When Is Fraud Not Fraud? When It's a "Revenue Enhancement Policy"!

by Maria Dibble

Medicaid has become the big monster that everyone loves to hate. It is blamed for our budget woes, for causing property taxes to rise and for any number of accusations of fraud and abuse. All you need to do is turn on the national or state news to hear claims of how Medicaid costs are out of control and how we need to cut programs and reduce expenditures.

Recently, I attended a round-table discussion of the NYS Senate's Medicaid Task Force (which was open to the public but at which the public was not permitted to speak), where I listened to county officials from surrounding counties (not Broome) rip the Medicaid program to shreds. One official actually said something like, "I have to tell my public works people that they can't fix a pothole just because I have to fund Medicaid." Now folks, if it was a choice between filling a pothole or helping a disabled child get medication or see a doctor, where would you want to see your money spent? Sure, none of us like potholes, but jeez! (I must note here that Senator Meier, who was chairing the meeting, did have many innovative and creative ideas for using community-based supports to cut institutional long-term care costs, and we hope that he is able to get others to see the light.)

On the other side of the coin, Medicaid is very attractive to lawmakers and bureaucrats because the federal government funds half of every Medicaid program in New York. So while they keep attacking Medicaid in the media, where it makes for great press and appeals to a taxpayer's pocketbook, New York's politicians and other officials keep looking for ways to charge more programs to Medicaid to get that dollar-for-dollar match. The hypocrisy is mind-boggling.

The state Office of Mental Health (OMH)'s new Personalized Recovery Oriented Services (PROS) for people with mental illness is the latest example of such irresponsible abuse of Medicaid dollars.

Taken directly from the OMH web site, PROS is defined as:

"...a comprehensive recovery oriented program for individuals with severe and persistent mental illness. The goal of the program is to integrate treatment, support, and rehabilitation in a manner that facilitates the individual's recovery. Goals for individuals in the program are to: improve functioning, reduce inpatient utilization, reduce emergency services, reduce contact with the criminal justice system, increase employment, attain higher levels of education and secure preferred housing. ... There are four 'service components' in the program: Community Rehabilitation and Support (CRS); Intensive Rehabilitation (IR); Vocational Support (VS); and Clinical Treatment, an optional component of a PROS program."

For the sake of this editorial, I will only discuss the Vocational Support component, which would fund extended supported employment services for people with mental illness at STIC and every other supported employment program in the state.

Supported employment has two phases. The "intensive" phase covers job readiness preparation, placement, and initial training. It is funded by VESID. The "extended" phase includes ongoing regular support for people once they've settled into the job. It's funded by various state agencies depending on the person's "primary" disability. For people with mental illness this service typically involves monitoring and troubleshooting problems that could, if not addressed, cause stresses that would destabilize the person's mental or emotional state and ability to function on the job.

It's important to understand that extended supported employment services for people with mental illness is not a new program, and people with mental illness are not a new group of people who need new employment services. New York State has funded the service for people with mental illness for many years, at varying times through VESID or OMH. STIC is one among many experienced and successful providers of the service. The service is non-medical; it consists of elements of vocational training, peer advice, and service coordination. It meets the need and works very well as it is. There is no need to change it. As currently designed, it's not an expensive program but it is an essential one; without it, it's certain that large numbers of people with mental illnesses would lose their jobs. What is needed is a way to fund it for more people.

That's where this new PROS VS system is supposed to come in. PROS VS is a medical-model program. It has been designed that way on purpose, so as to qualify it for Medicaid funding. (That's not the only way to get Medicaid money for such a program, but I'll get to that point in a minute.) OMH says that this will be the only way in which extended supported employment for its clientele can be funded in the future. STIC would need to apply for a "license" to continue to provide extended supported employment services to people with mental illness. We (and several other agencies) have chosen not to apply for the license, for the following reasons:

In order for providers to get paid for providing extended supported employment services under PROS VS, the consumer must be on Medicaid, and must work at least 15 hours a week (not counting vacations and ordinary sick leave). If the consumer does not wish to, or is unable to, comply with these requirements, then agencies cannot bill for services. So much for consumer choice!

OMH says that the reimbursement rate for those who are on Medicaid is high enough to allow agencies to cover the costs of people whose services wouldn't be billable, but we've done the math and it isn't true. If it were true, it would be questionable ethically, if not legally, since it would be a deliberate inflation of costs.

Even more offensive than this is the minimum hours requirement. This would affect the most significantly disabled people who need the support the most. It's common for people with mental illness to start out at very low levels of employment due to a limited ability to tolerate stress. Sometimes they can gradually increase their hours, sometimes not. Either way, working is better than not working for lots of reasons. And since getting intensive services for a short-hours part-time job requires a waiver from VESID, you can be sure that any person who gets placed in such a position has already had it documented and justified to the nth. degree. But OMH won't honor such a waiver. So much for cooperation among state agencies. So much for a coordinated state disability employment policy. So much for rationality in government--but that's an old story. I consider this policy to be discriminatory against people with significant mental illnesses--the kind of discrimination that's illegal under the ADA--and it must be changed immediately!

These new requirements would force us either to coerce people to apply for Medicaid when they don't have a medical need for it, stop providing extended supported employment services to people with mental illness, or provide the service for free--which we can't afford to do.

As I said, our staff is trained and experienced in supported employment best practices--and currently fully qualified under all applicable state and federal laws to provide the service. Under PROS they would kindly be "grandfathered in". But if we participate in PROS, when current staff leave, we would have to replace at least some of them with people who fall into one of various licensed or professional categories, such as nurse practitioner, creative arts therapist, social worker, etc. While some people with these backgrounds may also have experience in supported employment, just having a degree in one of those areas does not guarantee that they would be able to help a person keep a job. It does guarantee that it would cost more to employ them. Supported employment is a vocational service, not a medical one. The only reason for requiring these "professionals" is that it allows the service to be billed to Medicaid. This is a knowing and deliberate fabrication of medical need solely for the purpose of obtaining Medicaid funds. If it's not fraud under legal definitions, it's as near to it as makes no practical, ethical, or moral difference.

It's also not the only way to get Medicaid to fund a non-medical service. When OMRDD did a similar conversion, they applied for a Medicaid Home and Community-Based Services waiver, thus eliminating this and other inappropriate requirements. While we also opposed using Medicaid funds for supported employment in that instance, at least it didn't force staffing requirements that were unnecessary and more costly. (It did, however, force monitoring and recordkeeping costs that pretty much ate up every "extra" dollar that the Medicaid funding was supposed to produce.)

With the staff requirements, eligibility limitations, and other unnecessary regulations, the cost of extended supported employment for people with mental illness would be prohibitive and we would simply, though very reluctantly, have to stop providing this service. When I pointed out to an OMH official that the cost of the program will increase under PROS, he agreed, but said, "It will cost New York taxpayers less." Well, New York taxpayers, does it really matter to you whether it comes out of your state or federal taxes? Overall, the program will cost more, meaning you will pay more! And what would you like to bet that if OMH gets away with this, next year some allegedly "fiscally conservative" New York and/or federal politicians will demand that Medicaid spending be cut even more--maybe on homecare, or prescription drug coverage--because for some mysterious reason that spending just went up?

Not only that, but PROS VS isn't even likely to make the service available to more people. Instead, just as happened with OMRDD's Medicaid supported employment services, all the new money would be used up by the increased cost of the new staffing and reporting requirements. And if by some miracle it wasn't, our elected officials would probably pull any New York money that the federal Medicaid dollars replaced out of the program and spend it on a football stadium or a cheese museum or a new nursing home for a campaign contributor. You can bet your bottom that there will be no significant increase in people served as a result of this asinine plan.

Fortunately, we do have a one-year grace period during which we will continue to get paid for extended supported employment services for people with mental illness as usual. We will use that time well, and we will definitely get some changes!

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.
December 2003


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Courts Watch

Garrett vs. Alabama is Back!

