The Issues

Carolyn Jirak died in March 2015, at the age of 62, over a week after being admitted into the Peconic Bay Medical Center in Riverhead, New York. She was diagnosed with double pneumonia, and she had already had a broken knee and an infected ankle wound earlier that year.

But before her death, Carolyn could not even speak about what ailed her, because she had a severe developmental disability and very little verbal ability. She had been living in a group home for the disabled in Suffolk County.

Her younger sisters, Catherine Jirak Monetti and Patricia Jirak, suspected that abuse in the home caused Carolyn’s death, and they filed a complaint with the Justice Center for the Protection of People with Special Needs, a 4-year-old New York state agency charged with investigating allegations of abuse and neglect of people with developmental disabilities. The center’s investigators informed the sisters that they had found that the allegation was substantiated.

But two years later, no one has been arrested or prosecuted for Carolyn’s death.

Carolyn Jirak’s death was one of hundreds of cases closed by the Justice Center with substantiated allegations of abuse and neglect each year. But only a few dozen end with an arrest or prosecution, as data from Justice Center reports shows.

“Many developmentally disabled residents like Carolyn have died needless and very painful deaths,” Catherine said.

In fact, the Justice Center declared that 4,169 closed abuse and neglect cases had at least one substantiated allegation in 2016, but only 114 prosecutions were initiated by either the Justice Center or a local district attorney that year, according to the Justice Center’s 2016 annual report.

Not all of these cases involve deaths. But those that do still have little chance of ending in a prosecution. The annual report states the following:

“In 2016, the Justice Center closed 114 abuse and neglect investigation cases in which a death was involved. Of these cases, 46 had at least one substantiated allegation of abuse or neglect, which may or may not have caused or contributed to the death in question. It was determined that criminal charges were not warranted in any of these cases.”

Now advocates for people with developmental disabilities are trying to reform New York state’s system for investigating these cases.

State law requires that the Justice Center alert the offices of the local district attorney and medical examiner when deaths involve allegations of abuse and neglect. The center can also investigate cases on its own, and it has a special prosecutor authorized to prosecute criminal allegations. New York Penal Law Section 260.25 states that “endangering the welfare of an incompetent or physically disabled person in the first degree is a class E felony.” That felony class has a punishment of a few years of probation and no jail time.

But a bill that is currently in committees of the state Senate and Assembly would require that group homes and other organizations dealing with people with special needs directly report injuries to a 911 operator, the local district attorney’s office and the Justice Center.

What’s more, several activists have pursued lawsuits against the Justice Center in the hopes that the courts will force the center to release its investigation records to the public.

The Justice Center receives reports of abuse and neglect through a 24/7 hotline and a form on its website. Each report is recorded and tracked in a database called the Vulnerable Persons Central Register. The agency also maintains a separate database, called the Staff Exclusion List, of individuals found responsible for abuse or neglect. Anyone placed on this list is barred from working with disabled people in the state ever again.

The Justice Center investigates allegations against organizations licensed or operated by six state agencies: the Department of Health, the Office for People With Developmental Disabilities, the Office of Alcoholism and Substance Abuse Services, the Office of Children and Family Services, the Office of Mental Health, and the State Education Department. These allegations include not only physical and sexual abuse, but also emotional and psychological abuse.

There’s a lot of ground that the Justice Center has to cover. There are more than 600 facilities in the state that are licensed or operated by the Office for People With Developmental Disabilities alone.

Facilities Licensed by the Office of People With Developmental Disabilities

Anyone who has witnessed incidents of abuse or neglect, or suspects that such incidents are occurring, can report them to the Justice Center. But employees of groups homes are mandated to report incidents as soon as they’re discovered.

The People

Carolyn Jirak lived in group homes almost her entire life. She suffered from hydrocephalus, a condition in which fluid builds up in the brain, as a baby. When she was five years old, her parents sent her to the Willowbrook State School on Staten Island, the subject of a famous investigation of its conditions by Geraldo Rivera in 1972. She had also lived in the Bronx-Lebanon Hospital Center and the Suffolk State School for the Mentally Retarded in Melville (later known as Long Island Development Center).

