AccessAbility

December 4 through December 31
Otsiningo Park, Binghamton
5:00 pm - 9:00 pm
Every Night (weather permitting)
Admission: $8 per car

Proceeds Benefit
Southern Tier Independence Center For Information Call
(607) 724-2111 (voice/TTY)

We will have all of the old favorite displays, plus a variety of new ones (which we will keep as a surprise). Please join us for this great Holiday event.

Maria Dibble

Eighteen people from Southern Tier Independence Center joined two hundred activists with disabilities at a rally outside the governor's office on August 19, 2008. With proposed cuts threatening home care and independent living services, advocates from the NY Association on Independent Living (NYAIL) and NYS ADAPT asked for a direct meeting with Governor Paterson. We were offered a meeting with key Governor’s staff, but we refused; "Been there, done that, was cut anyway," was our response.

We chanted slogans and sang as we loudly protested cuts to programs that would have a direct impact on people with disabilities’ abilities to live independently in their communities.

I was there from beginning to end. It was an overwhelming feeling of empowerment and sense of a shared mission when we sang, "We who believe in freedom won't rest till we stop the cuts!..." And we didn"t rest as we continued our efforts for more than four hours, finally obtaining the requested meeting at around 3:30 pm.

In my capacity as the Chairperson of NYAIL, I was a member of the leadership team that met with the Governor for almost an hour. I have been at STIC for 25 years, and Governor Paterson is the first leader in his position to truly understand what Independent Living is, both from his personal perspective as a person with a visual disability, and from his experience as a board member of the Harlem Independent Living Center years ago. He is also the first Governor in my 25 years to take the time to have a sit-down meeting.

The Governor began by explaining the reasons for the cuts. They have been all over the news so I won't bore you with them again. I, in turn, related how I grew up totally blind and fortunately was able to escape the "blind school", attending regular school all of my life. He expressed the same gratitude for making a similar escape. I pointed out that neither he nor I, as people with visual disabilities, would have likely reached our respective positions if we’d been segregated in our formative years. I then segued into our reason for being there. I pointed out how we wanted to ensure that all people with disabilities are able to enjoy the same integrated opportunities that we've had.

Then we discussed the need for using a “scalpel” to make cuts, rather than an “axe”. We suggested cutting programs that segregate people (which also happen to be more costly), and to leave intact those that support community integration, self-reliance and independence. We gave our reasons for why he shouldn’t cut Centers for Independent Living, homecare or the personal care services rate. He listened attentively, gave well-informed responses to our concerns and promised a better approach in the next budget cycle.

In the end, while some of the cuts we were fighting did go through, we are pleased that the 1% proposed cut to rates for Personal Care and Certified Home Health Aide attendant services was eliminated. In this time of great economic uncertainty across the state, a commitment to homecare services will keep people out of more expensive nursing homes and other segregated situations.

My personal impressions of the Governor were quite positive, considering my rather cynical attitude toward politics these days. He conveyed a sense of calm and common sense in what was a rather volatile situation. I’m especially impressed that he was able to bring the legislature together for a day and get the all-to-often contentious Senate and Assembly to come to an agreement.

Am I happy that we were cut and the other programs dear to our hearts were slashed as well? Absolutely not! But I do believe the Governor when he says that the approach for next year will be more targeted and specific and that attention will be given to supporting the more integrated community options.

The Governor’s Secretary of Health, Joe Baker, has promised a meeting in September with NYAIL and other advocates and the Governor will have given an address at the NYAIL Conference on September 8 by the time you’ve read this article.

We thank the Governor for taking the time to meet with us, and we urge him to keep his Independent Living roots and beliefs in the forefront as he considers next year’s likely need for even more draconian cuts.

by Christine Delany

Two years ago, STIC ran an article on inclusion for students with disabilities. STIC's Education Advocacy Team (EAT, one of the advocacy committees formed last year) has continued to look at what progress is being made to make inclusion a reality for more students, as well as to determine trends and barriers to more inclusion. We have seen pockets of progress that we are thrilled about; however, there are some areas that are of great concern to us that we feel need to be addressed.

