Signs of the Past

by Maria Dibble

In this look back over the last 25 years, I wanted to focus on the Deaf community, and our mutual growth and awareness.

Long before I became Executive Director of STIC, in fact several years before STIC was even a dream, Frank Pennisi and I were members of the NYS Commissioner of Education's Advisory Council on Independent Living. It's a very impressive name for a group that occasionally gave advice that was usually ignored. I thought it would look good on a resume though so I agreed to serve.

At my very first meeting, a lengthy debate took place discussing whether or not Centers for Independent Living (CILs) should have TTYs to communicate with the Deaf. Now you must know that the Council was comprised of representatives from CILs, among others. I listened for a while, thinking that maybe I shouldn't spout off at the first meeting, but by the time 45 minutes had passed with people saying, "but they are so expensive" (only about $250), "they are so hard to use" (not true at all), and my very favorite, "But no Deaf people call us anyway", I'd lost patience.

I said, "I know this is my first meeting and maybe I don't understand the IL Philosophy to the fullest extent, but don't centers serve people of all ages and disabilities?" A chorus of yeses immediately followed. I said, "Well, then don't we have to have a TTY to be accessible to Deaf people? You wouldn't question having a ramp (which is far more expensive) or Braille materials would you?" A stunned silence ensued. Of course, a motion was quickly made to recommend that all centers purchase TTYs.

When STIC opened in 1983, we made sure events were interpreted, and that we had at least two TTYs. And guess what, Deaf people did call and they called a lot.

The first big issue to arise was that the Deaf community wanted STIC to take over the TTY relay service then operated by another local agency. I said I couldn't "just take it over", and we weren’t allowed to create a duplicate service, but we could try to negotiate with the agency to resolve the issues. The Deaf community circulated a petition urging us to take the service over because it wasn't currently meeting their needs. It had between 150 and 200 signatures. Armed with this petition, we were able to convince our funding source that it wasn’t a duplication for us to provide the service, since we did try to resolve the problems and the Deaf community still wanted us to be the provider. After much wrangling with the other agency, we began to run the service.

We established a Deaf Advisory Committee to tell us how the relay was working and to provide input on changes or improvements we could make. More hours of service was the first request. While we were never able to go 24/7 we did get grants to expand a bit to run about 13 hours a day. It was a much-used service but we could never raise the funds to make it all the community needed. So we became strong advocates for a statewide relay service, and were involved in its initial planning. We are fortunate to have a good reliable relay service in place, though nothing can replace the direct communication between two individuals with TTYs. Now, the internet and video phones for the Deaf tremendously expand their communication options and create a more level playing field for them.

During our early years there seemed to be constant friction between STIC and the Deaf community and no matter how much I tried, I could never figure out why. I would get comments like, "You don't serve the Deaf", "You don't reach out to the Deaf", etc.

I'd respond, "But we have the relay, interpreter services, a Deaf Peer Counselor. We're the only local agency that works with the Deaf."

Finally, in a rather heated exchange between a Deaf man and myself, he said, "Your logo doesn’t speak to Deaf people."

"Our logo?" I asked in some confusion. Note here that I’m totally blind and the logo was about as far from my thinking as we could get.

He said, "Deaf are very visual. Your logo is the wheelchair symbol. Deaf people think you only work with people who use wheelchairs."

Well, you could say that a bulb went off, that I saw the light, so to speak. We changed our logo to incorporate the "I Love You" sign and kept it for many years.

It was a bit of a rocky start to our relationship, but over the years, the Deaf community has strongly supported STIC and our mission.

When there was a big uprising at Gallaudet University because Deaf students wanted a Deaf President ("Deaf President Now!" was their slogan), we printed editorials in support of their efforts, held a large rally with great media coverage, and made the issue very public.

Over the years, we did extensive advocacy with businesses, organizations, etc. to ensure that public entities had TTYs before the statewide relay was established, and we still encourage places to have TTYs since it is much better for communication.

We still regularly advocate for sign language interpreters with medical providers and facilities, and at employment interviews, public presentations, and much more. It's sad that we still need to do this after 25 years, but at least now we are armed with better tools like the ADA.

We are pleased to announce that our Deaf Services Coordinator, Jonathan Dollhopf, will be expanding his hours from 20 to 25 a week, with his other remaining ten hours dedicated to updating and sprucing up our website. It is our eventual goal to have Jonathan become full-time in Deaf Services.

We are also very excited to tell everyone that over the summer, Jonathan taught a sign language course to the staff at the Binghamton Public Library. Now if you go visit the library, they’ll be able to greet you and say a few words in basic sign. This isn’t to replace interpreters, this is just to make it a friendlier and more welcoming place to visit for people who are Deaf. The library staff absolutely loved learning sign language and they’ve requested advanced classes soon.

Additionally, in order to strengthen and improve our link and communication with members of the Deaf community, high-level staff, including myself, will begin attending the monthly meetings of D.E.A.F., a very active local Deaf advocacy group, in October.

