So You Have a Disability and You Want to Vote?
Go to Another State Because New York Doesn't Want You!

by Frank Pennisi

Voting is a cornerstone of American democracy. It is both a right and a duty. If you are a New Yorker with a disability, however, you may have trouble exercising that right or fulfilling that duty. You can't use the voting machine because it's too high, or you can't see it, or your fingers don't work very well? Well, according to the NYS Legislature, that's too bad, but it's just not their problem.

Disability rights advocates across the state started bringing up the issue of accessible voting machines with our State legislators in the late 90s. We knew then that it was unlikely that voting machines would be replaced any time soon (the cost would be staggering and the State couldn't afford it), but we wanted to plant the seed so that when machines finally were replaced, the new machines would be accessible to and usable by people with a variety of disabilities, who are, after all, citizens of this state just like anybody else. They deserve to be able to vote privately and independently just like anybody else. On the machines we have now, it's just not possible.

The problem became apparent as more and more polling places became physically accessible. People with disabilities now had no problem getting into the polling site, but they still needed assistance when they tried to use the voting machine. So we tried to lay the groundwork with a number of legislators statewide. We tried to be reasonable. We told them we knew it wasn't going to happen soon, but to please keep accessibility in mind whenever, in the future, new voting machines were purchased. We offered our expertise in accessibility to help them to know which machines were truly accessible. Most legislators and most Boards of Election have no clue what is truly accessible, nor should they be expected to. It is not their area of expertise. That's why we offered our assistance.

Fast-forward to 2002. After the national presidential election debacle in Florida in 2000, Congress passed the Help America Vote Act (HAVA), which mandated sweeping changes in election law to make sure such problems couldn't happen again. HAVA required that at least one voting machine per site be accessible to people with disabilities, to allow them to independently cast a private vote. Unlike many federal laws, however, HAVA put its money where its mouth was. The law appropriated $2.3 billion nationwide to assist states with the purchase of machines, setting up voter registration databases, making polling places accessible, etc. States had to pass enabling legislation of their own, however, to receive this money.

Most New Yorkers will probably not be surprised to learn that New York is the only state eligible to receive HAVA funds ($220 million) which has not yet passed the legislation, and has not yet received the federal money. The new machines must be in place by the first national election in 2006 or the state will forfeit the money. They will still have to buy accessible machines, they just won't be able to use federal funds to do it. Instead, this burden will fall upon the backs of the New York taxpayers, like so many other things in this overtaxed state.

What, you may ask, has the New York Legislature (the highest paid and most dysfunctional in the nation) been doing all this time? Again, most New Yorkers won't be surprised to learn the answer: they've been bickering, stalling and shirking their responsibilities. In other words, it's been business as usual. County Boards of Election and election commissioners have been concerned, and rightly so. They are going to have to order and learn to use these machines, teach poll workers and voters, find storage (computerized machines can't be stored in barns, garages or basements like the old ones), and have everything up and running by Election Day 2006. This takes time, which is quickly running out, and the Legislature seems unconcerned.

Another problem is the full-face ballot, which is required by NYS law. This is the ballot we're all familiar with, where you can see every race all at once. New York is the only state that still uses this format, and it is impossible to make it accessible to blind people or people with cognitive disabilities. The NYS Task Force on Election Modernization, a bipartisan group appointed by the governor, strongly recommended in its 2002 report that the full-face ballot be eliminated. The Legislature has refused to do so. By steadfastly sticking to this antiquated format, we are eliminating from consideration all of the most accessible machines that exist. There are only a handful of machines being manufactured that can accommodate the full face ballot, and none of them are fully accessible to people with a variety of disabilities.

The full-face ballot requirement makes these machines very large (the smallest I've seen was about 2 x 3 feet, and most are even larger) and awkward. They are difficult to use, and cost between $8,000 and $12,000 apiece. One company, ES&S, claims to have audio equipment for blind voters, but has never brought it along to a demonstration, despite repeated requests for them to do so. We have never once seen the audio component of their machine (over a 5 year period) and can only conclude that it doesn't exist. Yet this is one of the few machines in the running in this state.

