The Carey family: Micheal and Lisa, with their son Joshua, continue to fight for reform.

As Good As It Gets?

The conditions that led to Jonathan Carey’s death are symptoms of larger systemic problems within the mental-health industry, unresolved by his law or the conviction of his killer

By Catherine Caperello

The morning sun makes Michael Carey squint as he speaks to the crowd: “You have to address the problems if you want to see any changes come about, and that’s what we’re going to do with the top levels of authority in the state. We’re gonna see it happen. We’re gonna make it much safer.”

About 300 people have gathered at Elm Avenue Park in Bethlehem on a September Saturday to listen while Carey—sometimes choking with emotion—speaks of his son’s life and of the goals of the Jonathan Carey Foundation, at this, its first walkathon fundraiser. About 15 to 20 of the volunteers are members of the Careys’ church, and participants are a mix of friends and family, but there are many unfamiliar faces as well. Marchers are invited for lunch and refreshments after the two-and-a-half mile walk. The pavilion fills with participants who sit down to a lunch donated by local businesses.

“It was incredible,” Carey later tells Metroland. With a throng of supporters marching behind him, “I looked back, and was just in awe. The string looked like it was a quarter-mile long; they were stretched out a little bit but, boy, it was just really—wow.”

Earlier this year, Carey’s son Jonathan died while in the care of two direct-care workers from the O.D. Heck Developmental Center in Niskayuna, a facility administered by the state. The 13-year-old was on a supervised outing when he suffocated after being restrained by one of the employees. The two workers drove around for an additional hour and a half before seeking medical attention for Jonathan. The incident whipped up a maelstrom of media frenzy, and less than 90 days after Carey’s death, Gov. Eliot Spitzer had signed Jonathan’s Law.

The New York state Senate Committee on Mental Health and Developmental Disabilities called a special hearing to evaluate the use of restraints, training, and communication at facilities run and licensed by the state Office of Mental Retardation and Developmental Disabilities. OMRDD oversees service to approximately 140,000 consumers statewide. About 1,500 are served via state-operated developmental centers like O.D. Heck.

Michael and Lisa Carey, OMRDD Commissioner Diana Jones Ritter, Commission on Quality of Care and Advocacy for Persons with Disabilities chair Gary O’Brien, and New York State Association of Retarded Citizens executive director Marc Brandt are among those who provided testimony on the use of restraint, communication with parents and guardians, inconsistencies in training across various state agencies, a need for psychological profiling of direct-care workers, and the effect of fatigue and overtime on quality of care.

The Careys had been fighting for years with state agencies to obtain access to records related to their son’s treatment at the Anderson School, a private facility in Dutchess County. Thanks in part to the intense media attention, state lawmakers passed legislation that enables parents and legal guardians to obtain such records. The law mandates that parents or other qualified individuals, such as legal guardians, must be notified by telephone of incidents within 24 hours or the facility will be subject to fines.

The legislation also mandates that facilities must provide a redacted incident report, meet with the parents, and provide written reports of actions taken in response to the incidents. It also grants parents or other qualified individuals access to redacted records and documents pertaining to allegations and investigations into patient abuse or mistreatment.

Jonathan’s Law also established a mental-hygiene task force, which, according to the legislation, is charged with “identifying the records and reports that are produced with respect to each patient receiving care and treatment in a mental hygiene facility or program, examine current disclosure practices with regard to these materials, and determine whether improved access to these materials should be legislated. . . . In addition, the task force shall identify alternative means of sharing information with parents and legal guardians, such as regular telephone calls or meetings.”

Jonathan’s Law was amended in July because, as the state interpreted the legislation, the boy’s treatment records from the Anderson School would not have been available to his parents, since the records were dated before the legislation was signed. To date, neither the task-force report nor the pamphlet disseminating the rights of parents and guardians has been made available, and the window of retroactivity for Jonathan’s Law is quickly coming to a close, expiring on Dec. 31, 2007.

While Jonathan’s Law enables parents and qualified individuals to more closely monitor the care their child is receiving, critics say it is completely reactive. Jonathan’s Law specifically addresses the availability of information after an incident takes place; critics point out that the law does nothing to address what causes these incidents in the first place.

Michael and Lisa Carey are no strangers to news cameras. Since Jonathan’s death, Michael Carey says that he’s become a magnet for insiders who have complaints about both state and nonprofit facilities but are reluctant to contact authorities.

