The Fault, Dear Bruno, Lies Not in Our Stats...

by Ken Dibble

Many of you have probably heard about the major Medicaid fraud scandals in New York State that were revealed recently by the New York Times. The Times investigative reporters discovered that our state may be losing between 4.5 and 17.8 billion dollars each year. We've summarized the story here.

STIC is a Medicaid service provider. A large portion of our annual budget comes from Medicaid fees we collect for providing Consumer Directed Personal Assistance, OMRDD Home and Community-Based Waiver, and some supported employment services.

Each year tens of thousands of people with disabilities in our state benefit from Medicaid-funded service systems that, though far from perfect, do provide supports and services that help them to be as independent as possible in their communities. In many cases, there are simply no available substitutes for these services.

So STIC is intimately concerned about this issue. The steps that New York State takes in response to these revelations will have a potentially profound effect on the people we serve and on our ability to serve them.

And those are mighty big numbers. They are the kinds of numbers that really get people's attention. The kinds of numbers that make taxpayers really angry, and rightfully so. The kinds of numbers that make politicians want to hold somebody accountable, and rightfully so. The kinds of numbers that can lead to a lynch-mob mentality.

So before we get out the ropes and ladders and start inviting honest Medicaid providers like STIC to come out and swing, let's take a breath and look at some facts:

Across New York State, thousands of law-abiding disability service providers receive Medicaid funds. In order to do so, existing law and regulation requires them to maintain extensive records and submit detailed reports on the services billed for. The cost of all this recordkeeping and reporting is very high. Those costs are paid by taxpayers and they cut deeply into the ability of providers to actually deliver the services being paid for. Yet the scandals reported by the Times occurred exclusively because the state's Department of Health (DOH) either did not make sure that all of this expensive, legally-required information was provided or did not inspect it to detect suspicious trends before payments were made-things that the Times found were easy to do.

As the Times and other sources have reported, Governor Pataki and both houses of the State Legislature are heavily supported by health industry lobbyists. DOH's Medicaid oversight resources have been continuously cut back for several years running. The signs of impending disaster began to appear years ago when DOH-regulated nursing homes started showing a rising number of serious deficiencies, and became obvious when the Times revealed massive fraud and neglect in DOH-regulated adult "homes". Yet through all this, none of the state's top leaders demonstrated more than token interest in addressing this problem--that is, not until the muck raised by the latest Times investigation splattered directly on their shoulders.

Now that these people have been caught with their slacks around their Guccis they'll be stumbling and falling all over themselves and each other looking for people to blame. There is a real fear that this scandal will bring down a crushing new paperwork burden on providers who are already submitting more than enough information to enable officials to determine whether charges are legitimate--if only they bother to look at it. Increasing reporting requirements without increasing oversight in Albany will do nothing to prevent fraud. And if existing data is properly tracked and analyzed in Albany by people who are not beholden to or overseen by health industry lobbyists, there will be no need to ask providers for anything more than the law already demands.

So if angry politicians are looking for someone to hold accountable for this mess, they ought to look in the mirror. Of course, that's likely to be too painful for a lot of them, and some of them--or at least one of them--may see this as a golden opportunity to gain national fame as a defender of taxpayers' sacred property rights and the notion that Christian charity begins at home by finally getting those deep Medicaid cuts that they have been trying to achieve for over a decade. Surely this will be a popular populist piece of cake in a monstrous scandal's wake?

Think again.

The Kaiser Family Foundation commissioned a poll in April 2005 to find out about Americans' attitudes toward Medicaid. Despite long-running efforts by Congressional Republicans and Bush Administration officials, as well as state and local politicians, to disparage the efficiency and effectiveness of the Medicaid program, the honesty of its beneficiaries, and the costs to taxpayers of operating it, this poll of a nationally-representative random sample of over 1,200 people found overwhelming evidence that Americans like Medicaid, think it's necessary, and want it to continue and grow.

Here are some highlights, excerpted from the Foundation's press release:

While two-thirds of the public think their state has major budget problems, a substantial majority are reluctant to cut Medicaid to balance state budgets, and a majority think the federal government should maintain (44%) or increase (36%) federal spending on Medicaid.

74% of adults say Medicaid is a "very important" program, ranking it close to Social Security (88%) and Medicare (83%) in the public's mind, equal to federal aid to public schools (74%), and above defense and military spending (57%). About 8 in 10 Democrats (82%) and Independents (79%) view Medicaid as an important government program, while fewer, but still 6 in 10 Republicans (61%) express that view.

About a third of the public believes that Medicaid costs are a major reason for state budget problems. However, 52% say they "strongly" oppose and another 22% "somewhat" oppose cutting back on their state's Medicaid program to balance the budget.

So we'd like to remind any politicians who are planning to use this debacle to ride a wave of public indignation into Medicaid-cutting Valhalla in time for the next set of elections that this approach may leave them up a creek without a paddle.


by Michael Osenni

My wheelchair means freedom for me.
I can choose where
I want to go.
Whether inside or out,
Left or right
The choice is mine.

My wheelchair means freedom for me.
I can choose who
I want to be
Whether an architect,
Or a scientist finding a cure,
The choice is mine.

Bad Weather?
If the weather is bad, call 724-2111 (voice/TTY) to make sure we’re open. The answering machine will explain why we’re closed. Listen to the entire message since we sometimes ask you to call back to check later in the day. If we’re going to be closed, the message will say so by 7:30 am. For Deaf consumers, there will be a generic TTY message saying we’re closed. This message is always the same no matter why we’re closed.
September 2005


AccessAbility is published seasonally (Spring, Summer, Fall, Winter) by Southern Tier Independence Center. Letters, information, descriptions of disability experiences and ads are always welcome. Deadlines are February 15, May 15, August 15 and November 15.
Our address is:
Southern Tier Independence Center
24 Prospect Avenue
Binghamton, NY 13901

Subscriptions are $10 per year (4 issues). Subscriptions are voluntary, but are greatly needed to help cover newsletter production costs. Use the form on the back to subscribe.

AccessAbility prints unclassified ads free for disabled consumers, unless they promote a for-profit business. For-profit businesses can advertise in AccessAbility, in Unclassifieds or a display ad, at our regular rates. Ask the editor for information.

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

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


Advocates Win a Round in the Housing Fight

In July the House of Representatives passed a FY 2006 appropriations bill that restored all funding to the HUD Section 8 facility-based housing subsidy program (that provides subsidies to people living in HUD projects) and increased the Section 8 tenant-based Voucher program (which lets tenants use housing subsidy vouchers with any landlord who accepts them) by over $100 million compared to 2005. Also, the House soundly rejected the Bush Administration's "Flexible Voucher" program that would have seriously weakened the Section 8 program's ability to assist people with very low incomes. This was a major victory for disability advocates.

At press time we didn't have any information on Senate plans for Section 8. We'll let you know when we do.