Disability advocates have offered our expertise for a number of years; we have tested machines numerous times, written reports on what is wrong with various machines, made suggestions on how to improve access, and tried to work with the Legislature. We have been all but ignored. Only one legislator on the Assembly-Senate Joint Conference Committee has listened to us and advocated for our concerns: Assemblyman Kevin Cahill, former Chair of the Assembly Task Force on People with Disabilities. To the rest, we may as well have been pesky mosquitoes.

The Joint Conference Committee met several times last year to pass HAVA legislation and get the state started on replacing machines. They never even got as far as talking about the machines. At one meeting disability activists blocked the exits to the room to try and force a discussion of accessible machines. The Committee didn't talk about them then, and they haven't to this day.

As of mid-May, they seem to be leaning toward letting each county buy machines of its choosing. These machines will have to meet uniform standards, which, of course, the Committee has yet to develop. So, once again, our valiant leaders have decided not to decide, and instead to pass the buck. When will these "standards" be developed? Time is running out and we stand to lose a great deal of federal money. Counties need time to get things in place, and they can't do anything until the standards are released. There are no full-face ballot machines in existence that fit even the minimum of what should be in the standards for accessibility. How exactly does the Legislature expect this to work--magic?

Allowing each county to "do its own thing" is part of what led to the problems in Florida in 2000. By not going with a uniform statewide machine, NY is just asking for trouble. I would suggest we show our displeasure with the Legislature at the voting booth, but if the machines are inaccessible, how can we? Are we really going to stand for this slipshod "leadership?"

The State Task Force on Election Modernization also stated the following in its 2002 report: "The election law does provide that a voter needing assistance may be assisted by a person of the voter's choice or by two election inspectors not of the same party. However, with new technology, we can do better in a State that prides itself on the sanctity and secrecy of the ballot."

We certainly can do better. Why in the hell aren't we?!?

If you want to get involved in this important issue, give Frank a call at (607) 724-2111 (voice/TTY) and he'll let you know what you can do.

June 2005


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Another Dud from HUD

Having failed two years in a row to dismantle large portions of the nation's public housing programs by messing around with the budgeting process, the Bush Administration is now trying the frontal approach. They have introduced a bill called "The State and Local Housing Flexibility Act of 2005" into both houses of Congress (S. 771/HR. 1999).

This bill would end the existing Department of Housing and Urban Development (HUD) Section 8 voucher program, which provides vouchers that low-income people can use to pay for rent on any apartment whose owner accepts the voucher. Currently the program requires tenants to pay no more than 30% to 40% of their income for rent, and HUD makes up the rest. In its place, the bill would create a new "Flexible Voucher Program" with the following features:

It ends targeted support for those with the lowest incomes. The current program must use 75% of its funds for vouchers for households with incomes at or below 30% percent of the local median income. The new program would let up to 90% of funds be used for households with incomes up to 60% of local median income--and the remaining 10% could go to those with even higher incomes. This would let Public Housing Agencies (PHAs) serve more people while spending less. But it would also mean that those most in need of assistance would be least likely to get it. And people with disabilities who don't have jobs are among the poorest of the poor. In most states the typical annual SSI subsidy (Social Security funds for people with congenital disabilities who have never worked) is less than 20% of median income.

PHAs would be allowed to use the money exclusively for home ownership programs for people at these higher income levels. There could be a complete end to rental assistance in some areas. The HUD home ownership program is a great idea; it lets people use their vouchers for down payments and monthly mortgage payments on their own homes. But not everybody wants to own a home or has the wherewithal or physical ability to keep one up.

PHAs could require much higher rent payments from participants; the 30% to 40% cap would be removed.