First, a little background on inclusion and the law is in order. The Individuals with Disabilities Education Act (IDEA) and its amendments have substantially promoted and strengthened the concept of placing students with disabilities into the least restrictive environment (LRE). IDEA presumes that all children with disabilities are to be educated in regular classes (see VESID Least Restrictive Environment Implementation Policy Paper Memo, updated May 1998). The least restrictive environment is, of course, an inclusive environment. Federal and State LRE requirements state that placement of students in a special class, separate school and other removal from the general education environment occurs only when the nature and severity of the disability is such, that, even with the use of supplementary aids and services , education cannot be satisfactorily achieved.

In 2003-2004 in New York State, 27% of students with disabilities spent more than 60% of their day in a segregated setting, while 7.3% were educated totally in segregated settings. In the NYS Annual Performance Report for 2006-2007, 24.6% of students with disabilities spent more that 60% of their day in a segregated setting, a decrease since 2003-2004. However, 9.5% of students with disabilities were educated in totally segregated settings, a significant increase. (For 2006-2007, there was an additional category-educated entirely in “other specific settings” that were not public schools. Combining the other standard category of educated entirely in a “separate setting” with the new category creates the 9.5%.) Additionally, students with disabilities who spend less than 21% of their day in a segregated setting were 53.1% in 2006-2007. This is actually a drop from 2005-2006, when 54% of those students spent less than 21% of their day segregated.

We understand that not every student can have her educational needs met in a general education classroom. There is a continuum of “placements” that should be considered for each student starting with general education classrooms with supports (ie. consultant special education teacher services, assistive technology, modified curriculum, behavior intervention plans, and aides). If all available support are still not enough to meet the student’s needs, then you begin looking at district self-contained (special education) classrooms with as much integration into the general education setting as possible. Only if the school district’s programs are not appropriate should CSEs look to out-of-district or BOCES placements.

This leads us to our concerns. While it is true that some districts have created more programs for their students with disabilities, there are some alarming trends. One of these is a push to place students who have emotional/behavioral issues outside of district classrooms. Placement recommendations from CSEs (often against parents' wishes) are for BOCES classrooms. More and more, the placements are very restrictive and often in totally segregated settings. This is not an indictment of BOCES or any particular BOCES program. This is an indictment of school districts that fail to create appropriate programs for these students. Rather than seeing the increasing need to meet these students’ needs and proactively creating new programs, the trend has been to place them outside the district. Clearly there are some students whose mental health needs warrant a more "therapeutic" setting. However, many of the students who are sent out of the district do not need a segregated setting. Additionally, there have been numerous cases in the last year where students with behavior issues received an IEP and within weeks were placed in more restrictive environments. If a behavior intervention plan (BIP) was created (which is required by law), it takes time to implement the BIP and, when necessary, revise the plan, so that a student can remain in a general education classroom or at least in his school district rather than be placed in a more restrictive environment. Another disturbing trend is to place a student on Home Instruction pending a placement in a BOCES classroom. Home Instruction consists of one to two hours a day of tutoring, depending on the age of the student. There were no openings in the BOCES classrooms, which was a well-known fact to administrators and many of us in the community, though rarely known by parents. Some students spent months - sometimes up to 5 months - on Home Instruction waiting for a placement.

Not only does it appear that many districts have not created programs and classrooms in their schools to meet these students’ needs, there are cases where existing classrooms are being closed. One district that prides itself on having a wide variety of special education programs and classrooms so their students do not have to leave the district has closed all its 8:1:1 classrooms for “behavior” students. The assumption was that BOCES would create more “appropriate” classrooms for these students. Unfortunately, there are no new BOCES classrooms for emotional/behavioral students. Additionally, the current classrooms for these students were already full for the 2008-2009 school year by the end of last school year. This begs the question of whether the decision to close classrooms and place students in segregated settings is in the best interest of the student or the district. If a district didn’t have the space for music programs or athletic programs, I doubt people would find that acceptable. It is not acceptable to segregate disabled students because there is not enough room for them.

In our article on inclusion (AccessAbility Summer 2006), the call was made to support districts who worked to make inclusion a reality as well as to pressure those districts that place many students in BOCES programs and in segregated settings. At that time, there was also a lot of discussion among special educators and CSEs about the increasing number of students entering school who had more challenging disabilities and the need to create programs for these students. We want to affirm that some districts have made inroads in creating programs and classrooms for students with more challenging needs. However, the unfortunate reality is that most districts have not only not stepped up to the plate to serve these students, but have in some cases gone backwards.