CCFI Help America Vote Act Project

by Chris Zachmeyer

The Catskill Center for Independence, located in Oneonta, was recently awarded a grant to promote the successful implementation of the Help America Vote Act (HAVA) of 2002. This four-year project, Project HAVA, funded by the NYS Commission on the Quality of Care, will allow the Center to expand its efforts to ensure all New Yorkers are afforded the opportunity to privately and independently cast their vote at the ballot box on Election Day. One of the major goals of HAVA is to ensure full and equal voting access to voters with disabilities, something the Catskill Center has been working on since the early 1990s.

Other goals of Project HAVA include outreach to voters across 52 upstate New York counties to provide information and technical assistance on HAVA, the rights of voters with disabilities, voter registration and absentee ballots, polling site access and voting machine accessibility.

Currently, four regional trainings across the state are being planned to provide information about HAVA, voting rights of citizens with disabilities, how to file a discrimination complaint, and other voting related information to eligible voters with disabilities. These trainings will also include instructions for assessment of polling place accessibility. In addition, similar trainings will be provided for Board of Elections officials, polling site workers, politicians, and others with a responsibility for and an interest in the voting process. Facilitation of private and independent voting for people with disabilities will be addressed along with the previously mentioned topics.

The Center has developed an interactive website with information on accessible voting, registering to vote, filing a complaint, HAVA implementation, current news articles about HAVA and accessible voting, links to other resources, a voter pledge site, and a bulletin board listserv to ask voting related questions and have voting related discussions. In addition, a voter information hotline has been established to provide technical assistance and answer questions:

1-888-NYS-HAVA (voice/TTY)

To learn more about the project, or to find out how you can become involved, visit the Center's website at, email us at: or call the Center's HAVA Hotline at: 1-888-NYS-HAVA.

Courts Watch

Mr. Roberts Goes to Court

"Maybe that's why we're on this ship, cause we're not good enough to fight." - Doug Roberts, in Mister Roberts

Out of all the possible centrists, conservatives, and religious reactionaries George W. Bush could have picked to replace Sandra Day O'Connor on the Supreme Court, he chose John G. Roberts, Jr.. Roberts, a baby-faced baby-boomer, clerked for Chief Justice William Rehnquist. He has split his career between stints as a lawyer for Republican administrations and private practice. He has just two years' experience as a judge--on the federal Circuit Court of Appeals for the District of Columbia, to which Bush appointed him in 2003. Roberts is widely regarded by people of all political stripes as a smart, charming, cute, and funny guy. It's also been said that it's hard to know what he really believes. We agree, but here's what our research shows:

While he does belong to a couple conservative lawyers' groups, Roberts never joined the radical right-wing Federalist Society, as was widely and wrongly reported in the media.

Roberts argued in favor of several very conservative positions before the Supreme Court as a Justice Department lawyer working for Presidents Reagan and Bush I. But it's important to remember that lawyers argue the positions they're paid to argue--and most of the hard-right social policy beliefs attributed to him by opponents come from that period of his career.

As one of the most highly-regarded and in-demand appellant lawyers in the US, he argued many cases before the Supreme Court, representing a wide range of political and philosophical views. Unlike many rigidly socially conservative lawyers, he chose this variety of cases on purpose and is proud of it. He did argue against Williams in the Toyota v Williams case, in which the Supremes found that carpal tunnel syndrome doesn't meet the ADA definition of a disability that substantially limits one or more major life activities. That was not a happy day for the disability community, but as we said at the time, that's due at least as much to flaws in the ADA's approach to defining disability as it is to the Court's misinterpretation of it. And as a Circuit Court judge he later upheld Section 504 of the Rehabilitation Act's applicability to programs that get federal money. There's not enough evidence to say that Roberts is anti-disability rights.

His brief record as a judge suggests only that he tends to make the most narrow ruling possible on a given set of facts and law. Such a tendency is "conservative" in judicial terms, but it's neither "liberal" nor "conservative" in public policy terms; in some cases it benefits the Left, in others, the Right. With his narrow focus, he has ignored judicial precedents that call for broader interpretation at times, such as in the famous "hapless toad" environmental case, when he said that the federal government can't use the Constitution's Interstate Commerce Clause to protect an endangered species that lives in only one state. When he has taken such positions, he's been reversed by the Supremes--the same Justices he'll be working with if he is confirmed, including Scalia in at least one case. (In the toad case, Roberts also said there were other valid legal arguments not involving the Interstate Commerce Clause that could have been used to support the environmentalists' position. Whether that's right or wrong, it suggests that he was simply following the law as he saw it and not trying to advance an anti-environmentalist agenda.)

If we leave out the positions he's been paid to take, there's little evidence for claims by the Left or the Right that this guy is a public-policy conservative in the molds of Justices Scalia and Thomas. When Bush the First appointed David Souter to the Supreme Court, he, like Roberts, was called the "stealth conservative". Souter had a much longer record as a judge than Roberts does, and on that basis some right-wingers confidently predicted that he'd be another Scalia. They were wrong. Justice Souter turned out to be a moderate who has supported many progressive positions. Then there was Harry Blackmun, the "strict constructionist conservative" appointed by Richard Nixon whose opinion in Roe v Wade legalized abortion. Bush has sworn to appoint people to the Supreme Court who will echo Scalia's and Thomas's radical views, and he probably thinks Roberts is that guy. On the other hand, he could be confusing "conservative approach" with "social conservative", as Nixon and Bush I did.

In any case, in late August it seemed unlikely that any Senators would seriously try to block Roberts' confirmation. If they did, Bush would just appoint someone else who he thinks agrees with him--perhaps, as the mid-term elections approach, an avowed social conservative, in order to energize religious right voters. As long as the Republicans control the Senate, we're going to get Court appointees who are at least billed as very conservative. It might be better just to take Roberts than to stage a doomed fight that will push Bush even farther to the right.

Goodman v Georgia

Tony Goodman is not a nice guy. He's been convicted of violent assault, illegal gun possession and drug-dealing, some of which he did after he became a paraplegic. He's nobody's poster boy for disability rights. Of course, neither is George Lane (of Tennessee v Lane).

Even so, civilized nations don't punish criminals by making them sit in their own bodily wastes and risk injury every time they take a shower. But the Georgia State Prison had no accessible bathroom facilities, and Goodman's cell was too small to get around in his wheelchair. Given an accessible toilet and shower, and space to maneuver, most paraplegics can transfer themselves between their wheelchairs and the necessaries. Without them, they need help, and Goodman said the guards wouldn't help him even after he complained to their supervisor and the warden. He was injured while trying to transfer himself, and several times was left lying in his own waste for hours. So he sued the state, its prison department, the warden, and anybody else he could think of, alleging violations of the 8th. Amendment of the US Constitution (which forbids cruel and unusual punishment) and Title II of the ADA, which requires state governments to make programs and services, including prisons, accessible to people with disabilities.

