With a broken back, neck, knee, foot and traumatic brain injury, Susan Donegan says she threw in the towel on a seven-year career as a registered nurse working with developmentally disabled people.

In 2005, Donegan began working as a registered nurse at the Valley Ridge Center for Intensive Treatment in Norwich, one of only three – soon to be two – state-run institutionals for people with developmental disabilities. The other two are Bernard M. Fineson in Queens, slated for closure in 2017, and Sunmount in Tupper Lake. The state has closed 19 institutional settings for people with developmental disabilities since 1987 to encourage community-based treatment, following the exposure of rampant neglect and abuse at the Willowbrook State School. The state still operates hundreds of group homes and daytime facilities.

The CITs, like those at Sunmount and Valley Ridge, have higher security and are for residents considered too high-risk to live in a neighborhood. Many of these people have been implicated in crimes: Some were found unfit to stand trial due to their disabilities, while others are in treatment as a condition of their sentencing or probation. Many are past sex offenders. The CITs are not prisons, and residents have many more rights than prisoners do, but sometimes they act like unruly inmates and the staff members like overbearing corrections officers.

Donegan’s story is part of a three-way struggle within the state Office for Persons With Developmental Disabilities – between staff, administrators and “consumers,” the system’s term for the special-needs people it cares for. When this struggle meets the public eye, the perspective is often slanted by one of those parties to serve its own interests. Accounts of these concerns unfiltered by advocacy and legal action are rare.

OPWDD spokeswoman Denise Decarlo said the agency fired Donegan in April 2013, a year into her paid administrative leave for a broken back and foot injury. Donegan says she suffered those while dealing with a patient at the Valley Ridge CIT. Her other injuries also came from assaults by CIT residents, she said.

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Turning point

Valley Ridge and Sunmount operate under the same federal and state jurisdiction, using similar protocol and sometimes transferring residents between each other. The facilities also share operational concerns within their staff. Donegan’s reflection on her employment highlights common concerns of understaffing, unsafe resident-worker conditions, lengthy legal investigations and an overall disconnect between administration, staff and the public.

Donegan’s primary duties as an RN were to put in nursing and medication care plans for consumers. She also took part in physical takedowns when residents posed danger to others. When this happened, she would assess whether consumers could be talked down or needed a sedative shot of medicine. She followed up the incidents by checking for injury and filing documentation.

Despite low staffing, she says, within her first year, the nursing staff was able to reduce the amount of shots given to patients from an estimated few times a week to once every few months.

“It was successful because we talked them down and used boundaries, and then it was over with,” she said. “It worked when it worked, and somewhere along the line, the policies at OPWDD changed.”

Donegan says the dynamic between staff and consumers shifted after 2007, around when an autistic 13-year-old boy named Jonathan Carey died at the hands of a staffer from the O.D. Heck state center for the developmentally disabled in Niskayuna. Edwin Tirado was convicted of manslaughter for killing the boy while trying to restrain him during a public outing. According to a 2011 story in the New York Times, Tirado had worked almost 200 hours in two weeks when the death occurred. The O.D. Heck center was closed in 2015.

Donegan voiced concern about a reward system she said was placed into behavior plans for consumers around this time.

“The patients barely showed up to classroom sessions anymore, and they were rewarded for bad behavior,” she said. “They would tell them, ‘Well, if you stop hitting Johnny, you get a CD,’ but Johnny is still there to hit later for more rewards after they get the CD.

“(Consumers) really caught on quickly of that fact that they needed to start a behavior in order to get a reward,” she continued. “And that ended up in more staff and consumers being injured – and poor performance where they had been making great strides.”

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Lying in urine, feces

Some consumers, she said, chose isolation over treatment because of rewards such as video game systems and televisions in their bedrooms. Some refused to leave their rooms, even for meals, because if they did, staff would lock them out during daytime hours and encourage them to participate in classes and other activities.

“So what they started doing was just not getting out of their beds at all, and urinating and defecating in their beds, laying in it – and then their skin was breaking down, and the medical staff was supposed to fix it,” Donegan said. She saw this firsthand as part of that medical staff, and she said it wasn’t just for a day or two that residents lay in their urine and feces.

“This was going on for weeks at a time,” she said.

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State response

Donegan believes a lack of interventionary power for staff at Valley Ridge resulted from a pair of lawsuits in which the state paid Carey’s parents $5 million in 2011. She said OPWDD’s response was a change in intervention protocol and an increase in investigative staff to probe allegations of abuse and neglect.

“In 2011, OPWDD implemented a comprehensive series of reforms designed to prevent abuse and neglect and enhance safety in our operations,” Decarlo wrote in an email. She did not comment on whether the change was in response to the lawsuit, and it was not made clear what these changes entailed.

In 2013, Gov. Andrew Cuomo founded the Justice Center for the Protection of People with Special Needs to bolster the investigative presence within state agencies that deal with the developmentally disabled, mentally ill and others. Since then, it’s come into public question how the Justice Center processes a large mass of accusations. According to its monthly reports, the Justice Center confirmed nearly 4,300 allegations of abuse and neglect in 2015 – 3,007 of which came from OPWDD – yet only 89 cases were prosecuted that year, with a total of two prosecutions in December.

In the opinion of several OPWDD staff prosecuted for neglect and abuse, it’s an ineffective system.