Each student with a disability who is successfully included in general education is a victory to celebrate. Let us not, however, forget about the students who are segregated. We need to remind each other and those who serve the educational needs of students with disabilities that every student deserves the best education possible in the least restrictive environment. The dream can become a reality. It’s time to make it a reality. We can’t afford not to.

As we’ve been reporting, changes to the federal Individuals with Disabilities Education Act (IDEA) prompted the NYS Education Department (SED) last winter to order school districts to stop paying for special education services for children with disabilities who are home-schooled.

The new IDEA requirements stated that school districts can only provide special education services in public schools or legally “recognized” private schools. SED’s action forced hundreds of families to scramble to try to get their home-schooled children with disabilities into public or private schools in the middle of the school year so they could continue to receive essential services like speech or physical therapy.

This gave rise to a remarkably well-organized and rapid advocacy campaign to get the regulations reversed. Disability rights and home-schooling advocates joined forces to push a bill through the state legislature, and then to convince Governor Paterson to sign it. The effort was successful and the bill was signed, though not before school let out for summer.

The bill saw several changes. The version that was passed simply states that students with disabilities who are being home-schooled, and whose educational plan has been approved by the local district, will be deemed to be attending a “nonpublic school” that is eligible for special education funding. There is no mention of whether services can be provided at home or in a district facility. SED’s position is that the location is at the district’s discretion. Advocates would argue that if there is a compelling case for services to be provided at home then this should be in the IEP and the district should accept it.

by Ken Dibble

Jonathan Carey will go down in history as the child with autism whose death at the hands of state workers in 2007 brought about “Jonathan’s Law”. That law requires state agencies to provide detailed information to parents about significant incidents that happen to children with mental or developmental disabilities in state-licensed and -certified programs. But you may not know that in 2004, Jonathan was mistreated in a private residential school, and NY’s primary oversight agency for programs serving people with mental or developmental disabilities botched the investigation.

In June, the NYS Inspector General released a report that lambasted the state’s Commission on Quality of Care and Advocacy for Persons with Disabilities (CQC) for conducting a “shoddy” investigation of the incident and lying to the state legislature and Governor Pataki about it. Soon thereafter, CQC Commissioner Gary O’Brien resigned. The report highlighted several important issues related to children with behavior issues, various state agencies, and laws governing child protective services. STIC has seen a lot of problems in these areas in recent years, and Jonathan’s experience at the Anderson School in Dutchess County touches on all of them.

Jonathan Carey was a handful. Born in 1993 and diagnosed with both mental retardation and autism, he could be a friendly kid who enjoyed attention from others and liked watching videos and playing with toy cars. He was only able to say a few words, though his parents said he seemed to understand more than he could say. He lived at home and attended a private school for children with disabilities (the Wildwood School) for several years. As he got older, he became increasingly aggressive toward others, biting, pinching, and pulling their hair, and he began hurting himself, often by throwing himself down on the floor. He also had not learned to use the toilet. He was becoming harder to manage, both at school and at home. Different doctors tried different medications to control his behavior. At school many of his one-to-one aides quit because of the difficulty of working with him.

Jonathan’s mother, Lisa, heard about a theory that casein, a substance found naturally in dairy products, could cause or exacerbate autism. The actual theory is that both casein and glutens (found in wheat products) are not metabolized properly in children with autism, leaving chemicals in the bloodstream that act like opiates and somehow cause maladaptive behavior. Some research indicates that eliminating casein and glutens from the diet can reduce problem behaviors. Other research finds no such effect. Children can be tested to see if casein and glutens are not being properly metabolized. Although Jonathan’s pediatrician said there was no evidence that Jonathan was casein-intolerant, he approved a non-dairy diet for the child. There doesn’t seem to have been any effort to restrict glutens.

In any case, Jonathan’s behavior kept getting worse. By age 9, Wildwood was working on a behavior plan for him that involved physical interventions and a “safe room”. The family was having trouble keeping residential habilitation workers coming because he was so hard to handle. By December 2002, Jonathan’s aggression was out of hand, his parents were at their wits’ end, and they sent him to a not-for-profit residential school.