Finally, she lived in a group home run by Independent Group Home Living from 1985 to her death.

Carolyn was “very mobile and aware,” Catherine recalled. She was diagnosed as nonverbal, but she could speak a little. She would say “ool” when she wanted to say “school,” “Ooby” to refer to her Scooby Doo doll, and “ooter” instead of computer. Since their father died in 2013, Catherine, who lives in New Jersey, had been working on obtaining legal guardianship of Carolyn.

In February 2015, during a trip to the doctor, Catherine learned that Carolyn had a fracture in her knee cap. A couple of days later, Carolyn was taken to the emergency room. She had a wound on her ankle that became septic, and she required an IV and antibiotics.

Later that same month, Carolyn called the home to check on Carolyn and learned that she needed to go to back to the ER. The doctors told Catherine that Carolyn had double pneumonia. The wound on Carolyn’s ankle was necrotic, said Catherine, who has a doctorate in nursing. She resolved to take her sister out of the group home once and for all. But it was too late. Carolyn died on March 4.

“Carolyn’s civil rights were totally violated,” Catherine said.

Catherine’s twin sister, Patricia Jirak, a Navy veteran and 9/11 first responder, said she actually called the Justice Center three times beginning in the spring of 2014: once when she witnessed Carolyn choking on a piece of food and the caretakers did not help Carolyn, a second time when Patricia and Catherine found what they thought were burn marks on the back of Carolyn’s neck, and a third time after Carolyn’s death.

“I knew something was terribly wrong, overall, long term,” Patricia said. “I intended to do something about it, and I did by calling the Justice Center.”

The sisters filed a complaint with the Justice Center in March, and they were interviewed by two Justice Center investigators in October. After the investigators conducted their review of the matter, they told Catherine that the allegation was substantiated.

When a case is substantiated, that means there is a “preponderance of the evidence” to support the allegation, and a “preponderance of the evidence” means it is more likely than not the alleged abuse or neglect occurred, according to the Justice Center’s monthly and annual reports. Most substantiated allegations in both state and non-state operated facilities are allegations of neglect rather than abuse, according to the Justice Center’s 2016 annual report.

An IGHL spokesman did not respond to requests for comment.

Carolyn’s death shared several similarities with that of Joseph Schuele, who died in the fall of 2015 at age 65. He had been living in the Maryhaven Center of Hope, another group home in Suffolk County, at the time of his death.

Schuele was the “little mayor of the daycare,” said his former caretaker, who requested anonymity for fear of retribution from Maryhaven. She had been his caretaker for about seven years, and she still has strings of beads and two binders full of drawings he used to make for her. His verbal ability was limited, but he would stop by the caretakers’ office to greet people. At first he was very independent, and he could eat, walk, use the bathroom, and get on the bus, she said. But a hip fracture limited his ability to move around on his own.

The caretaker eventually stopped working at Maryhaven, but she came back to visit Schuele for his birthday and other special occasions. But in November 2015, she heard from a former coworker that he was in the hospital. She visited him there and said her good-byes only a few hours before he died on Nov. 17 of sepsis due to a urinary tract infection.

“He was my little Joey,” the caretaker said through tears.

“We cannot comment on protected health information,” said Chris Hendriks, a spokesman for Catholic Health Services of Long Island, the operator of Maryhaven, in an email. “What we can tell you is that Maryhaven consistently follows all regulatory guidelines. Further, the Justice Center reviews all deaths of individuals with developmental disabilities who reside in group facilities.”

Robert Santoriella, a lawyer based in Brooklyn, said he’s seen cases like these before. He is representing the plaintiff in an ongoing lawsuit in federal court, R.W. v. Northern Rivers Family of Services, Inc. et al. R.W., a then 12-year-old boy, was choked in June 2014 in a group home in Schenectady with the power cord of his video game console and has been in a catatonic state ever since, the lawsuit alleges.

Only a few days before, the boy managed to record a video of a staffer in the home threatening to kill him. In September 2015, the Justice Center found that his mother’s allegations of abuse were substantiated, according to the lawsuit complaint.

