AccessAbility

by Maria Dibble

Broome Developmental Services Director Carl Letson told a Binghamton Press & Sun-Bulletin reporter that abuses uncovered by the New York State Department of Health (DOH) at Broome Developmental Center (BDC) were “ mistakes” that didn’t justify firing. “Our purpose is not to just get rid of people who have made a mistake, ” he said. “That’s what happens most times. People just make a mistake.” The mistake he’s referring to is ongoing physical, verbal and psychological abuse of people with developmental disabilities living at BDC: incidents so serious that BDC has been prohibited from taking in any new people for almost a year, they’ve put dozens of employees on “ administrative leave”, and at least two lawsuits have been filed recently against them for abuse and constitutional violations.

If a teacher’s assistant beat up your nondisabled child, would you be satisfied if the principal said, “The assistant just made a mistake”? Was the Catholic Church’s policy of “retraining” and “reassigning” priests who sexually abused children right or acceptable? If not, then why is it ok when people with disabilities are the victims?

DOH found that a worker encouraged a resident to attack another resident. That makes the worker an accessory to assault and battery. Supervisors knew about it and didn’t act; they are accessories after the fact. People asked why these employees weren’t fired. We should be asking, why weren’t they prosecuted?

BDC is an institution operated by a state agency, Broome Developmental Services (BDS). It is a place to “reside”, but not “live”, if living means freedom to choose and control your own life, to go where you want to go, be with whom you wish to be with, and sleep-in once in a while if you feel like it. That control is given to others who have power over you and treat you as though you are invisible. And you certainly are invisible to the community.

Abuse of people with disabilities who are hidden away from public view is frequent. It’s usually considered a minor regulatory issue, not the major crime that it really is. It happens everywhere, including here in NY. It happens in all types of institutional and segregated settings. There is no such thing as an organization that operates segregated programs that has a “different ” or “better” attitude about people with disabilities. The attitude that it is ever proper to lock up and hide people with disabilities from the light of day and access to the community is the problem here.

Jonathan’s Law was passed in NY as a result of abuses suffered by a child with developmental disabilities while he was in a segregated residential school. The local OMRDD officials, who had oversight responsibility, conducted a self-serving investigation that swept the truth under the rug in order to protect the school. The state’s Commission on Quality of Care conducted a far more cursory “investigation” of the local OMRDD office. Documents showed that CQC investigators assumed from the beginning that Jonathan’s parents were lying about the events, and that they also assumed that they should not second-guess an investigation already conducted by OMRDD. Later, Jonathan died from physical abuse by two people working at the developmental center (DC) in which he was housed. The death occurred while he was being transported and inappropriately restrained. I wonder if Mr. Letson would call these “mistakes” as well?

At an institution similar to a DC for people with developmental and mental disabilities in Texas, residents were forced to be part of a “fight club” by night shift workers, who made cell-phone videos of the sessions, including “play-by-play ” announcing by staff. Residents punched and shoved each other, and in one video, a resident raised his hand in “ victory ” after a “bout”. Day shift workers never reported the many bruises they saw on these residents, so the abuses were allowed to go on for more than a year, several nights a week. They might never have been discovered if one of the employees hadn’t lost the cell phone; it was found by someone who gave it to police. The videos are an example of appalling conditions at institutions in TX, but this is the same sort of thing that BDC employees were caught doing.

DOH reviewed only a small sample of residents in their audit at BDC; for every problem found there are dozens they didn’t see. People get roughed up at the DC more often than you think. “Minor deficiencies”, like billing for but not providing services, failure to respect residents’ civil rights, broken equipment, or unsafe staff levels, happen routinely. As one anonymous staffer commented, “When the DOH comes in the center puts on a ‘dog and pony show’. They change the actual routine for one that looks much better.”

STIC works with many OMRDD clients who live in BDC and other segregated facilities operated by BDS. Our records document serious incidents in which BDS employees have abused, neglected, and/or violated the legal and civil rights of dozens of people. For example:

• A BDC resident used an audio recorder to record staff who were verbally abusing and ridiculing residents. The staff confiscated the device temporarily, and never returned the recordings.
  
  
• A relative of a BDC resident has documented numerous cases of mistreatment of a family member by facility staff, and often calls the unit where the family member lives. One morning, during such a call, this family member heard a staff person literally screaming at their relative. The family member asked the employee on the phone who was screaming; the employee denied that there had been any screaming. This relative had to speak directly to a high-level BDC official to get the staff disciplined for verbally abusing their family member and lying about it.
  
  
• A person who was sent to BDC after getting in trouble with the law was so badly mistreated there that the parole officer told the staff that their attitudes and behavior were destructive, then terminated the person’s parole and took them to jail in order to get them away from the toxic environment. The person is getting more effective mental health treatment, and making more progress on improving their behavior and skills, in jail than they did at BDC.
  
  
• A person left a BDS group “home” to live in their own apartment. A staff member from the facility harassed the person; she drove past their house regularly, called the person to her car when she saw the person outside and made threats against the person, and reported what she had observed to other staff members in violation of the person’s privacy and laws and regulations that protect it.
  
  
• When our Guest Viewpoint in response to the BDC scandal appeared in the newspaper, one of the people who commented on the website revealed that they had detailed information about another person we work with that they could not have had unless they, or some other BDS employee, had violated that person’s privacy rights. (That case involved a person who, against our advice, exercised their legal right to leave BDC and live in their own home. Because BDC staff disapproved of the person’s choices, in defiance of their legal and professional obligations they refused to arrange for even the most minimal community supports for the person, and the person went through some very bad times. However, with our ongoing assistance—and no help from BDS—this person now has a stable life in the community.)

And yet it’s not just about the developmental disability service system. These attitudes cut across all systems that provide services to people with all types of disabilities.

Last year it was found that Texas had, for years, shipped people with intellectual disabilities to a “company town” run by a turkey processing company in Iowa. They were locked in a filthy shack with a leaky roof, no heat and broken plumbing when they weren’t working in the factory. The company paid them below minimum wage and then took the money back for room and board. This scandal barely made the news. Although crimes were committed, including forced labor, kidnapping, abuse and fraud, no criminal charges were filed. The case went to civil court. At a Senate hearing, Senator Tom Harkin noted that it’s common across the US for employers to get away with violating federal minimum wage laws when hiring people with disabilities.

Recently a California disability rights group reported on abuse of nursing home residents. People were beaten, sprayed with cold water, sexually assaulted, their wheelchairs slammed into walls. These acts were handled as “compliance deficiencies”; there were few firings and no criminal charges. Some may say that this was a nursing home, not a DC, and not even in our state. Nursing homes are institutions and the same abuses occur in them as in DCs and vice versa. In recent years nursing homes in our region have been cited for the same types of violations. We’re currently working with someone who, due to a degenerative disease, had lost some critical self-care abilities. The person had to enter a local nursing home temporarily to get physical rehabilitation services, as well as assistance with self-care while being evaluated for new technology and services that would help the person return home. However, once the person was in the nursing home, they were left in bed with no rehab services provided and no work on arranging new supports done. The person had to demand a meeting with the facility director and force her to provide the services that they had been admitted to the facility to receive.

Children with disabilities are physically or psychologically abused, or unnecessarily “restrained”, in segregated public school settings. As reported nationally recently, children have been seriously injured, and sometimes killed. Law enforcement rarely gets involved; guilty staff are “retrained” or “reassigned”. Our own staff have witnessed abuses and tried to hotline them, but since the incidents took place in school, the hotline won’t take the call and often the police refuse to investigate. The school will investigate itself, and of course you can guess where that leads.

No “plan of corrective action” can prevent these outrages. There is an embattled, fatigued staff “culture” in segregated facilities and programs that knows people “on the outside” don’t understand their jobs. When bad stuff happens, they circle the wagons for defense.

