AccessAbility

by Maria Dibble

Unfortunately, as it has done to so many, the budget axe has fallen and taken a big chunk out of STIC.

The Department of Health chose to eliminate the Neuro-Behavioral Resource Project for people with traumatic brain injuries. This $400,000 statewide program provided assistance from an internationally recognized expert, and supporting staff, to design and troubleshoot positive behavioral support plans so people with TBI and significant behavioral issues could remain independent in their communities. It also trained apprentices around the state to increase local availability of these services. We offered to continue the project at the same service levels for about 40% less money, but they turned down our offer. As far as I know, there are no alternatives for consumers at this time.

The 2011-12 state budget contained a 2% cut to most Medicaid programs. For STIC, this meant that we had to eliminate health benefits for personal assistants under the Consumer Directed Personal Assistance (CDPA) program serving Broome and Tioga Counties. Also the CDPA administrative staff were each cut by one hour a week.

Additional cuts included:

Elimination of a part-time Benefits Advisor position and the Bridges to Health waiver.

Reduction in hours for our Quality Management Specialist responsible for corporate compliance and quality monitoring for the agency.

Overall cut to agency administration affecting funding for the Human Resources and Fiscal departments, as well as contract administration for most of our grants. At the same time, due both to financial scandals at OPWDD and state budget measures deliberately designed to make it harder to recoup costs, we were hit with more regulations, requiring more paperwork and oversight, and we're supposed to do it for less. OPWDD doesn't call them cuts, by the way, they are called "efficiencies". Service coordinators are now allowed to carry larger caseloads (with more paperwork) for the same number of hours and the same pay. Oh, and OPWDD promised consumers and their families that their services wouldn't be eliminated or reduced. How efficient of them!

Most contract budgets remained at level funding and have been for several years. This may sound like good news, except for the fact that utilities have gone up and health insurance goes up anywhere from 10% to 15% a year. Just to give you an idea, we spend $7,000 per person per year for health and dental insurance. Ten years ago this would have been under $2,000. Remember how HMOs were going to save the day and cut health insurance costs in the 90s? Guess what, it didn't work! No worries though because now managed care is coming to save the day for people with disabilities on Medicaid. But that's an article for another day.

Also, our staff haven't had raises in years and we reimburse them for mileage at a much lower rate than is permitted by the state or federal government.

When all is said and done, over the last year, STIC has lost between $750,000 and $1 million to the budget axe. Why the two figures? Because the state hasn't finished figuring out how it's going to take some of our money away yet.

We've tightened our belts until it hurts, until blood has started to flow, but I fear that there is no end in sight. Sadly, you'll probably be reading in these pages about more cuts to staff and services in the future. Oops, I mean efficiencies!

Here's hoping that your budgets remain as inefficient as possible.

OPWDD has been mired in scandals involving its finances and its treatment of the people in its care for over a year. Since our last issue, new revelations have surfaced.

On June 6, the New York Times followed up its article on criminal abuse and neglect of people in OPWDD-operated group “homes” with a story of abuses in the agency’s larger institutions.

The article cited ongoing problems at Broome Developmental Center (BDC), including the incident in which a staff member who incited facility residents to fight each other was merely reassigned to another unit. (The Binghamton Press & Sun-Bulletin reported then-BDC Director Carl Letson’s statement that the staff’s behavior was “a mistake” that didn’t justify firing.)

The Times also reported that:

A worker at Sunmount Developmental Center bragged on Facebook about “beating retards”. He ’d been placed on “administrative leave” after joining several other staffers in punching a resident repeatedly in the face. Another Sunmount worker dumped catsup, salt and pepper on the head of a resident who was eating dinner; he was transferred to another unit.

Staff beat residents with a stick called “the magic wand” at O.D. Heck Developmental Center in Schenectady. They made one resident sit on a gym mat; if he tried to move off it, they hit him with the stick, stepped on his hands, snapped him with a towel, or shoved socks in his mouth. Also at O.D. Heck, the paper reported, “two employees played a game they called ‘Fetch,’ throwing french fries on the floor and laughing as one resident dived to get them, while another jumped out of his recliner and a third ate them off the floor.”

A woman who had been fired from Monroe Developmental Center in Rochester for threatening a supervisor and for “misconduct”, and who had been convicted of criminal mischief in a case unrelated to her job, was rehired, whereupon she physically assaulted a resident. There were numerous “do not rehire” notes in her personnel file.

The Times said that staff had tried to report many of these incidents to higher-ups in OPWDD but that they were ignored and/or retaliated against. In the “ magic wand” case, the whistle-blower made an audio tape of her encounter with administrators. The tape shows that when she reminded Albany DDSO Director Kate Bishop and Andrew Morgese, OPWDD’s internal affairs chief, that she had previously reported the incident and asked if the police had been notified as state law requires, both officials tried to argue that hitting a resident with a stick is not a criminal assault. Morgese also told the staffer that if she thought it was a crime, she should report it. The staffer later did and, as is typical, the officer she told didn’t seem to believe he had jurisdiction over employees of state institutions. (Later, however, the police did investigate further.)

When the Times reporter asked an OPWDD spokesperson about the incident, she claimed it didn’t happen the way the reporter described. However, after the Times told OPWDD about the tape, Bishop and Morgese were removed from their positions. Both still work for the agency though, Bishop in the Central Office and Morgese in a regional office the Times didn’t name.

Following the Times stories, the Poughkeepsie Journal, which broke the news about OPWDD’s excessively high rates for institutional placements last year, echoed the abuse and neglect theme.

The Journal reported that OPWDD had hired an incompetent doctor, who had been defrocked by three different hospitals, to work at the Wassaic Developmental Center, where he botched a routine feeding tube insertion so badly that the resident died. In another incident, a nurse found a resident in respiratory distress and told an underling to call an ambulance while she went outside to smoke. The man died and the initial investigation classified it as a “natural death ”.