“So many people are afraid to come forward, and it’s because they either want to stay in their job, they need their job for the benefits, or they’re afraid if they get fired they won’t be able to get another job in the field,” he says. “Maybe they love the field, so sometimes they’re compromising in a way, but in another way, they want to do something.”

“I began to hate to hear the words ‘Let it go,’ ” says Marie Haley. “I was told to let it go so many times.”

Haley didn’t have to worry about losing her job anymore when she contacted Michael Carey.

She had known the Careys previously; they were members of the same church in Delmar before Haley and her husband moved to Schoharie. She was one of the few people who would take Jonathan and walk with him during church services to give the Careys some respite. She remembers that the nonverbal Jonathan would slap his open hands on her belly to say “hello.”

Haley rose in the ranks from direct-care worker to assistant manager in the residential program in her eight months at Schoharie County chapter of the Association for Retarded Citizens. A few months later, she became senior manager, supervising about 20 direct-care workers in two residential houses. She decided to call it quits in July of this year, after more than two years of employment with ARC, citing a general disregard by the administration toward quality-of-care concerns.

Can’t let it go: Marie Haley was a former senior manager at Schoharie ARC. PHOTO: Shannon DeCelle

During her time with Schoharie ARC, Haley alleges that she made numerous complaints to her supervisors, most of which were ignored.

Haley claims that some of the recurring problems with her direct-care staff included sleeping during overnight shifts, temper and aggression issues with “consumers” (the preferred industry term for mental-health-service clients), falsifying time sheets, theft, drinking alcohol and more. She says that her supervisor told her that ARC couldn’t risk losing staff by being overly critical because “this is as good as it gets.”

Supervision, especially during night shifts, Haley says, was so lax that employees were able to get away with too much. “They couldn’t work in Wal-Mart and get away with what they get away with in the ARC.”

Haley approached her supervisor about an employee who was temperamental. When confronted about her job, the worker told Haley to “get her head out of her ass.” Haley’s supervisor told her to use a behavior plan to address the employee’s attitude. “The same kind of thing I would use with a retarded person,” says Haley, who claims that her superior even went so far as to name a consumer in the house and suggest Haley implement that person’s plan.

“That would be inappropriate,” said Anthony Alvarez, CEO of Schoharie County ARC since 1989. Alvarez emphasizes that it would be wrong for anyone in his facility to suggest the use of a consumer’s behavior plan to aid a direct-care worker with emotional issues, but did not refute that it happened.

Not only did it happen, Haley contends, she even discussed the issue with a person who she describes as “pretty high up there, the quality-assurance person right under Alvarez.”

“She didn’t have much to say about it,” Haley says.

Haley looks physically upset when describing an accident involving a consumer. Usually her staff will call her at home if they have a problem, so when she called in late one morning and the person at the desk said that a consumer had fallen and may need to see a doctor, Haley became suspicious. She dropped everything, she says, jumped in her car, and went straight to the residential house.

“It was horrible. You can’t imagine what happened.” Haley leans in and lowers her voice, “It was like something out of CSI.”

She describes how a consumer had gotten herself out of bed in the middle of the night, unsupervised, and fallen down a flight of stairs. “She had taken a fire-extinguisher off the wall with her face.”

Somehow the woman got herself back into her bedroom and put herself to bed, still bleeding.

“Nobody heard her fall,” Haley says. “The staff couldn’t tell me anything.” Two staff members on duty had claimed that they didn’t know the consumer fell because they were taking a cigarette break together.

Haley filed a 147 Report form for the incident because she was the one who dealt with the issue. This is standard procedure. Such reports are supposed to be sent from the facility to the Commission on Quality of Care and Advocacy for Persons with Disability (CQC), and the CQC is charged with reviewing the internal investigation report.

There are basically two kinds of reports, one for a standard incident and the other for an incident that directly alleges abuse. A woman falling down the stairs, even if a result of staff negligence, does not constitute an act of abuse as defined in social-services law, a definition that Michael Carey and other critics feel is too specific and actually violates the threshold of endangering the welfare of a child.

After review of the internal investigation report provided by the facility, the CQC makes binary recommendations of either “indication” or “unfounding.” This means that unless a claim shows enough evidence of abuse to be indictable, it is unfounded and the records are sealed. The CQC often will follow up with a care-and-treatment investigation.

In 2006, according to testimony in a state Senate hearing after Jonathan Carey’s death, the CQC recommended “unfounding” in 95 percent of all incidents.