PHAs could limit availability of the program to people with certain types of disabilities. Advocates suspect that this would result in discrimination against people with mental illness or developmental disabilities. This provision contradicts requirements in federal fair housing laws and the Americans with Disabilities Act. It's not clear that this could survive a court challenge, since program eligibility rules that violate civil rights laws tend to be frowned upon even by conservative judges. Still, it's a battle that nobody wants to have to fight.

Rules that require PHAs to let people take their vouchers with them if they move to other communities would be eliminated.

The bill does not contain language that requires PHAs to allow a room for a live-in attendant where appropriate when determining the suitability of an apartment for subsidies.

This bill has some opposition among Republicans in both houses, but that's no guarantee that it won't pass. As long as the Bush Administration pursues its don't tax/still spend strategy for funding military activities, everything else the government does will be cut a little more every year. Cuts staved off in one program will be imposed in another--and re-proposed the following year. We cannot win all or even most of these battles in the current political climate. When voters with disabilities realize that, perhaps the climate will change.

Children's Mental Health
Task Force Update

by Maria Dibble

The Children's Mental Health Task Force is a broad-based coalition of local agencies and individuals in Broome County sharing concerns about the lack of adequate services for children who have been diagnosed with or who are suspected of having both developmental and mental health disabilities. Organized and facilitated by STIC, it is a partnership with Broome County Mental Health to respond to the growing needs of these children. Many thanks must go to Commissioner Art Johnson for his logistical and funding support.

Over the last few months, we have worked with the Center for Government Research (CGR) to develop a comprehensive list of agencies, schools and parents to survey about the gaps in services that exist, barriers to accessing services, and strategies to address them.

There will be three different surveys, targeting agencies/providers, schools and parents. The agency survey was mailed in April and the other two should be out by now. We may also conduct focus groups of parents to gain more insights and information than can be gleaned from a written survey.

Questions to be addressed include:

  • How many children are in Broome County who have or are suspected of having a MH/DD dual diagnosis? The challenge here is to try to obtain an accurate, unduplicated count.
  • What types of services are needed (including assessments, education, medication/behavioral management, respite and residential services)?
  • What services already exist that can be adapted to address some of the needs?
  • What are the specific barriers to accessing services (including existing conflicts between state agencies, low reimbursement rates under Medicaid, lack of health insurance, need for additional professional training, funding, etc.)?
  • What resources exist that can be approached for funding to support our final goal?
  • What best practices exist around the state or country that can be adapted to meet identified needs?

The level of interest and cooperation of all the task force members has been exciting and gratifying. Once the survey results are compiled, a report will be issued and we can begin developing a strategic plan to obtain necessary funds and services.

It is not too late to get involved and add your voice to those who are advocating for these children and their families. If you are interested in participating on the task force, contact Maria Dibble at: 724-2111 (voice/TTY) or

Courts Watch

No Nukes Are Good Nukes?

In late May a group of "moderate" Republicans and Democrats in the Senate announced a compromise on President Bush's federal judicial nominees and thereby averted the "nuclear option".

The "nuclear option" referred to Senate Majority Leader Bill Frist's threat to change the Senate rules to prohibit filibusters of judicial nominations. The Democrats had used the tactic to block a couple of Bush's judicial appointments last year. This spring, the Democrats vowed to bring the Senate to a halt if Frist changed the rules.

It was never clear that he had the votes to do it. But, in return for not trying, Frist got the Democrats to agree not to filibuster at least 3 of Bush's nominees, including William Pryor, the anti-ADA judge who Bush "sneaked" onto the 11th. Circuit Court of Appeals in a "recess appointment" last year. Pryor was the attorney who argued and won the Garrett v Alabama case that weakened the ADA's ability to regulate discrimination on the basis of disability by state governments. Since the actual agreement states that Democrats won't filibuster any nominees "except in extraordinary circumstances", it's not clear that we can rely upon them to stop even the most rabid right-wing extremists in the future.