The Journal also told the story of Janice Hall, a Wassaic resident who died of a spinal cord injury after being thrown to the ground by two staff members in an “ intervention”. For 36 hours after the attack, as her condition deteriorated, little was done. Finally she was taken to a hospital, where she died two months later. Facility administrators did not contact the police for 9 days following the incident. No one was disciplined for injuring her. This case was not unique at Wassaic; several severe injuries and deaths occurred there whose cause was either not, or unclearly, documented, and for which no one was punished.

These and other incidents were reopened for investigation by OPWDD after the Journal brought them to the attention of the agency’s current leaders.

Another Journal story described “Hell Night”, which is what the staff in one of the buildings at Wassaic used to call Sunday nights. On Hell Night the staff would routinely torment and beat residents for their amusement. One staffer repeatedly hit a resident with a rubber toy and asked him if it hurt until the resident fought back. Other residents were slugged, kicked, “stomped”, and pushed to the floor. Of the five staff involved, two were never disciplined and still work for the Taconic DDSO. Another staffer was transferred to another unit.

That story related other similar incidents, indicating the same pattern of failures to criminally charge, fire, discipline, or even try to discipline staff for abusive conduct that was described in the Times March 2011 story on OPWDD-operated group homes. It said that Wassaic was cited by the state Department of Health for “failing to protect residents from a serial abuser”, and that since 2006, the only other facility charged with doing so was Broome Developmental Center.

Although there have so far been fewer reports of similar problems in not-for-profit agencies that operate segregated facilities, those agencies are not immune from corruption and malfeasance.

In August, the Times described the death of Alonzo Eason. Eason lived in a 14-bed mini-institution described as a “group home” that was operated by AHRC New York City. At around 3:30 pm one 90-degree afternoon, he was found dead in a van. As is common for allegedly “community based” not-for-profit agencies, Eason had been transported that morning from his segregated congregate residence in a private van owned by the agency to a segregated congregate day program also owned by the agency. Everybody else got off the van and went into the facility but Eason, who was nonverbal and usually needed assistance to walk, did not—and nobody noticed he was missing, for well over five hours. Although day programs must maintain a daily census for billing purposes, and their staff are supposed to find out why people who don’t live independently don ’t show up, apparently nobody took attendance that day or if they did they didn ’t bother to follow up on Eason’s absence.

Following the incident, OPWDD issued a memo to all service providers reminding them of existing regulations requiring the staff who accompany people with developmental disabilities to keep track of the people they are with and tell somebody if they go missing—something that ought to be obvious but which can easily get overlooked in a closed, segregated system, where workers assume that since it ’s all one big organization, somebody else must have it covered.

In July the Syracuse Post-Standard published a list of not-for-profit agencies that were on OPWDD’s new “early alert list” that month, including one that serves our region. Catholic Charities of Chenango County has inadequate operational oversight and one of its group homes has “significant compliance issues”; Baker Victory Services of Buffalo has not corrected “repeated regulatory deficiencies”; Federation of Multicultural Programs of New York City has “significant compliance concerns” at one of its ICFs; New Visions of Albany’s board of directors appears incapable of providing adequate oversight and some of its group homes have failed “to meet compliance standards”; there are “ concerns related to health care services” in a group home operated by Queens Parent Resource Center of New York City.

In August OPWDD announced an “agreement” with the NY State Police regarding the reporting of crimes committed against people with disabilities by staff of OPWDD or its subcontractors. The NY Times ran a brief story on this agreement but we weren’t able to read its actual text. Although OPWDD Commissioner Courtney Burke said the agreement “ensures that those who engage in criminal conduct against individuals in our care are held accountable through consistent reporting to law enforcement,” nothing reported by the Times could really do so.

State law already requires such crimes to be reported to the police. The Times said the agreement clarifies what types of crimes must be reported, arranges for OPWDD to provide training to State Police Academy cadets, and says OPWDD regional officials will “meet with local law enforcement officials to discuss reporting procedures.” The Times also said “the Cuomo administration is negotiating with ... district attorneys to improve reporting procedures.”

As the Times pointed out, this “agreement” is not a law. It does not appear to require any specific results other than that state police recruits be trained, and it wasn’t clear why the State Police needed to “agree” to any of the other provisions since they have no control over local law enforcement. It is difficult to see how this will have any significant effect on how seriously local police take these reports or whether prosecutors file criminal charges.

“Guidance” from OPWDD on police reporting procedures says that acts of violence against people with disabilities by staff, including “hitting, slapping, pinching, kicking, hurling, strangling or shoving”, none of which can be an approved restraint technique, would not be a reportable crime if intended to prevent injury to anyone, including the staff person who does it. This is a huge loophole.

OPWDD also announced proposed changes to the “Part 624” regulations that govern incident reporting and investigation. Most notably, neither the direct supervisor, nor anyone in the line of supervision, of any staff person who is directly involved in a serious reportable incident or abuse, unless s/he is the CEO of the organization, will be allowed to participate in the investigation. The CEO may investigate such incidents only if s/he is not the direct supervisor of any staff involved in the incident. And staff who are in the line of supervision of any person involved in such incidents won ’t be allowed to participate in an Incident Review Committee review of those incidents, though they will be allowed to participate in discussions of what will be done about them. These changes are subject to public comment until October 3, and probably won’t take effect until 2012. This is good as far as it goes. However, STIC’s position is that all serious reportable incidents and abuse should immediately be reported to an independent organization not part of the OPWDD system or its contractors (such as the Commission on Quality of Care), without filtering or delay, and that organization should have primary responsibility for investigations and be funded accordingly.

Meanwhile, the revelations of financial shenanigans also continued over the summer.