Pat Garrett is back in court. Garrett is a woman with breast cancer who was fired by the University of Alabama, apparently simply because her boss was uncomfortable being around people with cancer. Her case, Garrett v Alabama, became infamous when the Supreme Court used it not only to deny people with disabilities the right to sue state governments for money damages under the ADA's Title I, which governs employment discrimination, but also to lay out an argument for declaring unconstitutional the law's Title II edict against discrimination in programs and services provided by state governments.

The ADA wasn't the only law under which Garrett sued, though. She also filed under Section 504 of the federal Rehabilitation Act. After she lost her ADA case, the federal district court that first heard her suit then considered her 504 claim--and ruled against her again, saying that the Supremes' finding that Congress overstepped its bounds in "abrogating" (overriding) states' 11th. Amendment immunity from lawsuits in the ADA also applies to the Rehab Act. She then went to the federal 11th. Circuit Court of Appeals, which ruled in her favor and sent the case back to the District Court.

Section 504, which predates the ADA by almost 20 years, forbids discrimination due to disability, in both employment and the provision of programs and services, by any entity that gets federal funds--including universities and other programs operated by a state. The Rehab Act provides that, by accepting federal funds under the Act, a state automatically waives its 11th. Amendment immunity. You'll recall that this immunity has been the basis for several recent Supreme Court decisions, including Garrett, that have limited US citizens' ability to enforce civil rights laws against state governments.

But there's an important difference between the ADA and the Rehab Act in how the 11th. Amendment is abrogated. The ADA is a civil rights statute that simply declares that no state is immune from suits under it. The Rehab Act, though, is primarily a program law (it funds state vocational rehabilitation agency programs such as VESID supported employment, and federal grants for Centers for Independent Living, among other things). States don't have to accept Rehab Act money, and the law is very clear that if they do, they voluntarily consent to waive immunity. The Supreme Court has viewed such voluntary waivers as more binding on states than the involuntary kind found in the ADA.

Another case we've talked about before, Garcia v SUNY Health Sciences Center, re-enters the picture here. In that case, a different federal Appeals Court said that state governments must knowingly consent to abrogation of immunity under the Rehab Act, and ruled that New York could not have done so because it would have assumed, after the ADA, that it no longer had any immunity to waive.

A 3-judge panel of the 11th. Circuit, in affirming Garrett's standing to sue under Section 504, rejected that argument. Citing its previous decision in Sandoval v Hagan (a case about an Alabama law requiring that drivers license exams be given in English), the Court said that the fact that a state was aware of an explicit abrogation of immunity in a federal program law, and continued to accept federal money under that law, proved that the state knowingly consented to waive its immunity. The Supreme Court reviewed Sandoval, and while it overturned the Circuit Court's decision in that case on other grounds, it specifically approved its stance on immunity waivers, stating that "...the Rehabilitation Act Amendments of 1986 ... expressly abrogated State's sovereign immunity against suit brought in federal court ..." and adding that it is "beyond dispute" that private individuals could sue a state under that law.

As of press time, Alabama had not decided whether to appeal this decision. If they decide to do so, they would probably first ask the full slate of 11th. Circuit judges to rehear the case and overturn what the 3-judge panel said. Depending on the results of such an "en banc" review, either side might then appeal to the US Supreme Court.

While this case doesn't help the beleaguered ADA, it is hugely important because it could strengthen or destroy the Rehab Act's value as a civil rights protection. Stay tuned.

Tennessee v Lane

This is the ADA Title II case that is headed for the Supreme Court that we reported on last issue. It concerns physical accessibility of state court facilities, and it could be the excuse the Supremes have been looking for ever since the Garrett decision to find Title II's provisions concerning state governments unconstitutional in their entirety.

Since our last issue, the state of Minnesota has filed an amicus ("friend of the court") brief in support of Title II's applicability to state governments, and advocates were able to get nine other states, including New York, to sign onto that brief. Seven states have submitted a brief in support of Tennessee's position against Title II. Several other pro-ADA briefs were filed, including one from the former US Attorney General under the first President Bush, Dick Thornburgh. Bush the Younger's Justice Department has even filed as an "intervenor" in support of Title II. The Supreme Court has scheduled oral arguments for January, with a decision expected sometime before the Court adjourns in June 2004.

Barnhart v Thomas

Note to the disability advocacy community: You know, it's true that the ADA and other civil rights laws are under vicious, unprincipled attack by right-wing extremists, and it's also true that as a result, the ADA has been severely weakened, perhaps beyond repair. This is very frustrating and upsetting. Nonetheless, being frustrated and upset doesn't remove the requirement that disability advocates should use intellectual honesty and reasoned argument to pursue their goals. After all, we aren't unprincipled, are we?

Pauline Thomas was an elevator operator whose job was eliminated. Being unemployed, she filed for Social Security disability benefits because she has heart disease and some orthopedic problems with her back. The Social Security Administration rejected her claim because she didn't meet the minimum requirement for benefits--being unable to do her current job due to the disability. That decision was correct. She lost the job because the job no longer exists; if the job had continued to exist, she would have continued to be able to do it. And Justice Scalia, no matter what a jerk he has been, and will continue to be, in other disability and civil rights cases, was perfectly correct in ruling against her.

The Social Security Administration uses a different and more stringent definition of disability than the ADA does. And not even the ADA would say it's illegal discrimination to eliminate a job that just happens to be held by somebody with a disability because, for the past 50-plus years in this country self-service elevators have been a commonplace and the job is obsolete.

The uproar over this case that was generated by some advocates who should know better accomplished nothing more than making people with disabilities look like whiners demanding "special" jobs. We have real problems to deal with--IDEA, the Medicare drug law, Tennessee v Lane, what almost happened to Terri Schindler-Schiavo. Please, let's use common sense and pick our battles--before we lose all of them.

I Can't Think of Another IDEA Pun

The Senate's version of the Individuals with Disabilities Education Act (IDEA) reauthorization bill (S. 1248) has been reported out of committee and awaits scheduling for a final debate and vote. During the fall of 2003, the Senate was mostly focused on Iraq/Afghanistan funding and the Medicare prescription program (see Medicare Prescription Plan...). However, there was a lot of behind-the-scenes advocacy on IDEA, and some small but significant changes were made to the bill by the HELP committee.

This article describes the most recent events. We've covered IDEA extensively over the past several issues; please see them for more detailed information. Once again, we've read the actual bill and formed our own conclusions based on our extensive experience with special education issues.

There were two important changes to the Senate bill:

1. Short-Term Objectives

As we've reported, both the House and Senate versions would substantially alter this provision of the current law.

The House proposed a two-track system: students whose disabilities don't preclude a typical academic course of study would have annual goals and be evaluated using the same systems and timetables as nondisabled kids, while students whose intellectual disabilities make standard academics impractical would have short-term objectives and more frequent progress evaluations.

S. 1248 does not envision a two-track system. The original version called for annual goals for all students with disabilities and said an IEP (Individual Education Program) must contain: "...a statement of how the child's progress toward the annual goals ... will be measured, including through the use of quarterly or other periodic reports, concurrent with the issuance of report cards, that delineate the progress the child is making toward meeting the annual goals..."

The latest version makes a subtle change in this language. It now says the IEP must contain "...a description of how the child's progress toward meeting the annual goals ... will be measured and when periodic reports on the progress the child is making toward meeting the annual goals (such as through the use of quarterly or other periodic reports, concurrent with the issuance of report cards) will be provided."

Some advocates are calling this a "technical" change that doesn't really improve the bill. We're not so sure. The original version at least appeared to create a mandatory requirement to issue progress reports only concurrent with standard report cards; the new version makes it clear that this is optional. In other words, the IEP Team can choose to have a more-frequent progress-reporting schedule for students with disabilities. They'll still be reporting on progress toward annual goals, but they may do so as frequently as they would have for short-term objectives. Let's face it; what really matters is how often progress is monitored and plans are adjusted to address emerging needs, not whether there are written short-term objectives.