At the Anderson School, Jonathan did well at first. The staff liked him, even though he often sought attention by touching them. Although he had “good days” and “bad days”, and needed a one-to-one aide, his behaviors were considered unremarkable, as compared with other kids in the facility. He was doing well in his classes. Progress seemed to be happening on the toileting front as well; he was successful in using the toilet 50% of the time.

His parents talked with Jonathan on the phone almost daily and often took him home on weekends. Although his toileting plan required him to wear age-appropriate clothing and be taken to the bathroom frequently, staff reported that when his parents picked him up they would immediately put him into diapers. It also appears that despite insisting on the dairy-free diet, they took him out to eat at fast-food restaurants whose products are not dairy-free.

In June 2003 scratches were found on his face. An investigation revealed that most likely they came from a fight with his roommate, on an evening when the staff weren’t supervising him properly. The Careys asked for a private room, but it took awhile to get it.

That July, Lisa Carey signed a form stating she wanted to be notified within 24 hours of minor injuries or the need for physical intervention, and within one hour for serious injuries or seizures.

By December, Jonathan’s behavior was becoming disruptive and his first behavior plan was instituted. It involved morsels of cereal for appropriate behavior and “non-exclusionary time-out”, or “planned ignoring”, for misbehavior.

He seems to have remained stable for another six months, but by June 2004 his behavior was escalating. Disrobing was becoming a problem, and by September he was “spiraling out of control”. Jonathan’s increasing aggression and noncompliance meant the staff often had to restrain him or drag him from place to place. He frequently disrobed and urinated or defecated while unclothed, when it was time for a meal or for him to go to school. The reasons for the change have never been explained. The records indicate that some of the staff didn’t understand the dairy-free diet; they thought it was “lactose-free”, and didn’t follow it. But Jonathan’s history doesn’t indicate that the diet, even when followed, had any significant effect. What is clear is that the situation deteriorated into a power struggle between the staff and one very disturbed 11-year-old boy.

The Inspector General’s report describes in great detail what happened next. We only have space to summarize it here.

The staff were frightened and frustrated. Attention to procedure and details lapsed, as did documentation. Jonathan’s behavior plan was changed several times without involving or notifying his parents or getting official approval. Rewards became cereal and exuberant praise every 20 seconds while he was being good. “Ignoring” devolved into putting Jonathan into his bedroom, with a staff member holding the doorknob to keep him from getting out, after removing all of his books and toys from the room and papering over the window so he couldn’t look outside. It involved letting him lie on his urine-soaked bed for hours at a time. And when he refused to wear clothes at mealtime, it also involved not feeding him.

Over several weeks he missed at least 40% of his meals and eight days of school. One staff person wrote in a case note that she thought it was abusive to deny food to Jonathan for his misbehavior. Eventually, staff were told to offer him snacks in his room, though it is unclear when that policy started. Three times in October, the Careys saw Jonathan in his urine-soaked bed, covered with bruises. Then a new wrinkle was added to his behavior plan; contact with his parents was to be cut off, because it was felt they were having a bad influence on him. The Careys were, naturally, extremely upset. On October 22, they took Jonathan out of the facility.

The Inspector General’s Office’s investigation was done to review the conduct of various state agencies in the aftermath of these events. Here is what they say happened next.

When the Careys told their service coordinator they were taking Jonathan out of the Anderson school due to abuse, the service coordinator, as required by law, reported the abuse allegation to the NYS Child Abuse Hotline. But the hotline operator would not accept the report. The next day, the Careys brought their son to a hospital emergency room for examination. Someone at the hospital called the Hotline and this time the report was accepted. This hotline operator, following regulations, reported the allegations to the CQC, which then launched its investigation. The CQC notified OMRDD Central, which triggered an investigation by that office. Meanwhile, the Anderson School, as required by regulations, filed an incident report with the local DDSO, Taconic Developmental Disabilities Service Office.

The Careys also complained to the local CSE and, through their attorney, to the DDSO, that Jonathan had been physically abused, that he had lost weight due to being denied food, that he was dazed and apparently emotionally disturbed, and that they had been denied information about his condition and contact with him and with program staff.

Jonathan's medical records, both from the Anderson school and the emergency room, do not show any signs of malnutrition; though he was skinny, his weight was within normal limits for his height. The bruises were consistent with his own self-injurious behavior, which included throwing himself on the floor, and into furniture, and into doors and doorways during attempts to escape - things his parents had seen him do at home.