DOJ Comes Alive

It looks like the US Department of Justice (DOJ) Division of Civil Rights is tired of taking flack for failing to enforce federal disability civil rights laws. In March they sent out a spate of news releases announcing settlements in a variety of cases. We don't know if this means they're doing more or if they're just talking about it more. In any case, we're glad to see it. Here's a summary.

DOJ settled with Mercer County, New Jersey in a case involving neglect and mistreatment, and inappropriate placements, at a county nursing home. The settlement requires the county to clean up the facility and revamp its nursing home system. The county also must take steps to comply with the Olmstead decision and ensure that people with disabilities are served in the most integrated setting. DOJ claims to have opened 46 investigations of institutional facilities since 2001, which it says is over 30% more than the number of such investigations started in the previous four years.

DOJ settled a complaint against an apartment complex in Idaho. The federal Fair Housing Act requires such complexes to make common areas and a percentage of apartments accessible to people with disabilities. The newly-built complex was entirely inaccessible. The settlement will require the facility operators to rebuild sidewalks, landings and doorways, remodel its clubhouse, and add handicapped parking. R. Alexander Acosta, Assistant Attorney General for Civil Rights, said, "The ... requirements of the Fair Housing Act are clear and readily achievable in new construction. The Department will continue to hold sophisticated business entities ... to their legal obligation ..." We don't know what R. meant by "sophisticated", but it doesn't appear to mean "all", which isn't so good. In any case, DOJ also announced settlements in complaints against architectural and engineering firms that designed and built inaccessible apartments in four western states, and against 10 companies in Memphis that designed and built 5 complexes in two states. The Idaho case press release says DOJ has filed 61 Fair Housing Act complaints since 2001, of which about half relate to physical accessibility. The release for the Memphis case gave a different set of numbers for such complaints--but publicists aren't known as "detail-oriented".

DOJ has also signed onto a suit against the city of Detroit by five people with disabilities alleging that its public transit system violates the ADA and the federal Rehabilitation Act. The complaint says the city has about 120 buses with broken lifts and no plans to fix them. People with disabilities are left waiting at bus stops, often for more than 30 minutes, while bus after bus passes them by. People with disabilities in Binghamton would be happy to get an accessible bus every 30 minutes--but Detroit is a big city, and it's good that DOJ is keeping them on their toes.

An EPIC Epic

(Thanks to the EPIC Works Campaign and New Yorkers for Accessible Health Coverage for the following:)

New York's Elderly Pharmaceutical Assistance Program (EPIC) offers prescription drug coverage to low and moderate income senior citizens. Today over 346,000 seniors use EPIC--but people with disabilities who are also on fixed incomes were never included even though they also struggle to pay for medications. There is no rational policy basis for this exclusion.

There are more than enough Senate and Assembly sponsors to pass EPIC legislation to include people with disabilities, yet the bills have not been allowed to come up for a vote. A golden opportunity was missed in the 2005-06 budget, and the savings from Medicare Part D (the new prescription drug program that will replace EPIC coverage for many New Yorkers) were allocated to other purposes instead of being used to benefit people with disabilities.

We are told there is no point in passing these bills now since there is no money for them. There is a simple solution for this. The Legislature can change the bills' effective dates from January to April 2006 to move them into the new fiscal year. They can be passed this year as a show of good faith and commitment to New Yorkers with disabilities, and the funds can be appropriated in the next budget. Failing this, other strategies are being considered as described below:

Do you want to do something about unequal prescription drug access for disabled New Yorkers under age 65? Are you on SSDI and under 65 and having trouble paying for prescription drugs?

If you answered "yes" to these questions, please contact Elizabeth Paul, of New Yorkers for Accessible Health Coverage (NYFAHC), at (646) 442-4147 or EPIC currently serves only those over age 65, leaving younger people with disabilities who have significant prescription drug needs to fend for themselves. NYFAHC thinks that this is unlawful and we are preparing to take the state to court to open EPIC to people with disabilities.