We used to think that locking people with disabilities up in places where the general public can’t get to them would keep them safe. But now we know those places aren’t safe. Despite Letson’s most recent remarks in the Press & Sun-Bulletin, institutional culture cannot be changed. It is part and parcel of a workplace environment that is designed for the convenience and efficiency of paid staff whose primary job is to follow minimum standards of “quality ” to keep people with disabilities alive. Although OMRDD claims that it provides services to prepare people living in its facilities to move to more integrated settings, just like the local nursing home mentioned above, it does not do so unless forced. A recent expose of OMRDD fiscal practices explains why; the agency needs to keep people in these facilities to justify enormously inflated Medicaid rates that keep the agency afloat (see OMRDD Faces Probes of Fiscal Improprieties and Civil Rights Violations).

It is much safer for people with disabilities to live and work among average citizens—people who aren’t part of institutional “culture” with its separate, lower standard for how people with disabilities should be treated— people who will call the police and report a crime when they see one, instead of making excuses for “mistakes” and “ training deficiencies”.

According to NYS, it costs about $1.7 million annually to keep someone in BDC. For half that, we could provide a real home and individualized 24/7 support to help that person live, work and socialize in a truly safe place—the community. In fact, with that kind of money we could serve at least five people with 24/7 needs and probably still have a bit left over.

This editorial describes only the tip of the iceberg of the daily psychological and physical abuses suffered by children and adults with disabilities when they are in segregated settings. Whether it is in a school, group “home”, nursing “home ”, developmental center or any other segregated environment, the same types of abuses occur over and over again. In some cases they are reported and people “counseled” or reprimanded, in other cases administrators, abuse hotlines or police won ’t even take the reports. The perpetrators are sometimes “reassigned” (and sometimes only temporarily), rarely fired, and almost never tried or convicted for their obvious crimes.

I’ve been chastised because I don’t mention all the well-meaning and dedicated workers who are also employed in these settings (and there are many). But when a husband is convicted of abusing his wife, or a mother convicted of abusing her children, do we talk about how many well-meaning husbands and mothers are out there? No we don’t, because the ones that are loving and well-meaning are doing what they are supposed to do and what society expects of them.

These well-meaning, dedicated workers could continue to do great work by providing support to people with disabilities in integrated individualized community settings. And in those settings, those other workers, who abuse and neglect the people in their charge, and the supervisors and administrators who cover for them, would be exposed to the light of day and weeded out, instead of being “ counseled” for “making mistakes” and sent back to continue the abuse.

Let’s not throw up smoke screens so we don’t have to face the facts as they are. Abuses exist, they happen and they are usually either covered up, rationalized away, or blamed on the victim’s behaviors. They seldom are prosecuted and presented to the public as the vile criminal acts that they are. Let’s stop feeling sorry for the wonderful workers I didn’t mention because I didn’t have the space in my Guest Viewpoint. Those workers have powerful unions, agency administrators, and politicians defending them already. Let’s instead put our focus and our outrage where it belongs, with the people with disabilities who almost never get justice!

A series of articles in the Poughkeepsie Journal this summer revealed that OMRDD (now OPWDD) is facing investigations by federal and state auditors for potentially fraudulent Medicaid billing practices and systemic violations of the civil rights of the people it serves.

The Journal reported that OPWDD is getting reimbursements for developmental center (DC) placements that are much higher than their actual cost. OPWDD officials admitted that only about one third of the $4,556 daily rate it gets for each person in a DC is actually needed to pay for DC services. The rest of the money, officials claimed, is used to fund essential “community-based” programs.

Advocates and former OPWDD officials alike argued that this extra money is a big reason why OPWDD dropped its plan to close all of the state’s DCs at the end of the 1990s, then resumed it at a very slow pace while continuing to use the large institutional facilities for other programs.

Along with the questionable reimbursements, the Journal’s reports described OPWDD practices that violate the Americans with Disabilities Act, and showed that OPWDD officials have misrepresented and misused the “Local Intensive Treatment” (LIT) Unit program that has been taking over empty space at DCs.

The first article, on the reimbursement issue, appeared on June 20, 2010. The second article, which reported that the federal Centers for Medicare and Medicaid Services (CMS) had launched an investigation, appeared on July 16. On June 30, OPWDD Commissioner Diana Jones-Ritter announced she was resigning effective July 16 to take a job as Managing Director of the NYC Metropolitan Transit Authority. The timing of Ritter’s resignation may be coincidental, though giving only two weeks notice is unusual for a high government official. Some commenters noted that the Paterson Administration is coming to an end and officials can be expected to leave; for example, Department of Housing and Community Renewal Commissioner Deborah VanAmerongen resigned in January, and three other highly-placed officials—though not state agency commissioners—left in July. Others speculated that after a term in which her agency endured heavy scrutiny, including a lawsuit regarding operations at two DCs (Taconic and O.D. Heck), a Department of Health investigation of serious improprieties at a third DC (Broome), and several fires at community residences, the CMS investigation was the final straw.

The Journal reported that OPWDD’s $4,556 per-person DC day rate adds up to about $1.7 million per year, and is four times as high as the next-highest such rate in the US. These are Medicaid funds; currently NY gets 62.5% of those funds from the federal government (an increase from 50% was part of the Obama Administration’s 2009 bailout of state governments); the rest comes from NY taxpayers.

In 2008, the University of Minnesota surveyed DC rates. NY was the only state that reported its rate as an average across its DCs and its small, segregated congregate group “homes”. OPWDD denies that its group “homes” are institutions, but apparently reports them as such for reimbursement purposes. According to the Journal, OPWDD Deputy Commissioner James Moran “acknowledged the rate was incorrect and said ‘definitional issues’ regarding institution size may be why.”

In 2005, Paul Castellani, a former Director of Program Research for OMRDD, wrote a book called From Snake Pits to Cash Cows, which demonstrates that a major reason why New York reneged on its plan to close all of its DCs was a reimbursement methodology that the state negotiated with CMS in the late 1990s—a methodology that has resulted in highly inflated rates for DC placements and which explicitly permits the state to use the extra money for other things.

In recent years OPWDD has become dependent on this money, which in 2009 amounted to around $2.48 billion. This means that OPWDD feels compelled to keep people in these facilities purely in order to keep that money flowing. In other words, as AccessAbility has reported many times, the “cash cows” are not the institutions, but people with developmental disabilities themselves. They are herded together and milked for cash in DCs because their value as generators of reimbursement is more important to OPWDD than their actual needs and desires.

On July 13 CMS sent a letter to the NYS Department of Health (DOH), asking the agency several questions about rates for OPWDD facilities. (DOH, the state Medicaid authority, has primary responsibility for rate setting.) The Journal reported the letter asked for “total Medicaid payments and operating and capital costs for each” DC, “and documents showing that New York’s rates do not exceed what’s called the ‘upper payment limit,’ which prohibits payments above a ‘reasonable’ threshold. ‘New York has made assurances to CMS that its ... rates are set at the lower of actual facility operating costs ... and that the level of costs reimbursed does not exceed the upper payment limit,’ the letter said.”

It is worthwhile to note that CMS, which has taken a stern public stance since the issue was publicized, has been complicit in these events. CMS officials stated that they approved the methodology the state uses to set rates, but they do not approve the actual rate. They have refused to say whether they were aware of what the rate actually was prior to the Journal ’s June article. However, both the New York State Medicaid Inspector General and CMS have acknowledged that there has not been much oversight of OPWDD and DOH in this matter.

On July 18 the Journal published an article on OPWDD’s “Local Intensive Treatment Unit” (LIT) system. While focusing on the LIT unit at Taconic Developmental Center, the article described aspects of the system that are common across the state.