No disability group has had the impact on STIC that the Deaf community has. Their strength and unity, their sense of “community”, and their unique culture have taught us much and perhaps sometimes confused us. But we have always shared a common goal, that of Deaf equality, and nothing will ever stand in the way of pursuing this goal to its successful achievement.
Bad Weather?
If the weather is bad, call 724-2111 (voice/TTY) to make sure we’re open. The answering machine will explain why we’re closed. Listen to the entire message since we sometimes ask you to call back to check later in the day. If we’re going to be closed, the message will say so by 7:30 am. For Deaf consumers, there will be a generic TTY message saying we’re closed. This message is always the same no matter why we’re closed.
September 2008


AccessAbility is published seasonally (Spring, Summer, Fall, Winter) by Southern Tier Independence Center. Letters, information, descriptions of disability experiences and ads are always welcome. Deadlines are February 15, May 15, August 15 and November 15.
Our address is:
Southern Tier Independence Center
135 East Frederick St.
Binghamton, NY 13904

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Any non-copyrighted information originating in this newsletter may be reprinted without permission. If you want to reprint an article or opinion piece, please credit AccessAbility and the author.

All articles appearing in this newsletter are written by Ken Dibble except as noted.

Hometown Holiday Light Festival

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.

News and Analysis

Disability Advocates Disrupt Paterson’s Pattern

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.

Inclusion for Students with Disabilities: Running Backward

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.

You CAN Go Home Again

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.

Jonathan Carey and the CQC:
The Untold Story

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.

Medicare Gets Better Care

Disability advocates scored some victories in the Medicare Improvements for Patients and Providers Act of 2008. Although the bill’s major purpose was to restore a 10.6% cut in provider reimbursements that was scheduled to take effect on July 1, it includes several new benefits for Medicare recipients as well. President Bush vetoed the bill because of changes it made to Medicare Advantage programs, but both houses of Congress overrode the veto in July.

Under the law:

The 10.6% cut in provider reimbursements will be delayed for another 18 months.

Co-payments for mental health services will be reduced from 50% to the same 20% as required for other Medicare services, on a phased schedule between now and 2014. Co-pays will go down about 5% each year to reach this goal.

Coverage for two additional classes of drugs will be added to the Part D drug benefit in 2013. Benzodiazepines (such as Valium and Xanax) and barbiturates, often used as sleep aids, will be covered, but only when used to treat specific conditions, including cancer, epilepsy, and chronic mental health issues.

The deadline for a “welcome to Medicare” physical will be extended from 6 months to 1 year after enrollment, and the cost of this physical won’t be counted against the annual deductible. Routine physicals after the first one are still not covered under Medicare.

The federal Centers for Medicare and Medicaid Services (CMS) is given authority to expand screening or preventive services without congressional approval.

A demonstration program that required competitive bidding for durable medical equipment in some locations was stopped, and re-implementation of it was delayed. Disability advocates had been especially concerned about this program, which they said made it impossible for some people to get the specific equipment they need.

Some private Medicare Advantage plans won’t be able to operate on a fee-for-service basis any more; they will have to set-up provider networks. This provision takes effect in 2011, but only in areas where at least three Medicare Advantage plan options are available. Some health care activists viewed the Medicare Advantage program as a subsidy for private insurance companies. While this may be true, forcing recipients to choose from a more limited range of providers is not always beneficial.

SCHIP Nips Skipped and Other Flips

Bush Administration decrees that would have derailed expansions to children’s health insurance and cut back Medicaid services have been delayed until April 2009. On June 30, President Bush signed the Supplemental Appropriations Act of 2008, containing the delays.

As we’ve reported, the Bush Centers for Medicare and Medicaid Services (CMS) attempted to change regulations governing the State Children’s Health Insurance Program (SCHIP), and Medicaid funding for case management, rehabilitation services, and more, unilaterally, in order to save money.

Under the changes, states implementing the SCHIP program (in New York, it’s called Child Health Plus) would have been unable to expand it to higher income levels without first meeting essentially impossible requirements. The number of days for which the state would be reimbursed for providing case management services to people transitioning out of nursing facilities into the community under “Money Follows the Person” grants would have been drastically reduced, with the likely result that many of those transitions would not have occurred.

The federal General Accounting Office ruled that CMS’s SCHIP changes violated federal law requiring public review and Congressional approval of regulatory changes. Several lawsuits were filed against CMS by state governments and individuals opposing the SCHIP and case management changes on the same grounds.

Both houses of Congress were able to get veto-proof majorities on bills reversing these changes, or at least delaying them. Since the delaying language was inserted in a bill that provided Iraq War funding, Bush saw the writing on the wall and signed the measure.

Under the law, the changes will take effect next April unless the new administration and congress do something about them.

The Unkindest Cuts of All

Citing the ongoing economic crisis, in July Governor Paterson made another round of unilateral reductions in state spending, and he called the State Legislature back into session in August to enact further cuts. Paterson said that with the state now “officially” in a recession, as defined by economists, and because of NY’s heavy dependence on the declining stock market for its revenues (20% of the state’s funds come from that source), the state faced a shortfall this year and growing budget deficits in future years.