The federal District Court said he couldn't sue for money damages under the ADA for the now-familiar reason that most such claims against states are unconstitutional on 11th. Amendment grounds. In fact, it held that he couldn't sue at all: because he'd been transferred to a different prison, his case was "moot".

The Eleventh Circuit Court of Appeals agreed that Goodman can't sue for money damages under Title II, but it overturned the District Court's holding that the case was moot, because the state had moved Goodman back and forth between the inaccessible prison and other prisons a few times and was likely to do so again. The appeals court also said that, even without the ADA, Goodman probably has a good 8th. Amendment case. This didn't satisfy Goodman, who still wanted compensatory and punitive damages, so he appealed to the Supreme Court. The Bush Administration supported him (as it did Lane's appeal), and the Supremes agreed.

This complicated and ugly case matters to people with disabilities for two reasons: First, the appeal to the Supremes cites the precedent they set in Lane: that is, if a state violates a person's fundamental civil rights due to that person's disability, and those rights are guaranteed by other parts of the Constitution, the ADA's remedies for such violations apply and can be enforced even if Title II itself is unconstitutional under the 11th. Amendment. Second, if Roberts is confirmed, this may be his first ADA case, and he may not agree with his predecessor on this point.

This case will probably be heard in November and we'll get the results next spring.

Title III Takes On Water but Stays Afloat

The US Supreme Court issued its decision in Spector v Norwegian Cruise Line in June. We reported this case last spring: It's a class action filed against the cruise ship company under ADA Title III for failure to make some ships physically accessible, and for discriminatory policies, including higher ticket prices, requirements for nondisabled traveling companions and waivers of medical liability, and a provision that passengers with disabilities could be removed from ships if they "endangered other passengers' comfort".

The federal District Court ruled that Title III applies to cruise ships, but its barrier-removal rules couldn't be enforced because at the time of the suit, a federal agency had not issued suitable access guidelines. The 5th. Circuit Court of Appeals said that US laws don't apply to foreign-flagged ships so no part of Title III was enforceable.

The flags in this case were "flags of convenience". Norwegian Cruise Lines is incorporated in the Bahamas and its ships fly that nation's flag, but its headquarters is in the US and it picks up passengers in, and returns them to, US ports. Its cruise ships are floating hotels, nightclubs and restaurants, and its policies state that any disputes with customers will be resolved under US law.

So it went to the Supremes, who did not grant a clear victory to either side. Justice Kennedy wrote an opinion containing several sections, and the "judgment of the court". Six Justices supported the judgement that the Circuit Court was wrong and must reconsider the case. There was no majority supporting the entire decision, but five Justices agreed with most of it, taking a weaker view of Title III applicability to foreign-flagged ships than disability advocates wanted.

The case law shows that the US can regulate foreign-flagged ships. Some cases suggest that US law governs only shipboard matters that "disturb the peace of the port" the ship is in. For example, we prosecute crimes committed on foreign-flagged ships in US waters. Others show that we can regulate anything that isn't purely a ship's "internal affair". So while US labor law doesn't apply to sailors on a foreign ship, it does apply to dealings between such ships and US-based longshoremen. Laws governing ships may conflict with those of other nations in whose waters ships sail and could affect US relations with other governments. Courts have ruled that Congress can take that risk if the law makes a "clear statement" that it applies to foreign-flagged ships. The case hinged on the fact that Title III, which covers public accommodations like hotels and restaurants, and public transportation, including passenger ships, contains no such statement.

Kennedy's opinion, with which four other Justices concurred, takes the "internal affairs" line. It says that things like ticket prices and rules that passengers with disabilities need nondisabled "minders" are company practices, not internal to ships, and therefore governed by Title III, but physical access issues that affect a ship's design, construction and safety may not be covered. Justice Ginsburg, with Breyer concurring, said that barring a real threat to international relations, "asserted internal affairs of a ship should hold no greater sway than asserted management prerogatives of a landlocked enterprise." Justice Scalia's dissent, joined by O'Connor and Rehnquist, insisted that without the "clear statement", no part of Title III applies to foreign-flagged ships.

Scalia may have gone overboard with that dissent, but he did point out that an international treaty governs passenger ship safety, and some of its provisions conflict with access design standards. For example, watertight doors must seal all the way around, and the treaty requires all such doorways to have a 3-to-6-inch-high "coaming" (threshold) to ensure a good seal. It might be possible to design a ship whose doorways can seal with thresholds no higher than 1/2 inch (the US access standard), but it's unlikely that existing ships could be retrofitted "without significant difficulty or expense", as Title III requires. In any case, such a ship would violate the treaty. There are limits on how much physical access can reasonably be expected from international ship operators-at least until disability activists start rewriting international treaties.

Maybe the plaintiffs should have tried to prove that "Norwegian" Cruise Lines is essentially an entirely US company and its "international" pretensions are fraudulent, having been adopted purely in order to avoid this kind of regulation by the federal government.

So what does this mean for travelers with disabilities? Some newer ships and cruise lines are more accessible than others, and people should shop around. In any case, these companies can't legally tack a surcharge onto your ticket price, make you bring a "babysitter", or throw you off the ship if some other passenger claims that looking at you makes her "uncomfortable". It would also seem reasonable to expect them to fully disclose in advance the access features of a particular ship and make an effort to book you on the most accessible of their vessels. And there could be further litigation on this issue, though that may just further muddy the waters.

Federal Medicaid Debate Grinds into High Gear

This summer saw several developments in the struggle over Medicaid "reform" and cost-cutting at the national level. Disability advocates and the Bush Administration agreed on some general cost-cutting strategies but were at odds on others. At press time there was no clear picture of how things will end up.

You'll recall from our last issue that Congress passed an allegedly binding budget resolution that called for cutting federal Medicaid spending by $10 billion over 5 years, and created a Medicaid Reform Commission to figure out how to do it.

In June committees in both the House and Senate held Medicaid hearings. Governors Mark Warner (D-VA) and Mike Huckabee (R-AR) presented the National Governors Association (NGA)'s proposals. They called for: higher co-pays; letting states offer different packages of services to different groups of people, perhaps based on diagnosis; "relief" from court orders requiring states not to cut or limit Medicaid services; changes to federal drug purchasing rules; limits on asset transfers by people who use them to hide income in order to qualify for Medicaid; and tax incentives and creation of insurance pools to increase coverage for uninsured people.

Although Congressional Democrats said they'd boycott the Reform Commission because it isn't truly non-partisan, the Commission is operating, and some public health advocates are on it. It issued a request for ideas this summer. The National Council on Independent Living (NCIL) proposed several: Substitute lower-cost home and community-based services for institutional long-term care where possible; demedicalize support services to end the use of expensive medical professionals for tasks that paraprofessionals or attendants can do; step up measures to detect and punish Medicaid fraud; cut prescription costs by changing purchasing rules, emphasizing generic drugs, creating multi-state purchasing pools, and tapping expected savings from transfers of "dually-eligible" people from Medicaid to Medicare prescription coverage; and consolidate programs to cut administrative costs. NCIL strongly opposed any co-pay increases.