OPWDD officials have claimed that these facilities exist to house dangerous criminals — people who have either been convicted of crimes or judged not guilty due to mental defect by a court of law. However, OPWDD refused to freely provide documentation for this claim. Several legal advocates for people with developmental disabilities disputed it; they said that only a small percentage of LIT residents have ever been involved with the criminal justice system and even fewer are court-mandated to be in the facilities. Many in the Taconic LIT were transferred from other state institutions, and some have lived in such facilities for virtually their entire lives, and have never had an opportunity to commit crimes in the community.

The Journal also reported that while LITs are billed as temporary, transitional training facilities for people who will move to integrated community living, there have been long delays in making such transitions. We at STIC have observed that there are no significant efforts to provide training or assistance for such transitions at the Broome Developmental Center (BDC) LIT.

The Journal filed a Freedom of Information request to force OPWDD to release statistics on the alleged “criminal behavior” of LIT inmates. These showed that only 17% were referred from the criminal justice system and that 12% are there for “elopement”—that is, simply trying to leave institutional settings that they don ’ t like. When pressed, an OPWDD official admitted that some people in the LITs have shown no evidence of criminal or dangerous behaviors, and he said that people who want to leave can follow a legal process to be released. However, STIC has observed that BDC actively obstructs such efforts by LIT residents and refuses to provide integrated community supports to them when they do leave, even though they are eligible for them.

A former director of the Taconic facility, Hollis Shaw, told the Journal “We should be ashamed in New York State that we ever did that. I don’t think that’s a sound thing.” The Journal reported that “Shaw, who retired six years before the [Taconic] LIT opened but has visited other units, said residents are treated like ‘criminals’ in such places, which he called a ‘political response’ to new tough-on-crime mores.”

The LIT units were created in the early 2000s, on the campuses of developmental centers, and are reimbursed at the same rate as the DCs. OPWDD insists that it will eventually close all of the “developmental centers”—a term that has evolved from referring to a physical facility to meaning one of several institutional programs co-located at large facilities—though according to the Journal only one out of ten currently has an actual closure schedule. OPWDD insists just as emphatically that it will never close all the LITs, or all of its “Multiple Disability Units”, another new type of segregated institutional program that has begun to appear on DC campuses, for people who have both developmental and mental disabilities.

Meanwhile, OPWDD pours millions of dollars into maintenance and improvements for facilities that aren’t being used. For example, over the past five years more than $28 million dollars were spent to repair a power plant, water wells and plumbing, and the roofs of 14 buildings designed to accommodate nearly 5000 residents at the Taconic facility, which currently houses 152 people. OPWDD officials point out that facilities have to be maintained if they are to retain their value, but do not acknowledge that it would be better to sell—or even give away—the facilities to somebody who actually needs all that space and let them pay for the maintenance.

In a case we’ve reported on, DAI v OMRDD, two developmental disability legal protection and advocacy agencies began hearing in 2004 that people in the Taconic and Schenectady facilities who could be served in less restrictive settings weren’t being helped to leave. The agencies investigated, then sued OPWDD in a state court for refusing to release records on these people. The judge ruled against the agencies last October. We aren’t sure if the case is being appealed. However, OPWDD officials acknowledged that releases weren’t going as quickly as they should and have sped up the process—but only for people in the two DCs, not those in LIT units.

They claimed a big reason for the delays was the cost of building new congregate segregated group “homes” to house people being released. Disability advocates have pointed out that people with developmental disabilities can be safely supported in homes of their own, that such individualized integrated supports more effectively involve them in meaningful community activities and relationships, and that they are much less expensive than group “homes”.

OPWDD officials and some provider agency workers claimed that there will always be some people who need to be institutionalized. However, as reported by the Journal, there are currently 11 US states that don’t have any such institutions. There is no evidence that those states are having difficulties. The only evidence of a “need” for such facilities in New York State is financial: these large institutions generate revenue far in excess of their costs, and the extra money is used to support hundreds of smaller OPWDD institutions known as group “homes”.

OPWDD officials say all this extra money has produced the highest quality developmental disability service system in the country. But “quality” means different things to different people. The benchmark of “quality” for OPWDD is the extent to which the system hovers over and restricts the freedom of the people it serves. Although these officials allege that this keeps people safe and treats them more “humanely” than other settings, recent events suggest the opposite (see Deficiencies of Justice). People with developmental disabilities say that their quality of life and ability to be productive community members do not figure strongly into OPWDD’s definition of “quality”.

OPWDD officials claim to equitably support a “range” of services, including integrated individualized supports, but the numbers show otherwise. OPWDD devotes a hugely disproportionate share of its funds to segregated congregate programs, far in excess of the per capita cost differential between those programs and integrated individualized supports. Data provided to the Journal by OPWDD show that the agency currently spends $4.4 billion to keep 37,000 people in “ certified residences” in the “community”, nearly all of which are segregated congregate group “homes” whose residents have little or no meaningful interaction with their families or the surrounding community, while spending just $190 million to provide integrated residential supports to 13,000 people. The differential is about $119,000 per person in segregated settings compared to $14,600 per person in integrated settings, or 800%. National data indicate that integrated services that meet the same kinds of needs for the same people should be between 300% and 500% cheaper than those of equivalent segregated services. These figures are derived from overall spending. As we’ve reported, despite OPWDD claims that it is “transforming” the system, the segregated vs integrated differential for new OPWDD spending in the current fiscal year is about 1800% in favor of segregated congregate programs.

OPWDD officials and apologists for segregation have also raised the specter of disaster for NY’s developmental disability service system if CMS disallows these reimbursements and, perhaps, makes the state pay them back. This appears to be an effort to manipulate public opinion on the issue by painting a picture of drastic funding cutbacks forced by the federal government resulting in tens of thousands of homeless people with disabilities on the streets.

Such an event would clearly violate the ADA as defined by the Supreme Court’s Olmstead decision. That decision requires state governments to flexibly allocate all available funds to ensure that people with disabilities get services and supports they need in the most integrated settings. Individualized integrated services are 3 to 5 times less expensive than equivalent segregated congregate facilities for the same people. STIC does not support compelling the state to pay back funds already spent; this would wreak havoc on a state budget that already faces multi-billion-dollar annual deficits. But OPWDD could face a significant cutback in future Medicaid funds and still provide high-quality services in real integrated community settings to the same number of people. Any refusal to redirect institutional funds to do this, and therefore any “dumping ” that occurs, must be laid at the feet of intransigent state officials—not those of CMS or of disability advocates who have called on OPWDD to do it for the past 20 years.

On July 23, the Journal reported that the NYS Medicaid Inspector General (MIG) is taking over OPWDD auditing functions and that the MIG will also investigate claims that people are not being transitioned to the community and that LIT units are being misused.

Historically, NY’s state disability service agencies have been allowed to audit themselves with no effective review by other authorities, a clear conflict of interest that advocates have opposed for decades. In 2006 the state legislature passed, and Governor Pataki signed, a law that transferred these auditing responsibilities to the MIG, who is now James Sheehan. However, OPWDD and some of the other agencies objected. Pataki, in an act of questionable legality, then stopped the transfer. Language in the state budget bills adopted this June set the transfer to occur in October; however, in the wake of the Journal's expose, it was moved up.

The Journal reported that “Among the issues Sheehan said he wants to explore are allegations [in the DAI lawsuit] that residents have “languished at” the Taconic and O.D. Heck (Schenectady) DCs “rather than being placed in preferred community homes.” Sheehan told the Journal , “How much money we spend is a significant issue. The issue that caught my eye more than that is the legal activity and the issues raised in the lawsuit.” The paper also reported, “the inspector general has broad discretion under law to check for ‘unacceptable practices’ in Medicaid programs that, in the case of keeping people unnecessarily institutionalized, might be ‘inconsistent with what the governing policies are,’ Sheehan said.”

Advocates hoped the investigation would have genuine consequences. Two years ago the MIG released a report that severely criticized OPWDD and the state’s Commission on Quality Care for failing to effectively oversee the Taconic region’s Anderson School and fully investigate the Jonathan Carey incident that occurred there (see AccessAbility, Fall 2008). However, there is no evidence that procedures at OPWDD or the CQC were significantly changed as a result.