“Northern Rivers is fully committed to protecting the safety and security of children in our care,” said Eugene White, a spokesman for Northern Rivers Family of Services, the operator of the group home at the center of the lawsuit, in an email. “These allegations were investigated by an independent body with our full cooperation and do not reflect the culture we practice and value within our organization. In order to protect the safety, privacy and dignity of clients and in accordance with federal and state regulations, we never confirm nor deny protected or privileged health information pertaining to current or former clients, nor do we comment on ongoing litigation. We continue as always to ensure that the rights of our clients and families are protected and that we adhere to all federal and state regulations.”

“One thing I really want to know,” Santoriella said, “is why aren’t more of these cases reported directly to 911?”

The History

The Justice Center was created to fix issues facing the state’s system for investigating abuse of the disabled. In the fall of 2011, The New York Times published a series of articles, called “Abused and Used,” about the lack of reporting of and law enforcement response to abuse of the disabled. Several articles focused on the shortcomings of the Commission on Quality of Care and Advocacy for Persons with Disabilities (CQC), a state agency that oversaw facilities for people with special needs.

Gov. Andrew Cuomo commissioned a report from a special adviser to make recommendations for improvements to the statewide system. The report, published in April 2012, found several inconsistencies with the ways different state agencies that license and operate group homes report and investigate abuse and neglect. The report also made recommendations on ways to change state regulations, including the creation of a 24-hour hotline for reports of abuse and neglect, and the establishment of a new agency to review these reports.

In response to the report’s findings, state lawmakers approved legislation known as the Protection of People with Special Needs Act the following year. This legislation, which was signed by Gov. Andrew Cuomo on Dec. 17, 2012, dissolved the CQC.

The Measure of a Society: Protection of Vulnerable Persons in Residential Facilities Against Abuse & Neglec… on Scribd

The legislation replaced the CQC with a new agency, the Justice Center for the Protection of People with Special Needs. The Justice Center began operations on June 30, 2013 and assumed most of the functions of the CQC.

State Assemblyman Michael Montesano (R-Glen Head) was one of the co-sponsors of the Protection of People with Special Needs Act. He said that the Justice Center is not just a copy of its predecessor.

“There is now a procedure that the homes have to follow in reporting cases,” Montesano said. “There is now a 24/7 hotline. Most of the people in the Justice Center have law enforcement backgrounds, and they get additional training on how to gather information. Many of these people who are in these homes are nonverbal. They can’t speak, so they can’t be interviewed. So the investigators are trained to how to get information from these people.”

Montesano also said people who report of abuse or neglect to the Justice Center can still call a 911 operator.

“I’m not a proponent of not calling 911 in serious cases, if let’s say a caretaker beats a patient or something,” he said. “But you’ll find that a lot of local authorities, especially outside of the metropolitan area, are not equipped to handle these types of cases. Some of these victims are high functioning and can communicate, but others can’t. I don’t think there’s any mandate that forbids people from calling 911. It’s just that the Justice Center also wants to know about it.”

The Protection of People with Special Needs Act on Scribd

The Demands

The Justice Center is based in Delmar, New York — the hometown of a man who is perhaps its biggest critic in New York: Michael Carey.

“The Justice Center has zero intention of fixing things,” he said. “The abuse continues to go on.”

Carey is the founder of the Jonathan Carey Foundation. The foundation, which advocates for the rights of the disabled, is named after Carey’s autistic son, Jonathan. The boy was 13 years old when he was killed in February 2007, crushed to death by a caretaker from the group home near Albany where he lived.

Carey pushed for a state law signed in 2007 that requires directors of group homes to notify the guardians of disabled residents of any injuries within 24 hours of an incident being reported and to provide a written report on actions taken to address the incident within ten days. The law is called Jonathan’s Law, after his son.

Although Jonathan died before the creation of the Justice Center, Carey said he is not satisfied with the actions the center has taken to address abuse cases. Carey filed a lawsuit in state court against the Justice Center on Nov. 24, 2014, accusing the center of withholding information from the public about the low number of prosecutions it initiates.