On his own, Paterson ordered a hiring freeze and a 7% cut in spending by state agencies in areas he can control-that is, items that are administrative in nature and not special appropriations by the legislature. This has reportedly saved about $630 million and closed the alleged current-year spending deficit. This comes on top of a 3.35% cut across similar items in the currently-enacted budget.

However, Paterson proposed additional cuts of about $1 billion for the current fiscal year and $1.6 billion for FY 09-10. He couldn’t do these on his own; he needed the legislature to approve them. Paterson said that he only needed about half of the proposed cuts to be made and he was offering the legislature a “menu” to choose from. He claimed that his cuts, particularly to Medicaid, wouldn’t “impact patient care”.

Paterson also directed all state agencies to prepare future budget requests based on a new concept called “Core Mission Budgeting”. The agencies would be required to assign each of their programs a priority rating of “high”, “medium”, or “low”, based on how important each program is to the agency’s “core mission”.

In mid-August, the state legislature approved most of Paterson’s proposals, totaling about $409 million worth of cuts in this fiscal year and $626 million in FY 2009-10.

Following a major protest action by Independent Living and ADAPT activists, at least two of his measures that were considered most harmful to people with disabilities were not passed. A 1% cut in the rate paid for Medicaid State Plan personal assistance and certified home health aide services was not approved, the planned cost-of-living adjustment (COLA) for those services was reduced instead of being eliminated, and the size of the cut to a new initiative to expand homecare availability in rural areas was significantly reduced. Also not adopted was a proposal to put anti-depressant medications on the Medicaid Preferred Drug List, which would have restricted the types of those drugs available to Medicaid recipients. We don’t know whether Paterson withdrew these proposals after meeting with STIC Executive Director Maria Dibble and others (see “Disability Advocates Disrupt Paterson's Pattern”) or the legislature simply rejected them.

We don’t have a complete updated list of what was passed. We do know that some direct assistance cuts to county governments were rejected, and that some “cuts” were made up by increasing the amount the state expects to recover from Medicaid fraud detection and investigations. The following list of cuts relevant to the disability community comes from a press release from the Governor’s office, an official state document published by the Albany Times-Union after the cuts were passed; and from a similar list dated before the special legislative session.

6% Cuts for Current FY 07-08

OMRDD Family Support Services - $2.03 million; OMRDD Sheltered Workshop/Day Training - $2.2 million; OMH Adults Non-Residential (includes workshops and real community programs) - $989,000; OMH Children and Family Non-Residential - $521,000; OMH Waiver - $394,000

Education - Aid to public schools was not touched but other programs, including higher education and school lunch programs, were. VESID Case Services - $2.2 million; VESID Supported Employment - $527,000; Expanded In-home Services for the Elderly Program (EISEP) - $1.85 million; TBI Waiver program (administrative) - $385,000; NHTD Waiver program (administrative) - $77,000

50% Cuts in New and Member Item Initiatives for Current FY 07-08

OMH PROS (supported employment) - $200,000; OMH Housing Development - $650,000; OMRDD (lumped services involving expanded respite and other family services) - $1.73 million; And several member items granted to local disability-related agencies were cut by 50%.

Medicaid Cuts for Current FY 07-08 and for FY 08-09

Adjusting Medicaid trend factors (COLAs) will save $18 million this year. We don’t know which Medicaid budget lines are affected by this. Eliminating special grants for nursing facilities will save $25 million this year. Medicaid Managed Care and Family Health Plus premium reductions will save $41 million this year and next year. Eliminating a COLA for the Early Intervention program will save $16.7 million this year, $23.1 million next year.

Related to this, but not part of the legislative session, DOH told AIDS activists in August that mandatory Medicaid managed care would soon be extended to people with HIV/AIDS.

Impact on CILs

Centers for Independent Living (CILs), like STIC, get state funds through VESID as a legislative appropriation. As such, the Governor can’t unilaterally cut their funds once they’ve been enacted in the budget. However, Paterson and the state legislature had already enacted a 2% cut in CIL funding for the current 07-08 fiscal year before the special session. That session cut another $484,000 cut from this year’s appropriation for the CILs. The expectation is that they will try to hold CIL funding to this new lower level in FY 09-10.

The Core Mission Budgeting concept may pose a problem for CILs. While on the surface it makes sense to ask state agencies like OMRDD, OMH, and the State Education Department to prioritize their programs based on relevance to their core missions, this idea only works if those agencies and their programs are organized rationally in the first place.

CILs are holistic programs that address all aspects of life for people with all disabilities of all ages. Unlike other disability programs, they are not focused on specific diagnoses, age groups, or service needs like job placement, residential supports or education. With the virtual complete demise of recipient-run community mental health programs, they are also the only disability program in the state that is essentially “owned and operated” by people with disabilities themselves. And they are one of a very small number of programs whose own “core mission” involves saving money by reducing the use of segregated institutional programs. However, since they don’t really fit very well with the education mission of SED and VESID, they may end up with a lower priority than, say, VESID’s program that buys textbooks for college students with disabilities.