As we’ve reported, Broome Developmental Services (BDS) and its parent state agency, the NYS Office of People with Developmental Disabilities (OPWDD, formerly OMRDD) have been trying to build a segregated congregate facility to house eight minor children with autism in our region. OPWDD and BDS kept working on the project even after an official local community planning board, to which OPWDD is supposed to listen, said it didn’t want the facility built.

The facility was first slated for a lot on the edge of a cliff in the Town of Union, but following public objections by the neighbors, BDS acknowledged that the site was unsafe. BDS then tried to locate the facility on another steeply sloping site on Binghamton’s South Side where severe drainage issues have caused local flooding. As a result of those issues, the cost of any facility built on the property would be inflated by several hundred thousand dollars that would not have to be spent if an existing building was renovated or even if a new one was built on a flat site.

BDS’s interest in sloping sites appears to have come solely from the personal preference of an official at that agency who wanted “a walk-out basement with trees”.

BDS’s insistence on building a new facility rather than renovating an existing home appears to originate with Dr. Raymond Romanczyk, Director of the Institute for Child Development (ICD) at Binghamton University. Romanczyk is a practitioner and promoter of a form of applied behavioral analysis known as “direct trial teaching” or the “Lovaas method ”. Although this method has been largely discredited by recent research, and some families have reported that their children were mistreated and their behaviors made worse by ICD, the organization was chosen by OPWDD as a contractor to provide consultation and training for staff at the facility.

BDS and OPWDD officials claimed that the facility will provide a comfortable, “home-like” atmosphere for its residents. However, information STIC obtained from OPWDD through a NYS Freedom of Information Law request confirms that Romanczyk was involved in designing the facility primarily as an experimental environment that is expected to include, among other things, video cameras to monitor the activities of residents throughout the facility. Some of the planning documents we received seemed carefully worded to avoid triggering legal requirements for informed consent for human experimentation, while preserving the essential experimental nature of the project. Use of video cameras to monitor people with developmental disabilities in their residences is an extremely invasive abridgement of privacy rights that is only supposed to be done on an individual basis when necessary to protect a specific person’s health or safety, and must only be approved following careful review by a panel of experts. The documents appeared to have been developed by people who either weren’t aware of this regulation, or expected it to be ignored for the project.

STIC’s FOIL request also included any information on costs and funding sources for the project. The information provided by OPWDD does not clearly lay this out. The reason may lie in questionable rate-setting and reimbursement practices at OPWDD that are being investigated by the federal government and NY’s Medicaid Inspector General (see OMRDD Faces Probes of Fiscal Improprieties and Civil Rights Violations); the agency has a motivation to obscure its fiscal practices. A State Comptroller’s office investigator told STIC that OPWDD has also resisted providing useful information on the project to that office.

Following a public meeting last December at which South Side neighborhood residents pointed out the flooding problem and attendant inflated costs of the new site, and BDS Director Carl Letson refused to provide information on the project’s costs or funding sources, Letson insisted that the agency would proceed with the project, if not at that site than elsewhere.

However, on July 20, one of the residents received an email from Letson which stated, “After careful consideration, . OPWDD has determined that it would be fiscally prudent to defer establishing State operated homes for adolescents with autism spectrum disorders (ASD) and to identify a not for profit service provider to develop these homes. Therefore, the OPWDD will no longer be pursuing this project on Woodland Avenue.” James Whitehead, an official at the OPWDD Central Office, followed up with another email stating “As Carl’s e-mail indicates, we’ve made a decision not to move forward on the Woodland Avenue site. I hope that reduces your concerns about flooding.”

The wording of these emails may be significant. First, Letson refers to “State operated homes” in the plural and uses the term “defer”. This probably means the entire project (which was to build four such facilities in different areas of the state) has been put on hold. “Fiscally prudent” implies a budget review. It may be the one that the Comptroller’s Office was trying to conduct. Because the email is dated a week after the federal Centers for Medicare and Medicaid Services (CMS) launched its investigation of OPWDD’s fiscal procedures, it may also be related to that. So the project may go from being “deferred” to being cancelled at some point in the future. In any event it seems clear that the South Side lot will not be reconsidered for the project.

Even if OPWDD does resume the project and seek bids from not-for-profit providers, the entire planning and approval process will have to be re-started from scratch. Any agency in our region that bids on the project will be subjected to the same level of advocacy and scrutiny that BDS has undergone. Advocates learned in July that the NYS Medicaid Inspector General is investigating not only OPWDD’s fiscal conduct, but also its preference for unnecessarily restrictive and segregated residential programs. Under these circumstances, it may be that no organization will want to take on such a controversy. But we’ll keep you informed of developments.

This summer serious incidents involving mistreatment of people with disabilities by NY’s prison system came to light, demonstrating once again that closed institutions are dangerous to people with disabilities.

In June two adults with mental health disabilities committed suicide in NY State prisons. Amir Hall died at Great Meadow Correctional Facility; Dana Countryman died at Bedford Hills. Hall was in a type of solitary confinement called a “Special Housing Unit”, or SHU, when he died. Countryman had just been returned from the state’s “forensic” hospital, Central New York Psychiatric Center, where she had been transferred for treatment for an acute mental health crisis; she was under review for a potential SHU placement when she died. Both inmates had been convicted of non-violent property crimes and were serving relatively short sentences.

Most criminal behavior on the part of people with mental illnesses can be directly traced to their disabilities. Typically these crimes involve substance abuse, or theft and robbery to obtain money to buy drugs. In most cases these people are “ self-medicating” because they don’t have access to effective community-based supports.

According to the NY Association of Psychiatric Rehabilitation Services, “In 2004 the Correctional Association of New York reported that 40% of prisoners with mental illness in disciplinary lockdown reported acts of self-harm during their incarceration and that mental health programs in prison were understaffed and under-resourced. As a result, mental health clinicians and the Central New York Psychiatric Center were, and continue to be, overburdened.”

After a multi-year fight with the legislature and two Governors, in 2008 NY disability activists succeeded in getting a law enacted to require that prisoners with mental health disabilities can’t be placed in solitary confinement and must get effective psychiatric treatment instead. However, the law won’t take effect until next year—too late to save Hall and Countryman, and, perhaps, others.

Meanwhile, in an agreement worked out between New York State and federal officials after the federal Justice Department threatened to take over the state’s entire juvenile justice system, four of the state’s youth prisons were placed under federal oversight in July. Guards at the facilities had been regularly abusing the inmates, most of whom have developmental or mental disabilities, resulting in broken bones, shattered teeth, concussions and other serious injuries.

On June 23, the US Second Circuit Court of Appeals lifted a stay on federal District Court Judge Nicolas Garaufis’ order that New York State must move 4500 people with mental disabilities from adult “homes” to integrated individual supported living settings within three years.

We’ve reported the details of this case several times ( AccessAbility Spring 2009, Winter 2009-10, Spring and Summer 2010). Adult “homes” are large segregated congregate facilities that house mostly people with mental illnesses. In September 2009, Garaufis ruled that NY has violated the Americans with Disabilities Act requirement that people with disabilities receive essential supports and services in the most integrated settings by failing to provide supported living services to the residents of these facilities.

The landmark ruling upheld four important points of law: “most integrated setting” really means “most”, not just any setting that has some integrated elements; “institutional settings” are not defined by their size but by the limits on freedom of action, privacy, and opportunities for meaningful community involvement that they impose; because the state is providing segregated congregate services to the affected people that are more expensive in the aggregate than integrated supports, the state cannot cite cost as a defense; and when a state already provides the more integrated services to some people but not to everyone who needs it, the state cannot use a “fundamental alteration” argument as a defense.

