welcome change.
But John Cosentino belongs to a small subset of developmentally disabled people who cannot handle independent living. They make up 5 percent of developmentally disabled adults, and their needs are often overlooked. His parents, Mary Ann and Anthony Cosentino, had to win court approval before they could get the 24-hour, one-to-one direct care that his diagnosis requires.
Anthony Cosentino, 73, a veteran with hearing loss, is panic-stricken.
He is not against his son living in a group home if the necessary care is provided. He is on edge because although the closure is a year and a half away, there is little information about where the patients will go and what kind of services they will receive.
Time is Running Out
Recently, senior management at BDC suggested that Anthony Cosentino and his wife should take a tour of two of the best group homes nearby. If he liked it, his son could move in immediately.
They visited two in East New York. The homes looked lovely. One had a green lawn, a cozy lounge area, and a patio for barbecuing. Residents sat in peace watching television.
Residents there have learned to do their own laundry and push their own wheelchairs, which they need for longer, outdoor strolls.
But John Cosentino’s condition requires him to sleep in a single bedroom. The home has no single rooms available, a staff member told Epoch Times. Also, the environment is not suitable for a person with pica.
“We have to work overtime sometimes due to the shortage of staff. Our current residents have behavioral problems. Sometimes they hit staff. Sometimes they fall in the tub,” said an employee who did not wish to be named. “We cannot handle pica.”
“These are supposedly the two best ones near BDC, but neither are pica-free,” or environments without ingestible items, Anthony Cosentino said. “And there is no plan.”
According to Anthony Cosentino, BDC is not planning to relocate its employees to continue to work with John Cosentino after its closure. BDC declined to speak to the press.
The state has agreed to set up permanent services for residents and clients with severe disabilities before the mental health centers close, but it is still not clear what those services are.
“OPWDD will assess the need for additional state-operated services and take action to address those needs,” said Jennifer O’Sullivan, the communications director for the New York State Office for People With Developmental Disabilities.
There is another group home in East New York that is currently under renovation. It’s a quaint, three-story building that is across the street from a housing project and next door to the Brooklyn Scholars Charter School, which serves children from kindergarten to the eighth grade.
“I personally don’t think that is safe,” Anthony Cosentino said.
Bill Seeks More Time
A bill called the Freeze Unsafe Closures Now Act, sponsored by state Sen. Tom Libous and Assemblywoman Donna Lupardo, called for a three-year moratorium on the closures of all mental health facilities. Its premise is that the state needs more time to understand and arrange the services necessary for the transition to group homes.
The bill was passed in the Senate on June 17. Libous and Gov. Andrew Cuomo reached an agreement before the Assembly voted on it. The agreement allots funding for community services and safeguards against potentially dangerous releases. A framework for long-term planning was also established to prevent a dangerous repeat of history where deinstitutionalization led to unintended consequences.
The closures will now go forth according to the original time line.
Dangers of Deinstitutionalization
The movement to transition individuals with developmental disabilities or mental illness out of institutions and into the community, also known as deinstitutionalization, began as early as the 1950s.
“Deinstitutionalization endangers the greater community, but it also means that those individuals who have mental and developmental illnesses are not getting the proper care they need,” former City Council member Charles Barron, who protested the closures, said in a statement.
Mental Health America confirms that there is a small group of mentally ill adults who cannot handle living in a group home.
According to think tank Mental Illness Policy, the unnecessary release of patients from psychiatric hospitals has led to an increase in homelessness and violence. Those for whom deinstitutionalization has failed are increasingly readmitted to hospitals.
While those with developmental disorders—such as autism, Down syndrome, or cerebral palsy—are not mentally ill, similar worries exist about the possibly dangerous effects of institutional closures.
There is concern that the closures may lead to an increase in imprisonment, according to a memo attached to the bill.
There is currently a building in BDC that is surrounded by barbed wire. It houses sex offenders with developmental disorders, Epoch Times confirmed with a visit. Many were previously imprisoned on Rikers Island.
History of Closures
In 1999, a Supreme Court case changed the course for history for Americans with mental disabilities.
In the Olmstead case, the Supreme Court ruled that the unnecessary institutionalization of the developmentally disabled violated the Americans with Disabilities Act.
The ruling stated that those with disabilities, including mental disabilities, should receive support in the most integrated setting possible.
The suit was filed on behalf of two patients in Georgia who remained confined in a state psychiatric hospital although their doctors had said they could live in a community setting.
But New York state began transitioning people out of developmental centers as early as the 1970s, when there were 27,000 people housed in developmental institutions, according to OPWDD.
There are 126,000 New Yorkers with developmental disabilities, including cerebral palsy, Down syndrome, and autism spectrum disorders.
Since the 1970s, 14 developmental institutions have closed. Roughly 1,000 people remain in institutions today.
Cuomo plans to close the four remaining developmental centers by 2017, including BDC in Brooklyn and the Bernard Fineson in Queens.
Nowhere Else To Go, part 2
The Search for a Home
The impending closure keeps Anthony Cosentino up at night, for he remembers when John Cosentino first began to hurt himself. At age 9, he smacked himself over 600 times in one sitting. His face swelled to the point where his doting parents could not recognize him at the hospital.
“He looked like Mike Tyson after a bad fight,” Anthony Cosentino said. “That’s when our world turned upside down.”
John Cosentino was born in 1964 at Fort Bragg, N.C. He began to walk at 14 months. There was no sign that he had a developmental disorder until age 2, when he had yet to talk.
Anthony Cosentino never forgot the sound of the soft patter of falling drops, when a representative from a behavioral modification school suggested that his 4-year-old son should be sent to Willowbrook State School on Staten Island so that Anthony Cosentino could move on with his life.