If Paterson wants to be fair to the disability community with “core mission” budgeting, then he first needs to move all of the state’s disability programs and services out of the various agencies into one agency whose core mission is to maximize community integration and participation for people with all disabilities of all ages. This will not only provide a clear and rational mission to organize funding around, it will, save billions of dollars now being wasted on redundant administration and oversight, as well as on excessive medical-model micro-management.


Accessible Voting Machine Preview at STIC

by Frank Pennisi

For this November’s elections, for the first time ever, there will be an accessible voting machine at every polling place. This machine, the Sequoia ImageCast, can be used independently by people with a variety of disabilities. It has audio output and “sip and puff” controls.

STIC and the Broome County Board of Elections will be holding a sneak preview of the machine on Wednesday, October 22, from 10:00 am to 3:00 pm. All are welcome to attend and try out the machine. This will help to cut down on confusion on Election Day, as people will have a chance to use the machine and become familiar with it before then. We would also like your feedback, as the manufacturers are still making improvements to the machine to make it even more accessible.

If you’ve always voted by absentee ballot because you couldn’t get into your polling place or you couldn’t use the lever machines, THOSE DAYS ARE OVER! All Broome County polling places are now accessible and all will have an accessible voting machine!

Teenagers are also welcome to come and try the machine. Although they may not be of voting age yet, they will be soon, and this is the machine they will be using. This is a great opportunity to get to know the machine!

The demonstration will be on October 22, from 10:00 am to 3:00 pm at STIC’s new building at 135 E. Frederick Street in Binghamton. Everyone who comes will have time to experiment with the machine. All are welcome! Please call and let us know if you plan to come.

Annual Campaign Hits New Heights

STIC’s 18th. Annual Campaign (wow, have there been that many already?) got underway this summer. All proceeds benefit STIC’s building renovation project. It’s a record year; we’ve raised $8,250 as of late August.

If you haven’t already sent back your contribution, please take a moment to do so now, using the form and return envelope we provided (if you still have it; if not, please write “Annual Campaign” on your check).

Or, you can donate to STIC online at our website. Online donations can be made with a major credit card or with your PayPal account if you have one. To do so, go to:

If you prefer to give through your workplace, STIC can receive donations through the United Way and the State Employees Federated Appeal (SEFA). Ask your supervisor for help in how to designate STIC as the recipient of your workplace donation.

If you tell us we can publicize your gift, we’ll do so in these pages, just as we’ve done for the folks listed below.


Friends of Lou Augostini

Joseph Betkavsky
in memory of Janet Betkavsky

Bob & Mary Beth Bidlack
in name of Bidlack Family and Christine Delany

Lillian Boesch

Douglas & Agnes Boughton

Diane Button
in memory of Dale Button

Walter Courtenay
in memory of Martha Courtenay

Gerald L. Day

Jay & Ellen Decatur
In memory of Ken and Bernice Elander

Bernard and Doris DeHaas

Ken & Maria Dibble

Elinor Esserman

Linda Giese

Dave & Debbie Gouldin

Steven & Sharon Hermanovitch

Kathleen Hutcheson

Suzanne Legge

Maria M. Lenga
In memory of Bill Lenga

Sam J. Liberto, Jr.
In memory of Saverio Liberto

Robert & Dorothy Martens

Dennis Martino
In memory of Maria Martino

Rita Mattucci
In name of Johnn

Joyce McLarney-Bradley
In memory of Charles Bradley

Juanita Mendez
In name of JoAnne Novicky

Lori Morton

Sara Murray
In name of Eric Vhugan

Ann Noble

Marjorie Norcross

JoAnne Novicky
In memory of Nick Ross

James and Barbara O’Donnell
In name of Joshua Hyde<

Robin Oggins

Lois O’Halloran

Janet Ottman

Beverly Rainforth

Donald Rauschmeier Sr.

Robert L. Reid

Patricia J. Rotundo

Ruff Family
In memory of Jesse Ruff

Matthew & Mary Ellen Salanger

Matthew Schadt
In memory of Dick Schadt

Andy Sedor

Ray & Bonnie Slocum
In memory of Inez Mittan

Diane Stento
In name of Danielle Stento

David & Marci Tripicco
In memory of Sheila Evans

Marilyn & Lee Wilhelm
In name of Laura Wilhelm

Victoria Xlander

Linda Yahner
In memory of Thomas Yahner

ECDC News: Save the Date!

On October 22, between 2:30-4:30 pm, Stanley Klein, PhD, will offer observations and suggestions on “How to Instill Self Esteem and Resiliency in Our Kids” for the parents of kids with disabilities. Professionals in the field are also welcome to attend. It will be held in the conference room at STIC’s new location at 135 E. Frederick St.

Dr. Klein is one of the founders of the excellent magazine Exceptional Parent; he has also authored various books, among them You Will Dream New Dreams (2001) and Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew (2004). He is also a regular contributor to inSight, the national newsletter of the ARC. Currently, he provides clinical services for parents of children with disabilities at the Boston Institute for Psychotherapy in Brookline, Massachusetts.