NY appealed the decision and was granted a temporary stay of Garaufis’ order, which directed the state to carry out the transfer of adult “home” residents under supervision of a “special master”, by a single Circuit Court judge. However, according to the New York Times, a “two-judge panel” of the Circuit Court lifted the stay.

This means that the state must immediately begin working with the special master to carry out Garaufis’ order, even though the state’s appeal has not yet been decided. Typically courts only do this when there is a likelihood that an appeal will be denied.

A spokesman for Governor Paterson told the Times that he was considering “next steps.” At press time there had been no further public announcement. It is unclear whether Paterson has any legal avenues available other than to wait for the full court’s decision on his appeal.

Despite the best efforts of advocates, the NYS Legislature passed a bad bill affecting private medical insurance coverage for people with autism.

A very damaging provision of the original bill, which would have removed disability non-discrimination language from state insurance law, was cut.

However, it still holds required coverage for autism-related medications and treatments to a much higher standard≸“ evidence based and clinically proven”—than any other treatments for any other disabilities or conditions in NYS insurance law. It also creates a commission that includes OPWDD to determine which treatments must be covered. OPWDD has a very narrow view of what is appropriate for people with autism and the agency appears to be overly influenced by practitioners of a discredited form of applied behavioral analysis called “direct trial teaching” or the “Lovaas method”. However, the “evidence based and clinically proven” language trumps any list of treatments the commission might develop. Since there is no such thing as an autism-specific treatment for which there is a scientific consensus, the bill will not really require insurance companies to cover any such treatments. The entire bill is a loophole.

STIC has learned that the bill was written largely by an insurance industry lobbying firm, Manatt Health Solutions. The bill was opposed by virtually all organizations that represent people with autism and their families, except for Autism Speaks. An insider at that organization said that Autism Speaks paid Manatt nearly $100,000 to lobby for the bill. It has also been reported that much of Autism Speaks’ funding comes from insurance companies or their lobbyists.

On June 8, 2010, 25 ADAPT members sneaked into a conference of progressive activists in Washington, DC and noisily confronted US House of Representatives Speaker Nancy Pelosi for failing to support the Community Choice Act (CCA). The protesters chanted loudly and held up banners throughout Pelosi’s speech, forcing her to shout over them. Security guards offered to remove the protesters but Pelosi declined, saying she supported their right to free speech.

The CCA would require that any person eligible for Medicaid-funded nursing facility, ICF/MR, or psychiatric hospital placement be permitted to have those funds used for integrated individualized supports in their own homes instead. Unlike the “ Community First Choice” provisions in the recent federal health reform bill, which allow states to “opt in” to provide more home and community-based services, CCA would require all states to offer the option; the choice would be the person’s, not the state’s.

Some news sources reported that Pelosi said she supports ADAPT’s position. However, Pelosi has refused to meet with ADAPT to discuss the bill, nor has she taken any meaningful public actions to promote it or move it forward in the House, where it has been stalled in committee since March 2009. The bill currently has 129 House sponsors, but Pelosi is not one of them.

(from a NY Association on Independent Living (NYAIL) press release)

Governor Paterson once again failed to support the rights of New Yorkers with disabilities by vetoing three bills. The vetoes come on the heels of the 20th. anniversary of the Americans with Disabilities Act (ADA), for which the Governor issued a proclamation to designate July 26 as Americans with Disabilities Act Awareness Day and “recommit [the State] to realize the promise of the ADA by reaffirming its principles of equality and full inclusion.”

“We thank the sponsors of these bills, Senator Squadron, Assemblymember Bing, Senator Huntley and Assemblymember Paulin for their efforts in support of disability rights by getting these bills in front of the Governor for signature,” said STIC Executive Director Maria Dibble, who is also the Chairperson of NYAIL. “We remain extremely disappointed by the actions of Governor Paterson, an individual with a disability himself, and his lack of leadership for New Yorkers with disabilities.”

Two of the bills would help address the housing crisis for people with disabilities in NY by ensuring access to accessible, affordable and integrated housing options that meet their needs. A.10689/S.7613 would make discrimination by landlords based on a tenant’s source of income illegal under the NYS Human Rights Law, whether they receive Social Security Income, Social Security Disability Insurance, Public Assistance, child support, Veterans benefits, Nursing Home Transition and Diversion (NHTD) waiver and Traumatic Brain Injury (TBI) waiver funding, or federal Section 8 housing subsidies. A.9757/S.7800 would incorporate the housing provisions of Section 504 of the federal Rehabilitation Act into state law, empowering state and local agencies distributing federal funds to enforce these requirements, thereby easing the housing crisis by ensuring more accessible affordable housing that meets the federal set-aside requirements.

“The Medicaid waiver programs, which provide housing subsidies, continue to be stymied in their effort to place people in stable and safe housing in the community while landlords have the ability to refuse to accept the housing subsidies provided under the NHTD and TBI waivers,” said NYAIL Executive Director Melanie Shaw. “By vetoing A.10689/S.7613, Governor Paterson is costing the state money by decreasing the effectiveness of the state’s de-institutionalization efforts, thereby compromising NY’s compliance with federal law and the Olmstead decision, which requires that people with disabilities live in the most integrated setting appropriate to their needs.”

Another vetoed bill, A.781-B/S.5396, adds language from Title II of the ADA to State Human Rights Law. This bill would clarify the obligations of government officials and strengthen civil rights protections for people with disabilities. Title II protects people with disabilities from discrimination on the basis of disability in services provided by public entities, including state and local governments. In the proposed bill, public entities would be required under state law to make reasonable accommodations—the same accommodations already required by federal law—and individuals with disabilities would gain critical access to the administrative enforcement mechanisms through the State Division of Human Rights. An identical bill was passed unanimously by the legislature last year and vetoed by Governor Paterson.

The NYS 2010-11 budget theoretically cuts $775 million worth of health care spending. The drawn-out drama of its enactment process was heavily publicized; there’s no need to rehash it here. What’s important right now is that many—but not all—of Governor Paterson’s proposals that would have been harmful to people with disabilities were rejected. What will be important later is that this was achieved in large part by questionable accounting dodges, and the state will almost certainly face the same choices in the next budget round.

Here are details on the most important issues.

Long Term Care

All measures related to capping Personal Care services were rejected. So was a proposed doubling of the homecare “ assessment”, which is a tax on providers of homecare services. The “assessment” remains at 0.35% of the public funds that these providers, including STIC, receive. This is a legal way for the state to get federal reimbursement for more Medicaid spending than actually occurs. A proposed increase in a similar tax on nursing facilities was also rejected.

The governor’s proposal to change the rate-setting methodology for Certified Home Health Aide programs to one that could have created disincentives for making the service available was also rejected, but a “work group” is still meeting to find another way to do this.

A demonstration program wherein counties would use integrated community-based long-term care services to achieve reductions in nursing facility admissions was approved.

Two positive changes related to eligibility determination were approved. People on the Long Term Home Health Care Program Medicaid waiver (mostly elderly people whose conditions are not likely to improve) will no longer have to be reassessed every 120 days; they can go 180 days instead. And people who use Medicaid-funded community-based services will be able to personally attest that their assets do not exceed Medicaid limits when they are up for recertification. (There’s an effort on the federal level to get these asset limits, which are absurdly low and punitive for people who, for example, are trying to save for retirement, raised.)

A proposed “nursing home quality incentive pool” was rejected. It would have given extra money to nursing facilities that improved their performance on certain “quality indicators”. Although it is true that the quality of supports and services in many nursing facilities is low, and in some cases, dangerously low, our position is that any additional funds available for long-term care services should be used to expand and enhance integrated community supports. The best way to improve “quality” for people living in nursing facilities is to get them out of those places.

