Edwin Sanchez’s ordeal in a community group home

Disclaimer:  This post is not intended to condemn community-based care. 

Community-based care in group homes is certainly appropriate for the vast majority of people with intellectual disabilities.  But it doesn’t work for everyone.  If you don’t believe that, talk to James Sanchez.  If anyone’s experience illustrates the continuing need for developmental centers such as the Southbury Training School, the experience of James and his brother Edwin does.

At 49, Edwin is a year younger than James.  They both grew up together in Hartford.  James says that when they were both young boys, he knew something was different about Edwin.  Edwin attended public school, just as James did, but had difficulty in learning.  “No one realized he was mentally challenged,” James says.  “He was was very verbal and independent.”

Then one day when Edwin was about 16, he went on a camping trip with his class and came back home with a burning fever.  James doesn’t recall the cause of the fever, but he remembers that it was so high that Edwin was taken to the hospital.  When he returned home, he was changed forever.

“It (the fever) had deteriorated the rest of his intelligence,” James says.  In addition, Edwin had suddenly become aggressive and erratic.  He was also now incontinent and could no longer dress or bathe himself or hold a conversation.  James’ and Edwin’s parents could not handle him.  He had become so physically aggressive that he injured his father, mother, and James’s older brother when they tried to restrain him.  James, in fact, was the only one who could handle Edwin — an ability that led to his becoming Edwin’s legal guardian just a couple of years later, when James was just 19.

Before that happened, however, Edwin’s father was able to get Edwin admitted to a facility in Middletown for persons with mental illness.  But it was the wrong choice for him.   The staff at the facility attempted to treat him by sedating him with medications.  It didn’t work, and then his father heard about STS.  It was 1979, and STS at that time was still open to new admissions.  Edwin was accepted.

James maintains that Edwin thrived at STS during the next 20 years.  While he first lived in a large dormitory with eight to 10 beds in a room, the conditions steadily improved at STS, and Edwin was eventually moved to one of many new, smaller cottages on the campus.

The doctors and other staff at STS were able to put Edwin on medications that kept his aggressive behavior under control while allowing him to function successfully.  He attended day-work programs in the community and enjoyed outings to restaurants, movies, swimming pools, and camping grounds. 

Edwin, like other STS residents, also had the freedom to roam the STS grounds under the watchful eyes of the staff.  “It was a form of independence,” James says.  Edwin liked to walk from his cottage to the administration building — the length of about two football fields — in order to get a soda and chips from the vending machines there.  He was taught how to wash his own clothes, how to set the table for dinner, and how to interact appropriately with other people.

Edwin knew everyone at STS and everyone knew him.  “It’s like a large family,” James says.  Even the firemen on campus knew and liked Edwin.  Once, James was pulled over by a state trooper while driving on I-84.  “He (the trooper) asked me where I’d been and where I was going, and I said I’d been visiting my brother, Edwin, at the Southbury Training School,” James says.  “‘Oh, you mean Eddie?'” James recalls the trooper as saying.  “He gave me a break.”

But things were about to change for Edwin.  The Messier v. Southbury Training School court suit had been filed.  The Arc of Connecticut and its affiliated nonprofit organizations, which were among the lead plaintiffs in the case, were charging that STS was not a good place for residents like Edwin.  It was too institutional, they contended, and guardians such as James were not being provided with  enough information about community-based group homes to which their wards could be moved.

In late 1999, James was contacted by a representative of the Arc of Central Connecticut, who maintained that Edwin would benefit from being moved out of STS and into a group home.   The Arc representative said the organization operated a residence in New Britain where James lived, which would mean Edwin would be much closer to him.  “She said the group home could offer everything Edwin was getting at STS, the same medical benefits and supports,” James recalls.  “It turned out to be a total lie.”

But the offer at the time was inviting and James accepted it, mainly because it would mean Edwin would be living in the same town as he was.  “I said if it doesn’t work out, I wanted him back at STS.  And she said ‘sure, sure,’ but assured me it would work out.”

Edwin was moved in February 2000 to the Arc of Central Connecticut residence.  Almost immediately, James sensed something was wrong.  It was a group home with four bedrooms, and the three other residents were women, as were the staff members.  Edwin was the only male in the place.

Edwin wasn’t happy.  “He kept saying ‘I want to go home,'” James says.  “He had been at STS for more than 20 years.  I’d failed to realize I’d taken him away from his home.”  Still, James thought he had no choice but to give the new residence a try and hope that Edwin would eventually adjust to it.  He was concerned, though, that the staff at the home would not be able to deal with Edwin’s still occasional violent outbursts.

James’ concern turned out to be well founded.  Edwin, he says, began to become more and more aggressive.  According to his medical records, his behavior became unmanageable.  His medication was no longer deemed effective, and physical restraints had to be used “due to his severe assaults toward staff and housemates.”  His behavior also necessitated “numerous trips to the emergency room and several psychiatric hospitalizations” at the University of Connecticut Medical Center in Farmington.