Around the end of July, two Republican Senate committee heads said they were looking seriously at four ideas that resemble NGA and/or NCIL and/or Bush Administration proposals to meet the $10 billion target: changing drug reimbursements to reflect actual market prices more closely; restricting asset transfers; better Medicaid fraud detection and prevention; and savings resulting from the new Medicare drug program. They also said that Medicaid providers are pushing hard for rate increases, and they were non-committal on the subject of co-pays.

The "relief" from court orders that the NGA wants may come from a bill introduced in the House and Senate this spring: the "Consent Decree Fairness Act". It would automatically cancel consent decrees affecting state and local governments if they aren't renewed by a court every 4 years, or whenever a new official is elected. We aren't sure how dangerous this really is; if a consent decree is still relevant to current conditions, the court that imposed it will be monitoring it and it shouldn't be hard to get it renewed. Consent decrees may be settlements negotiated between parties to lawsuits over deinstitutionalization, education services, or civil rights violations, in order to save time and money, before a court rules. However, some federal courts have ruled that states violate federal Medicaid law if they don't pay providers enough to ensure that high-quality Medicaid services are readily available to meet the needs of all eligible people throughout a state. We don't know if the NGA also wants "relief" from such decisions. That could only be provided by changing parts of the Medicaid law, which would be bad news for people with disabilities.

On August 9 the Bush Administration presented its Medicaid proposals for the FY 2006 budget to Congress. These included both "New Freedom Initiative" and cost-cutting ideas.

The "New Freedom" items included the previously-proposed "Money Follows the Person" demonstration project as well as demo projects for respite and home and community-based children's psychiatric services; letting states opt to provide up to 90 days of home and community-based services to people while their Medicaid eligibility is being determined; and letting people with disabilities keep their own Medicaid coverage if their disabled spouse loses eligibility after returning to work. These are all good ideas, but Congress has repeatedly ignored many "New Freedom" proposals and the Bush Administration has never fought for them.

Bush's cost cutting plan includes some quite interesting things. It's also notable for what it doesn't contain; there is no effort to eliminate any optional services or increase co-pays, as had been feared. Here's our analysis (quotes are from the Administration's proposal summary):

  1. "...limit the federal reimbursement to states for Medicaid pharmacy payments (including drug costs and dispensing fees) to the amount the state would have paid, in the aggregate, for covered outpatient drugs based on the manufacturers average sale price for such drugs (as determined under Medicare)."

    This is the drug pricing reform that almost everyone has called for.

  2. Change the existing Medicaid ineligibility period resulting from a transfer of assets "for less than fair market value" to begin either on the date of the transfer, or the date when the person would otherwise become eligible for Medicaid (say, via a spend-down or termination of private insurance benefits) while "receiving long-term care services either in an institution or, in certain circumstances in the community", whichever is later.

    We don't know what "certain circumstances in the community" means, but it implies that the new rule might not be as tough on people who remain in their own homes.

    Some disability advocates oppose this. STIC's position is that people who can afford to pay for health care while keeping a decent standard of living, whether directly or by buying insurance, should be expected to do so. We'd prefer a universal single-payer system, with sliding-scale premiums based on income, but we don't have one. So the proper role of government-funded health insurance today is to pay for needed services that private insurance won't cover, and for services for people who can't afford or can't get private insurance, or who would be impoverished after purchasing the services. We see no reason in most cases to let well-off people give away large amounts of money or property and then expect the government to pay for their health care. An exception might be made for parents who set up special-needs trusts to provide a home for a child whose disability is so severe as to make earning enough money to buy and keep up a home unlikely.

  3. "reduce from 6% to 3% the percentage of provider revenues (attributable to a designated class of health care services) which a State can collect through a tax on such revenues... The new 3% limit would be effective immediately for [new] tax[es] ..." For existing taxes, the rate would be reduced gradually over 3 years.

    This limits "kick-back" schemes that let states collect more federal matching dollars than their actual Medicaid spending would justify, as applied to private providers. Fewer Medicaid dollars would be paid back to states as taxes and could be used for services instead. Of course, it also might force states to cut those services in response to the loss of tax revenue.

  4. Allow states to tax all types of managed care programs.

    This looks like an attempt to compensate states for the above cut in allowable tax percentage so they won't have to cut services. Of course, getting any such new tax on private businesses past the current crop of mostly conservative state legislators and governors might be pretty tough.

  5. "...preclude Federal matching payments for any portion of State payments to State or local government providers that (1) is not retained under the ownership and control of the provider for purposes of furnishing Medicaid care and services, or (2) as a condition of the provider's receipt of Medicaid payment, is either returned by the provider to the State or local government or used to supplant other State or local funding obligations."

    This completely ends "kick-back" schemes as applied to government-operated health care services. Again, it could force service cutbacks by states.

    STIC's position is that New York's federal matching share for Medicaid services should be increased; currently we get the lowest match rate in the nation to serve a disproportionately high percentage of people who qualify for Medicaid. Even if these "kick-backs" make more funds available to states for services, we think they waste money on paperwork and accounting--maybe even more than they save--and should be discontinued.

  6. Redefine "... 'rehabilitation services' to clarify that such services are those necessary for the achievement of specific, measurable outcomes related to restoration of an individual to his or her best possible functional level, so long as they are prescribed and furnished by (or under the supervision of) a physician or other licensed practitioner and are not provided as an intrinsic element of another program.... also ... disallow ... State expenditures ... if such services are routinely provided in the State without charge, are not billed on a fee schedule, or are not provided with respect to a specific individual."

  7. Redefine Medicaid "case management services" in similar ways to those described above.

    We aren't sure, but these two items might stop states from converting some existing non-Medicaid programs to Medicaid purely in order to get the feds to pay for them. Recent examples in NY included OMRDD's transfer of extended supported employment services to its Medicaid HCBS Waiver, and the OMH PROS initiative that made its supported employment program a "clinical" service.

    State officials and some advocates claim that on balance these conversions are good because they bring the state more money to provide more services. This may be the intent, but as experienced service providers we can testify that, in at least these two cases, all the "new money" has been or would be eaten up by the massive increase in regulatory requirements that comes with Medicaid funds. Those requirements also slow down service delivery, reduce consumer control, and cut the number of eligible people in some cases. Whatever the intent, in reality these conversions make things worse, not better. Providing more of the wrong services is not a net benefit, it's a net loss for both people with disabilities and all taxpayers. Instead of letting states cram non-medical services into a medical model to get more federal money, the feds should create fiscal incentives for states to consolidate and demedicalize these services.

  8. Cut the federal matching rate for both State plan "targeted" and HCBS waiver case management services to 50%.

    This wouldn't affect NY because our maximum Medicaid federal matching rate is already 50%.