On December 2, 2004, the CQC closed its investigation with the allegations of abuse and neglect “unfounded”. On December 20, the Taconic DDSO sent the Careys a brief letter stating that many of their complaints had been substantiated, but describing them in such a way as to minimize the seriousness of what had happened. The letter said the Anderson School had been told to make corrections so that such things couldn’t happen again, but there was no indication that anyone at the facility would be held personally accountable.

The Careys were not satisfied. Over the next three years they complained to the State Police and local district attorney, the State Education Department, and the NYS Inspector General. They eventually charged that OMRDD and CQC colluded with Governor Pataki to cover up criminal activity. Meanwhile, Jonathan was placed in a succession of programs that all struggled to meet his needs.

Then Jonathan died. He was suffocated while being restrained in a van by two state employees of the O.D. Heck Developmental Center near Albany. Those employees were convicted of criminal charges. In the ensuing bad publicity, incoming Governor Spitzer told his new Inspector General to reopen the Anderson School case. So now we have the report.

And what did the Inspector General find? Cynical tolerance of substandard services, a protective mindset toward voluntary agencies, and a cavalier attitude toward the struggles of ill-served families and the emotional responses that they produce. In other words, the things that STIC has been complaining about for decades. Beyond that, a level of incompetence was discovered at the CQC that surprised even us.

When the Taconic DDSO got the incident report from the Anderson School, the DDSO first asked the facility to investigate itself. In Taconic’s defense, this was standard OMRDD policy when serious incidents are reported at voluntary agencies. Only when the school’s director begged the DDSO to take on the investigation, pointing out that having the school do it was a major conflict if interest, did Taconic take over.

By all accounts, once they dug in they did a good investigative job, interviewing dozens of people, making numerous site visits, and inspecting thousands of documents. They found serious problems and sent the school's director a letter requesting a plan of corrective action - also standard procedure. They got a plan, but had to keep sending reviewers and consultants back as recently as last year to deal with ongoing problems with behavioral programs. They did not at any time tell the agency’s board of directors to deal decisively with incompetent staff or lose their certification. Eventually the Clinical Director did leave-under circumstances that the report doesn’t describe.

Asked to explain the policy, Taconic and OMRDD Central staff all said basically the same thing: It’s more important to keep substandard facilities up and running, and try to get improvements and hope for the best, than it is to take immediate and decisive action to make sure that nobody else gets mistreated in them.

OMRDD conducted its own investigation, but failed to look at the information generated by its own DDSO and therefore missed several key points in its report.

But at the CQC, things got really ugly-or illuminating, if you’re a disability advocate who has been frustrated by that agency for years.

The Commission on Quality of Care’s original purpose was to provide independent oversight of the state’s “mental hygiene” agencies - that is, OMRDD and OMH, and those agencies’ subcontractors. Under Commissioner Clarence Sundram in the late 1980s and early 1990s, CQC gained a public reputation as an attack dog. Sundram was criticized by many, including STIC, as being too paternalistic toward the rights and aspirations of people with disabilities, but under his leadership the CQC did vigorously expose and correct institutional abuse. Then Governor Pataki came into office - the same Governor Pataki whose OMH allowed people with mental illness to suffocate to death in decrepit adult “homes”, and whose DOH allowed the Northeast Center for Special Care, a nursing facility disguised as a “brain injury rehabilitation center”, to repeatedly mistreat and neglect patients for several years, and whose DOH also illegally locked up people with mental illness in nursing facilities. Gary O’Brien was appointed Commissioner, and after a few years, CQC was merged with the Office of Advocate for People with Disabilities as a cost-saving measure. The agency’s mission became muddled as its budget was cut. And the CQC acquired a new reputation, for being unresponsive.

The CQC investigator interviewed a small handful of people, made one site visit, and looked at a few documents. The most important piece of information to her was the medical finding that Jonathan had suffered no serious physical harm. “No harm, no foul,” as they say.

At the time, state law defined abuse as conduct that involves a failure by facility staff to carry out their proper duties and which causes, or risks causing, serious physical or emotional harm.