A proposal to remove payments for medications from the bulk rates the state pays to nursing facilities was approved; drugs for nursing facility residents will be paid for on a fee basis like they are for other Medicaid recipients. This is alleged to save money by subjecting these costs to discounts applicable to other Medicaid prescription coverage programs. We support it because it will enable more accurate nursing facility vs integrated supports cost comparisons.

On the Downside

Paterson’s proposal to again provide no homecare “trend factor” was approved. This is kind of like a “ cost of living adjustment” (COLA) except that it’s not cumulative. For example, if in 2009 the trend factor was 4% (hypothetical, not actual, number), then when the trend factor is eliminated (0%) in 2010, that doesn’t mean we go back to the base rate plus the 4% we got in 2009; it means we go back to the base rate that existed before any trend factors were applied. The trend factor was also eliminated for nursing facilities.

The state has in the past also provided a COLA for a variety of human service programs, including some that STIC contracts to provide. This COLA was eliminated.

A proposal for a “Voluntary Residential Health Care Facility Rightsizing” demonstration project was approved. This project will allow nursing facilities to convert some of their “beds” to so-called “assistive living programs ”. Although the quality and nature of assisted living programs varies widely, in many Medicaid-funded facilities they are basically just like nursing facilities except they provide even fewer in-house services and safeguards than those facilities. They are still undesirable segregated congregate residential programs—just cheaper to operate.

The Expanded In-Home Services for the Elderly Program (EISEP) was cut by $2 million. This is another form of home-based personal assistance services.

Rates for Medicaid Service Coordination provided to people on OPWDD’s Home and Community Based Services Waiver will be cut. This will be “made up for” by allowing larger caseloads for service coordinators, who supposedly will have less work to do because paperwork will be “streamlined”. We’ve heard such paperwork promises before. When they are actually kept (a rare event), over a few months or years the paperwork gradually increases again as bean-counters and lawyers find new and more paranoid ways to cover their you-know-whats. In order to ensure quality and provide time for service coordinators to do advocacy, STIC has always kept our caseloads below OPWDD maximums, but now we will be forced to increase them somewhat in order to stay financially solvent.

Pharmaceutical Coverage

A proposal to end an exemption to the rule that all EPIC (Elderly Pharmaceutical Insurance Coverage) enrollees who are eligible to enroll in Medicare Part D must do so was rejected.

Paterson wanted to end the EPIC program’s coverage “wrap-around” for drugs not available from Medicare Part D prescription drug plans. A full elimination was not adopted; instead people will be notified that they have 90 days in which to change to a covered prescription or carry out an appeals process. If the appeal fails, EPIC will still cover the medication (see Bulletin: EPIC Cuts Take Effect). This will inconvenience many people and cause some to stop taking drugs that they need out of frustration.

Residential Services

The State Office of Mental Health (OMH) will close 8 adult inpatient wards.

An increase for OPWDD’s NYS-CARES program was approved. We opposed it because nearly all of the money will be used to build more of the segregated mini-institutions known as group “homes”. OPWDD must reverse its institutional bias and spend all new residential service funds on individual integrated supports for people living with their families or in their own homes.

Early Intervention

Co-pays and deductibles were not adopted.

Rates for in-home early intervention services will be cut while those for facility-based services will be increased. This is a serious mistake that will reduce availability of these services to indigent families living in rural areas.

A proposal to let “paraprofessional” aides provide behavioral intervention services was adopted. Although this is projected to save $1.5 million, it’s our understanding that this service is rarely applicable to children in the early-intervention age range. Best practice is to defer diagnosing behavioral disorders in children under age 3 and to address environmental factors that trigger misbehavior, such as parenting styles, first. However, STIC’s position is that many services provided to people with disabilities are over-medicalized and -credentialized. People don’t need medically-related college degrees to provide these services if they are properly trained. We do believe that only certain personality types are suited for working with behavioral issues though.

Insurance Premiums

Private insurance companies serving New Yorkers will have to get state approval before raising premiums. This is projected to save $70 million over the next year because fewer people will be forced onto state-funded medical insurance when they can no longer afford private insurance.

Somewhat differing versions of a bill to improve access to communications technology by people with disabilities passed the US House of Representatives and Senate this summer. The bills have been amended since we last reported on them (AccessAbility Fall 2009). Here’s some of what’s in the legislation, according to the American Association of People with Disabilities:

• Requires captioned television programs to be captioned when delivered over the internet.
  
  
• Authorizes the FCC to require 4 hours per week of TV video description, with a phase-in to increase this number of hours.
  
  
• Requires televised emergency information to be accessible to people who are blind or have low vision.
  
  
• Requires accessibility of advanced communications equipment and services, such as text messaging and e-mail.
  
  
• Requires accessible connection to internet services that are built-in to mobile telephone devices, like smart phones, if achievable.
  
  
• Requires hearing aid compatibility of internet-enabled phones.
  
  
• Permits different forms of relay services to connect with each other so, for example, a TTY user can use relay services to call a person who communicates in American Sign Language using a videophone; a Speech-to-Speech relay user can phone a captioned telephone user.
  
  
• Requires devices of any size to be capable of displaying closed captioning, delivering available video description, and making emergency information accessible.
  
  
• Requires accessible user controls for televisions and set-top boxes, and easy access to closed captioning and video description.
  
  
• Provides for better enforcement and more accountability in the complaints process.
  
  
• Establishes some Advisory Councils that must include people with disabilities in developing the objectives and protocols for accessibility of internet-enabled TV and phone technologies.
  
  

It’s unclear what the next steps will be. Some advocates seemed to expect each house to pass the other house’s bills. However, the usual procedure is for a House-Senate conference committee to combine the bills into one that both houses then pass and send to the President. Advocates seemed certain that a final bill would be passed and signed into law this year.

The cartoonist and humorist John Callahan passed away on July 24, 2010.

Callahan, a quadriplegic, was known for his highly irreverent and politically incorrect cartoons and gallows humor. Disability community leaders had long lauded him as a pillar of disability culture.

As the New York Times reported, “‘This is John, I’m a little too depressed to take your call today,’ the message on his answering machine said. ‘Please leave your message at the gunshot.’”

The Times described some of his more memorable cartoons: “There was the drawing of a restaurant, the Anorexic Cafe, with a sign in the window saying, ‘Now Closed 24 Hours a Day’. There was one showing a group of confused-looking square dancers unable to respond to the caller’s instruction to return to the girl that you just left, with a headline reading, ‘The Alzheimer Hoedown’. There was the drawing of a blind black man begging in the street, wearing a sign that read: ‘Please help me. I am blind and black, but not musical.’ In another, a sheriff’s posse on horseback surrounds an empty wheelchair. The caption gave him the title of his 1990 autobiography: Don’t Worry, He Won’t Get Far on Foot. And there was the drawing of an aerobics class for quadriplegics, with the instructor saying, ‘O.K., lets get those eyeballs moving. ’”

Callahan died as a result of complications of quadriplegia and respiratory problems in Portland, OR. He was 59.

Paul K. Longmore, an influential historian, disability scholar and activist, died on August 9, 2010.

As reported by the Los Angeles Times, “Unable to use his hands because of a childhood bout with polio, Paul K. Longmore wrote his first book by punching a keyboard with a pen he held in his mouth. It took him 10 years, and when he was done, he burned a copy in front of the Federal Building downtown. By taking a match to The Invention of George Washington in 1988, the scholar brought national attention to a campaign to reform Social Security policies that discourage disabled professionals from working. Some of the most restrictive penalties were soon lifted—including one preventing him from earning royalties on books—in a policy change that became known as the Longmore Amendment.”

As well as being a leading scholar on George Washington, Longmore was a Professor of History at San Francisco State University who was known for his pivotal role in establishing the academic discipline of disability studies.