  9. Set "... a State-specific limit on the amount of Federal matching funds available for the costs of administering the State's Medicaid program, by establishing an administrative costs allotment for each State. Such costs allotments would be based on the administrative costs for each State for a base year, increased for each successive year by the percentage increase in the consumer price index plus 4.5%."

    This might save money. We're all for cutting administrative costs, especially by consolidating NY's wide array of separate programs that do the same things for people with different disabilities at different ages into one office with one set of rules. However, in the wake of the Medicaid fraud scandal reported by the New York Times, which resulted from the state's failure to spend enough on administrative oversight, there could be trouble here (see this issue's editorial and this article).

Congress will probably be back from summer recess by the time you read this, and they'll be busily grinding all of these ideas, good and bad, into some kind of mish-mash whose shape we can't yet predict. Stay tuned.

Kendra's Law: Still Temporary

Disability rights advocates failed to keep the state Legislature from re-authorizing Kendra's Law this year. However, they did defeat attempts supported by both Governor Pataki and gubernatorial candidate Elliot Spitzer to make it permanent and even more restrictive.

"Kendra's Law", or the Assisted Outpatient Treatment Act, allows medical and social service professionals to drag certain people with mental illness into court to force them to take medication, participate in therapies, and/or enter an institution. It's named after Kendra Webdale, a woman who died after being pushed in front of a subway train by a man with mental illness who desperately wanted and asked for treatment that was repeatedly denied.

Research has shown that the real issue is failure of state and local governments to make adequate mental health treatment and support services available, not people refusing such services. The only good thing about the law is that it also forces governments to provide the services.

Not only does the law violate people's human and civil rights to be free of coerced medical treatment and unnecessary incarceration; program data show that it is used disproportionately to lock up and drug people of color in numbers far beyond the relative incidence of mental illness among them.

Here's a summary of the most important new parts of the law:

It will expire on June 30, 2010 if not renewed. The state Office of Mental Health (OMH) must provide annual reports to the Governor and Legislature on activities under the law, including demographic and cost data on those forced into treatment. OMH must also arrange for an "independent research organization" to evaluate the effects of the law by June 30, 2009 and make the evaluation public so we can have an informed debate on whether to renew the law again. Licensed psychologists and clinical social workers are added to the list of people who can request forced treatment from a court (they were already doing so under the supervision of agency directors who had that ability). OMH and the Office of Court Administration must provide mental health issues training to Supreme and County court judges and personnel.

The destructive proposals defeated by advocates included, along with the attempt to make the law permanent, an amendment to convert voluntary treatment plans, agreed to by people with mental illness as part of the court hearing process, to forced treatment, and an effort to increase the term of forced treatment from 6 months to a year.

Maul on the MISCC

As far as we can tell, neither the Most Integrated Setting Coordinating Council (MISCC) nor its permanent committees have met since last fall. Last time, we reported that an ad-hoc committee had revised the committee reports in response to disability community advocates' objections. MISCC Chairman (and OMRDD Commissioner) Tom Maul had then sent the revisions to the state agency heads for comments. In July, Maul wrote to MISCC members to tell them what was going on. STIC has a copy of his letter. Maul said that he expected that with the annual budget fight out of the way, the agency heads would be able to review the reports and he would "convene a series of meetings to include ad hoc committee members, MISCC committee chairs and members and top leadership personnel from each state agency" to get the final report done. To date, we have not heard that any of these meetings has been scheduled or held.

The rest of the letter described activities of the Pataki Administration that Maul called "significantly MISCC-related". Many of these were small funding increases for various home and community-based support programs that we reported in previous issues. One was the state Department of Health's ongoing work to prepare an application to the feds for the new Nursing Home Transition and Diversion Medicaid Waiver. During the battle to pass the MISCC law, disability advocates said that such a waiver was consistent with the plan for compliance with the Supreme Court's Olmstead decision that the MISCC was supposed to produce, and that the need was so clear that the state should go ahead with it before the rest of the plan was written.

That was not the case for two other "MISCC-related activities" listed by Maul. One was the state's shadowy hospital and nursing home "right-sizing" initiative, whose details both the state and the federal Centers for Medicare and Medicaid Services have tried to keep secret and which may be tied to Pataki's avowed desire to shove all New York Medicaid-funded programs (except those controlled by Maul at OMRDD) into one big managed care waiver. The other was the State Office For Aging's work to develop a single point of entry system for disability support services.

Certainly downsizing institutions and providing a single point of entry are important pieces of a good Olmstead plan; in fact, the latter is specifically mandated by the MISCC law. But both of these activities are far-reaching, potentially highly-destructive efforts to change the way long-term care services are delivered in our State. Planning and program development in these areas is the mission the MISCC is legally mandated to carry out, and depends critically on the data the MISCC is required to gather. The MISCC is the state's legally adopted mechanism for long-term care reform and the only one that has formal continuous input from the disability community. Yet these activities have been conducted entirely outside the MISCC.

Governor Pataki's political campaigns have been financed by segregated facility operators and lobbyists, and he clearly considers input from the disability community to be unpalatable. These developments are consistent with his Administration's previous attempts to render the MISCC's work meaningless and the disability community irrelevant.

The conclusion of Maul's letter states, "With these developments and many other state agency initiatives, New York is clearly moving forward with the most integrated setting agenda." That may be true, but the larger question is, "Whose agenda?"

Medicare "Extra Help" is Real

You may have received a letter this summer from the Social Security Administration (SSA) or the Center for Medicare and Medicaid Services (CMS) that talks about "Extra Help" with the new Medicare prescription program. We hope you read the letter and are acting on it. If you threw it away, you need to talk to STIC's Benefits Coordinator, or your Medicaid or Social Security caseworker, because this stuff is important.

This "Extra Help" is really the Medicare Part D Low Income Subsidy. It's what will protect many people from large deductibles and co-pays in the new prescription plan.

If you get both Medicaid and Medicare ("dually eligible"), you'll automatically get this "Extra Help". But remember that on January 1, 2006, your Medicaid drug coverage will end. Instead, you'll get prescription coverage from the new Medicare Part D program. This fall you'll get another letter reminding you that you can choose one of many prescription plans under Part D. If you don't choose a plan, you'll automatically be enrolled in one. There may be several very different plans that cover different drugs and have different rules. You really need to learn about these plans so you can pick the one that will work best for you.

If you're on Medicare but aren't "dually eligible", you'll also get to pick the Part D plan that's best for you. And if your income is low you may still be able to get the "Extra Help" but you'll have to fill out an application for it. The application isn't simple, and you may need help. If you don't fill it out, you may find that you either must pay between several hundred and several thousand dollars per year for medications, or not receive the medications you need.

New York State has promised to use Medicaid to pay for necessary drugs that "dually eligible" people need but that their Part D plans don't cover. But the new Medicare law won't let New York use Medicaid to help you pay deductibles and co-pays for medications. So please, don't ignore this issue. Read those letters and get the help you need.