Dr. Klein will also speak to residents and physicians at UHS through their Family Services Department on “The Challenge of Communicating with Parents”. As many of us know, accurate, current information delivered in a compassionate manner by your child’s physician can make all the difference.

This exciting event is open to both consumers and service providers. We look forward to seeing you there!

New Education Advocate at STIC

by Christine Delany

Casey Calvey (formerly Truillo) is the new Education Advocate at STIC. Casey has worked for many years as an advocate for families and children, often working with schools to meet the needs of students and their parents. Casey is a great asset to STIC. We are working to make the transition as smooth as possible. You can reach Casey at 724-2111 (voice/TTY).

I will still work at STIC part-time as a Service Coordinator while I pursue a graduate degree in Special Education (what a surprise!). I have truly enjoyed working with a wide variety of students and their families as STIC’s Education Advocate for the last four years. I will miss doing this important job. A huge thank-you to the parents who trusted me to help them, to many school district employees and administrators who were willing to work with me to help students with disabilities, and to many members of the community who sent referrals my way.

New Faces

Shawn Ampula
I am a new Employment Specialist with STIC’s Job Connections supported employment program. I’m a graduate of Maine-Endwell high school, and received a Bachelor’s degree in history at SUNY Oneonta. After some time working for Broome-Tioga BOCES, I went back to school. I received my second Bachelor’s in psychology from SUNY Oswego and plan to get my Masters in social work in the near future, money and time permitting. I have spent the past two years as a child protective services investigator for Broome County. I have a large extended family in the area, and recently bought a home in the Town of Dickinson. I have a lot invested in the area and have always enjoyed working with people. I am looking forward to being a valuable addition to the group of professionals here at STIC.
Casey Calvey
On August 11, 2008, STIC warmly welcomed me as an Education Advocate and Medicaid Service Coordinator. I have a Bachelor’s degree from LeMoyne College and a Family Empowerment Credential from Cornell. What truly qualifies me for this position, however, is being the parent of a special needs child, who continually strives to learn more about navigating the Education, Mental Health, and OMRDD systems. Prior to my employment at STIC, I was the Coordinated Children’s Services Initiative (CCSI) Coordinator at Catholic Charities and a Family Support Specialist for Lourdes Youth Services. Both of these positions required the ability to work with families in a strengths-based manner, empowering them to identify their goals for success. I am excited about coming on board with STIC and assisting many families with achieving their dreams.
Nicole Gasbarra
I’m very excited to be joining STIC as a Medicaid Biller and would like to thank everyone for such a warm welcome. I’ve been working in medical billing for several years at United Medical Associates and look forward to using that experience and adding to it in my current position. I’ve lived in Endicott for all of my life and am blessed with a great husband and 3 active boys ages 16, 14, and 9.
Sue Hoyt
I am a new Personal Assistant Advisor working in the CDPA department. I live in the First Ward of Binghamton with my husband Jeff and two of my three kids: my daughter Kasey (Kassondra) - 15 and my son Thommy - 12. My oldest son Kenneth is 19, a member of the Army National Guard and is currently living in Chenango Bridge. I grew up in Norwich, NY until I was 16, then I moved to Cortland and graduated from Cortland High School. I have lived in the Southern Tier for 19 years. I have been a Girl Scout Leader for 9 years, and am a Sunday School Teacher, Youth Choir Director and Youth Fellowship Director for my church. My favorite place in the world is the Adirondack mountains. My favorite animal (as most of you know) is the white tiger and my favorite color is hunter green.
Jane Long
I am extremely excited to be a member of the STIC family! My face isn’t exactly new, as I can remember when STIC was formed 25 years ago, and in those early years I served briefly on the Board of Directors.

Over the years I evolved from a person who was hard-of-hearing to a person who was Deaf. Five years ago I had a cochlear implant, and my friends say I am a Deaf person who can hear.

I recently completed my Master of Social Work degree at Binghamton University, during which I interned at the High Risk Births Clinic, and at STIC as a counselor for families and individuals with disabilities. My counseling methods range from simply listening to more complex forms of evidence-based psychotherapy.

My office is meant to be a safe haven for people with disabilities to share their problems, and acknowledge their strengths, their resiliency and capacity for growth, change and independent living. I consider it an honor and a pleasure to serve people with disabilities at STIC.

New Women’s Group at STIC

by Amy DeLouisa

I am a student studying social work at Binghamton University. Since May I have been working as a social work intern here at STIC. I am thoroughly enjoying my time at STIC as I have never had the pleasure of working with so many wonderful, knowledgeable and dedicated people!

For the past couple of months I have been co-facilitating the women’s group with Darlene Dickenson. I really enjoy this group because even though we are helping people learn a variety of independent living skills we manage to have a lot of fun. Sometimes we have so much fun that you don’t even realize that you’re learning valuable skills!

Because I have been having so much fun with the women’s group (and because that group is full) one of my supervisors, Susie Link, has asked me to start another women’s group. I am very excited about being able to start another group and would like to invite anyone who would like to learn more about things like how to open a bank account, how to shop for bargains, first aid, communication skills, and lots of other stuff while having fun to join us for this group.