He also took a public stance against assisted suicide. In a moving editorial on the subject, he described the different fates of two men, David Rivlin and Larry McAffee, both of whom were quadriplegics who used ventilators and had been forced, due to a lack of community-based services, to live meaningless lives in nursing facilities. Both of them initially sought help to kill themselves. Rivlin, in Michigan, eventually got it. McAffee, in Georgia, was reached by ADAPT’s independent living activists in Atlanta and, through their assistance and advocacy, was eventually able to live in the community. As Longmore said, “And it hit me that I could easily have been in their place. At that point, I was still being denied the right to work, and I would have been denied the right to self-determined independent living if I had lived in Georgia or Michigan.. One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.”

Longmore died of natural causes at his home in San Francisco. He was 64.

by Susan Link and Susan Ruff

We are a car society. Most people jump in the car, fire it up and head off to work, shopping, movies, appointments, visits with friends and family, etc. However, a significant number of people don’t drive and don’t have cars.

For decades people with disabilities were stuck at home out of sight and out of mind, because there were no curb cuts or accessible buses. They relied on the kindness of friends and family to get around their community. The Americans with Disabilities Act (ADA) and the hard work of many advocates changed that scenario over the last twenty years. As a result, more people with disabilities are out in the community than ever before.

Over time the local Broome County transit system improved greatly. Accessible buses were purchased. Many people learned how to use them, and that flexibility meant the BC Lift paratransit could focus on the transportation needs of people who had more significant disabilities. With this improvement, more people took advantage of the transit system, taking jobs in various parts of the community, signing up for college classes, etc. Never before have people with disabilities had such freedom of mobility and with it, the opportunity for independence and community participation.

We worked so hard to develop a good system in Broome County, but now the tension on the faces of the riders echoes their personal worries—“will I get to work on time?” Facing financial problems, the Broome County Department of Public Transportation implemented some changes and reductions in services. The Shoppers’ Special was eliminated (this route went regularly to the Vestal Parkway stores and was used by both employees and shoppers). Some buses were changed from half-hour to hourly runs (#3 Park Ave., #7 Clinton, #40 Chenango). Changes to the #25 Oakdale Mall, the Endwell Shuttle, and the #47 have had a profound impact upon riders, many of whom have disabilities. In the past a bus trip from downtown Binghamton to the Town Square Mall took about twenty minutes. After recent changes, including elimination of the Shoppers’ Special, that same trip now takes 2 hours and 15 minutes, if a rider makes connections with 2 or more transfers.

There is a sentiment we have heard voiced, mostly among people who drive their own cars, that the changes are matters of inconvenience and they won’t impact people significantly. The results of the changes, however, are rippling outward and have economic ramifications for the whole community.

On August 6, several people from a community task force gathered survey information from the riders. 328 bus riders (workers, students, parents, elders and persons with disabilities) responded. While the task force, which includes STIC, Citizen Action, the bus drivers’ union, and members of the legislature, continues to meet and discuss options to present to the county, we wanted to share some of the survey results with our readers. By the time you read this, we hope to have met with the people (County Administrators and Legislators) who will be making the budget decisions this fall that will either restore or possibly eliminate other transportation services for the riders.

• 73% of people who answered the surveys reported using the bus system 5 or more times a week.
  
  
• Another 13% use the system 3-4 times a week.
  
  
• 54% of people surveyed ride between 7-11 am and 47% between 2-4 pm.
  
  
• 54% of the people surveyed were using one of the changed routes every day.
  
  
• 27% reported daily use of the Shoppers’ Special that was eliminated.
  
  
• 26% need at least 30 more minutes, 36% need an additional hour for travel time and 30% take more than an hour to get to their destination one way.
  
  
• In addition to needing more time, 80% have to change buses with 48% having to make 2 transfers and 30% having to make three transfers. 56% are sometimes unable to make their transfer connections and 26% said they often miss the connecting buses.
  
  
• People have changed where they shop (45%); had difficulty getting to work, school, daycare, recreation (50%); are missing appointments (47%); have had to cut work hours (15% or 48 people); or have lost their jobs (6% or 19 people).
  
  

We would suggest the transit changes are having a negative economic effect on the community. Over 85 riders either wrote or told us of additional impacts. Here’s a sample:

One Target worker said that 5-6 people at her work spot have been hurt by the changes. One woman has to leave very early, gets to work an hour before shift and waits to clock in. If she doesn’t do this she will be a half-hour late. “Getting to work used to be quick and easy—now it isn’t.”

One man used to grab dinner at a place near his work before his shift but now the extra time needed to get to work and negotiating route changes make that impossible. He was sympathetic, though, to the budget constraints of the county and said, “probably everyone is paying for this in one way or another.” The business where he used to get dinner has lost a customer so they are paying, too.

One Conklin resident is afraid that the next route to be cut will be his and he will have no way to get to his job. He expressed real fear.

Another person wrote, “About to lose my job.”

“The Shoppers’ Special was my way to work, now I am always 2 hours early for work or an hour late. We need this bus back.”

“Since the new schedule, I either get to work 45 minutes early or 15 minutes late; because of this I am going to have to leave my job and find new employment after 2 years at this job.”

Some people can’t buy meat and dairy products as easily due to the long ride home from their grocery store.

One man who uses a power wheelchair couldn’t get on his bus because the driver parked in the wrong place and couldn’ t lower the lift at an angle his chair could use. He waited nearly an hour and a half for the next bus and said he was worried he would miss an appointment. He misses the Shopper’s Special because it went to so many places and he can’t get to those places now. “They raised the fare and improved the buses and now lots more people use them. But with more riders, why can’t they make it financially? I’d pay another quarter because this is the only way for me to get around the community.” He worries that this winter it will be hazardous for those who wait outside and hope a bus will stop so they can get on, especially wheelchair users. Another wheelchair user said, “. riding the bus has become much more complex. I have to change buses three times now.” Some worry that buses will fill with students and there will be no room for them.

Some people are confused by the new schedules and routes. One elderly person said she doesn’t know if in-bounds or out-bounds on different routes would now get her to her shopping sites. The smaller bus being used for the Endwell Shuttle has steps that are difficult for some older people to use. “The mental effort is very fatiguing. The route schedules are all off. We can’t rely on the buses being where they used to be at the times we used to catch them.” “What bus is best to take to where I have to go?”

Several people are having trouble getting to medical appointments.

Additional travel hours mean more money is needed for daycare for some working parents.

Some mentioned needing to depend on families and others now. One person has to use taxis more. “I look for other ways to travel.” One said, “I miss the Shoppers’ Special, I lost my independence.”

People were divided about equally on the question of a rate increase. While 37% said they would be willing to pay a quarter more, 29% said they would not want an increase.

In closing, as we hear the BC Transit riders discuss their very long commutes, it is noteworthy that the average work commuting time nationally is about a half-hour.

by Valerie Bogart

Many New Yorkers age 65+ have both EPIC coverage and a Medicare Part D drug plan. EPIC and Part D work together to cut prescription drug costs for New York seniors. While there are still many ways in which they will continue to do so, one of the key benefits EPIC has offered will be sharply cut back effective October 1, 2010. Under budget cuts enacted earlier this year, if a Medicare Part D plan refuses to cover a drug for an EPIC member because it is not on the plan’s formulary, EPIC will no longer automatically pay for the drug as it has done since Part D started in 2006. This has been known as the EPIC “wrap-around” for Part D.

Effective October 1, 2010, EPIC will only pay for an off-formulary drug after the member files an initial request with the Part D plan to cover the drug (“coverage determination”) and exhausts two levels of appeals under Part D. Then, even if they lose the appeal, EPIC will cover the drug. Pending those appeals, EPIC will give a 90-day supply, but only if the prescribing physician calls EPIC’s Temporary Coverage Request (TCR) Helpline—(800) 634-1340 (which won’t open until Oct. 1, 2010)—and says that s/he will initiate an appeal for the EPIC member.