New York Times Reveals Massive Medicaid Provider Fraud

In July the New York Times published a report of its investigation of Medicaid provider fraud and abuse in New York State. Experts told the Times that there is no precise measure of how much Medicaid money is lost annually, but it may range from a low of 10% in criminally fraudulent claims up to 40% if non-criminal billing errors are included. In NY, which spends about $44.5 billion annually on Medicaid, this would be between $4.5 billion and $17.8 billion a year. Half of this comes from NY taxpayers; the rest from the feds. So at best, about $2.25 billion in state funds is lost to criminal doctors, service providers and facility operators annually--close to the typical amount by which Governor Pataki tries to cut Medicaid each year.

The Times articles described shocking examples of provider fraud: A dentist claimed to have performed almost 1,000 procedures on patients in a single day and billed Medicaid for them. Ambulette operators allegedly provided rides to and from medical appointments for people who didn't need them. A doctor prescribed millions of dollars worth of a very expensive body-weight-increasing drug called Serostim, ordinarily used by people with AIDS-related wasting disease, to non-existent patients, and the drugs ended up in the hands of athletes who used them like steroids to build muscle. A Buffalo school district official authorized Medicaid-funded speech therapy for over 4,000 students in a single day without reviewing their cases.

The Times also reported that about 70 nursing home executives in the state have salaries of over $500,000 a year, and 25 make over $1 million annually, and that 75% to 90% of these salaries are paid for by Medicaid. Yet when their facilities were cited for substandard care, many of these executives claimed that Medicaid doesn't pay enough to keep the places up.

The Times gathered Medicaid billing data from the state Department of Health (DOH) through a Freedom Of Information Act request and used inexpensive computer software to analyze it. They quickly found "scores" of obvious suspicious billing patterns by providers that DOH officials had somehow missed. In fact, the dentist mentioned above was only prosecuted for fraud after the Times brought its findings to the state Attorney General last fall.

In response to the Times findings, DOH Spokesperson Dennis Whalen claimed that DOH was doing a great job of detecting fraud and that its efforts had saved over $9 billion in recent years, but refused to provide any documentation for this claim. Times investigators found questionable audits and reports that had apparently been ignored. Whalen said DOH had detected and taken measures to stop the Serostim fraud in January 2002, but the Times found that 80% of the fraudulent prescriptions were written after that date. The Times also found many instances where complaints about possible fraud were ignored by DOH, and spoke to several former DOH investigators who indicated that they were not supported by DOH administrators in their efforts. DOH officials also claimed that the State Attorney General's office has dropped the ball on some prosecutions. The AG's office said that DOH had botched those investigations. As AccessAbility has previously reported, Governor Pataki's political campaigns have been strongly supported by nursing home operators and some top DOH officials have been former nursing home/adult home lobbyists who represented many wealthy Medicaid providers.

The Times also reported that neither Governor Pataki nor Democratic State Assembly leaders took any action when informed of the scandal before the articles were published, but that Senate Majority Leader Bruno proposed legislation to "overhaul the system" that was opposed by both Pataki and Assembly Democrats. Like Pataki, Democratic and Republican leaders in both houses are heavily supported by lobbyists for nursing homes, health providers, and health worker unions. After the articles were published, Governor Pataki announced that he would issue an Executive Order to create a new independent Inspector General position outside of DOH to investigate Medicaid fraud. Attorney General Elliot Spitzer called for new laws to provide cash rewards to whistle-blowers who report fraud and to increase penalties for criminal providers.

While disability advocates applauded the revelations of massive provider fraud and the belated efforts to address it, many were concerned that the scandal would produce a backlash against both Medicaid recipients and law-abiding providers. The Times article itself and articles in other newspapers around the state contained misleading statements that contributed to these fears.

For example, the Times reporters said they saw an elderly woman walking to and from an ambulette without assistance and called it proof that people who don't need ambulette service are receiving it. The fact that a person can walk a few steps between a doorway and a vehicle does not mean that the person can walk several blocks to and from a bus stop or subway station and is no indication of that person's real need for curb-to-curb transportation. On the other hand, a cab or car service would be a cheaper alternative for such people and should be used, and paid for by Medicaid, when possible. Some local papers focused on Medicaid recipient fraud. While this does occur, it should be noted that local jurisdictions are only allowed to investigate recipients, not providers. The Times findings suggest that if providers were monitored as vigorously as recipients, the amount of criminal fraud discovered in any locality would dwarf anything Medicaid recipients do. And when Medicaid recipients commit fraud, what they get out of it is needed medical services in most cases, whereas what providers get is cold hard cash.

SCRIE Expands to People with Disabilities

Disability activists in New York won an outright victory in the housing arena this year. After an advocacy campaign of several years, the Legislature agreed to make a program that protects senior citizens living on fixed incomes from exorbitant rent increases available to some people with disabilities. Governor Pataki signed the bill into law this summer.

While this is not a statewide program--it covers New York City and 14 other large, densely populated urban and suburban communities that don't include STIC's service area--it is an important step toward making affordable housing available to people with disabilities as they struggle to leave institutions and return to the community.

The program is called SCRIE (Senior Citizens Rent Increase Exemption). It caps rents for eligible heads of households at 30% of their income, and provides tax abatements to landlords to compensate for the lost rent. To be an eligible person with a disability under this program, the person must live in a participating community and have a fixed income from SSI, SSDI, veterans' pensions or compensation, or be a working person on the Medicaid Buy-In.

While this is good news, there are still problems. The maximum income for people with disabilities under this program is $7,000 less than that for senior citizens. And we understand that while the new law will take effect immediately in New York City, the other 14 communities must choose to opt into the program. Advocates planned to go back to the Legislature next year to address these issues.


Annual Campaign Returns

How many different ways can we ask you for money? As many as it takes.

Folks, we're up to about $3,000 so far for this campaign. That's just 50% of our $6,000 goal. The money we raise will go directly to getting our new, larger quarters on East Frederick St. renovated. If you've been anywhere near our building or parking lot lately, you know we need that space pronto!

So remember the letters, with the forms and return envelopes, that we sent out this spring? Here's a reminder to return those envelopes packed with dough, and preferably also with those forms filled out.

If you prefer to give at work, you can make STIC your Donor Option for the United Way or State Employees Federated Appeal (SEFA). If you work for the Postal Service or other federal agency, you can't do that, so please consider making a direct donation to STIC.

If you give us permission, we'll publicize your gift, just as we're doing for these fine people below.