If you are interested in joining this group or would like more information, please call me Tuesday through Thursday at 724-2111 (voice/TTY). I look forward to talking with you!

STIC: A Moving Experience

As this newsletter hits the streets, STIC will be in the process of moving to our new building. Our new address is:

Southern Tier Independence Center
135 East Frederick Street
Binghamton, New York 13904

Our phone number, fax numbers, email addresses and website will all remain the same.

The single floor design and expansive meeting rooms provide easier access for people with disabilities and the community. We hope you will have an opportunity to visit our new location.

PLEASE NOTE: The move is a very big job. To get it done, our office will be CLOSED from September 22 through October 3, 2008. Essential operations will continue during that period, but staff availability will be limited. However, we will have phone service and, with the exception of September 26, staff will have access to voicemail. If you can’t reach someone right away, please leave a message.

Emergency contact information remains the same and will continue to be available by calling STIC and following the voice mail prompts.

We will reopen for full business operations on October 6. We have made very careful plans to keep service disruptions to a minimum. Please be patient with us during our move.

We’re planning an Open House/25th. Anniversary celebration for later in the fall, and we hope you’ll join us then!

STIC's Honor Roll

Each year STIC honors those who have gone above and beyond the call of duty to support the disability community, individuals with disabilities, or STIC. This year’s awards were presented at our annual meeting on June 23, 2008. We deeply appreciate their efforts, and wanted you to know about them as well. If you see them, pat them on the back for us.

Commitment to Community Service
Christ the King Lutheran Church
Each year STIC “adopts” several families who are in need of assistance to make their winter holidays happy. This church’s tremendous outpouring of support for one of the families was extremely heart warming.
Outstanding Consumer Support
Bradley Bruce
Director of Special Education Windsor School District

Brad’s new preschool program will help ensure timely evaluations and services for kids with disabilities in a rural community where it’s hard to find. He has shown compassion and sensitivity to parents, and takes the time to explain things to them in a clear way. He has fostered a more accepting and understanding environment for children with disabilities among both staff and other kids.
Debby Dino, RN
Broome County CASA

Debby is fully committed to independent living, and to maintaining open communications among all those involved in all of her cases. Recently and most especially, she worked tirelessly to find a way to allow a gentleman with ALS to live at home despite being on a ventilator, a most remarkable achievement and often believed to be impossible to do.
>Adam Hunter

Adam is very supportive, sensitive and accommodating to people with disabilities, and has gone well beyond the ordinary YMCA services to meet their needs.
Suzanne Jackson
New York State Education Department (SED)

Suzanne was an excellent Regional Associate (RA) for our area. She has taken a new job in SED, but has maintained her commitment to students with disabilities. She has responded to parents and advocates and has facilitated compromises between school districts and families. She has actively addressed school district compliance with SED regulations. In her new position, she has been responsive to our concerns about problems in our region and our request for a new RA, despite the budgetary constraints SED currently faces.
Tina Survilla
Broome County Department of Social Services

Tina works in the Medical Transportation Department, assisting people who need to travel for medical appointments to get reimbursed for travel, parking, lodging, and meals. Tina doesn’t just do her job. She is courteous, professional and efficient, which makes the entire process easier for families. She is never too busy to take the time to explain the process to family members and professionals. Many times, due to medical emergencies, families must travel on short notice. Tina is quick and professional about responding to their needs, easing the stress of the situation. One parent stated that her daughter wouldn’t be getting the quality medical care she is receiving without Tina’s valuable assistance.
Outstanding Employment Assistance
Dr. Teresa Mandrachee and Staff
Compassionate Care Veterinary Hospital

Dr. Mandrachee and her staff have exemplified best practices for “job carving” (adding and taking away different job duties to allow a person with a disability to be successful in the job).
Deb and Rick Stranton
USA Custom Pad

Rick and Deb Stranton have been extremely accommodating and supportive of an employee with a disability, going well beyond expectations.
Outstanding Fundraising Support
Bob Dizer Classic Golf Tournament
Proceeds of this annual event, held in memory of Bob Dizer, a person with a spinal cord injury, have gone to agencies like STIC for many years. They have also made donations to several families in the community that are coping with the life-altering event of aiding a family member who recently had a spinal cord injury. And they’ve awarded $200 scholarships to seniors at Owego Free Academy and Tioga Central Schools who are pursuing careers in the field of disabilities.
Outstanding Volunteer Service
Steven Brozost
Steve tirelessly works with, and mentors, people coming out of nursing facilities, and assists with training CDPA consumers on how to manage attendants.

Deaf News


by Jonathan Dollhopf

On June 27-30, 2008 the First Annual Deaf Bilingual Coalition (DBC) Education Conference was held in Milwaukee, Wisconsin at the Hyatt Regency. I attended this historic event and would like to share the experience with you.

First I would like to thank D.E.A.F (Deaf Equality Advocates for Freedom), our local Deaf advocacy organization, and other individuals for their contributions. Without their support, I would never have been able to go and be a part of this historic event.