Jonathan was denied food repeatedly over several weeks, creating a clear risk of malnutrition. He was covered with bruises, indicating he was at frequent risk of a serious injury, no matter how it was caused. He was kept naked on a urine-soaked mattress for days at a time, a humiliation that created a risk of skin damage and posed a significant risk of serious emotional harm. Keeping Jonathan in his room all day with a staff member holding the door shut was a form of “seclusion”, which is an “aversive treatment” under OMRDD regulations that is not permissible unless it is part of a behavior plan that is approved by top facility authorities and the child’s parents, and even when it is approved, it must be time-limited. Denying food as a form of “punishment” was also a violation of OMRDD regulations. And keeping him from going to school without providing an alternate educational program violated federal and state law.

But the CQC’s policies and procedures stated that abuse or neglect can only be “indicated” if there is actual serious physical harm. The CQC leadership claimed that it’s too hard to prove the existence of a risk, or that any particular action causes emotional harm, however dire. They said that what happened to Jonathan was too bad but that the law defining abuse was “stringent”, even “draconian”, and that their hands were tied. They defended this position even though it’s at odds with the plain language of the law. It also is not supported by actual cases; the Office of Children and Family Services gets findings of neglect and abuse in Family Court at about three times the CQC’s rate when defending the rights of nondisabled kids using similar evidence.

Beyond this fundamental misinterpretation of duty, there was also plenty of evidence of malfeasance and incompetence at the CQC. When asked why their investigation was so cursory, a high-level CQC official said that they knew that Taconic DDSO and OMRDD Central were also investigating the case and they didn’t want to duplicate their efforts. There was apparently no understanding that the CQC’s role as an independent oversight body responsible for watchdogging state agencies required them to investigate every aspect of the case, so they could catch any screw-ups by OMRDD and its DDSO. The Careys had obtained a log book in which Anderson School staff made notes indicating the meals Jonathan had missed. Anderson School staff told interviewers it was genuine. The CQC investigator never looked at the log. When asked about this, CQC officials betrayed a decidedly subjective point of view by responding, “For all we knew, the Careys made it up.” And CQC Commissioner Gary O’Brien, when quizzed about the affair, said that he didn’t know what was in the regulations and that he did not bother to review communications between his office and the legislature and governor.

Then there were the lies in those communications. CQC not only investigates specific allegations of abuse or neglect, it can also conduct “care reviews” at facilities when there is an indication that something may be wrong. A care review is supposed to look at the entire agency, describe systemic problems, and request solutions. It is supposed to be a detailed and comprehensive investigation. The CQC investigator sent a letter to the Anderson School stating that she had done a care review in addition to investigating the allegations about Jonathan, and pointed to several of the same problems that Taconic’s letter identified. However, the investigator later told the Inspector General’s Office that she had not conducted a separate comprehensive investigation of the facility, she had simply used the same information she’d gathered in the original investigation to write a letter to the Anderson School administration. She said she did this because she thought the situation was important enough that it should be on the public record, and care reviews are public, whereas abuse investigations are not.

CQC officials told the governor and the legislature that the agency had conducted a comprehensive care review of the Anderson School. When confronted with the investigator’s testimony that she had not conducted such a review, these officials tried to claim that it is possible for one cursory review by a single investigator to simultaneously be a thorough abuse investigation of a particular incident and a comprehensive care review of practices throughout an entire agency.

So who was at fault for what happened to Jonathan Carey in 2004? Everybody.

Severe behavior problems in people with multiple diagnoses of autism and mental retardation are difficult to deal with. There are effective best practices and award-winning demonstration programs out there - but replicating them costs money, and requires that a central authority tell the locals how to do their jobs, and see to it that they lose those jobs if they don’t comply. The bureaucrats and politicians don’t want to touch that. The health and welfare of children with disabilities are perceived as less important than the hurt feelings and bruised egos of program administrators and staff. But isn’t this the human condition? Who among us responds well to anything but the gentlest of persuasion?

The Anderson School was a not-for-profit agency that, like virtually all such agencies, was struggling to do its job without enough money. It couldn’t afford to hire top-flight clinical professionals or provide top-flight training to the line staff. Many of the staff didn’t have the temperament or training needed to consistently follow detailed intensive behavior-modification plans with someone who was trying to hurt them, while also trying to keep that person and several others clean, fed, clothed, and on time for their activity schedules. They weren’t always consistent about following the plans. The only guidance they received was from a Clinical Director who could not figure out that rather than fight with a kid over his clothing, it might be better just to put him into a jumpsuit that zips up the back. Jonathan’s parents were harried and inconsistent, and they were around frequently. They probably weren’t always easy to deal with. As the situation deteriorated, the equally harried staff circled the wagons against them. This is not a one-of-a-kind story. This is what happens to difficult kids in closed environments surrounded by underpaid and undertrained caretakers who are overseen by busy, burned-out administrators.