In June the state’s Commission on Quality of Care (CQC) released a report on Academy Green Residences, Inc. (AGR), a Kingston not-for-profit. Its executive director, Tom Ngowe, stole over $200,000 in wages and personal allowances from 16 residents. The agency was disbanded and Ngowe is being prosecuted. More disturbing, though, was what happened before this final incident. As we’ve reported, OPWDD has a history of maintaining cushy relationships with certain contractual providers, steering business their way and protecting them from potentially damaging inquiries. OPWDD had been aware of poor financial record-keeping at AGR since 2007 when a state audit report required AGR to pay back over $360,000 collected between 2004 and 2006. AGR said it couldn’t afford to pay the money back. OPWDD at first said it would close the agency and move its clients elsewhere. However, for reasons unknown, it changed its mind when Ngowe was hired, and instead actually gave AGR a new contract for residential habilitation specifically to “assist” with the “cash flow problems ” caused by the payback.

In August the NY Times broke a story of financial scandal at the Young Adult Institute (YAI), a not-for-profit provider of residential services to 700 people in the New York City area. The agency had been run by two brothers, Joel and Phillip Levy, each of whom had annual paid college tuition and living expenses—not for a dorm but to buy a co-op apartment—for Phillip Levy’s daughter. Fundraising expenses are not reimbursable by Medicaid, but YAI employed professional fundraisers and at the end of each year changed their designations from “fundraisers ” to “administrators” in order to get Medicaid funds to pay them.

The Times reported that chief executives at five other not-for-profit agencies with “residential capacities” ranging between 280 and 560 people had salaries above $500,000.

The Times also said a flaw discovered in a supposedly secret OPWDD rate formula that paid higher rates for services for people with vision problems prompted a sudden rash of claims for visual disabilities not only from YAI but from other not-for-profit contractors who were all members of the same lobbying group in the early 1980s. Paul Castellani, a former OPWDD official in charge of developing the formula, called it “the day everyone went blind.”

Former OPWDD Commissioner Tom Maul told the Times that the not-for-profits are “bigger than government in some ways. That isn’t what our system was supposed to be.” This remark appears to be disingenuous. Inside sources have said that failure to discover abuses at YAI was not an oversight; rather it was known among OPWDD officials in the New York City area that they were to keep “hands off” the organization.

Several not-for-profits in the Post-Standard’s July list were cited for financial issues as well: There were “significant concerns relating to the long-term fiscal viability” of Elmy’s Special Services of New York City; At Marygolden House of Long Island there was “inadequate maintenance of financial records” and “concerns regarding the effectiveness of the agency’s board of directors”; and Quick Social Services of Long Island “has been unable to come up with a fiscal plan that allows it to continue to deliver adequate programs and support for people with developmental disabilities”.

As a response to these revelations, OPWDD sent out yet another cautionary memo to providers, advising them to develop rational systems for compensating employees, and Governor Cuomo announced a task force to look into the issue.

For the record: STIC does not provide residential services. However, we are the largest not-for-profit provider of OPWDD service coordination in Broome County and we have a substantial presence in Tioga County; the program serves well over 300 people. We also provide Day and Community Habilitation services to a large number of people, in addition to operating a CDPA program that has nearly 200 employees, two Regional Resource Development Centers administering DOH HCBS waivers across 12 counties, and several other programs. The highest salary paid at STIC is well under $100,000.

There is growing worry among disability advocates about what might happen to Medicaid under the federal debt reduction law enacted this summer. Although there is reason for concern, and it is important to organize and act, we think claims of impending disaster are exaggerated.

Here’s what’s actually in the law.

First, all spending cuts are to be enacted over 10 years. Those frightening numbers—$1 trillion right now and $1.5 trillion in the next round—are actually $100 billion in the federal budget year beginning in October 2012, with the rest not necessarily divided equally over ten years.

Second, this is about budget plans, not actual appropriations of money. Congress often ignores budget plans when it gets down to actually spending the money, and nothing in the law, despite some scary-sounding language, can keep more money than projected from actually being spent.

Third, if the “automatic cuts” are triggered—again, that is reductions in spending plans over 10 years—Medicaid, SSI, food stamps and veterans’ benefits will not be included, and growth in Medicare spending will be capped at 2% per year.

Fourth, it’s possible to achieve most of the “cuts” by not cutting at all, but instead by imposing a cap on spending growth. Other quite sensible and mostly painless measures, such as tying the federal retirement and Medicare-eligibility ages to life-expectancy data so they increase gradually as people live longer, and reversing Medicaid’s institutional bias, by making homecare a mandatory service and nursing homes optional, and by phasing out all Medicaid spending for non-time-limited residence or participation in programs that have “institutional qualities ”, would also make a big difference. People with disabilities should support all of these ideas.

A “super committee” of House and Senate members, six Republicans and six Democrats, is going to try to come up with a plan for cutting the “second round” $1.5 trillion. It is unlikely that they will come to any agreement, since the Democrats are firmly demanding revenue increases and the Republicans firmly oppose them. So the automatic cuts probably will be triggered, and that will force the feds to deeply reduce military spending without touching programs that are most important to people with disabilities.

The bigger issue is what may come in the “first round”. There is nothing specific about this in the law except the spending targets. It is just as likely that nothing will be agreed to here either and that instead, there will be temporary appropriations bills until the 2012 elections.

It’s possible that Obama will cave on the content of these appropriations bills unless there is a massive push to make sure that elected leaders know that most Americans don’t want Medicaid to be cut and that they want taxes to be raised to balance the budget (see End Corporate Control of Our Government!), and that those who defy the will of the people will not be re-elected. This is where you come in. Not only will local federal officials need to hear this from millions of Americans, but national leaders as well.

By the time you read this a hopefully very well-attended and effective series of protests against Medicaid cuts, now being organized by ADAPT, will have just taken place in Washington. But that alone won ’t be enough. There must be a widespread virulent public backlash against the anti-tax extremist minority in the coming months. Do your part to make that happen.

We reported on this case last spring under the name “Maxwell-Jolly v Independent Living Center of Southern California”. Documents available to us at the time indicated that it was about whether providers of Medicaid-funded services had standing to sue a state that cuts Medicaid rates to such a low level that they are no longer “...sufficient to enlist enough providers so that care and services are available ... at least to the extent that such care and services are available to the general population”, as federal Medicaid law requires. Since then we ’ve learned the case also considers whether Medicaid recipients have such standing. This makes it a bigger deal.