The conference was attended by more than 600 people of all ages from all over the USA and other countries including a large contingent of Canadians. The attendees were a diverse group, both Deaf and hearing. However, they were drawn by what they held in common, a belief that sign language is the natural birthright of all Deaf children.

For two days, the DBC offered wonderful presentations, conducted by scholars in the fields of American Sign Language, bilingual-bicultural studies, and early-language acquisition. The keynote presentation, “Early Hearing Detection and Intervention, Deaf Babies, and Language Development: Where Have We Been and Where Are We Going?” was given by Dr. Bobbie Beth Scoggins, President of the NAD (National Association of the Deaf). Some of the presentations were:

Dr. Barbara Kannapell: Bilingual Education of Deaf Children
Dr. MJ Bienvenu: Bi-Lingualism: Theories and Practice
Dr. Patrick Boudreault and Dr. Genie Gertz: The Emancipation of the Deaf World from Audio-Centric to Visual-Centric Values
Dr. Marlon Kuntze: The Story behind Learning to Read

What made these presentations so unique is that the presenters were Deaf people just like me. Seeing all of these highly educated leaders of the Deaf community come together in support of a cause we Deaf people feel so strongly about, left me without words and filled with pride. They were extremely intelligent people and their presentations were so powerful that our jaws dropped to the floor. The conference was a wonderful counterpoint to another event taking place right next door.

When I got to the airport in Milwaukee, I hurried down to the escalators to pick up my luggage. I looked at the tracker and it said, “Milwaukee welcomes A.G. BELL.” I felt a knot developing in my stomach. Of course I knew that the DBC conference was being held concurrent with the Alexander Graham Bell Association for the Deaf’s 48th. Biennial Convention at Midwest Airlines Center next door to the Hyatt Convention Center. But, where was the sign welcoming us to Milwaukee?

Most people know little about Alexander Graham Bell except that he invented the telephone, which is not exactly true, but his activities in eugenics and his fanatical dedication to Oralism are almost completely unknown. A.G. Bell, his organization and the oral-only movement have been a source of frustration, alienation, and misery, suffered by generations of deaf children. These two divergent conferences so close together gave us the opportunity to openly oppose an adversary that has been plaguing us for 118 years.

During noontime rallies on Saturday and Sunday, we carried signs, placards, and flags and marched around the block, stationing ourselves across the street from the hotel where the A.G. Bell Convention was in progress. A huge boldly lettered 30-foot banner had been hung on the side of a trailer: “A.G. BELL, TEAR DOWN THIS WALL! Let All Deaf Children Sign!” The DBC Core Team members addressed the crowd, focusing on the crucial importance of giving deaf babies and young children access to ASL that A.G. BELL has been fighting to deny them for 118 years. A.G. Bell attendees watched from the hotel windows as we marched and chanted around the block.

The conference was a success and I felt so proud to be part of the historic event. I came home with a tremendous amount of information and a tremendous sense of responsibility to carry on the DBC mission for deaf children’s future. Since I came back from the conference many people have asked me to describe the experience. It is hard for me to put into words. While I was there I had an opportunity to chat with John Egbert, DBC founder and the author of MindField. He was a very humble person and easy to talk with. What is so unique about him is that he grew up orally until he entered Gallaudet College in the 60s, where he first learned ASL. According to Mr. Egbert, ASL changed his life and he was finally able to have free “normal” interactive communication with another human being. Yes, that was the exactly how I felt. As soon as I finished talking with him, he sat back and he looked like he was so tired. I asked him, “Are you tired?” He responded with a smile, “No, I’m in awe.” He said he couldn’t believe this was really happening. I totally agreed with him. I think that might be the closest I can come to explaining what it was like being there, AWE!

Community Programs

New On-Line Public Transportation Resource

by Delana Spaulding

The Rural Health Network of South Central New York, Inc., with support provided by the Community Foundation for South Central New York and the AmeriCorps National Service Program, has developed an online directory of ground transportation services available in Broome and Tioga County. Transportation providers that meet individualized needs are identified using specific search criteria—township of departure, type of service, and service options. Fare information is provided.

This program is the first on-line, interactive directory to provide information on oxygen tank permissibility, a description of Medicaid transportation services, and comprehensive information for transportation services in the Southern Tier.

While the rural population faces various transportation hurdles—the ever rising cost of gas, costly car maintenance, extended travel distances—transportation is also increasingly important and becomes more challenging over time for the elderly members of the community. Nearly one-third of Broome County’s seniors live alone. In Broome County and the City of Binghamton, 20% and 32% of senior households, respectively, do not have access to a vehicle. Physical disability or a decision to stop driving leaves many elderly individuals less mobile, increasing their risk of poor health and isolation. Maintaining good health for seniors is often dependent on reliable transportation to and from health care providers’ offices.