Anthony Cosentino cupped his hands to his face and grew quiet. “It’s still hard for me to talk about that day,” he said.
Willowbrook, an institution for children with intellectual disabilities, closed down in 1987 due to a public outcry over inhumane conditions. It was the first mental institution to close in New York, and it led to federal civil rights legislation protecting people with disabilities.
Anthony Cosentino could not bear to send his son there, so he contacted group homes from Maine to Florida to search for an appropriate mental health facility that would care for his son. But none would accept or keep a boy with such severe developmental disorders. The group homes did not have the capacity to keep his son safe as his condition worsened.
It wasn’t until age 14 that John was accepted into the newly opened BDC, which his parents call a miracle. For people like their son, BDC is their last resort.
A Look Inside BDC
On the BDC campus, there are open green spaces, picnic tables, and genial staff. Inside, photos of a Special Olympics, summer jam outdoor concerts, and annual Halloween and New Year’s parties decorate the walls.
There is a gym for recreational activities, a rehabilitation room, and a “pals room” where patients sit and socialize. There is a room for vocational evaluation and training.
Employees and family members said BDC is no Willowbrook. In fact, it’s most necessary for the severely developmentally disabled.
“My daughter is 40. I’ve been through it all and I know what’s best for her,” said Barbara Harris, whose daughter has been at BDC for the past 11 years. “There’s no one-care-for-all system.”
Harris’s daughter had attempted to live in a group home, but the appropriate care was not provided. “She has multiple diagnoses and needs a structured environment,” Harris said. “At the group home she was in and out of psychiatric hospitals for a whole year.”
For the past 35 years, John Cosentino had come to think of BDC as home.
John Cosentino walks about 50 yards from his room to his program. “John’s wing is like a group home,” Anthony Cosentino said.
He visits his parents’ house once a month. His mother cooks him a lovely, big meal. But once, when John Cosentino did not see the BDC van pulling up on the driveway at the designated time, he began to bang his head violently at the doorway.
“Some with developmental disorders need structure more than they need freedom,” said Dr. William Lybarger, who specializes in behavioral disorders. “Freedom is not freedom for everyone.”
Closing a Last Resort
Renee Fulton, who has a son at BDC, is beginning to have mixed feelings. “BDC is now short of staff because they are closing,” she said. “But my biggest concern is that group homes won’t provide 24-hour supervision. My son’s diagnosis requires that.”
A week ago, John Cosentino experienced a violent episode at BDC.
Three safety officers intervened, along with Anthony Cosentino and five staff from the crisis team. John Cosentino was sedated. The following week, he had another episode.
Emergency 911 was called and he was hospitalized at Kings County Psych Emergency.
“If BDC can’t handle John at times, and they are staffed, how can an undermanned staff at a group home do it?” Anthony Cosentino said.
Anthony Cosentino, sleeping four hours a night, spends the bulk of his time petitioning on Change.org, contacting politicians, and researching homes.
At this point, he may try sending his son to Bernard Fineson in Queens, albeit that facility is slated to close in 2017. He said he is willing to try anything to buy more time, to make sure the right care will be provided for his son in a group home.
As he drove home on the Belt Parkway, reflecting on the day’s events, he switched a lane and forgot to turn off his left turn signal for some time.
“This hasn’t been an easy period,” he said. “We fear for John’s safety when BDC closes. I’m afraid someone is going to die.”
A Time Line for Mental Health Center Closures
1967: Twenty-seven thousand persons with developmental disabilities live in institutions in New York state.
Television news journalist Geraldo Rivera exposes the inhumane living conditions in Willowbrook State School, an institution on Staten Island for children with intellectual disabilities. The 28-minute documentary spurred public outrage.
Parents of 5,000 persons living at Willowbrook file suit in federal court over the inhumane living conditions at the facility.
First community residence for persons with developmental disabilities opens in New York state.
1974: State schools are renamed “developmental centers.”
1975: Willowbrook Consent Decree is signed. New York state commits itself to a program of improving community placement for the “Willowbrook class” clients. Shortly thereafter, Gov. Hugh Carey extends similar benefits to all persons with developmental disabilities.
1987: Willowbrook closes, setting the precedent as the first mental health institution to close in New York City.
1989: Rome Developmental Center in upstate New York becomes the fourth institutional facility to close. Open since May 1894, it was one of the first institutions in the United States to care for persons with developmental disabilities.
1990: President George Bush signs the Americans with Disabilities Act into law. This is landmark legislation guaranteeing people with disabilities the same rights to employment and access to public facilities as other citizens.
1993: New York Census
Developmental centers population: 4,730
Persons living in community residences: just under 27,000
Persons receiving family support services: nearly 34,500
Persons receiving day services programs: almost 46,000
Enrolled in HCBS Waiver: over 3,450
Consumers served: more than 86,400
Syracuse Developmental Center, one of the oldest facilities of its kind in North America, closes.
Gov. George E. Pataki announces NYS-CARES (NYS Creating Alternatives in Residential Environments and Services), a five-year plan to virtually eliminate the waiting list for out-of-home residential services for people with mental retardation and developmental disabilities.
1999: A Supreme Court decision known as the Olmstead case favored integrated settings for people with mental disabilities. The decision led to the increased closure and consolidation of psychiatric hospitals and developmental centers nationwide.
2015: The Brooklyn Developmental Center is scheduled to close.
2017: Bernard Fineson in Queens, the last developmental center in New York City, is scheduled to close.
Source: “Milestones in OMRDD’s History Related to Willowbrook,” by The Minnesota Governor’s Council On Developmental Disabilities