As we reported, the Obama Department of Justice (DOJ) filed a brief supporting the plaintiffs— that is, in favor of denying providers and recipients the right to sue. This is pretty surprising. DOH has supported several lawsuits opposing states’ efforts to cut Medicaid-funded services that enable people with disabilities to stay out of institutions. These include Pitts v Greenstein in Louisiana; Hiltibrand v Levy in Missouri; Troupe v Barbour in Mississippi (see below), where DOJ argued that federal Medicaid law confers a private right of action in cases regarding the law ’s “ Early Periodic Screening, Diagnostic and Treatment” provisions; and Steward v Perry in Texas, which supports a private right of action to enforce provisions that require states to offer integrated alternatives to nursing facility placement. DOJ’s position in Douglas is that, unlike sections of Medicaid law that require the provision of specific types of services, the “sufficient rates ” section is too vague and broad to be competently interpreted by the courts.

This is in line with US Supreme Court precedent (usually cited as the “Gonzaga case”), but on the surface it doesn’t seem to fit with the Obama Administration’s broader approach. In June, DOJ issued a technical assistance document on Olmstead enforcement that indicates that programs that have “qualities of an institutional nature” (language similar to that used in the federal Centers for Medicare and Medicaid Services (CMS)’s proposed new rules for HCBS waivers) are not likely to meet legal tests for “the most integrated setting”.

But CMS also plans to issue new regulations making it much harder for states to cut Medicaid rates. CMS has already disapproved the rate cuts enacted by California that engendered this omnibus suit (those disapprovals are being appealed administratively). DOJ’s brief cited the forthcoming CMS rule as a better way to settle this issue. That rule, if it can itself survive legal challenge, may genuinely be intended to circumvent the Gonzaga ruling and strengthen the “sufficient rates” provision. It might be better to go this route than to keep filing suits that run afoul of Gonzaga and potentially weaken the law. It ’s hard to see any other rational explanation.

In August, Democratic Congressional leaders and a dozen former Democratic administration officials filed briefs opposing DOJ’s view. Former Medicaid administration experts including Donna Shalala, Health and Human Services Secretary under Bill Clinton, and Joseph Califano, Jimmy Carter’s Health Secretary, said that it is “logistically, practically, legally and politically unfeasible” for the feds to effectively enforce the “sufficient funds” rule. Congress members including Senate Majority Leader Harry Reid, Senate Finance Committee Chair Max Baucus (known for fairly conservative views on health care financing), House Minority Leader Nancy Pelosi, and Congressman Henry A. Waxman, a Medicaid expert, said DOJ’s position would “undermine Medicaid” and that it was the intent of Congress that individuals be able to sue states to enforce the law.

We would add that after the disability-friendly Obama Administration ends, a decision in favor of the plaintiffs would be disastrous if later administrations were less supportive of our issues.

Nevertheless, federal Medicaid law itself grants no specific right of action to individuals, nor does it forbid it, so the argument rests on whether persons deemed “third parties” to a contract between the federal and state governments have standing to sue for violations of the contract.

The US Supreme Court will hear the case in October.

This Mississippi federal district court case pits parents of children with significant “behavioral ” or “emotional” disabilities against the state, which is accused of failing to provide integrated individualized services to prevent these children from being institutionalized. The services requested include positive behavioral and in-home supports, crisis services, and family education and training, among other things. The federal Medicaid law’s “Early Periodic Screening, Diagnostic and Treatment” provisions require states to provide these services, and the ADA requires states to prevent people with disabilities from being unnecessarily institutionalized.

MS wants the case dismissed. In April 2011, DOJ filed a brief opposing the dismissal. DOJ alleges that MS provides only limited intermittent services to eligible children, which causes them to cycle through institutional settings repeatedly and does them lasting harm because, “institutional care not only fails to meet the needs of children with serious emotional disorders, but is also harmful because it ‘deprives children of normalizing experiences, isolates them with other children who have behavioral problems, and exacerbates feelings of anxiety and concern.’”

The situation is reminiscent of New York’s treatment of children with dual mental illness and developmental disability diagnoses. NY does not provide adequate levels of in-home support, crisis services including respite, or family education and training to prevent families from being forced to place their children in segregated residential settings. Once again, DOJ has taken an action that ought to be a wake-up call for NY officials.

We reported on this lawsuit filed in federal district court by the US Department of Justice (DOJ) in the summer of 2010. Judge J. Leon Holmes issued his decision in July 2011.

We can’t put a pretty face on this; it was a defeat for DOJ and those who believe in integration for people with developmental disabilities. Its does provide lessons on the limitations of the ADA and the Olmstead decision, and on the hazards of being less than fully prepared before going into federal court.

We’ve read the entire 85-page decision. We did not have time to read DOJ’s 355-page post-trial brief which laid out details of its arguments. So we can’t offer an opinion on who was right and who was wrong on many facts of the case. Here’s what we can say:

DOJ failed to convince this judge that conditions in one of Arkansas’ developmental centers, the Conway Human Development Center, were worse than average for such places. The decision summarizes DOJ expert witness testimony regarding recorded incidents of injury and death in the facility, to which the judge repeatedly replied that there was no statistical evidence that such things occur with greater frequency in the AK facility than they do in similar facilities elsewhere.

