New York locks up seven times the number of people with MHMR diagnoses, when compared to other states

From The Poughkeepsie Journal in N.Y.. Pictured is the Pathways secure unit for the developmentally disabled at the Sunland Center in Marianna, Fla., has a per-diem Medicaid reimbursement rate of $301. The rate at New York centers is $4,556 per patient per day.

New York locks up seven times the number of people with lifelong brain disorders such as Down syndrome as the average of 11 other states, putting the state far ahead of what some see as a troubling trend, according to a Poughkeepsie Journal survey.

Second-place California, with twice New York's population, has half as many secure beds for the developmentally disabled as New York. So does Texas, with a quarter more people. Four of the states surveyed, which included the nation's eight largest, have no beds, and four have 30 or fewer, the Journal found. New York has 605.

Just why New York locks up so many more troubled disabled people — only 10 percent of whom are known to have been convicted of crimes — has to do with a state system that long has offered more services to more disabled people, in a well-rounded system flush with Medicaid money.

The Medicaid reimbursement rate for New York's nine institutions for the developmentally disabled is $4,556 per person per day, paid half each by the state and federal government. The average of the other states surveyed was a fraction of New York's: $703.

New York's federal revenues for its institutions are so big — about $1.2 billion this year — that they far exceed the cost of care and underwrite other programs, meaning that institutions subsidize the system.

State officials contend that their so-called "intensive treatment" units — including a locked 60-bed unit at a Wassaic state campus in eastern Dutchess County — provide compassionate care to society's troubled disabled, who might otherwise be victimized in jail or on the streets.

"I would argue that New York does not have to apologize to anyone for what we're doing," said John Finn, who oversees New York's locked units for the state Office For People With Developmental Disabilities. "Some of the people we're talking about are not being served in other states."

Indeed, nine states had fewer than one bed for every 100,000 residents compared to New York's rate of 3.1 per 100,000.

But legal advocates, experts in disability care and even those who have worked in the state's system express concern that the units lock developmentally disabled people in the essential equivalent of prisons, but with a key exception: Their sentence is undefined and often prolonged because there is nowhere to move them.

"What I see are a lot of people waiting," said Sheila Shea, an attorney who advocates for the legal rights of unit residents and is concerned over lengthy stays. On the day she was interviewed, Shea, director of the Albany office of Mental Hygiene Legal Service, was preparing a court petition to release a resident of a high-security unit who had been ready for nine months to be transferred to a community home but for whom a place could not be found.

Significantly, the state does not even know how long people stay in the units on average.

"It's not something we've looked at as a separate entity," Finn said.
In general, he said, residents fall into two camps: At the "low end," some leave after a year or two; about 15 percent at the other end "take a very, very long time, if ever," to move to less restrictive settings.

Lee Cannon, director of the Wassaic facility for two years until 1997, is troubled by the possibility, as he put it, that such units have "no backdoor."

"There's no definition of what 'intensive' is and there's no definition of 'treatment,' " he said. "If treatment is only being in an intensive treatment unit, that's really not treatment. That's really a form of incarceration."

Cannon was one of two former Wassaic directors — the other is Hollis Shaw, a director for 15 years until 1995 — to express concern over the opening of such units. Both men left several years before the 2001 opening of Wassaic's unit, one of 11 on five institutional campuses to open since 1994.

Some units, like Wassaic's, have tall cyclone fences and electronically controlled doors. Others have security cameras, two-tiered entrances called sally ports and inward-sloping perimeters that are officially deemed "unclimbable." Fenced units are a stark departure from the state's traditional approach to care and one that, Finn said, "we thought long and hard (about), and it wasn't lightly that we came to."

"There was a very dark period when fences were used to segregate people from society. We didn't want to go back," Finn said. But, he said, fences allow staff to concentrate more on treatment and less on "oppressive" control. Without them, "we had to supervise really tightly. ... From a clinical standpoint, we were suppressing behaviors as opposed to treating behaviors."


The agency declined to let the Journal tour the Wassaic unit or a higher-security facility in Tupper Lake, Franklin County, and offered little other aggregate information on the unit populations, such as age, gender, criminal convictions or home counties of residents (even though Wassaic's is a local unit meant to keep people close to families).

The state did release figures on the status of residents, with the largest share, about 70 percent, considered "voluntary" or "nonobjecting." This means that, brain disorders aside, residents or their guardians have agreed to admission or, for about 10 percent of residents, accepted it as a condition of probation or parole — the only known residents to have criminal convictions. Another 18 percent are involuntarily committed, and 10 percent have been found incompetent to stand trial or not responsible for their crimes.

Residents are not considered criminals and are classified rather by "offending behavior," according to the data, obtained under the Freedom of Information Act. About two-thirds are labeled as having exhibited a "sex offense," and 40 percent are considered assaultive. (Residents can have more than one reported behavior.) Eleven have been accused of or committed murder, officials say.

Researchers and legal experts generally agreed that some developmentally disabled people need to be segregated from society, in particular those at risk to children. But they questioned the open-ended nature of such commitments and the measures taken to prepare people to live in the outside world, as many can and, eventually, should. Community care is also far less expensive, many noted.