As STIC has been saying for a while, there are double standards for kids with and without disabilities, not only in the minds of individuals, but also built into the policies and procedures of state and local agencies. When the child has a disability, the presumption is that the kid has somehow got it coming - they are difficult to handle and provoke abuse, the people who deal with them are saints who should be cut plenty of slack when they mess up, and anyway, does anybody really believe what these dazed and confused kids, or their overwrought parents, say when they complain? It’s too hard to prove that a kid who is, by definition, “damaged”, came by some of that damage at the hands of abusers. And anyway, their quality of life already sucks, so why go out of our way to protect and defend them?

And so where does the truth lie? It’s absolutely true that the people who have to work with these kids aren’t paid enough or trained enough. It’s also absolutely true that they cannot be given any slack. And it’s absolutely true that the economy is tanking and the state, by law, is not allowed to run a budget deficit. So what’s the answer? What are the taxpayers, you and I, prepared to give up so that kids with difficult disabilities are not starved, humiliated, beaten, and killed in crummy institutions? Our high school football stadiums? Our gas-guzzling SUVs? Our three-dollar morning coffees? Anything at all?

We’ve talked a lot about protecting health and safety here, and about lax oversight. But we must emphasize that by their very nature, segregated institutions are unsafe. This is because they are essentially factories. The reason they exist, and the goal of all of their policies and procedures, is to meet minimum standards for keeping people breathing and supervised, as efficiently as possible. Yes, there are other policies and procedures for ensuring “quality”, but when push comes to shove, the people who run these places, and those who fund them, simply shrug and say, “Nobody’s entitled to Cadillac-quality services; as long as we meet the minimums we’re doing our jobs.” Since efficiency is judged collectively, there is little concern when the treatment of one or two inmates falls below the minimum standard and people get hurt. It’s much more important to keep the factory running.

Also, these facilities are closed. The people who work there are underpaid, undertrained, and overworked. Although they are taught to behave in a compassionate and careful manner, and most of them really want to, every day they also get the message from their supervisors that what really has to happen is that the people they are serving must be cleaned, dressed, fed, and carted around from activity to activity, on a rigid schedule, whether they like it or not. They are more likely to get in trouble for failing to meet the schedule than they are for roughing up - let alone upsetting - the people they are handling. The “culture” in these places encourages and rewards brusqueness, cynicism, and casual brutality. The difficulty of the work and the need for mutual support among the people doing it creates an “us vs them” mentality, wherein just about anything that happens can be justified, and anybody who finds fault “just doesn’t understand the realities.”

Disability rights advocates oppose institutional segregation because it’s a lousy way for people to live - and that’s more than reason enough to be against it. But in this instance we have to remember another reason. We oppose institutional segregation because it’s a closed system where nasty becomes normal. A major reason to get people out of these places and into their own homes and occupations in the community is so that they will be out in the light of day, among ordinary people who are not harried and burned-out, and who will raise hell when they see somebody being mistreated.

The System Responds

We can, and should, demand better oversight of segregated institutions. In the wake of the Inspector General’s report, several actions have been taken:

Though it should not have been necessary - the O’Brien CQC simply misinterpreted the existing law - Governor Paterson took a big step by proposing legislation to change the legal definition of institutional abuse to include mistreatment whether or not anyone is significantly injured, to broaden the definition of resulting physical or emotional harm, and to clarify when and how law enforcement agencies and the CQC are to respond to allegations of abuse. A separate bill prohibits the withholding of food and water for purposes of behavior modification. Both bills were passed and signed this summer.

The new CQC Commissioner responded to the Inspector General with a letter stating that the agency will fully follow the law when conducting investigations from now on.

OMRDD created a new Office of Investigations and Internal Affairs, stated that it will evaluate each program unit for risks for abuse and develop plans to address them, and announced a new workforce training initiative that will focus on preventing abuse. The training is to be available to state and voluntary agencies.