For more information, please contact Delana Spaulding at (607) 692-7669 or refer to the Transportation section on the Rural Health Network of SCNY website:

Southern Tier Asperger’s Syndrome Support Group Formed

by Bob Deemie

Autism spectrum disorders (ASDs) are becoming more and more recognized these days, and there is an increasing rate of diagnosis for ASD. In fact, autistic disorders are the fastest-growing group of serious developmental disabilities in the US. Currently one out of every 150 children is being diagnosed with an autism spectrum disorder; one in 94 boys is being diagnosed with an ASD. Although ASDs are four times more prevalent in boys than girls, this does not mean the challenges for boys and men are lesser than the challenges for girls and women. There are specific challenges for all of them—men and women, boys and girls. These challenges, both for the persons who have autism spectrum disorders and for their families, can often be numerous and overwhelming.

A subset within the autism spectrum disorders is called Asperger’s Syndrome (AS), which does not always get the notice it deserves. A person with AS develops with no noticeable delays in speech; however, any combination of the many other characteristics of autism can be present. The AS person will appear outwardly normal; yet when observed for a period of time, they will exhibit behaviors, mannerisms, and patterns of speech that make someone with Asperger’s Syndrome stand out from their peers. Someone with AS has a slower development in the area of social communication; for example, they may have difficulties in making eye contact and understanding body language. The AS person may also have problems with sensory integration; an example might be where someone with AS can’t stay in a room full of people because the stimulus is overwhelming:; they cannot handle the noise, or their personal space needs are not being met. This may lead the person with AS to have high anxiety and panic attacks.

Autism spectrum disorders were not officially recognized until 1994. Because of increased awareness of the prevalence of autism, many supports and programs have been put into place to help those with autism spectrum disorders. These supports have been primarily targeted at children, and autistic adults have often been lost in the shuffle.

In 2007, two local families who have adult sons with Asperger’s came together to form the Southern Tier Asperger’s Syndrome Support Group to address the needs of autistic adults. Our goal is to provide a comfortable environment where “Aspies” (a nickname for those with Asperger’s) and their families can give mutual support, learn from one another, and have some fun while growing. Our target group is somewhat narrowly defined as persons over the age of eighteen with Asperger’s syndrome or high-functioning autism, along with their families and close friends. We’re not yet a large group, but our service is important and our goals are ambitious. As the group grows, our goals will broaden to include more social activities, practice in life skills, public education, and other topics of interest.

We need the participation of more people in our target group; however, in many cases persons who have Asperger’s Syndrome don’t realize that they have it. Typically these are people who have been seen as odd or eccentric, with some quirks that set them apart; they may fit fairly well into society, but may still feel apart from it. Such a person does not have to join our group just because he or she is different; but maybe they would like to know more about themselves, or could find some explanations for some “interesting” things they have done during life. They may be able to help us by teaching us about how they cope.

Perhaps as you read through this article, you may find yourself wondering whether you might have Asperger’s. People with AS can differ greatly, but typically have difficulties with:

  • understanding social rules
  • following and participating in conversation
  • making eye contact
  • touching and being touched, and forming friendships
  • understanding another person’s point of view, feelings, body language, and facial expressions
  • dealing with their own feelings

In addition, they may have:

  • a need to follow a rigid schedule or routine
  • a tendency to take words literally
  • highly-developed special interests. They may learn all they can about a particular topic; they can go on and on talking about their special interest, driving other people to distraction.

Those with Asperger’s syndrome generally have normal or above-normal intelligence, often along with a keen sense of humor. With their ability to think outside the box, they often have very creative ideas and solutions to problems. Some people of genius or of great accomplishment have displayed characteristics of the condition, including Thomas Edison, Albert Einstein, Thomas Jefferson, Wolfgang Amadeus Mozart, Woody Allen, Bill Gates, and Steven Spielberg. Fictional characters can show Asperger’s traits, sometimes exaggerated for comic effect: Sheldon on “The Big Bang Theory”, Mr. Spock on “Star Trek”, and Sherlock Holmes are good examples.

AS is described as a “disorder”, but we in the local support group do not think of it in these terms. We do not strive for a “cure” or for “rehabilitation”. We do generally have the need to learn new behaviors and coping mechanisms for better interactions between us and other people. High on our group’s list of goals is public education, because society (a) needs to be more informed about those with Asperger’s Syndrome, and (b) needs to allow for better accommodation for people with AS during job interviews, in the workplace, and elsewhere.

As a general rule, a person with Asperger’s Syndrome wants to become a greater part of society and have close interpersonal relationships. However, this can’t always be accomplished because of misunderstandings between us and those around us. Overcoming this barrier is one of the reasons for educating the public about the syndrome, both from our first hand experience and from the research/academic knowledge base. People often focus on the weaknesses and “disabilities” of persons with Asperger’s; however, we have many strengths. Instead, if people foster these strengths, we can be very productive members of society. Through education, we can foster this approach in those around us and the general public.

The group meets the third Saturday of every month at Wilson Hospital in the Picciano Building 4th. floor conference room. If you have any questions or would like to know more about the group, you can check out our website at, which lists contact persons and meeting times. If you don’t have Internet access please contact Robert Deemie at 724-2111 (voice/TTY) or you can email at: Those who would like to join our group are encouraged and family members or close friends are also encouraged to attend.


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Fall 2008
Issue No. 92