Bill Benton & Family

Lillian Boesch

Mary Borley
In memory of Scott Borley

Thomas Bowers

Sandra & David Cleveland
In memory of Morton & Katherine Magnus

Maria & Ken Dibble

Debbie & Dave Gouldin

Gretchen L. Kessel

Sam Liberto, Jr.
In memory of Saverio Liberto

Matt & Mary Ellen Salanger & Family

Janis and John Slack
In memory of Stanley Slack

Mr. and Mrs. Bill Thomas

Marjorie Tubbert

Pamela & James Vincens

Ruth White
In memory of Paul White

Lee & Marilyn Wilhelm

Madge A. Williams
In memory of Brian D. Williams

DOH Traumatic Brain Injury Medicaid Waiver
Celebrates its 10th. Anniversary

by Laura O'Hara

This year we celebrate the tenth anniversary of the NYS Department of Health's Traumatic Brain Injury (TBI) Medicaid Home and Community Based Services (HCBS) Waiver. In the ten years since the TBI Waiver program began it has assisted over 1,000 individuals statewide to lead life more independently within their communities.

STIC's pioneering community organizing and advocacy efforts in the TBI arena went into high gear in the late 1980s when we hired Pat Greene as Head Injury Advocate. She organized people with brain injuries, their families, and service providers throughout the Greater Binghamton Area to bring heightened awareness and more services to this unique and often-misunderstood disability group. Among her many successes was the establishment of New York's TBI Waiver program. Today Pat is an administrator of that program, which has set up Regional Resource Development Centers (RRDCs) across the state. The RRDCs follow STIC's original model of consumer-controlled community-supports development.

When the TBI Waiver first began it was a program designed to help people with traumatic brain injuries leave nursing homes to live life independently within their communities. This was a big step forward for disability rights. It was a step toward ending institutional bias against those living with disabilities. The waiver allows Medicaid to pay for the necessary services to support an individual with a TBI living outside of a nursing home-services that would normally not be paid for by Medicaid. The average daily cost to Medicaid is less per participant on the waiver than the cost of placement in a nursing home. Therefore, it was proven that in most cases it actually costs less to support an individual in the community than to institutionalize them. Of course that is just the dollar justification for Medicaid HCBS waivers. No one can put a price tag on the improvement in quality of life that a person can experience when they leave an institution to rejoin the community.

Over the years the TBI Waiver has evolved from freeing people from nursing homes to helping people avoid nursing home placement altogether. More and more people who have a traumatic brain injury will never have to experience living in a nursing home, if they choose not to, because they are being discharged directly into the community. Our program provides the supports necessary to give people a chance to live life independently. To date we have witnessed many success stories, and have faced many challenges as well. That is what's so wonderful about the Independent Living philosophy, which, thanks to Pat Greene and her experiences at STIC, has been formally adopted as the TBI Waiver philosophy. We believe in an individual's right to try, to make their own life choices, to succeed or fail. Consumer choice is the driving force behind the TBI Waiver philosophy.

It is a testament to the success of this program at increasing independence and self reliance that New York's forthcoming new Nursing Home Transition and Diversion HCBS Waiver is being modeled after the TBI waiver. This new waiver will be another major milestone for integration of people with disabilities into the community. It will allow the State to provide services to individuals who have been ineligible for Medicaid waivers in the past.

STIC continues to be an integral part of the TBI Waiver program. STIC is the RRDC for the Binghamton/Southern Tier West region, as well as the contract site for the Statewide TBI Neurobehavioral Project and the Statewide TBI Waiver Clinical Consultant. The RRDC at STIC serves over 200 people on the TBI Waiver, the second highest number in the state.
For more information on all kinds of TBI-related programs and services available in south-central New York State and beyond, call STIC at:

(607) 724-2111 (voice/TTY)

Ask for the TBI RRDC.

The Honor Roll
Takes a Vacation

STIC regrets to announce that this year's annual Awards Luncheon has been cancelled.

We want to assure everyone that several worthy candidates for awards were nominated, and that we intend to continue the Awards in the future. However, due to an unusual combination of rapid staff changes, new program development, and the need to put our Capital Campaign into high gear this fall, we simply do not have the time or resources to hold the event this year.

Thank you for your consideration.

The New ECDC:
We'll Shake You All Night Long!

by Sue Ruff
(who apologizes profusely for that headline, which she didn't write)

The Early Childhood Direction Center for the Mid-South Region (ECDC) has a new home on the second floor of the STIC building. Three rooms will hold three staff as we begin to acquire information and resources for families of children with disabilities, ages birth to five. The center will not just exist at STIC--it will be a fluid and traveling program that will reach out to families and providers in Otsego, Delaware, Chenango, Broome, Tompkins, and Tioga counties. We will develop a resource library available to rural and urban areas, as well information through the STIC website. We will provide a broad range of training programs for families, teachers, therapists, and other caregivers. We will assist families as they begin the long process of finding their way down the winding road of services for their children.

At the age of twelve, I started working with little ones when my parents brought home their sixth child from the hospital. Steven was born with Down Syndrome and the doctors had told my parents to put him in an institution and forget him. My parents told the doctors that Steve had a family and a home. Steve lived a medically fragile life, until his very damaged heart gave out when he was twelve. But he became the center of our family over those years. Steve was always the "waker-upper". He'd go room-by-room in the morning and sit on our beds encouraging us to get up and start each day. At the age of five, when the school psychologist left him alone in a testing room, he left the room and walked down the hall to a class of kids about his size. When she found him, the psychologist asked him why he had left her room and he told her he "came to go to school." But our school district would not let him come to school with his neighbors. He attended county educational programs. He did not receive speech therapy until he was nine years old. This was typical prior to federal law PL 94-142, later known as the Individuals with Disabilities Education Act (IDEA).

During high school, I had an opportunity to work for a short time with a lady who had opened a preschool for autistic children. She had trained with Maria Montessori and was a loving and gentle teacher, who believed all children could learn. She worried about what would happen to her students when they reached age five.

After college, I worked at a pre-school for children with all kinds of disabilities. Families were so thankful at that time to get any services at all for their children. For those children who were not deemed "educable", there was little available beyond a day care type of setting. Integration or inclusion wasn't an option. Children went to a special school and then as adults, to a sheltered workshop. And this still happens.

None of us like to date ourselves, but I've been a long term witness to history. As the parent of a young woman with disabilities, who went through the educational system in New York, I can look back at it all and say-there were good times and bad times. The good times happened in those years when she had a teacher who wanted her.

I have a nephew, named for his Uncle Steve, and he has a son with multiple disabilities. Last week, my nephew and I had a long conversation about their school district in the state of Washington. That district does not want to let his son start in the kindergarten class, even after his son has made great progress through early intervention and various therapies.

If our Early Childhood Direction Center can give parents and instructors the knowledge, options, skills, and hope to outfit them for that long walk ahead, I will feel we have done our job. I am optimistic, but cautious. My career has come full circle, it seems. I would like to see families and professionals come together with a common belief that we can do more than talk the talk--we can find ways to educate all of our children--together.