The bill does contain a "strict construction" clause that says the law does not require any information to be included in the IEP beyond what's explicitly listed. This means the current law's mandate for short-term objectives and frequent progress reports would be gone. And, unless the advocates are on top of the situation, what Congress granteth in law, the US Education Department may taketh away by regulation. For these reasons, we think the House bill's language is still preferable. But at least now, if the Senate version prevails, a good IEP Team--or one forced to be good by a good advocate--should be able to provide whatever level of progress tracking is needed by individual students.

2. IEP Team

Another potentially important change concerns who can be required to attend an IEP Team meeting.

We've has always said that not only the new House and Senate versions of IDEA, but the current law, are too weak on IEP Team participation. We think that every teacher who works with a student with a disability should be on the Team--though we don't think that means they all need to attend every meeting. The Senate bill says only "at least one" regular education teacher, if the child has or will have any, and "at least one" special education teacher, must be on the Team. Note also that both the original and latest Senate versions provide that "at the discretion" of the parent or the school, other people can be on the IEP Team, and the "strict construction clause" doesn't apply here. To us, that means a parent can require more teachers to be on the team.

Anyway, membership on the Team is a different issue from attendance at Team meetings under IDEA. In the original Senate version, a Team member could be excused from attending if both the parent and the school agreed. The new version says that the Team member must also agree to the exclusion, and that the parent must consent in writing to the exclusion.

What does this mean? Most importantly, a school can't deliberately schedule meetings for dates and times when certain people can't attend and then try to pressure the parent into letting the meeting go on anyway once they get to the meeting room. Schools and parents will have to agree before each meeting on who must show up. Also, good teachers and other folks could come to meetings and fight for plans and services that the school administration would rather not have them speak up for.

Still Bad News

S. 1248 remains unacceptable on the discipline issue. Though advocates fought long and hard, they were unable to get the "stay put" clause, which currently lets kids with disabilities facing possible expulsion to "alternate programs" exhaust their appeals before being moved, put back into the bill. For this reason alone, people with disabilities and their families should oppose this bill. They should also remember that the House version--which wipes out virtually any special consideration for discipline issues involving disabilities that affect behavior--is far worse.

The Senate bill also still contains a section that could cause parents to have to attend a hostile IEP meeting after filing a formal complaint. While we note that parents can avoid this by opting for third-party non-binding mediation, or by agreeing with the school district to waive the meeting, we believe this provision will still be used to intimidate families, and it must be removed. The House bill, which doesn't specify that this must be a full IEP team meeting, is better on this issue.

Trouble Ahead

When the Senate bill comes to the floor, it's expected that several Senators will try to amend it. Most of these expected amendments would be bad.

For example, an attempt may be made to add language similar to the House bill's provision that state governors must set special attorney-fee caps for IDEA lawsuits. This is unprecedented; no other civil rights law incorporates such caps. Having a child with a disability frequently cuts deeply into a family's budget; such families are at least as unlikely as low-income members of minority groups to be able to afford legal fees. And there is no proposed cap on what school districts can pay their lawyers, which means that schools would be likely to have much better-quality legal support than parents in these cases.

Another possible amendment may tack on a school voucher system. STIC's position continues to be that any voucher system must include requirements that no school, public or private, may refuse to accept a student due to disability; that any school, public or private, must meet all IDEA requirements; and that vouchers must provide enough money to make all of the schools, public or private, within a community equally viable options for any student. So far as we can determine, no elected official has ever put forth a voucher proposal that meets all of these requirements. Nor are they likely to do so, because the main goals of the voucher-pushers are to cut education costs, and to eliminate regulations that protect both the civil rights of students and the academic integrity of what schools teach.

The Outlook

The Senate did not take this up before its holiday recess.

That means that advocates and families still have time to act. We are continuing to hear from Congress that parents aren't making a strong showing of concern about IDEA. If that's true, it's a big mistake.

We at STIC have been critical of many professional education advocates for their refusal to accept that there are big problems with IDEA, with special education, and especially with the way in which children are "classified" as having disabilities. Much more than minor tweaks to beef up enforcement of the current law is needed to create a truly effective and appropriate special education system.

But when big changes are made to a law, there is a danger that the baby will be thrown out with the bath water. Recently we've been talking mostly about the Senate bill, which is clearly better in most respects than the House version, but there is no guarantee that the best provisions of either bill will be in the final law. In fact, the worst parts of both could be adopted.

Though we disagree with other advocates on some points, we all agree that if the House bill, the Senate bill, or any combination of the two as they now stand, becomes law, bad things will happen to children with disabilities in the education system. That is, bad things will happen to your children. If you don't get busy and start talking to your federal legislators about this, you're going to get up one fine morning and go to an IEP meeting, only to learn that a lot of stuff you'd come to rely on is gone and your kid is in serious danger of being badly mistreated by your school. We aren't kidding. It's time to wake up and get to work on this. Now!

Medicare Prescription Plan Takes from the Poor and Gives
...Nothing Much to Anybody

In late November Congress finally passed a law to provide Medicare coverage for prescription drugs. The law runs over 1100 pages long and very complex. No one person knows everything that's in it, and a lot of misinformation got spread around as the fight over its passage went on. It's been hard to get the facts, but we think we've got most of them here.

The short story is, people whose only health insurance is Medicare will have more prescription drug coverage than they had before. For people with other health insurance options besides Medicare, the picture is unclear. It may be that some people who are also eligible for Medicaid drug coverage could lose some or all of that coverage. But it's also possible to read the law as exempting such people from harm.

We'll explain all this, but before we do, there's a lot of stuff you'll need to know in order to understand the issues properly. We'll try not to bore you with this brief primer on government-financed medical insurance:

The first thing you should know is that any politician who says during the 2004 campaign that he/she helped get a wonderful new plan to provide Medicare prescription drug coverage will be lying. They may or may not have helped, but the plan is nothing to crow about. Compared to most typical employer-provided prescription plans, the Medicare plan is very weak.

The second thing you should know is something that most people with congenital disabilities do know but most other Americans don't: Medicaid is a far more comprehensive medical insurance system than Medicare, in all respects, not just prescription coverage. And the Medicaid that NY makes available to people with disabilities compares favorably with the best employer-based health plans. Even with the new prescription plan, Medicare likely won't cover a lot of things that NY Medicaid covers, and unlike NY Medicaid, it charges high premiums and co-pays for most of what it does cover. Especially important here is the fact that Medicaid pays for any prescription or non-prescription drug, and any equipment, that is medically necessary. Seniors would have been better off demanding that Medicaid coverage be expanded to them instead of asking for a Medicare drug benefit, but it's too late now.

The third thing you should know is that Medicare is not just a medical insurance program for elderly people--it's the only medical insurance available to millions of younger Americans who become permanently disabled after having held a job. Conversely, Medicaid is not just medical insurance for poor nondisabled people--it's the only medical insurance that provides lifetime coverage to millions of people with congenital disabilities for such things as personal attendants, wheelchairs and other assistive technology, and prescriptions, regardless of their ability to work.

There are big gaps in coverage between these groups, and if these programs were as simple as we've described, lots of people with disabilities would have no medical insurance at all. Fortunately, the old laws let these programs overlap to provide at least minimal coverage to most people who need it. For example, a person can be "dually eligible" for both programs. A young American who incurred a work disability or a senior citizen with a significant disability could ordinarily only get Medicare, unless they also had a very low income. But if their disability required supports that Medicare wouldn't pay for, such as ongoing personal assistance services outside the home, or most prescription drugs, they could "spend down" their assets to become eligible for Medicaid. ("Spend down" means they could hand over enough of their income to the Department of Social Services to put them below the Medicaid eligibility threshold.) Adults of working age with disabilities who had jobs and lived in a state like New York that had a Medicaid Buy-In might not have had to do the spend-down; instead they could pay a premium for Medicaid coverage. Some people who couldn't qualify for Medicaid could still get Medicaid to pay their premiums for Medicare's "Part B" program, which covers, to some extent, medical services not provided in a hospital. ("Part A" covers hospital costs and other stuff that most private insurance plans call "major medical", with no premium for that coverage as long as Medicare taxes were withheld from your pay when you were working.)