The judge may have simply accepted at face value AK’s claim that its policies and procedures for ensuring safety and appropriate treatment are always followed. DOJ’s complaint said they aren ’t. But Holmes said the only evidence presented for that claim was the written record of incidents, and testimony from developmental disabilities experts that the Conway staff aren’t the most well-educated or knowledgeable people in the DD field, and they don’t always follow best practices. If anyone with first-hand knowledge of conditions at Conway testified, or any incident report recorded, that proper procedures were violated or legal negligence occurred, it wasn’t described by the judge. For example, there was a written report that a person who was at risk of choking was left asleep unattended for five minutes at 11:30 pm, during which time he got up, entered a kitchen, ate something, and started choking, but the staff responded promptly and saved his life. It might be asked, why was the kitchen unlocked at 11:30 pm? but that question didn’t occur to the judge. Instead, he said the fact that people get injured or die in facilities does not automatically mean there is wrongdoing, and he cited a federal court ruling that no facility can provide a 100% assurance of safety for people with significant intellectual and behavioral disabilities without also maintaining 100% control of their actions, and safety vs. freedom is always a trade-off. And he said the qualifications of all of the staff at Conway, as well as their policies and procedures, comply with federal minimums.

DOJ alleged that Conway makes no credible effort to assess whether residents are appropriate for more integrated settings unless a parent or guardian requests it, despite the Olmstead ruling that keeping people in settings that are not the most integrated for their needs may violate their civil rights. This accusation might have meat on its bones, because all ICFs, including Conway, are required to do these assessments periodically whether or not anybody requests it, and to develop discharge plans as appropriate. But Judge Holmes leaned heavily on the Olmstead caveat that nobody can be forced to accept a more integrated setting against their will. He pointed out that six parents or guardians testified that they believed their children or wards were in the most appropriate setting, and no parent or guardian said otherwise. That might be irrelevant if he’d heard testimony that convinced him that the required assessments weren’t being done—but he wrote that they are done, in compliance with regulatory minimums, and that Olmstead and other legal precedents say that “professional judgment” is not ordinarily to be second-guessed by the courts. He also said the record shows that people are regularly discharged from the facility.

DOJ said that AK doesn’t provide a sufficient quantity or variety of integrated alternatives. Holmes agreed that there is a substantial waiting list for the state’s HCBS waiver program. However, he emphasized that the ADA regulations define an “integrated setting” as one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible”, and he pointed out that a typical “community-based” placement, a group home, doesn’t necessarily provide any greater contact with nondisabled persons than an institution. He said that a few people at Conway have jobs outside the facility, that lots of them go on “outings”, and that volunteers come into the facility to entertain. Therefore, it had not been proven that Conway was less integrated than any actual “community based” program in Arkansas.

Holmes’ summary was scathing. He said it makes no sense to claim that people’s civil rights are being violated if neither they, nor the people who know them best, will say that they are. And he said it also makes little sense that one arm of the federal government can haul a state into court for doing things that another arm of the federal government, the Centers for Medicare and Medicaid Services, explicitly approved it to do.

So what are we left with?

First, no US attorney should go into federal court without eyewitnesses and paper trails to support allegations of egregious neglect or abuse, or without any people with disabilities (or family members or guardians), who will testify that they wanted out and were denied or weren’t told they had the option.

Second, Olmstead does not protect people whose rights are being violated by their own parents or guardians. We need a case where DOJ presents convincing scientific evidence that segregation actively harms people with disabilities, and argues that the rights of parents or guardians do not permit them to hurt their children or wards. Such evidence does exist, and was alluded to in a “findings” letter that DOJ sent to the State of Virginia in February of this year (see Letters of the Law) as well as in Troup v Barbour. So perhaps one day we will have such a case. DOJ also needs to show why the health, safety, and quality of life of people with developmental disabilities should be compared, not to the average for institutional settings, but to the average for human beings who are not segregated due to disability. They could start with the ADA’s preamble, which does exactly that.

Third, what Judge Holmes said about the typical “community based” program in AK is, sadly, true of most “community based” programs anywhere. They largely rely on segregated, restrictive group homes and congregate program facilities whose only claim to being integrated is that they are not on the grounds of a facility that is commonly recognized as an “institution”. In other cases, DOJ has obtained settlements that specifically require states to provide integrated individualized supports and services to people with mental illness and, to a lesser extent, developmental disabilities, as the default option, only permitting segregated congregate alternatives as a last resort. DOJ needs to present this as the standard to compare to in all cases.

Fourth, CMS should take the next logical step following its proposed new regulations regarding use of Medicaid waivers for “community based” services: It needs to declare that no Medicaid funds can be used for open-ended segregation of people with disabilities, and include strong rules to ensure that every person’s stay in such a place is strictly time-limited and accompanied by intensive efforts to enable discharge as soon as possible, but no later than 18 months after admission, and that all discharge plans provide for all necessary personalized integrated supports.

Finally, it is a sad commentary that legal standards for institutional settings are so low that it was not possible to convince a federal judge that such facilities can be required to see to it that their staff carry out their duties in a more than perfunctory fashion or continuously improve their knowledge and practices in light of modern research.

At press time DOJ had not announced whether it intends to appeal this decision.

Perhaps surprisingly, here in relatively wealthy, “liberal” New York, a much stronger case can be made that the state systematically abuses, neglects and violates the civil rights of people with developmental disabilities than in relatively poor, “conservative” Arkansas. As recent events show, there are many people with disabilities, family members and guardians, and professionals, who can testify to outrageous mistreatment and failure to comply with the ADA not only in NY institutions but in “community based programs” (see OPWDD Revelations Continue). Our sources tell us that DOJ is indeed taking an active interest in NY, but whether they will do anything soon is unknown.

Sometimes the federal Department of Justice (DOJ) conducts its own investigations into whether state governments are in compliance with the US Supreme Court’s Olmstead decision, which says that it is illegal discrimination under Title II of the ADA for a state to provide services and supports to people with disabilities in places that are not the most integrated setting appropriate to their needs. DOJ sends “findings” letters to state governments to describe the results of these investigations, and to advise the state to correct the problems. If the state refuses to cooperate with DOJ to arrive at a resolution, DOJ will sue the state in federal court.

Recently some interesting “findings” letters have been issued to other states that address issues very similar to those we are dealing with in New York.