James became more and more concerned, but says he could get little information from the staff about Edwin.  “He (Edwin) seemed to have become very afraid,” James says, “especially of one of the staff members.”   He became afraid to walk down stairs and said one day that his leg hurt.  James lifted his pant leg and saw that Edwin had a “massive bruise and scrape” on his shin, which had not been treated.  At first, he said, none of the staff seemed to know what had happened.  Then someone finally said Edwin had fallen down the three front cement steps of the house about a week earlier while being taken out to a day program.  “I said why not call me about it and why was it not in the log book,” James says.  “I got lots of excuses.”

James was also worried about other aspects of Edwin’s care in the group home.  He was not being taken out to any activities other than his day program.  A staff supervisor “had the audacity to tell me that the home had a big back yard for him,” James says. “He’s not a little kid.  When I saw the fenced-in yard, I realized he was restricted.  It was almost like being in jail.”

One day, James got a call that there was trouble involving Edwin in the group home.  “I went over there and Edwin was swearing, even at me.”  He said the staff consisted of three young women, one of whom was six months’ pregnant.  “That was the staff they had to control him,” James says.  “They had to call the police who even handcuffed him.  They took him in the cruiser to the hospital.  That’s not the treatment that someone like him is supposed to get.”

Throughout Edwin’s worsening ordeal at the group home, James says, he repeatedly sought to have him returned to STS.  But he got nowhere.  “I talked with people from the group home and from the state,” he says.  “I said I was promised Edwin could return to STS, but I was told I had no choice.  He had to stay in the community.”  James says he was told the opposition to returning Edwin to STS was specifically coming from David Ferleger, the court monitor in U.S. v. Connecticut, a separate court case against STS.

The turning point for Edwin came in November 2001, after yet another a violent episode in which Edwin was taken to the emergency room at UConn.  The group home management said at that time that they wouldn’t take him back.  At UConn, James found out, the doctors had little or no experience dealing with intellectually disabled patients.  By this time, James says, Edwin was on as many as 12 different types of anti-psychotic medications and sedatives to keep him under control. 

But even that didn’t work.  “They (the UConn medical staff) told me they could no longer handle him,” James says.  “I said ‘where can he go,’ and their response was ‘we can’t handle him.'”   James brought Edwin to a spare bedroom in his own home, where he, his girlfriend, and his elderly mother watched over him in shifts.  At that point, STS administrators reportedly intervened and allowed Edwin to return to STS on a temporary basis.

Ferleger, however, was reportedly furious when he heard that Edwin had been re-admitted in November 2001 to STS as a “respite” patient.  He reportedly told DDS administrators he wanted him out of STS by Christmas.

James says Ferleger personally contacted him at that time and told him a decision would be made whether to re-admit Edwin to STS on a permanent basis after holding an informal meeting with Edwin’s “interdisciplinary team” of clinicians and caregivers at STS.  However, when James and his mother showed up for the meeting, they found Ferleger had actually set up what appeared to be a formal hearing with members of the interdisciplinary team and a court reporter.  Witnesses were called to testify under oath.  James says Ferleger acted in such a bullying manner toward both him and his mother that he had to leave the room at one point to compose himself.

Following the “hearing,” the interdisciplinary team ruled against re-admitting Edwin to STS, contending that the community system remained the best place for him to live.  Desperate, James called Sally Bondy, president of the STS Home & School Association, the organization of STS families and guardians.

Sally and her husband Phil called their attorney, who wrote a letter to Ferleger stating that he (the attorney) intended to represent James at all future hearings and conferences regarding Edwin’s care.  Suddenly, Ferleger dropped his objection to Edwin’s re-admission to STS.  Edwin was  permanently re-admitted to STS in January 2002 and has been there ever since.  

Once again, STS has turned out to be the proper place for Edwin.  The medical staff reduced his medications and brought his agressiveness back under control.  He soon recognized his old staff there.  “He’s happy to be back,” James says of Edwin today.  “He’s doing wonderful.”

James says that in his view, STS provides a community living structure for its residents.  “I see it as similar to community living arrangements for senior citizens,” he said.  “I don’t see it as an institutional enviroment.”  At the same time, he notes that the medical staff at STS have specialized knowledge and experience in dealing with people with intellectual disabilities.   “Not all doctors have that experience,” James maintains, “especially in hospitals (for the general public).”

But the possibility that Edwin may someday have to leave STS yet again still looms for him.  As a result of the settlement of the Messier case in 2010, community-based providers are back at STS, trying to persuade as many guardians as possible that the residents will be better off living in their group homes.  While not setting a date, Department of Developmental Services officials have indicated they intend to close STS.  In a potential reversal of the improvements made in care and conditions in the 1980s and 1990s, smaller cottages at STS, such as the one Edwin is now living in, are being closed as residents move out, and the remaining residents are starting to be moved back into larger, dormitory-like settings.

James is continuing to receive “information” about community placements for Edwin.  “I don’t want him in a community home,” James says.  “I tell them to please stop asking me.  I have no intention of ever moving Edwin out of STS again.  If he had been left in the community system, I don’t think he’d be alive right now.”