So what's in the new Medicare Law? Beginning in 2004, Medicare recipients can buy a "discount" card that may provide up to 15% off some prescription prices in some pharmacies. Very low-income people would get $600 of free prescriptions tacked onto the card.

Beginning in 2006, at minimum, there would be a standard, fully-government-funded, prescription plan available to all participants. We believe this plan would have a covered "formulary" with at least one drug from each "family" of drugs now approved for medical use in the US, though there could be more options--we haven't seen details. If private insurers find it profitable to do so, they could offer competing plans that participants could choose from. These plans might also have limited formularies. The law does not permit many advocates' preferred solution of having the federal government control drug costs by negotiating drug prices with manufacturers. Instead, conservatives say the "market" will control costs through competition--but the law offers billions of dollars in government subsidies to private insurers to encourage them to offer plans. So much for "market control". Some critics say this is a sneaky way to lure people out of the government-funded plan and then leave them hanging after subsidies end and the private coverage gets cut back. Other critics say there's no guarantee, given the past history of attempts to privatize Medicare coverage, that any providers will want to offer a plan even with the subsidies. By definition, Medicare is for people who have an increased risk of medical problems due to age, disability, or both--not an attractive group for any insurer. In any case, the law mandates that at least the basic standard plan will be there.

For people with incomes above 150% of the federal poverty level, and assets over $10,000 for an individual or $20,000 for a couple, there will be a $250 annual deductible and a $35/month premium for the drug plan. The plan would then pay 75% of annual drug costs up to $2,250, 0% of drug costs between $2,250 and $3,600 (the infamous "donut hole"), and 95% of drug costs over $3,600. If your income is under 135% of the federal poverty level and you have assets under $6,000 for an individual or $9,000 for a couple, the deductible, premium, and "donut hole" exclusion would not apply to you. Between 135% and 150% of poverty and assets under $10,000 for an individual or $20,000 for a couple, these subsidies would be reduced on a sliding scale.

Participation in any Medicare prescription drug coverage plan would allegedly be optional for all Medicare-eligible people. They could choose to enroll or not enroll. How this will actually work is unclear. One provision of the law says that dually-eligible people would automatically be enrolled in a randomly-chosen plan if they haven't chosen one by a certain date. However, that provision also states that this does not prevent anybody from declining to participate in any plan. Another provision says that Medicare will replace Medicaid as the primary drug coverage for people who are dually-eligible, and Medicaid coverage would not be available for any part of the cost of drugs covered by Medicare, but we aren't sure this can be applied to people who choose not to enroll in any Medicare drug plan. The best-case scenario seems to be that the government will try to sneak as many "dual eligibles" into the plan as it can, hoping they won't notice until it's too late--but if they do notice they can opt out. If so, then all dually-eligible people would be wise to pay attention and opt out. However, it's also possible to read the law as forcing all dually-eligible people into the Medicare plan. We just don't know.

The law does say that if a dually-eligible person participates in the Medicare drug plan but needs a drug that isn't covered by that plan, then Medicaid can pay for that drug. What drugs Medicaid does pay for is up to the individual states; while New York is very good about this, other states may not be.

As you can see from the means-tested coverage brackets, if dually-eligible people are forced into this plan, some of them could pay more money for less prescription coverage than they have today. This would not be good, especially for dually-eligible people who qualify for the Medicaid Buy-In, whose incomes would preclude any subsidies--though in most cases they would still be better off working than not working. It's also been alleged that people with higher incomes who can still get Medicaid to pay their Medicare Part B premiums would lose that support. It looks to us as though all references to "premium subsidies" in the new law apply only to the $35/month premium for the Medicare drug plan. We don't see any language that affects Medicaid subsidies for Part B premiums. Out-of-pocket share of Part B premiums would go up for people with incomes above $80,000. That's not good because means-testing Medicare will threaten the unity of its broad-based political support over time--but it doesn't affect Medicaid-eligible people. It's also important to remember that all of this only applies to people who are dually-eligible for Medicare and Medicaid. If you receive Medicaid but aren't Medicare eligible, nothing will change for you.

Earlier in the legislative process, a plan to impose a co-payment on Medicare-funded home health services was discussed; that did not make it into the final law. There is a cut in reimbursement to Medicare home health providers that could make such services harder to get, but no co-payment for recipients.

Also under discussion was a plan to have the federal Centers for Medicare and Medicaid Services pick a few major medical suppliers to decide which products, such as diabetes supplies, oxygen therapy, wheelchairs, and sleep surfaces, Medicare would pay for. Not only would this limit the variety of options available to people (and some types of equipment must be highly individualized to be effective), it would reduce or even eliminate market competition in some medical equipment industries, thereby driving up costs. We aren't sure if this was included in the law as passed.

Some critics say the new law will cause employers who offer prescription plans to their retirees to drop those plans. We haven't seen or heard an explanation of this claim; the law in fact provides financial incentives to employers to continue such plans--and anyway, few employers provide plans to retirees for free; typically retirees have to pay through the nose for such coverage and the Medicare plan may be a better deal for some of them. If such a plan is the result of collective bargaining, we doubt any Medicare law could change it.

The new law also contains "health savings accounts" and a pilot project to test competition between government- and privately-designed benefits packages in a few cities. These are very controversial measures. However, the "savings accounts" are essentially just a tax shelter for people with high medical insurance premiums, not directly related to Medicare at all. And in our experience, pilot studies typically have very little impact on public policy. Far more important to the future of Medicare will be the political climate when the results of those studies come in--a constant factor whenever any "reform" measure is on the table--and that's ten years from now. The only "research data" that most elected officials consider when making policy decisions is opinion poll and campaign contribution numbers. The pilot doesn't even start until 2010 and could be cancelled at any point before then.

There are some bright spots in this law, though for sure they are paltry and few. As we said, people whose only medical insurance is Medicare will have more prescription coverage than they do now--though we emphasize that it will be nowhere near as good as what employer-based plans typically offer. Also, Medicare will now pay for an initial physical exam for new beneficiaries, for screening for diabetes and heart disease, and for "coordinated treatment" for chronic illnesses. Medicaid payments to hospitals would be increased, as would Medicare fees for physicians.

Essentially what Congress did was create a very expensive plan--$400 billion over ten years--that yet somehow does not provide very much in the way of benefits. And they appear to have paid for this plan by cutting prescription coverage for the poorest of the poor--if not by outright mandate, then with a confusing, underhanded bait-and-switch.

Democratic Senate Minority Leader Tom Daschle says he'll introduce legislation to repeal some parts of the new law. Whether he'll be able to get any traction on that is unclear. Regardless, there is one last thing you should know about this: This was not a partisan Republican hatchet job. It was supported by many "moderate" Democrats in both houses of Congress, and the main reason the result is so inadequate is because those same Democrats could not muster the courage to oppose President Bush's two waves of irresponsibly massive tax cuts, so there is now no money in the federal coffers to pay for a good plan. If nothing else, this story should teach us that politics as usual--from either party--can't save us from ourselves.

Mental Health Advocates Sue the State Again!

Just a few months after a coalition of mental health advocates sued New York State for its failure to clean up notoriously negligent adult "homes", several of the same organizations filed another suit over unavailability of mental health services for people with mental illness and chemical addictions (MICA).

Mental health researchers and advocates have long known that many people with serious mental illnesses who are either not diagnosed or cannot get proper treatment will seek to "self-medicate" with alcohol or street drugs. While illegal drugs and alcohol may initially make such people feel better, over time their continued use makes the underlying mental illness worse. This is the most common source of the MICA syndrome.

People with MICA need mental health treatment programs that can simultaneously address chemical addictions. Standard substance-abuse treatment programs can't meet this need.