New Faces

Stacey Engel - Service Coordinator
I am happy to be part of the Service Coordination team here at STIC and am proud to be able to call myself a Sticster!! I have over 15 years of experience in the human service field, including Division for Youth, OMRDD, and the TBI Waiver program. I have an Associates Degree in business from Mohawk Valley Community College and a BA in psychology from SUNY Oneonta. I have also taken some graduate classes in special education at Marywood University. Everyone here at STIC has been very helpful and welcoming. It's nice to work in a place that has so much positive energy!
Sue Lozinak - Parent Mentor Advocate
I am very excited to be joining the newly expanded Education Department at STIC as a parent mentor advocate. I look forward to helping parents of developmentally disabled students negotiate the educational system.

My degree in psychology from SUNY Binghamton and many years of advocacy have prepared me for this exciting new position. As a parent of a 5-year-old son who has Down syndrome and a 12-year-old son who has learning disabilities, I have learned many techniques along the way that made the CSE process operate more smoothly. Through workshops, consultations and attendance at school meetings, I will support parents and students by promoting educational inclusion. My goal is to empower parents and students to advocate for themselves and feel proud of this accomplishment!

STIC Education Department Brings It All Together

by Jessica Arnold

Southern Tier Independence Center (STIC) would like to announce the development of a new Education Department. This department is unique to the region and will provide education-related services and information to children with disabilities and their families. The Education Department's focus will be on advocacy, information and referral services, and trainings. While we are still in the beginning stages of the program, our goal is to have all positions filled and to be up and running by the middle of September. It is our intent to meet the expressed consumer need for increased educational advocacy services while empowering parents to learn new skills and techniques to become self-advocates.

The department will bring together several components:

Our new Parent Mentor Advocate, Sue Lozinak, is already on board and available to talk or meet with you concerning educational issues. She will work with parents to help them negotiate the education system and become better informed of their rights. The Parent Mentor program specifically works with parents of children with developmental disabilities to help them become better advocates for themselves and their children. Jennifer Grove has returned to school and is no longer our Education Advocate. However, the service will continue to work with families of children with all disabilities. Both programs will provide the following services:

  • Serve as a mentor/role model for parents of students with disabilities in negotiating the education system.
  • Teach and empower parents to advocate on behalf of their children throughout the education process.
  • Support parents in developing their child's Individualized Education Plans (IEPs).
  • Mediation and conflict resolution between parents and school districts.
  • Promote educational inclusion.
  • Assist parents with school team meetings, and negotiations with school districts on Committees on Special Education (CSEs).
  • Hold workshops to train service providers and parents on educational advocacy techniques, as well as laws and regulations-particularly IDEA. They will invite Parent Representatives on the CSEs to attend these workshops and interact more with parents.
  • Consultations via phone and meetings with parents on a wide range of education-related issues.

STIC has been awarded a contract by VESID to operate the Early Childhood Direction Center (ECDC) for the Mid-South Region. Sue Ruff, our former Job Connections supported employment program coordinator, has taken the position of ECDC Director (see page 12). The center will cover Otsego, Delaware, Chenango, Broome, Tompkins, and Tioga Counties and will serve children with disabilities from birth through age five and their families. The goals are to provide an information clearinghouse and network for families, to assist families as they negotiate the CPSE (Committee on Preschool Education) process, and to offer training on a wide range of topics of interest to families and professionals over the six counties. There will be two other soon-to-be-hired staff members working with Sue in this program. The largely self-contained ECDC will work closely with other STIC staff and programs through our Education Department.

Our longstanding Transition Services program has been refocused and reorganized within the Education Department. It serves young people with disabilities who are at risk of dropping out of school or who have dropped out, or who are at risk of being placed in segregated situations after graduation, in several specific school districts in the area. Crista Zirgulis and Candie Stiles will be working in this program to provide assistance in the areas of vocational planning and preparation for life after high school.

Anyone with questions can call STIC at:

(607) 724-2111 (voice/TTY)

Ask for the Education Department.

STIC's Hometown Holiday Light Festival Returns!

STIC's Hometown Holiday Light Festival Returns!

Wednesday - Sunday November 23 - December 4

Every Day
December 7 - December 25

Wednesday - Sunday
December 28 January 1

(weather permitting)

5:00 pm - 9:00 pm
Otsiningo Park

Call (607) 724-2111 (voice/TTY)
for ticket prices and information


APS?: Come On, Hear the Noise

by Erin L.W.K. Duguay, Orientation and Mobility Specialist
Association for Vision Rehabilitation and Employment, Inc.

APS stands for Accessible/Audible Pedestrian Signal, and is a term often used when discussing accessibility issues for people who are blind or visually impaired. A small speaker is fixed to every corner of an intersection and is attached to the pedestrian button. When the pedestrian button is pressed, it activates the APS system, so that when it is safe to cross, a sound is emitted from the speakers communicating that information. Many different sounds have been used, including a voice describing which street and how long until the end of the cycle.

Because much of our environment is based on visual information, it can be expected that intersections are no different. Traffic lights are color coded, as are pedestrian signals (the white walking man and the orange hand) and walking lanes on the street which are identified by bold lines in white paint. For an individual with low vision, or no vision, this visual information is often useless. Traditionally, blind individuals have used the sounds of traffic to determine the correct time to cross a street and to help determine the location of the corner on the other side of the street. These techniques work very well in residential areas where traffic speeds are much slower, lanes are not as wide, and where drivers are looking for pedestrians. Large, complicated and heavily used intersections are now very common in our environment however, and are often situated near important resources such as grocery stores, banks, post offices and shopping centers. In these situations, fitting an intersection with an APS not only ensures safety in determining the correct time to cross, but the sound from the speaker can also serve as a beacon to help keep the blind pedestrian on a line towards the next corner.

What is really great about APS systems however is that they are not just useful for people who are blind or visually impaired. Intersection safety is a concern for all pedestrians with or without a disability, including children, adults, and seniors. For the blind or visually impaired traveler, Audible Pedestrian Signals not only increase safety, but they make more of the environment accessible.

Learn more about Accessible Pedestrian Signals and offer your opinion about the need for these Signals in the Greater Binghamton Area. Attend the APS Forum in the conference room at AVRE, 55 Washington St. in Binghamton, on September 22, 2005. Refreshments, registration and orientation at 4:00 pm. Presentations begin at 4:30 pm and will be followed by a community discussion to end no later than 6:30 pm.

Please RSVP by September 15, 2005 if material in a format other than large print or Braille is needed.

BC Country is not available for return rides, so if this is a concern, please contact Erin Duguay at:

(607) 724-2428 x. 133
for alternatives.

Eighth Annual Buddy Walk & Community Fun Day

Bring your Family & Friends Promote awareness and acceptance for all people with Down Syndrome

October 15, 2005
12:30 pm - 4:30 pm
Highland Park
Endwell, NY

One Mile Walk      Live Music
Kids Games     Carousel Rides
Face Painting
and Much More!

Live Appearance:
Chris Burke
(You've seen him in
"Life Goes On"
and "Touched by an Angel")

Sponsored by

Southern Tier Down Syndrome Information Network

For more information
or to be a Sponsor:


Fall 2005
Issue No. 80