Alvarez explains the reporting process: Once an employee files a report, the appropriate state oversight agencies are notified. Unless an anonymous claim is made, he assumes, whoever initially filed the report would be contacted by the state watchdog agency as part of the investigation.

Haley says that she was never contacted by CQC investigators, and because of the highly confidential nature of CQC investigative actions, it is not possible to know if the claim ever made it from Schoharie County ARC to the state players.

Haley is critical of the internal investigation, alleging that it didn’t go far enough, claiming that another staff member told her that the two on duty had been smoking marijuana at the time the consumer fell.

“When I walked in, and I saw that woman, how she looked that night, I realized all they care about is themselves and their jobs,” she says. The consumer was eating breakfast, bleeding into her bowl of cereal.

Ultimately, a memo was issued prohibiting staff from taking breaks together, and those two workers were fired. But Haley says they bagged up the linens, cleaned the blood off the walls and even tried to shower the consumer who fell before initiating medical attention. These actions and the allegations of drug use make her believe the incident bordered on criminal and the authorities should have been involved in a broader investigation. Since this incident wasn’t deemed “abuse,” the two fired staff members were free to work at another nonprofit.

Upon her resignation, Haley called and left three messages for Alvarez, none of which was returned.

Alvarez says that he did not call Haley back because “the accusations, the allegations she was making at that point had been investigated, and any recommendations coming out of those investigations were implemented.” Alvarez insists that not only are all complaints investigated appropriately but that Haley would have had access to all the support she needed in working with her direct-care staff.

“They did not want to hear it. They did not want to hear my concerns,” Haley says. “They work very hard to make it look good on the outside. They try to showcase and there is stuff that’s going on that’s good; they have good employees but it’s too small a percentage.”

“There needs to be more expected of people,” Haley says. “They got away with way too much, and then when something really bad would happen, ‘Off with your head!’ ”

Each ARC chapter operates under its own budget, and the NYSARC state umbrella entity normally makes no financial contribution. Schoharie ARC, which serves 108 consumers in residential programs, is funded by an amalgam of public money, with Medicaid as a top contributor at about 75 percent and the remainder coming from state vocational and workshop programs. According to its 2005 IRS 990 filing, Schoharie ARC’s total program service revenue exceeded $9.7 million.

“The job starts at $9.27 an hour. You can get a job at Taco Bell for $10 an hour, so I think maybe you get Taco Bell quality people working for you,” says Joey Berben, a Family Support Advocate for Rensselaer County Association for Retarded Citizens. Berben, a front-line direct-care worker, works in a higher functioning house than Jonathan Carey would have been placed. The consumers Berben works with are verbal. They live in their own apartments and often hold jobs.

“You want to hire quality people, but they don’t come as often,” the 22-year-old Berben says. “We’re always shorthanded, we’re always hiring.”

Berben was delivering pizzas for a living but had to find different work after a car accident. He would have never considered a position with the Rensselaer ARC if not for a friend who coaxed him to give it a try. At first he recoiled from the idea of having to shower people or help them go to the bathroom, but says that he has grown to love it and now wants to turn that job into a career.

Motivated by employee-incentive programs and tuition assistance, he can see opportunities for growth in his two years at Rensselaer ARC. These programs help him to feel like he’s working toward something in addition to genuinely enjoying the company of his consumers, whom Berben has come to regard as family.

“Maybe I’m not making a whole lot of money,” he says. “I feel like I can make the same amount of money and work in retail somewhere or in a restaurant, or I can have a job that is rewarding on multiple levels.”

Berben works the second shift, from 11 AM to 7 PM. Some of his tasks include taking consumers to the grocery store, to lunch, to school, work or out to the movies. Berben also administers medication when necessary.

“I do feel like a lot of organizations take certain blame for things when a lot of things are out of their control,” says Berben. “I feel like it’s kind of hard to control personal individuals when there are so many people working in an agency.” It can be exhausting work, and that exhaustion can easily be translated into a dangerous situation if not checked.

Perhaps this is what led to Jonathan Carey’s death: a dangerous situation arose from an employee exhausted by working too much in such a high-stress field.

“Ed Tirado was working his tenth double-shift in a row the night he killed Jonathan! It’s unheard of!” exclaims Michael Carey. “Eight hours with one autistic kid is more than enough, and then to work 16 hours a day, day after day after day after day? And I’ve asked the commissioner [of OMRDD] and the governor’s office to do something right away, and here it is, seven months after Jonathan’s passed on and to my knowledge there’s zero changes yet.”