It's been a longstanding quirk of New York State's substance abuse treatment and criminal justice systems that standard substance abuse treatment programs are well-funded but MICA programs are not. People with MICA as well as people with ordinary substance abuse disabilities tend to get involved with with the criminal justice system for the same reasons. But while people with typical substance abuse disabilities can usually get into a treatment program within days or weeks of conviction, people with MICA may spend months or years in jail or prison awaiting a treatment "slot". All of the people involved, including the incarcerated people with disabilities themselves, the judges who convicted them of petty crimes, and the prison and jail operators who are housing them, agree that these people don't belong in jail and should be receiving mental health treatment. Due to short-sighted state funding policies, there simply is not enough treatment to be had.

The suit, William G. and Walter W. v Pataki, et al., was filed by the Bazelon Center for Mental Health Law, the Urban Justice Center, the Legal Aid Society of New York and Swidler Berlin Shereff Friedman, LLP. As in the adult "home" lawsuit, the plaintiffs filed under Title II of the ADA, which prohibits discrimination due to disability by state governments in the provision of programs and services, and Section 504 of the federal Rehabilitation Act, which outlaws such discrimination by any entity that receives federal money. The suit argues that New York arbitrarily provides services of vastly different quality to people with ordinary substance abuse disabilities than it does to people with MICA. It also claims direct harm to people with disabilities because sending people with mental illnesses to jail can make their disabilities worse. The advocates point out that the state could use the same money it spends to jail these people to provide appropriate mental health treatment instead, so cost is not a legitimate reason for the lack of services.

Regents Give Disabled
Students an "A" for "Effort"

New York State's Board of Regents has extended its "safety net" deadline for secondary students with disabilities to 2009.

In an effort to upgrade the quality of education for New York's children some years ago, the Regents announced a gradual process to make its optional high "Regents Diploma" standards mandatory for all high school graduates; easier-to-get "local diplomas" would be phased out. During this process, the "safety net" would allow students who fail the required Regents exams to take an alternate "competency" test and qualify for a local diploma. The phase-out was to have been completed this year.

However, students with disabilities don't seem to be doing as well as expected on the Regents exams. Is this because there's something wrong with them? No; absolutely not. If you leave out scores from the state's "Big Five" city school districts, you'll see that one out of seven students with disabilities passes all of the required Regents exams today, compared with one out of 33 in 1998. In fact, a higher percentage of students with disabilities outside the Big Five pass the Regents than nondisabled Big Five students do. So the problem is with the quality of education in the Big Five schools, not with the ability of students with disabilities to perform at high academic levels.

Nevertheless, the Regents chose to extend the "safety net" for all students with disabilities in the state, not just those in the Big Five. This move was regarded by advocates as unnecessary and likely to reinforce negative stereotypes about disability and intelligence.

Salerno Blunder Kooky

In a stunning display of ignorance and/or political cronyism, the New York State Assembly's Republican minority caucus has appointed Anthony Salerno to the state's Traumatic Brain Injury (TBI) Advisory Council.

Salerno is notorious for his operation of the mismanaged, negligent, and abusive Northeast Center for Special Care (NCSC) in the Hudson Valley, as well as other nursing homes around the state that are frequently cited by health authorities for major deficiencies.

Most recently, in October, his Julie Blair Nursing and Rehabilitation Center in Albany was placed in "immediate jeopardy", the most severe deficiency citation a facility can receive short of being closed. At that time, State Health Department spokesman Rob Kenny told the Albany Times-Union that immediate jeopardy citations are rare; of 685 nursing homes in New York State, only 12 have been cited thus in 2003. He neglected to mention that at least 4 of them are owned by Salerno's company.

Salerno was apparently deemed appropriate for the TBI Council, which advises the Health Department on TBI services and policy, because of his claim that the NCSC is a specialized high-tech rehabilitation center for people with brain injuries (it is in fact simply a "skilled nursing facility"--a standard nursing home that accepts anybody with Medicaid, Medicare, or private-pay insurance coverage), and perhaps because of his association with former employees of the defunct NewMedico Corporation, which committed widespread egregious Medicaid and Medicare fraud in the name of head injury "rehabilitation" in several facilities across the nation in the 1980s and '90s. It is also possible that Salerno's contributions to Governor Pataki's political campaigns influenced the Republican minority's choice.

For all of these reasons, Salerno was deemed by outraged disability advocates to be a completely unacceptable choice for the TBI Council. "Appointing Salerno to the Council is like rubbing salt into an open wound," said Maria Dibble, Executive Director of the Southern Tier Independence Center, which operates one of the state's TBI Regional Resource Centers. "When are these people going to stop this political pandering and get serious about disability policy in this state?"

Salerno is even viewed with distaste by his colleagues in the nursing home lobby. The Nursing Home Community Coalition of New York State's spokesperson, Cynthia Rudder, was quoted in the Watertown Daily Times as saying, "Possibly, this is someone who should not be in the business," after the NCSC was placed in immediate jeopardy last July for the third time since its opening.

Terri's Story

by Over 20 National Disability Organizations

The story of Terri Schindler-Schiavo was in the news this fall. You probably saw her on TV, a middle-aged woman lying in bed, smiling and turning her head to listen to the people around her. Terri sustained a brain injury in 1990 under mysterious circumstances, and there have been published claims that her husband was abusive. The video shown on TV was taken by her parents and smuggled out to the news media in violation of a court order. Sometimes the laudable principle of family privacy is used by people to get away with actions they know can't stand the light of day. This was one of those times.

This article is from a statement issued by over 20 national disability organizations, including the Center on Human Policy at Syracuse University and the National Council on Independent Living, of which STIC is a member. It describes Terri's story and its meaning as well as we could ourselves, so we're printing it virtually unedited.

The "right to life" movement has embraced her as a cause to prove "sanctity of life." The "right to die" movement believes she is too disabled to live and therefore better off dead. Yet the life-and-death issues surrounding Terri Schindler-Schiavo are first and foremost disability rights issues--issues that affect millions of Americans with disabilities, old and young.

Can she think? Hear? Communicate? These questions apply to thousands of people with disabilities who, like Ms. Schindler-Schiavo, cannot currently articulate their views and so must rely on others as substitute decision-makers. The law requires that a guardian's decision be based on written documentation or other clear and convincing evidence of her wishes. Her husband and guardian, Michael Schiavo, says she would not have wanted to live in her current condition, but there is no written documentation or compelling evidence of this. There is just his word.

Early on in Michael Schiavo's quest to remove his wife's source of nourishment, an independent guardian was appointed upon request by Schiavo's own attorney, George Felos. That guardian, attorney Richard Pearse, issued a report to the judge stating that Michael Schiavo was not a credible witness to his wife's end-of-life wishes because he waited several years before coming forward with the claim that she wanted to die. Pearse also noted that Michael Schiavo would benefit financially from her death. Pearse was quickly removed at the request of Felos. Experts on the issue of guardianship point out that it is always desirable that a person in Terri Schindler-Schiavo's position have an independent representative who has no particular interest in the case other than her. Since the dismissal of Pearse in 1999, Terri Schindler-Schiavo has never been appointed another independent guardian. The law Florida Governor Jeb Bush has just signed calls for one now.

The peculiar series of events that have led up to the current debate seems to have avoided both the judge's scrutiny and media coverage. Michael Schiavo says his wife would not have wanted to live in her current condition. And under Florida law a spouse has the right to decide, though his powers are limited by the US Constitution.

Michael Schiavo conveniently remembered Terri's alleged wishes only after the malpractice judgment was awarded. A review of court records shows that of the $700,000 from a malpractice settlement Michael won that was to go for her care, over half has been spent on his legal fight to disconnect her feeding tube. Over $200,000 of it has been paid to his attorney George Felos. Michael Schiavo has refused to let his wife receive therapy from a speech pathologist, a common type of rehabilitation available to people with brain injury. A prominent expert filed an affidavit that Terri Schindler-Schiavo can swallow her own saliva, and could potentially be weaned from the feeding tube and recover some speech, so that she could indicate her own wishes.