"I don't really have a personal problem with people establishing these alternatives," said Charlie Lakin, a researcher and director of the Research and Training Center on Community Living at the University of Minnesota. He added, however: "One of the really troubling things to me is if people are placed in these places without a trial and remain in them much longer than they would've remained in a correctional facility had they gone to trial. ... Often a simple assault sentence ends up being many, many years."


Maria Gerald was living in Port Chester, Westchester County, 10 years ago when her 16-year-old developmentally disabled son assaulted a caregiver. The teen, with the intellect of a "small child," has been declared incompetent and locked at the state's high-security Sunmount campus in Tupper Lake ever since, Gerald said. Though she said he has had no other incidents, she has no idea when or if he will ever be released.

"He's in limbo," said Gerald, a lab technician for an electronics company who lives in Milford, Conn. "It's not like when you do something wrong, and they say five years you will be in jail. It's (going on) 11 years."

In units in some states, such as New Jersey, Minnesota and California, a judge's order is required for placement. In New York, where no prior judicial order is needed, Mental Hygiene Legal Services, an arm of the court system, reviews the status of all residents at least annually, and residents can petition to leave.
While such protections are essential, they do not guarantee against keeping people locked up longer than necessary, advocates say, especially at the lowest level of security — the local intensive treatment units, or LITs — to which residents are transitioned as they improve.

"What we're seeing is the LIT consumers are not moving into the community," said Shea, the legal advocate. "There are not enough opportunities for people who do well in these facilities and need to move on."

The state's Finn acknowledged that there is a "crunch" in moving residents to community placements: "It is a struggle. I'm not going to lie."

Susan Hoger's troubled son spent three years in Wassaic's intensive treatment unit, where he was placed after he became aggressive and suicidal while housed in another unit. In one incident, she said, he bit a staff member who had broken down a door to a bathroom in which he had locked himself.


Hoger, the executive director for the Resource Center for Accessible Living, a Kingston disability-assistance organization, said her son's aggressive tendencies were used repeatedly to hold him back from activities that might help improve his behavior — such as attending programs in other campus buildings — in the apparent belief it was too risky. What was to be a short stay turned into years.

"They really built into their system a Catch-22," she said. "We all know once you're in there you can't get out."

Finn, however, disagreed.

"We're not taking the perspective that zero risk is the only tolerance we have," he said. "The question is maintaining a balance."

Following a March inspection of the Wassaic facility, the state Department of Health also expressed concern over movement out of the intensive treatment unit.

At the time, a surveyor found that a man who used a wheelchair, identified as "client 20," had been transferred from the intensive treatment unit to a regular unit as a "respite"; he lived successfully there and "had demonstrated the ability to maintain himself appropriately," the report said.

Nonetheless, when the surveyor asked if the resident might be returned to the "innate restrictions of the locked building and the fence, even if his behavior remained stable or improved, all three (staff members interviewed) indicated that this could happen."

Moreover, the man had been referred for community placement, but there were no vacancies, the report said: "It is not clear that the use of a locked and fenced building for client 20 is justified." In its response, Wassaic administrators said the man would be moved to an unlocked residence.

Another inspection, in 2009, referred to a 61-year-old resident of the locked unit who also used a wheelchair, and fell frequently, raising the question of the need for such security. (The report also found he was being given two psychotropic medications without the consent of family members; officials said the problem was remedied.)

"How dangerous is somebody who is going to be chasing you in a wheelchair?" asked Michael Smull, a consultant to state developmental disabilities agencies, who is concerned with the proliferation of locked units and the labels attached to residents. "Is there a way to assure public safety and still have that person living in a community setting? In many cases, the answer is yes."

Moreover, jail-like settings with concentrations of troubled individuals often exacerbate, rather than improve, behavior, many experts said.

"The problem is you get a lot of people with challenging behaviors in one place and it's just a magnifying effect," said Charles Moseley, associate executive director of the National Association of State Directors of Developmental Disabilities Services, who oversaw closure of Vermont's lone institution. "It really doesn't offer the kind of options for people to rejoin the community."

Previously, experts believed that special units were best for people with severely acting-out behaviors, said Richard Hemp, a researcher on developmental disability trends for the University of Colorado. But "compelling research" has since shown that when people were placed in normal community settings, he said, "bad behaviors left."

"In many ways, it's the congregation of folks that causes the problems," he said.
State officials argue, however, that the system works, creating a continuum of care that moves residents from higher to lower security levels as they improve. About 25 percent of the state's locked residents are discharged annually.

"We're very, very different from a prison," Finn said, noting that at Sunmount, for one, residents live in small homelike units, where they cook meals, do laundry and attend workshops on such subjects as anger management, socialization and substance abuse.

As for other states, he said of New York's system, "They'd be glad to have it."
They would also be glad to have New York's reimbursement rate. In California, officials hope to receive Medicaid approval for 96 new secure beds at the Porterville Developmental Center; an additional 200 locked beds do not receive Medicaid funds because of what a state spokeswoman, Nancy Lungren, called "historical challenges in being certified."

Similarly, Illinois' 30 secure beds, which are used only for people deemed incompetent to stand trial or found not guilty by reason of insanity, are not Medicaid-reimbursed, a state official said.