An April 2011 letter found that in New Hampshire, whose mental health system is acknowledged by both DOJ and state officials to be “broken”, has “in spite of a challenging fiscal environment ... continued to fund costly institutional care ..., even though less expensive and more therapeutic alternatives could be developed in community settings.” The letter stated that NH’s community service programs are about 1/6 the cost of the institutional settings mentioned, one of which is a nursing home that houses people with developmental disabilities and/or mental illness. The state said it had cut back on community services, including supported living and service coordination, while maintaining institutional facilities, due to budget problems. DOJ said that since community services are less expensive than institutions, the state should have had no problem with closing institutions and expanding community services instead, and said that failure to do so was illegal under the ADA.

DOJ also told NH officials, “Although many individuals are placed in private residences or households in the community, we are concerned that part of the State’s community system relies heavily on congregate housing resembling institutions. The State reported that it currently utilizes about two dozen community group homes with an average census of about 11 persons per site; one unlicensed home in Manchester serves 23 persons at one location. The large census size of such group residences typically renders them more institutional, less therapeutic, and, as a result, often unable to meet the needs of many persons with serious mental illness.”

DOJ ordered NH to provide supported housing to keep people from being institutionalized, and said that “supported housing should provide individuals with their own leased apartments or home, where they can live alone or with a roommate of their choosing. The housing is to be permanent (e.g., not time-limited) and is not to be contingent upon participation in treatment. The supported housing provided by the State should be scattered-site, meaning in an apartment building or housing complex in which no more than ten percent of the units are occupied by individuals with a disability. Group homes should not constitute supported housing. The State should ensure that individuals in supported housing have access to a comprehensive array of services and supports necessary to ensure successful tenancy and to support the person’s ... engagement in community life...”

A February 2011 letter to Virginia officials found similar problems with that state’s reliance on institutions for people with developmental disabilities. Again, DOJ found that it would be cheaper for VA to serve people in community settings—this time by a factor of 3 to 1.

Not only did DOJ tell VA that unnecessary segregation illegal, it also cited research indicating that institutional settings are actively harmful: “[O]ne of the harms of long-term institutionalization is that it instills ‘learned helplessness,’ making it difficult for some who have been institutionalized to move to more independent settings.”

DOJ also noted that “Virginia also offers congregate, more institutional-like settings in the community ... that serve between five and 12 individuals and assisted living facilities that provide or coordinate personal and health care services with 24 hours per day of supervision in a larger group setting. ... For many individuals, these are not the most integrated settings appropriate to their needs.”

DOJ faulted VA’s discharge planning process, finding that people in segregated settings often do not have service plans that are oriented toward moving them out of those facilities to more integrated living, and that plans that do address discharge incorrectly emphasize “readiness” on the part of the person instead of putting integrated individualized supports and services in place to serve the person as s/he is. They cited institutional staff for failing to inform people with disabilities and their families that they have the right to decline a particular suggested placement without thereby forfeiting their right to receive the services and supports they need.

All of the issues cited in the two DOJ letters occur on a regular basis in NY. OPWDD claims that its new “People First” managed care waiver will address this. However, OPWDD has not made a commitment to close 100% of its large institutions, or to transform its system of group homes and small ICFs into a truly integrated residential support system. It is continuing to tell people in large institutions that their only option for getting out is to go to a group home. Unless it stops that practice and commits to a full transformation of the system, it will be in substantial violation of the ADA just as NH and VA are, and will likely be sued by DOJ.

The tables finally appear to have turned on the infamous Judge Rotenberg Center. The residential school in Massachusetts became known in recent years for indiscriminate use of electric shock and other painful “aversive techniques” to control the behavior of children with disabilities.

These techniques have been widely decried as torture by disability and human rights groups both in and outside the US, a position that has been endorsed by the United Nations. After abuses at the Center were publicized a few years ago, the NYS Education Department drafted a policy to severely regulate and eventually phase out their use not only in public and private schools in NY but in other states where NY children are sent at state expense. However, a tiny group of parents successfully sued to keep the rules from being applied to the Rotenberg Center. These parents claimed the facility made their children “better”, though it is clear from their history that had their children received appropriate positive behavioral supports from their local schools as required by federal and state law, those children would not have been sent out of state. A MA state senator whose nephew is kept at the Center had been successful at blocking several attempts by that state’s legislature to outlaw the practice over the years.

But meanwhile, the MA Attorney General had been investigating a 2007 incident wherein a “prank phone caller” who claimed to be a Rotenberg supervisor called the staff of one of the school’s dorms and ordered them to apply shocks to two children as “punishment for bad behavior earlier in the day”. One of the children was then tied or held down and received 77 shocks over a 3-hour period, and the other received about two dozen shocks.

It is notable that Rotenberg spokespeople claim that shocks are always delivered as an immediate consequence to stop dangerous behavior and never as delayed “punishment” for anything, yet the staff who administered these shocks did not appear to regard the order as unusual.

When Rotenberg staff learned the incident was being investigated, they destroyed video surveillance tapes that might have recorded it. This led to the Center’s founder, Matthew Israel, being charged with misleading a grand jury and being an after-the-fact accessory to a crime. A deal was brokered and Israel, aged 77, agreed to resign and accept 5 years probation to avoid a jail term. Also, a court-appointed monitor was put in place to oversee the facility on a daily basis.

This did not immediately stop the Center’s organized abuse of children with disabilities, but in June the MA state developmental disability services agency announced regulations to largely prohibit the practices. They would only be allowed for specific children who are currently court-ordered to receive them, under very tightly limited circumstances. MA Department of Developmental Services Commissioner Elin Howe (who, in a better time, ran NY’s OWPDD and was celebrated for her enlightened attitudes) said the new rules would “establish the highest practicable professional standards for the use of behavior modification for persons with intellectual disability.” Public hearings on the regulations were to be held in July. No final outcome was known at press time.

New York State continued its inexorable march to force people with disabilities who use Medicaid into managed care over the summer.