A recent New York Times Sunday Magazine report stated that after months or years with little sign of consciousness, people may still be capable of complex mental activity. The reporter, Carl Zimmer, wrote, "To the medical world, ...hundreds of thousands of ...Americans who suffer from impaired consciousness present a mystery." Whether Terri is--or isn't--capable of "high level thought" is not the real issue here. It is clear that she is conscious and responsive beyond mere reflexes, as has been demonstrated by her ability to track with her eyes, respond to verbal commands by physicians who examined her on video, and react to those she loves.

She has a severe brain injury, yet has not undergone the rehabilitation that is typically given to people with this type of disability. People with severe cognitive disabilities are devalued as lives not worth living. In truth, the lives of all of us with severe disabilities are often considered expendable.

Americans who have disabilities--cognitive disabilities like Ms. Schindler-Schiavo--have rights. Congress decided that in 1990 when it passed the Americans with Disabilities Act (ADA). Yet most of society does not consider that Terri Schindler-Schiavo has any rights other than the right to die. We believe she has a right to therapy and support; we believe the ADA requires that.

Consider David Jayne, a 42 year old man with ALS. Every five seconds, a ventilator on a cart next to his bed pumps air into his lungs. He is not able to move. "Yes, I am very passionate about the Terri Schindler-Schiavo issue, because I live it," says Jayne, who was profiled in Time magazine in 2001. Twelve years ago, Jayne would have dismissed this existence as a living hell. Today he says, "If someone had told me I would be paralyzed and tethered to a ventilator, yet still find meaning in life, I would not have believed them. It is incredibly wrong for society to decide who lives or dies based on their opinions of what level of quality of life is worth living."

In this matter of living as a disabled person, those of us who live with disability are the experts--not husbands, not parents, not doctors. We know that life with a disability is worth living, and we know that what makes life awful for us is the attitude of "better off dead" that drives much of the thinking surrounding people like Terri Schindler-Schiavo.

The fear of disability and the resulting bigotry adhered to by most nondisabled Americans is often cited by people with disabilities as one of the most difficult barriers to overcome. In a recent column, Bill Press stated, "I wouldn't want to live like that, would you?" We respond: "Like what?" Terri Schindler-Schiavo is characterized as "...a brain-damaged woman who has been kept alive artificially." Meant to signal horror, the concept has no real meaning to us who live by "artificial" means. Is a person on dialysis being kept alive artificially? Is a person taking insulin being kept alive artificially? Is a person who undergoes open-heart surgery, or cancer treatment, or intensive care in a hospital being kept alive artificially?

It is a well-known fact among those of us who live with disabilities that a feeding tube is a low-tech support, and people who use them can and do live full and meaningful lives. It was invented in the 19th. century and relies on nothing more than gravity to make it work.

Terri Schindler-Schiavo is said to be in a "persistent vegetative state." But is she? In court, the medical experts were divided. FL Circuit Judge George Greer says she has not demonstrated sufficient actions to prove "cognitive function" because her actions were not "consistent" or "reproducible." But Florida law defines "PVS" as a condition in which there is no evidence of responsiveness. By ignoring Florida law, Judge Greer has violated her due process rights, as many of us asserted in our friend-of-the court briefs.

Historically, people with disabilities such as autism, Down syndrome and cerebral palsy have been thought to be incapable of communication. Increasingly, yesterday's assumptions about inability are being thrown out when confronted with the reality of people exceeding the low expectations put on them by others.

In 1990, the Supreme Court held, in the Cruzan case, that experts' subjective determinations of things like "persistent vegetative state" invite the very "quality of life" judgments that the Court found were inappropriate.

Terri Schindler-Schiavo's fate is entwined with all disabled people who rely on surrogates. If the legal standard in cases involving termination of life support is reduced to the point where Ms. Schindler-Schiavo's "quality of life"--as determined by others--justifies her death by starvation, then what protections exist for the thousands of us who cannot speak due to disabilities?

Discrimination against people with disabilities is part of our nation's history. Eugenicists called for the involuntary euthanasia of 60,000 "hopeless cases" of persons with disabilities in institutions in the last century, and urged the killing of "defective" children. Thousands in our nation were sterilized against their will because they were "defective". Infants born with disabilities have been denied lifesaving medical treatment. And people who become severely disabled, like Terri Schindler-Schiavo, are said to be better off dead.

The need for constitutional limits on the powers of surrogate decision makers is nowhere more clear than on a question as fundamental as life or death, because the consequences of abuse or misjudgment are both ultimate and irreversible. Treating people differently based on health or disability status violates the rights of people with disabilities under the ADA. Absent proof that it is truly the person's decision, withholding medical care based on the belief that s/he would rationally want to die because of a disability is discriminatory.

Due to bias against disability and ignorance about the support systems and successful coping strategies that preserve autonomy, meaning and pleasure in life, some physicians have decided that some deaths are more rational than others and that incompetent ill and disabled people do not deserve the same health care that "competent" people would receive. When health care providers deny people with severe cognitive disabilities the health care they need to live, we believe they are violating the ADA.

The belief that people with disabilities like Schindler-Schiavo's are "better off dead" is longstanding but wrong. It imperils us all.



Man Keeps $480 More Each Month, And His Medicaid!
by Carole Kramer

James Dean, you said it all so clean
And I know my life would look all right
With a Buy-In to fuel my dream

(Major, serious apologies to the Eagles)

James Dean (a pseudonym) works at Denny's and needs Medicaid to pay for the support programs and medical insurance he needs to live and work due to his developmental disability. Neither Denny's nor any other private employer offers that kind of medical insurance.

In order to keep Medicaid, James had been paying a "spend-down" each month, giving about $480 back to the Department of Social Services (DSS) to lower his income so he could remain qualified for Medicaid. Mr. Dean was getting $1,075 in Social Security Disability Insurance (SSDI) benefits and earning $300 each month at Denny's, but did not want to work more because virtually all of his additional earnings would just go into the spend-down.

James' sister Dizzie helps him manage his affairs. In June 2003 she heard about a new program called the "Medicaid Buy-In for Working People with Disabilities" (MBI), which allows someone like James to pay a low, income-based premium for Medicaid instead of a big spend-down.

When the program started in July, Mr. Dean and Dizzie tried to apply and called the local DSS office. The person they spoke with did not know about the program and said they did not have the correct forms yet. Dizzie faxed the office information about the program and called again. Nobody replied to her messages.

Ms. Dean called the state Medicaid hotline and was told she should provide the DSS office with the information about the program and how to apply. She told them this wasn't her job and a supervisor promised to call her back, but didn't, even after Dizzie left messages for her.

James and Dizzie were frustrated by this process but knew that this was important for Mr. Dean to be able keep more of his money and so he could work more hours if he wanted. So they called the Self-Advocacy Association of NY and were referred to STIC's Benefits Advisor, yours truly, Carole Kramer.

I contacted the DSS office for Mr. Dean, and on August 21 the DSS supervisor called and apologized for what happened. She mailed the application for MBI and cancelled James' spend-down right away, so he wouldn't have to pay the $480 for September. She also said he could be paid back for the previous two months' spend-downs, because the MBI program is retroactive for up to three months.

James got the application, filled it out after calling DSS with some questions, and mailed it to the office at the end of August. Nobody contacted him and he waited to hear back.

On September 11, 2003 Mr. Dean received a Notice of Decision from DSS in Otsego County that said he would continue coverage under MBI effective 7/1/2003 with no spend-down and no premium at this time. Two weeks later he received his refund of the previous two months' spend-down, almost $1,000!

In his first three months in the Buy-In, James has saved over $1,400 and can now have resources (savings) of up to $10,000, while keeping his Medicaid coverage. He has moved into a bigger apartment and is saving money to buy new furniture and other things he needs. Now he can work more hours without paying back most of his earnings. He will pay a premium each month starting next year, but this will be much less than his spend-down.