“It’s a cover up of criminal negligence,” Carey said.

But the judge granted the defendant’s motion to dismiss his petition on April 7, 2015.

Carey isn’t the only one who has tried to sue the Justice Center. Disability Rights New York, a nonprofit organization, filed a lawsuit in federal court against the directors of the Justice Center on Jan. 9, 2015, claiming that the center refused to release investigation records requested by the organization. That lawsuit is still ongoing.

Disability Rights New York is designated by federal and state law as a “protection and advocacy” organization for the disabled. This, the organization’s lawsuit complaint claims, means that the Justice Center must relinquish investigation records to it upon request.

Carey also tried another way to obtain Justice Center records. Last year, he filed public records requests with every district attorney’s office and medical examiner’s office in New York. He requested a list of abuse and neglect case with a death involved in a group home referred by the Justice Center since the center’s founding.

The Suffolk County medical examiner’s office was the only one to release a list of names of the people who died. Nine names were on the list. One of the names on the list was Carolyn Jirak. Another was Joseph Schuele.

Jeffrey Monsour, a caretaker from Lake Luzerne who has worked at a group home operated by the Office for People with Developmental Disabilities for over a decade, said that he has not seen much improvement since the CQC was replaced by the Justice Center.

Monsour works in a home for ex-convicts who are diagnosed with mental illness. He said he often reports cases of resident-on-resident abuse and dangerous living conditions to the Justice Center, but none of those reports have resulted in an arrest or prosecution to his knowledge. He also said that the Justice Center often tasks the Office for People with Developmental Disabilities with investigating abuse inside of its own homes, which he claims creates a conflict of interest.

“The cases go to the Justice Center, then they kick them right back to the OPWDD,” he said. “And the investigation process, they haven’t really explained it to us.”

In June 2015, a bill that would require group homes for the disabled to report injuries to a 911 operator, the district attorney’s office and the VPCR was introduced in the state Senate and Assembly. The bill died in committee at the end of the 2015-2016 legislative session, but a new version was introduced for the 2017-2018 session and is now in the Senate’s mental health committee.

State Assemblyman Michael Fitzpatrick (R-Smithtown), a multi-sponsor of the 2015-2016 version, said that the legislation, if passed and signed into law, will break down some of the bureaucratic barriers of the Justice Center.

“The potential would be there for the Justice Center bureaucracy to keep things hidden,” Fitzpatrick said. “The Justice Center, in theory, we’re all in favor of having it to investigate these cases. But in practice, it isn’t always going to work. Bureaucracy doesn’t want bad news to get out.”

“I imagine that it will cause more work for the DAs, but we’ll have to see once the law is in place,” said state Sen. Phil Boyle (R-Bay Shore), a co-sponsor of the bill. “Hopefully there won’t be too many cases, but if there is a lot of work, then we’ll have to see how we can improve the law.”

But Montesano, the co-sponsor of the Protection of People with Special Needs Act, argued that it does not make sense to report cases directly to a district attorney’s office.

“The police can come, respond, make an arrest if necessary, and they can refer a case to the DA,” he said. “Most of the time the DA relies on police information.”

He also said that although improvements can be made to the investigation system, the Justice Center is doing its job for the most part.

“A lot of people may feel like the state is covering up something up,” he said. “Let me tell you, I’d have no tolerance for that. I would not let the executive branch do something that would put these people in danger.”

Catherine Jirak Monetti and Patricia Jirak are not convinced. Catherine said she is a supporter of the new legislation. She and Patricia said they plan on suing the group home where Carolyn lived and on writing a book about their experiences with the ordeal surrounding Carolyn’s death.

“I put it in God’s hands. I’m willing to talk to other victims and journalists,” Patricia said. “Otherwise everyone else can basically go to hell.”

“Carolyn’s story needs to be told,” Catherine said. “She deserves justice, as do so many others like her and their families like ours.”

About the Project

This project was produced by Arielle Martinez for the course JRN 490 in Stony Brook University’s School of Journalism during the Spring 2017 semester. Find out more about her on her website, ariellecmartinez.com.