As of August 1, Personal Care is available only through managed care plans for people who have “Community” Medicaid, are not “dual eligibles” (don’t receive Medicare), are not in CDPA, and are enrolled in a “mainstream” Medicaid Managed Care plan. This is a small subset of people who need and use home-care, but the state does intend to include people who are not currently enrolled because they are “exempt” or “excluded” eventually. “Dual-eligible” adults will be included in April 2012. CDPA will be included at some point after July 1, 2012.

Effective October 1, assuming the feds approve, most adults considered “seriously and persistently mentally ill” and children with “severe emotional disturbance” who get Medicaid but aren’t “SSI or SSI-related” and who live in counties that have mandatory Medicaid managed care will be required to enroll in it. Some exemptions may be available.

Also effective October 1, people in Medicaid managed care or Family Health Plus will only be able to get prescriptions filled through a managed care process.

In process is an effort to reap the 90% Medicaid match the feds are holding out for implementing the “health home” model. Details are lacking but this appears to be a form of coordinated medical and non-medical support services for people who have chronic mental or physical conditions and high rates of hospitalization or emergency room use. Among the questions being asked is, how does this fit in with other plans to impose Medicaid managed care on many of the same people, and how will it be funded when the federal match declines to 50% after two years? Hopefully we can tell you more about this in December.

Over the summer, OPWDD Commissioner Burke sent out a letter to try to calm people who fear that the main purpose of that agency’s proposed “People First” Medicaid demonstration waiver is to force people into managed care in order to save money, or that it will result in people being less “safe”. She claimed that the real purpose is to provide more of the services that people really want and that nobody’s safety would be compromised. STIC Executive Director Maria Dibble joined an OPWDD workgroup that was asked for input on that waiver.

The materials provided to members of the workgroup made it very clear that one purpose of the waiver is indeed to apply managed care principles to control costs. The services that most people really want are integrated, personalized services determined through person-centered planning. Since these can’t be provided in segregated facilities, and recent news reports have made it very clear that such facilities are far from safe (see OPWDD Revelations Continue), then the waiver could actually improve safety if it really does ensure that everyone whose ideal lifestyle doesn’t include living in a segregated residence can get the supports and services they need in their own homes.

Nearly every person in the workgroup who was not an OPWDD employee strongly supported the following principles: person-centered planning, individual budgets, and some control over staffing for everyone regardless of where they want to live or work; person-centered planning facilitators, and service coordinators, “brokers”, or people who do similar tasks must not be employed by OPWDD or by any agency that provides direct services to the people they work for; full self-directed or self-determined services should be available to anyone on request without preconditions; all state regulations that are stricter than federal requirements and that block creative, integrated services that are controlled by the people who receive them, increase paperwork, or delay services should be removed; “medical necessity” should be defined as anything that supports the individual’s inclusion or participation in society, employment or productivity, or independence in any life activity; and the waiver development and implementation process should be governed by a board that consists mostly of waiver service recipients and their families. Documents from other workgroups indicated that many of their non-OPWDD members are thinking the same things.

However, it’s unclear how much real change will actually come. It appears that many OPWDD staff, especially fiscal staff, who are involved in this process have only lukewarm support for these concepts, and some are clearly opposed. In an August 19 article on the website of The Capitol Pressroom, a public radio program, Burke was reported to have said some things that do not bode well. She falsely claimed that only 10% to 20% of people in OPWDD institutions don’t need to be there; the actual figure is closer to 99%. She said a new waiver would not make any more money available to raise the salaries of workers who provide personalized integrated support services, of whom there is a critical shortage. While Burke may not be planning to make that money available, it certainly could be done. OPWDD direct-service staffers make 35% to 40% more than not-for-profit agency employees who do the same kind of work, so a plan for OPWDD to divest itself of direct operation of programs would free up lots of money. Also, Burke acknowledges that integrated services are less expensive than segregated ones. The main reason is lower personnel costs, so transforming the system to focus on integrated personalized services would make so much extra money available that the salaries of the people who provide those services could be raised by 10% while still cutting overall costs. Finally, Burke said, “To me, the more impactful thing we can do in the long term is have a different culture that’s just much more supportive of the individuals.” But “institutional culture” cannot be changed. It is part and parcel of a system that is designed for the convenience and efficiency of employees, and because it is hidden from view of the rest of the world, it is insular and self-protective, and always will be. If all Burke thinks she can do is “change the culture”, instead of changing the rules and regulations, how the money flows, and what types of services and settings will and won’t be allowed, then we’re in real trouble here.

On the other hand, OPWDD seems to be under great pressure from CMS to make serious fiscal changes, and, possibly, behind the scenes, from the US Justice Department to really emphasize integration. OPWDD will have to negotiate the terms of the waiver with CMS. There will be ongoing opportunities for determined advocates to continue to influence this process as it goes forward even if OPWDD’s feet must be dragged along to get it done.

Southern Tier ADAPT has been working very hard this past year to raise funds to send people to the Washington actions September 17-22. Six people are going and their experiences will be described in the next newsletter! By the time you get this they will be on their way to DC.

We have held bake sales, soup sales, ice cream socials, plant sales, bottle and can drives, and raffles. One of our members has set up an account for us at the Can Man (24 Olive Street, JC or Upper Front St., across from Hillside Gardens, Binghamton). The account is under Southern Tier ADAPT. Your contributions to this fund by offering your recycled bottles and cans when you drop them off, would be very gratefully appreciated. And to all our supporters who have helped make the DC trip possible, THANK YOU!

US law says corporations are “people”, with the same civil rights as human beings. The 2010 US Supreme Court Citizens United ruling gave corporations free speech rights. It equated money with speech to ensure that rich corporations will always be able to buy elections.