It took James and Dizzie Dean some time and work to apply for the new Medicaid Buy-In, because the DSS staff were not yet aware of the details of the program. But for James this is a great benefit and opportunity. The Medicaid Buy-In program gives him even more incentive to work and do well, to earn more and to improve his life. Congratulations James!

And, according to the Binghamton Press & Sun-Bulletin, as of 11/17/03, 700 people in New York State have applied for the Buy-In and 350 of those have been approved. So what are you waiting for? Contact Carole Kramer at (607) 724-2111 (voice/TTY) or at benefits@stic-cil.org today!


Campaign for Room in Development

You might have to think about that title for a minute....

STIC's Annual Campaign--which, this year and for the next few years, is dedicated to our new building renovation project--is in full swing. So far we've brought in just over $5,000. Good work, folks! There's just $1,000 more to go to meet our direct-mail goal of $6,000 for this year.

We know many of you like to give around the holidays at the end of the year. If you're one of those people, your time has come. It will make it easier for us to track progress toward our goal if you send your donation in with the return envelope and form we mailed to you this spring. But if you don't have either of those, you can just write "Annual Campaign" on the memo line of your check. All donations are tax deductible, and if it is postmarked by December 31, you'll get an appropriate receipt in time for you to do your 2003 taxes. You'll also have our unending gratitude.

And if you say it's okay, you'll also get your name in this newsletter, just like the folks below who made their gifts this fall:


Dee Arnold Gretchen L. Kessel

CDPAP is Growing!

by Joy EarthDancer

CDPAP is the Consumer Directed Personal Assistance Program, which has been in operation since mid-1999. For those who don't know, STIC operates CDPAP together with Broome County CASA and Tioga County TASAP. CDPAP is a Medicaid program that allows eligible consumers who receive personal assistance services to select, train, and supervise their own personal assistants. CDPAP offers independence in scheduling and choice of workers and the peace of mind that comes from having control of your care.

There has been tremendous program growth in the last two years. Currently we are serving about 142 families and employing an equal number of personal assistants. Because of the increase in numbers we have hired Danette Matteo, who many of you have already met on the telephone or in person. (Danette introduces herself to everyone else in another part of this newsletter.)

Because we have come so far in such a short time, it often seems to us that everyone knows about CDPAP. However, almost weekly we hear of folks who have no idea such a program exists. Help us to spread the word about CDPAP by encouraging those interested to call us - Joy EarthDancer and Danette Matteo at 724-2111 (voice/TTY) for more detailed information.

More New Faces Need More New Spaces

Over the last couple of years STIC has reached "critical mass": Between the truly amazing positive word-of-mouth publicity we get from satisfied customers, and our ongoing advocacy to make various bureaucratic funding streams actually cough up the integrated, individualized supports and services those customers really want, STIC is growing at a remarkable rate.

That's why we need your support for our Capital Campaign; we are just about full-up in this building and we need to get our new quarters renovated as soon as possible. While you're digging in your pocket for spare change for STIC, take a moment to meet this quarter's new folks. new folks. Next quarter you'll see more!

Christine Delany - Service Coordinator

I am very excited to be joining STIC in this position. I have worked with children and families for several years, as well as working with people with disabilities. I have a Bachelors degree in education. On a personal note, I have two wonderful children and we all love to read and love music. I look forward to a positive future with STIC and our consumers and families.

Danette Matteo - CDPAP

I am the new arrival in the CDPAP (Consumer Directed Personal Assistance Program). My title is Personal Assistance Advisor. Even though I am new to this program I am not new to STIC. I first came to know most people at STIC when I painted the second-floor Wingspan mural in 2001.

As a passionate artist, I am very sensitive to the importance of being independent and in your own surroundings. I believe that freedom is vital to a person's life force and to a fuller self-expression. As an energetic Aries warrior, my armor is never far away. I am eager to tackle, advocate and fight, if necessary, to get the job done. It is an honor to be a part of the STIC family and I look forward to partnering with both staff and consumers.

Nancy Taylor - Supported Employment

I am working part time in STIC's Job Connections supported employment program as an Employment Specialist. My main area of focus is Chenango County. I worked for several years in vocational rehabilitation, mostly in the area of employment. For the past few years, I have been raising my family. I have a personal interest in autism, as it affects people close to me. I love what I am doing! I am so excited to be able to bring more employment services to the people of Chenango County, both to STIC consumers and to employers looking for a great source of employees. I hope that I will be able to help many, many people to reach their dreams of working in meaningful, satisfying jobs, and being more fully a part of the communities in which they live.

Belinda Turck - Service Coordinator

I am very excited to be joining the staff at STIC. I have worked in this field for approximately six years as a direct care staff, job coach, residential habilitation coordinator/QMRP (that's OMRDD-ese for Qualified Mental Retardation Professional), case manager, and service coordinator. I live in the middle of nowhere with my husband and two young children. I enjoy playing with my children and having Saturday morning coffee gatherings with my neighbors in my free time.
by Candie Stiles

The "One-Stop Career Centers" are the current incarnation of the Department of Labor's employment assistance programs. They serve people with and without disabilities who are looking for jobs or career growth, as well as businesses that need assistance with hiring and recruitment. One-Stop Centers were created under the federal Workforce Investment Act, and the Disability Navigator concept is a part of that new system that is already working successfully in several other states.

As a Disability Program Navigator for Broome and Tioga Counties, I will be addressing the needs of people with disabilities seeking training and employment opportunities through the One-Stop Career Center system. That includes assisting people as they work their way through all of the various programs, systems, and agencies that affect their lives on a daily basis. I will also serve as a resource person to the Workforce Investment system and persons with disabilities on various programs such as Social Security, vocational rehabilitation, and assistive technology, and provide information on how these services will affect people obtaining employment. This program will expand consumer choice in addressing the needs of people with disabilities seeking training and employment opportunities through the One-Stop Career Center system. It is intended to increase employment and self-sufficiency for persons with disabilities by linking them to employers and by facilitating access to supports and services that will enable the transition to employment. Guidance, support, and encouragement are extremely important when giving people the opportunity to make their own decisions and choices that will allow them to be successful.

In December of 2001, I graduated from SUNY New Paltz with a Bachelor's degree in music therapy. I am currently attending Marywood University and working toward completing a Master's degree in special education. My pastimes include singing, playing the guitar, dancing, sky diving, and attending all types of concerts. I look forward to making a difference in the lives of the people I meet, as well as an impact on the society we all live in.

STIC's Honor Roll

Each year STIC picks the best examples our community has to offer of dedication and hard work in the cause of integration and self-reliance for people with disabilities, and salutes them publicly. There are many, many such people, but our award recipients are the cream of the crop; people who truly go well above and beyond the call of duty. This year's awards ceremony took place on November 20 at STIC. Below are the winners. From all of us at STIC, and from the people with disabilities of Greater Binghamton and the surrounding region, thank you for all that you have done, and will continue to do.


Frederick Lacey, DDS
For a creative and thorough approach to accessible dentistry; not only is his office ramped and easy to get into, his equipment lets patients remain in their wheelchairs or transfer properly and safely to a dental chair to receive treatment.


Thomas Creagh, Broome Developmental Services
For being highly thoughtful, and responsive to and supportive of both people with disabilities and service providers. He provides information, support, and assistance in a variety of ways to promote optimal services and community networking.


BAE Systems, Steve Kraly accepting
BAE has been an enthusiastic STIC supporter for years, but this past year, the company's entire staff went above and beyond in supporting the families that we serve during the holiday season.

Electricians Local #323 IBEW, Jim Collins
For extraordinary help with obtaining materials donations and donating labor to install additional electrical power at Otsiningo Park for our Hometown Holiday Light Festival. They made a seemingly impossible dream come true.