Alternately, the pharmacist will ask the physician to switch the prescription to one that is on the Part D plan’s formulary. If the pharmacist cannot reach the physician to ask whether s/he will appeal or prescribe a different drug, the pharmacist can obtain approval for a 3-day (72 hour) supply.

This summer, EPIC sent letters to members for whom EPIC had been paying for prescription drugs that their Part D plans have refused to cover (36,000 out of 226,000 EPIC members). These letters advise members to talk to their doctor about switching to a different drug. Instructions were also sent to pharmacists and prescribing physicians.

Each year we have the great pleasure to hold an Awards Luncheon to honor people and organizations of exceptional quality in the disability world. Each of these award recipients has gone well above and beyond the ordinary to achieve something significant for specific individuals with disabilities, for systems change, or to support STIC.

This year’s event took place on June 17 at STIC. As always, STIC Executive Director Maria Dibble and Peer Counseling Coordinator Suzie Link presented the awards.

These folks deserve all of the praise and support that you can provide. Next time you see them, please thank them.

Commitment to Community Service

Katie started this amazing organization four years ago to help those in distress due to personal or natural emergencies, illnesses, and other events. The organization helps people with disabilities and their families a great deal by providing personal care items, clothing, household items and furniture.

Lifetime Achievement in Independent Living

Pat began working for STIC in the 1980s as our Head Injury Advocacy Coordinator. Possessing tremendous talent for organizing activists and persuading different kinds of people to work together, she put in motion events that led, among other things, to our region’s first out-patient traumatic brain injury rehab program, improved treatment of head injury survivors by law enforcement agencies, better VESID employment services for people with brain injuries, and the creation of the New York State Traumatic Brain Injury Medicaid waiver program. She carried the principles of Independent Living with her when she went to Albany to help administer that program in the state Department of Health. The success of that effort led directly to the creation of the Nursing Facility Transition and Diversion Waiver program a few years later. Through it all, Pat has always had tremendous faith that “the Universe will provide” when something critical is needed to move forward, and for her, it always has. STIC was very proud to present this award to Pat Greene-Gumson on the occasion of her retirement from public service.

Outstanding Accessibility Achievement

This dentist has been highly sensitive to the needs of patients with disabilities. His new office is even more accessible than his last one. Patients can stay in their own wheelchairs while work is being done.

Outstanding Consumer Advocacy

These are passionate and committed service coordinators who go beyond the call of duty in advocating for consumer choice and independence.

Outstanding Consumer Support

This program serves kids and adults with disabilities. Every winter, they adapt skiing and snowboarding for people who would otherwise be unable to access these activities.

Barbara is committed to supporting seniors with disabilities in their own homes. She has worked with STIC through OFA’s Nursing Home Diversion and Modernization Grant program to expand our Consumer Directed Personal Assistance program to seniors who are not on Medicaid.

Andrea is highly dedicated to her students. She advocates strongly for their needs and is committed to transitioning students to more integrated classes. She donates her own time to help students learn their way around the school, become acquainted with the settings and routines, and therefore become more independent. She went far beyond the call of duty to help one student transition from BOCES back to the district.

A video editing expert, Michael has assisted with many STIC video projects across many years. Most recently he provided technical support and editing for the “video letter” created by Tom Perchinsky (see below).

Outstanding Legislative Support

Assemblymember Crouch is an outstanding legislator who takes his job very seriously. He works hard to learn about the disability community and has gained a strong understanding of our issues. He regularly signs on to legislation the community asks for, and recently he held a regional forum to get input from people with autism, their families, and advocates on their needs and concerns.

Assemblymember Lupardo has been a consistent supporter of most of the disability community’s issues. She understands and support’s STIC’s philosophy and advocacy efforts, and has been very accessible to constituents in the disability community.

Outstanding Systems Advocacy

Benlisa co-chairs the NY Association on Independent Living’s Election Reform Sub-Committee. Very knowledgeable about the federal Help America Vote Act (HAVA), over many years she has worked hard to bring full voting-place accessibility to New York State, including reviewing and advising on selection of accessible voting machines.

McCoy has worked very hard in New York City, advocating for HAVA enforcement and also for passage of the Polling Place Access bill by the state legislature.

Perchinsky has a significant disability and uses his computer by means of eye-movement tracking. He wrote and appeared in a video letter to federal legislators and the President as a way to advocate for the passage of the Community Choice Act. Congressman Michael Arcuri signed on to the bill as a co-sponsor after receiving the DVD.

Outstanding Volunteer Support

Phyllis is a tireless volunteer who helps our equipment loan closet by picking up donated items and bringing them to STIC. She ’s always ready to help when we need her.

Over many years, Reva has tirelessly lent her expertise in communication therapies and technology to STIC’s TRAID assistive technology program and to the Tiny Talking Hands group.

Kirk has been a stalwart supporter of our Hometown Holiday Light Festival fundraiser, and has provided countless hours of help to set up and take down the displays, often in miserable weather.

Diana Salvemini

I am the new Human Resources Clerical Assistant. I spend the majority of my time trying to make sense of CDPA timesheets.

I live on the north side of Endicott in a lovely apartment with my 16-year-old (human) daughter and my 3-year-old (feline) daughter. For fun we like to sit on the porch and watch the neighborhood children run around like maniacs. We love Roller Derby and often travel to Ithaca to cheer on the SufferJets and the BlueStockings!

I have been involved with STIC for about ten years from the consumer side. I am very excited to be joining such an amazing team of dedicated individuals.

Nicole Sanders-Rinker

I am pleased to be joining the team at STIC as the new TBI Administrative Assistant. I am excited to be part of this wonderful organization.

I live in Port Crane NY, with my boyfriend and two beautiful daughters, Makayla who is ten and Taylor who is five. We are also expecting a new addition to our family in March 2011. We have 3 dogs and a cat. Our house is very busy but filled with lots of love.

I worked for Crowley Foods for 11 years and also worked for UHS for the past two years. I have learned so much from the 13 years I have worked for both organizations. This is my first job working with people with disabilities and I am learning so much and look forward to learning so much more.

I am much honored to work with an agency that is very involved and respected in the community. I look forward to many years to come here at STIC.

Thank you for the warm welcome.

by Maria Dibble

While you bask in the warmth of summer and the colors of fall, STIC’s tenth annual Hometown Holiday Light Festival is well into the planning stages.

This year, the show will begin the day after Thanksgiving on November 26 and will run through December 30. The hours are 5:00-9:00 PM daily and the prices are the same as last year ($8.00 per car or SUV). For info on buses and group tours, contact Amy Henry, Development Director, at (607) 724-2111.

Remember, if it’s raining or snowing call STIC to see if we’ll be open. Rain is the bane of the show because it causes lights to short out no matter what we try to do to prevent it.

We will again be featuring some new and animated displays along with the old favorites, as we work to make this special anniversary the best show yet.

by Dan Livingston

The latest expansion of CNY Bounty will bring food from Madison, Chenango, Onondoga and Broome County farms to the City of Binghamton at the Southern Tier Independence Center.

The year-round online farmers market moved into Binghamton this summer, providing pick-up service at Down to Earth Whole Foods in Endicott, and STIC in Binghamton.

Starting Thursday, August 5, customers will be able to pick up meats, vegetables, baked goods, dairy products and organic produce from 3 to 5 pm at STIC and 4 to 8:30 pm at Down To Earth.

The project has grown since June 2008, when Madison County joined a similar effort under way in neighboring Chenango County. In the program’s first week, nine local farms distributed food to about 80 customers in Madison and Chenango counties. Now, the team works with almost 90 farmers and processors and carries more than 900 products year-round.

Customers place their orders online at www.cnybounty.com, choosing from a list of products available each week. Orders are collected from farms on Tuesday, packaged at the distribution center Wednesday and delivered free of charge Thursday.

The program’s success has solved problems plaguing farmers for years, such as distribution, marketing and pricing. Advocates say continued growth will protect farmland from development and boost agriculture.