“It’s gotten worse since the Justice Center has gotten involved, and it’s getting to the point where somebody’s going to get killed at Sunmount,” said Bill Cramer, a former Sunmount employee who was discharged while on administrative leave after working there for 12 years. At one point he was an instructor for the older takedown protocol used at Sunmount, called SCIP-R.

“Now instead of SCIP they’re focusing on this new system called PROMOTE, which I guess is quite a bit less restrictive,” he said. “From what I’ve heard from a lot of the seasoned staff, it’s pretty much a useless program.”

OPWDD spokeswoman Jennifer O’Sullivan said all direct support professionals at the agency are now trained in PROMOTE, designed to encourage relationship-based supports and safer handling of potentially dangerous situations. She said PROMOTE does use physically restrictive methods, but the “curriculum builds on and enhances the SCIP-R training which has been used for a number of years by incorporating more proactive intervention strategies and enhanced tools for crisis de-escalation to reduce the need for the use of physical interventions.”

OPWDD representatives were unable to provide measures that illustrate the effectiveness of PROMOTE in reducing physical intervention.

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The Cowboy Club

Some Valley Ridge staff remained aggressive after the changes and faced consequences. Former 10-year Valley Ridge CIT employee James McCarthy wrote in an email that he wasn’t popular among administration because he belonged to what was called the “Cowboy Club.”

“This name was given to us because us few were doing the majority of physical interventions and (were) considered the staff who would not tolerate assaultive behavior,” he said. “We also were the staff on (administrative leave) most of the time.”

Yvette Changsut noticed this divide in how staff dealt with conflict while working as a supervisor in one of the five houses inside the fence at the Valley Ridge CIT.

“From the beginning there was a distinct separation between staff who wanted to work with consumers and staff who wanted to rule over consumers, as in a correctional setting,” she wrote in an email. The latter, she says, were “the cowboys.”

Cowboy or not, several staff members said PROMOTE and the Justice Center made it harder to deal with challenging consumer behavior.

Donegan says her ability to talk consumers down at Valley Ridge was hindered by charges of verbal abuse, citing a time she was placed on administrative leave and investigated for raising her voice to address a consumer who attacked another consumer.

“They had a year to charge me,” she said. “A week before that year was up, I was brought back to work with no charges and a full year’s worth of a vacation.”

Cramer said he faced a 15-day suspension at Sunmount for raising his voice during an altercation.

Donegan suggests some staffers took advantage of heightened sensitivity from the Justice Center and put themselves in situations to receive paid leave, while others chose to avoid tense situations altogether out of fear of losing their jobs.

Another concern was that Valley Ridge was sending consumers from secure settings like a CIT to group homes without properly preparing them or consulting staff – an issue apparent in Tupper Lake as Sunmount gears to reduce its census of 53 secure campus residents by 2017. Several current and former Sunmount staff members, most speaking on condition of anonymity out of fear of losing their jobs, have approached the Enterprise with this concern. It came up when Sunmount consumer Thomas Perrault dragged a female staff member into his room at a group home and attacked her in January 2015 – he pleaded guilty in court the following month – and when John Harvey allegedly stabbed a 19-year-old female staffer in the eye with a fork on July 25 at his Sunmount group home.

“Some of our guys were not capable of ever being out in the community, no matter how much treatment there is,” Donegan said.

Decarlo says that according to federal regulation, OPWDD is required to review the status of each individual for placement at Valley Ridge every 90 days, and each one is placed in a community home only if “a team of highly trained clinicians believes that the individual can be safely supported in the community.”

Apart from permanent relocation, there are also concerns of community outings for secure populations.

A 2015 article in the Evening Sun, a daily newspaper in Chenango County, said public concerns mounted about federal and state mandates to bring Valley Ridge CIT consumers on public visits to “restaurants, churches, stores, volunteering, jobs, and community events – all without public notification.”

When asked about this event and whether Sunmount conducts the same outings with secure populations, O’Sullivan replied, “Providing people opportunities to live productive lives in the most integrated setting possible based on each person’s needs and assisting them to take an active part in their communities is at the heart of the services and supports that we provide. A person’s ability to participate in community outings is determined on a case by case basis and proper staffing and supports are provided based on each person’s individualized service plan.”

Jeffrey Monsour, a 12-year employee of OPWDD who works at a day habilitation center in Fort Edward, has been an outspoken critic of the agency and is now gathering stories from current and former staff alleging unfair treatment of consumers and workers by administration. One of his whistleblowing statements regarded unsafe community placement.

“I’ve been forced in the past to take a level 2 sex offender to a Frightfest Halloween party at Six Flags Great Escape when it was totally against the man’s plan and totally against any positive therapy he might get, and totally against all the training I had,” Mounsour said.

Monsour says he’s getting phone calls and messages on Facebook from numerous OPWDD employees.

“I want to get other people’s stories now because I think that’s what’s going to make the difference,” he said. “I’m trying a different approach other than just speaking up because it doesn’t seem to work when you go to the politicians.”

When asked why many of the workers who complain don’t quit, Donegan said financial incentives were most likely at play.

“Like Tupper Lake, it is the major well-paying job for people who don’t have much of an education beyond high school,” she said. “It’s tough work, but at the same time, it’s a job you grow to love because you’re changing lives. It’s hard to walk away from. You’ve got to walk away from the administration and not the consumers.”