BSB Bank & Trust, William LeBeau
Lockheed Martin, Domenica Gennett
Quantum Graphix, John Salamida
Wegmans Food & Pharmacy, Richard Gilbert

For truly awesome extra help as Light Festival sponsors.


Martin Grassi
For excellent personal growth and development and for making a success of an unusual supported employment job placement.

Delayce Tompkins
For making a great comeback in a new job after a very discouraging experience that resulted from improper support and services.


Mike Gilroy, Coordinator, Family Resource Network
For pushing the limits and making the absolute most of the limited resources available to assist families of children with disabilities to get what they really need.

Anna Halligan, Broome Community College
For being a teacher with a strong and energetic commitment to full access to instructional materials and classes for Deaf people.

Marla Slota, Social Worker, The Waters of Endicott nursing home
For wonderful openness to community integration and independent living philosophy, a strong grasp of the meaning of self-reliance, and excellent work with STIC's Community Integration Advocates to assist nursing home inmates to build lives in the community.


Doug Franklin & Bill Couperthwait, NY Central Mutual Insurance Company
For responding with great sensitivity and care to find the right position in the right department for an employee who was in danger of losing his job.

Dan Harris and Erik Lind, Managers, Loews Towne Square Theater
For excellence and dedication in fostering natural supports in the workplace.

Bonnie Randall, McDonald's Restaurant
For compassion, teaching by example, and staunch defense against discrimination in the employment of people with disabilities.

Frank Redman, Manager, TJ Maxx
For great flexibility and adaptability in supervising employees with disabilities.


NYS Assemblyperson Kevin Cahill
For being a legislator who really "gets" that disability policy is a matter of civil rights, not a Medicaid spending "problem", a feel-good "protect the weak" issue, or a pork-barrel opportunity. He seeks input from people with disabilities, not just providers, when developing legislation and, as Chair of the Assembly Task Force on People with Disabilities, steadfastly sponsors and supports bills that are truly important to the disability community.

NYS Assemblyperson Barbara Lifton
As a freshman Assembly member replacing the retired Martin Luster, she forged ahead and sponsored Luster's Waiver of Sovereign Immunity bill in an effort to protect the enforcement of ADA provisions from potential dismantling by the US Supreme Court.


Karen Church
A tireless worker and excellent role model for people with disabilities, she puts in 1-2 days a week at STIC, doing whatever needs doing. She has been active in community advocacy as well, and has recruited several people from the Sheltered Workshop to get real jobs through supported employment.

Leroy French, Larry Labelle, Russ Miller, Darrel Rich, Greg Swartwood, Rosalie Swift, Ken Westfall
For major sweat and hustle on Make a Difference Day at STIC; this group moved hundreds of tables, desks, bookshelves, and more from the second to the first floor of our new Frederick St. building to prepare for renovations.

Brian Rumpel, Rogers Service Group
For providing furniture dollies for Make a Difference Day and a tractor trailer for storage of our Hometown Holiday Light Festival lights.

Welcome Basket Donations

by Jesse Bishop & Joy EarthDancer

In a previous newsletter, we told you about STIC's Household Give Away Closet that contains furniture and other items for people who are leaving nursing homes and other institutions. One member of our STIC family thought of us as she helped to set up her neighborhood garage sale. When the sale was over, she brought items we could use to the Household Give Away Closet. These and many other donations help us to help others. We continue to need and accept such large items.

But that's only part of the picture.

Let's suppose you have just gotten out of an institutional setting such as a nursing home, group home, etc. and you're back in the community, be it in your own home or apartment. It's quite exciting, isn't it? You can live life on your own terms and enjoy personal freedoms that were either not available or not allowed in your previous living situation. A world of possibilities is opened up for you.

Now let's think about the here and now. There's the kitchen, barren except for the stove, sink and refrigerator. There are no dishtowels, soap, detergent, sponges, potholders, or paper towels. There are no glasses, mugs, dishes, silverware, pots and pans or cooking utensils or a cutting board to be seen. What else is lacking?

On to the bathroom you go. There you see a spartan room with the usual amenities: toilet, sink, tub/shower, towel rack and medicine cabinet. You notice that there are many items lacking that you use on a daily basis. Some of the missing items are: toilet paper, toothpaste, toothbrush, razor, shaving cream, soap, shampoo, wash cloths, towels, toilet scrubber and a shower curtain.

As you can see, a person who is transitioning from an institution to his or her own accommodations in the community has an immediate start-up problem. Typically such folks have little money for their initial venture to independence, and while the above mentioned items may not cost much in their own right, the cumulative expense is quite daunting.

The need for these items has been recognized by STIC and we're creating welcoming baskets to be given to individuals who are moving out into their own housing. It's a great way to welcome people into the community and help defray initial costs for every day living items. STIC gladly welcomes and encourages donations of household items and non-perishable food items to help make up welcoming baskets and to have on hand when the need arises. Bring your donations to the 5th. floor of STIC's offices at 24 Prospect Avenue in Binghamton. There you will find a designated spot where you can drop off your household items and non-perishable foods.

We are also collecting money that will be earmarked for the people we support as they leave institutions. The money will be used to purchase needed items not available through the Household Give Away Closet--for example, mattresses, bed linens, and bath towels. Your contributions will be tax deductible and should be made payable to STIC. Please write "Household Give Away Closet Fund" as a memo on your check.

Below is a list of items that can be donated for the baskets. If there are any other items you think would make wonderful household donations, please feel free to include them. Note that multiples of items are welcomed.

If you have any questions, please contact Joy EarthDancer at (607) 724-2111 (voice/TTY).

Cooking Utensils, Pot Holders, Salt/Pepper Shakers, Measuring Cups/Spoons, Cutting Boards, Glasses/Coffee Mugs, Scrubbers/Sponges, Dishcloths, Paper Towels, Garbage Can, Garbage Bags, Brooms, Plastic Ziploc Bags, Mop/Mop Bucket, Cleaning Supplies, Colanders, Can Openers, Scissors, Scotch Tape

Washcloths, Toilet Brushes, Toilet Paper, Soap, Room Freshener, Toothbrushes, Toothpaste, Shampoo, Shower Curtains, Shaving Cream, Mouthwash, Hand Lotion, Powder


Greek Peak Sports for the Disabled
Wants You!

by Dick Wierman

Despite its name, Greek Peak Sports for the Disabled is an integrated program to provide training and adapted snow sports equipment to people with disabilities. The training and equipment are specialized, but the activity is not--it takes place on the same slopes that are used by nondisabled people during ordinary hours of operation.

Greek Peak Sports for the Disabled is looking for volunteers and participants for the year 2004 snow sports program. This program includes downhill skiing, snowboarding, and mono-skiing.

The program provides a snow sports experience for people whose disabilities would not allow them to use the traditional snow sport teaching process.

Our adaptive teaching program is suited for those from 6 - 60 years of age with hearing impairments, visual impairments, amputations, developmental disabilities, autism, cerebral palsy or partial paralysis.

Greek Peak Sports for the Disabled offers:

  • Adaptive equipment, snowboards and mono-skis
  • One-on-one instruction from our 70+ trained volunteers
  • A staff of 30 certified PSIA ski instructors and Special Olympics instructors
  • A fully accessible Adaptive Snow Sports Building

This program is available at the Greek Peak Ski Resort on Rte. 392 in Cortland, NY, and is centered in our Adaptive Snow Sports Building.

Our program starts on January 4, 2004 and continues through mid-March. The Sunday program offers morning (9:00 am) and afternoon (1:00 pm) sessions.

The Sunday program costs $15.00 per day for participants. This includes equipment rental, a Greek Peak ski lift ticket and a personal instructor for the day. (Lessons are available during the week by reservation only and regular Greek Peak lift ticket and rental prices are in effect.)

For more information, contact:

Dick Wierman (607) 785-6960
Peter Rogers (607) 785-1008 or jonabby@aol.com
Peggy Andersen (607) 657-8317 or HFAnderson@aol.com

Or visit our website: www.skigpsd.org


Winter 2003-04
Issue No. 73