(Edwin Tirado was convicted of manslaughter in the death of Carey and is scheduled for sentencing in December. The other worker, Nadeem Mall, is currently serving a six-month sentence after accepting a plea bargain in exchange for testimony against Tirado, the worker who actually applied the fatal, illegal restraint.)

According to the Times Union, Tirado ranked fourth for top overtime earners at O.D. Heck, and 18th among his 23,000 colleagues in all of OMRDD for 2006. He worked an additional 1,647 hours, roughly the equivalent of 44 weeks worth of overtime, last year. It is unclear how many of those overtime hours were considered mandatory.

These figures are extreme, and the issue of excessive overtime is currently under review by state Comptroller Thomas DiNapoli, but it is not the first time the Office of the State Comptroller has been critical of the Capital District Developmental Disabilities Services Office, the regional agency that oversees operations at O.D. Heck. In reports from 2001 and 2005, audits by the state comptroller’s office revealed problematic payroll management in the form of excessive overtime.

In both cases the Capital District DDSO response was that overtime practices would be reviewed, but pointed out that the district stayed within the overall budget. The 2005 audit indicates that the Capital District DDSO habitually underestimated the overtime costs required to service its consumers. According to the 2005 report, for fiscal year 2004-05, Capital District DDSO budgeted $867,000 for overtime but actually spent $3,628,747. The comptroller’s report chastises that this is an expensive way to staff residences.

Says Carey: “I think it’s an issue of them not hiring enough people.”

“We stop the incidents by making people aware that they occur,” says New York state Assemblyman Harvey Weisenberg (D-Long Beach), who introduced Jonathan’s Law into the Assembly, “providing information so people can be made aware to advocate and correct the causes of these incidents from occurring.” Weisenberg’s background as a special-education teacher and his experience caring for his own developmentally disabled child make him a familiar advocate to New York’s mentally retarded and developmentally disabled community.

“The reality is if you’re short-staffed and overworked and something takes place, the responsibility and burden is on the administration to know who could and who should be there taking care or providing for people that they’re servicing,” says Weisenberg. “If somebody works ten days, double shifts, you can’t tell me that you’re not aware this guy is burnt out!”

“It’s a tough day. It’s a tough day. A lot of these are nonverbal, nonambulatory, it’s a physical job, it’s a mental job,” says Weisenberg, who has been working to advance legislation for years that would limit the number of consecutive hours that a direct care worker is allowed to work, but says these efforts have been stymied by OMH and OMRDD because of staffing issues. The unions, as well, have opposed the legislation because, they argue, the workers need to work double shifts just to support their families.

“It becomes a little bit of a double-edged sword out there because a lot of our members do like to get overtime and have the additional money that comes from working additional shifts, but what’s happening in some places is they kind of get excessive, mandated overtime that becomes somewhat counterproductive,” says Stephen Madarasz, spokesman for CSEA, one of the main labor unions organized by state employees.

“We have to pay people a decent salary for the most difficult job in the world,” Weisenberg says. “The most difficult task in the world is being able to care for another human being. We gotta pay them.”

“You need to pay a better wage to attract people to do the work and to keep them, because the real issue is the excessive turnover rate in the not-for-profit sector, and everybody acknowledges it. The not-for-profits acknowledge it, OMRDD acknowledges it, and we hear it from the workers.” Madarasz explains that the there is regular contact on an ongoing basis with nonunion members due to the interconnectivity of the community. “It’s symptomatic of the big issue that there just aren’t really enough people in place to cover the shifts on a 24/7 basis. That’s really what it is.”

Weisenberg believes that the key to cultivating a career-oriented permanent workforce is offering incentives—similar to those that Berben enjoys—not only by paying a living wage, but also educational opportunities.

“We should have college motivation and higher education to be able to develop caregivers and people that will work with human beings,” says Weisenberg, who wants to give college credits to people to volunteer in nursing homes and facilities. “That is very satisfying and gratifying, and if they make a decent salary maybe we can bring people into the field. We have to motivate an interest where people take care of people.”

“There are many stories to be told of the wrongdoing that has taken place because of inadequate staff and money to be able to provide what is necessary,” Weisenberg says. “It’s an awakening that we have an obligation in government to do the best that we can to provide what is necessary.”

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