This is why:

• A majority of citizens favor single-payer health care but we can’t get it
• A majority of citizens favor strong anti-pollution laws but we can’t get them
• 60% - 70% of citizens, including super-rich investor Warren Buffett, say taxes should be raised on rich people and corporations to pay our debts but we can’t get that done
• 69% of Americans oppose cutting Medicaid but it’s on the chopping block anyway
• 89% of Americans in a 2010 poll favored raising taxes to ensure that people with disabilities can live in their own homes instead of segregated facilities, but we can’t get Congress to act
• The “Tea Party” is mostly funded by rich corporations, corporate executives, and corporate lobbyists like Fox News, the Koch Brothers, and the US Chamber of Commerce; they want to deregulate corporations and cut taxes for the rich and they are duping good-hearted people into supporting them

We must face facts. The REAL people of the United States, including people with disabilities, will never get what they want from government until corporate power is broken.

Join the movement to amend the US Constitution to end civil rights for corporations:

http://movetoamend.org/node/2325

Take back our government from a small minority of far-right-wing anti-tax fanatics and corporate shills:

http://rebuildthedream.com/

Boycott products made by the Koch Brothers: Angel Soft® Brawny® Coronet® Dixie® Mardi Gras® MD Bathroom Tissue Quilted Northern® Soft ‘n Gentle® Sparkle® Vanity Fair® Zee®

So far our 20th. Annual Campaign has raised $4,766.00. This isn’t bad but it’s well below our record. So if you received our letter and haven’t yet responded, please do so. Please use the return envelope and form we provided if you still have them; if not, write “2011 Annual Campaign” on the memo line of your check. Remember to indicate whether you would like your gift to be publicized in this newsletter.

Below are the names of donors who asked to be publicized.

THANK YOU VERY MUCH!

Priscilla Anderson

David Baycura
In memory of Joan Baycura

Joshua Bieber

Mr. and Mrs. Roger D. Brooks
In memory of Joseph & Frances Milasi

Bob and Carol Carpenter

Martin Crowe

Danny Cullen

Gerald and Cinda Day

Michael & Kathleen Devine

Sandra Dundon
In memory of Miss Ellie

William and Catherine McGowan

Rena, Laura and Frank Kovac

Gerald Hamilton

Herbert Hoffman
In memory of Esther Hoffman
In name of “Jiggs"

Alicia Jones

Maria Lenga
In memory of William Lenga

Susan Link
In memory of Daniel F. Link

Wayne K. Lombardo

Joyce McLarney-Bradley
In memory of Charlie Bradley

Juanita Mendez
In name of Jo Anne Novicky

William and Helen Mizera

Jo Anne and Randy Novicky
In memory of Pat Ciza

Mary Jane Purves
In name of Derrick Purves

Joseph & Heather Rinkavage

Patricia J. Rotundo

Peg Schadt
In memory of Ann Kattenbach

John & Rita Sejan

The Tony Stento Family
In name of Danielle Stento

Karen Stockton

Judith Tokos
In memory of Audrey Mura

James and Pamela Vincens
In name of Vincens family

Robert & Sandra Williams
In memory of N. Palmer Nelsen

Karl Wokan

Linda Yahner
In memory of Thomas Yahner

I am the new Administrative Assistant for the TBI Medicaid Waiver Program (RRDC). My previous work experience includes 33 years with Rehabilitation Services Inc./Sheltered Workshop for the Disabled, Inc.

I have a home in Endwell, NY with my husband of 20 years. Between us we have 3 daughters and 10 grandchildren. We enjoy traveling and trying to keep up with all the grandchildren.

I am enjoying my new position. I look forward to this new experience and many years with STIC.

I am proud to say that I have joined the Medicaid Service Coordination department at STIC. I previously worked as an MSC at SWS, Inc. for 5 years. I am originally from Long Island. I moved to the area to attend Binghamton University and I never left. I graduated with a bachelor’s degree in psychology. Thank you for the warm welcome!

I am very excited to have been allowed this opportunity to work for STIC. I have spent the past nine years working at The Sheltered Workshop for the Disabled Inc. I began my employment at SWS, Inc. as a job coach, transitioned into a MSC position, and in 2005 became the MSC Supervisor. I am thankful to be able to continue to work in a job that I love.

I have a bachelor’s degree in social work from Keuka College. I live in Conklin with my husband, Nick, two year old son, Jacob, and our black lab, Ramse. I am appreciative of the warm welcome I received from everyone at STIC.

by Kevin McBride

When I left the hospital (after eight months), I moved into a group home (14-15 people).

I didn’t have a key to the building. I was able to leave some evenings, because I was involved with serving as an assistant Scout-master. After six months, I transitioned to a residential program and currently share an apartment with another person. My roommate and I met at the group home and we generally get along OK. This program requires that we work with a counselor about four times a month on various independent living skills. I have been in that program since last fall.

I have been ready to be in my own supported apartment for several months. While approved to transition to this more independent living arrangement, the paperwork requirements have delayed my move for many months. A simpler system would allow me to stay in the current apartment and simply reduce the level and amount of staff support. But I will have to move to a totally different place.

I’m a computer geek. I have had to learn how to advocate for myself and it has been hard. When an agency gets behind in paperwork or has to prioritize the needs of many people, I have had to learn how to call Social Security, DSS, and others to advocate for myself. Although it is a good thing, it is very complicated and scary. Hospitalization confused my financial situation because I had bills to pay, old Social Security issues to get resolved, and confusing situations to untangle.

I don’t think it is easy for people who are recovering to have to move and move and move yet again. My timeline from hospitalization to my own apartment is still not complete after seventeen months. If I had been able to move from the psychiatric hospitalization directly to an apartment that offered a lot of initial support, but that gradually decreased as I grew my skills, I would have been functioning more independently sooner. This would have cost NY a lot less money, too. I am not advocating dumping people without support into isolated rooms. And I don’t mind sharing an apartment with another person. I am simply saying that the most integrated setting (as described in the Olmstead decision) is not offered when people have to go through many steps and many moves. We can go through those steps in one place as we make it our home if the support people can be fluid.

And finally, I have discovered that my volunteer work with the Boy Scouts has contributed greatly to my growing sense of who I am and what I have to offer others. I am starting back to college this fall. While going to class, doing homework, writing papers, I will also have to apartment hunt, move my things, get utilities set up, etc. That will be a lot to juggle.