Here is some information about who would make a good plaintiff:

  • People who get Social Security Disability Insurance (SSDI) and do not also get Medicaid.
  • Total income under $35,000 if you are single or $50,000 if you are married.
  • You are having trouble paying for your prescription drugs and are willing to publicly talk about it. You will need to share personal information abut your situation, including your income and medical condition. Some of this information might be disseminated in the media.

Making New York Safe
for the ADA

For years, disability advocates have asked New York State's leaders to enact provisions of the Americans with Disabilities Act (ADA)'s Titles II and III into state law. This follows a precedent set a few years ago when the state enacted the ADA Title I job discrimination provisions.

Title II prohibits discrimination on the basis of disability by "public services" (state and local governments) in the provision of programs and services. It includes the requirement that states serve people with disabilities in the most integrated setting appropriate to their needs, made famous by the Supreme Court's Olmstead decision. Title III prohibits discrimination by "public accommodations" (private for- and not-for-profit entities).

The US Supreme Court has issued many decisions related to the ADA, most of which weakened the law's civil rights protections. While Olmstead and Tennessee v Lane were exceptions to this pattern, other decisions suggest that the Court will declare Title II unconstitutional in its entirety if the "right" case presents itself. There is a very real need to protect the "most integrated setting" mandate for New Yorkers by enshrining it in state law.

The other issue is enforcement. While recently the US Department of Justice (DOJ) seems to have picked up the pace on housing and transportation, they have done very little to enforce Titles II and III. Without a state statute, they essentially are the only game in town when it comes to making people obey the law. (Other federal departments have jurisdiction over parts of the ADA, but the most they'll do--if they do anything--is pass complaints on to DOJ for action.)

Not all local governments comply with their obligations under Title II, which include keeping curb cuts in good shape (and clear in winter), and making city halls, courtrooms, park facilities, and other public places accessible. Adding the Title II requirements to state law will make more resources available for enforcement and cause these governments to take them more seriously. NY State Attorneys General like to file high-profile enforcement actions, and those involving the rights of people with disabilities make attractive cases.

The only national threat to Title III is the "ADA Notification Act", which would make plaintiffs give businesses 90 days advance notice of a lawsuit. This bill keeps getting introduced, but has never had strong support in Congress. Even if it passed, it would have little effect because there have been almost no ADA suits filed without first trying to settle (though lots of defendants have lied about this), and judges usually throw out such suits anyway. The media have portrayed individuals who file Title III suits as crackpots and money-grubbing lawyers who victimize honest small-businesspeople. This isn't true, of course; the law has been in effect for over ten years and it was very specifically written not to require "great difficulty or expense" from businesses. Many small businesses have already complied with no complaints. The business owners who have gotten publicity around this are cynical scofflaws. In any case, most people with disabilities don't have the resources to file their own lawsuits, and DOJ has never done much with accessibility issues involving private businesses. As with Title II, making Title III part of state law will bring much more credible enforcement power to bear on the problem.

So we're pleased to report that this year, as we went to press, there was some hope that bills to enact Titles II and III into New York State law may finally be passed. The Assembly plans to pass them (as they have for several years now) in June. The big news is that both bills have prominent sponsors in the Senate and have passed their "third readings" there. We hope that by the time you read this the bills will be on Governor Pataki's desk. We don't know if he'll sign them, but perhaps that will be the occasion for some entertaining visits to Albany this summer.

MISCCing In Action

The New York State Most Integrated Setting Coordinating Council (MISCC) has not held a full council meeting since last October. There's been some action behind the scenes, though.

As we reported in March, the Council's committees were on the verge, last fall, of sending draft reports to the full Council to include in the first MISCC annual report (now more than 18 months late). However, the disability community Council members had grave objections to the reports' contents and the ways in which they were written. We now have more details about this.

The Community Services Committee seemed to be the most dysfunctional. The Department of Health (DOH) official who chairs the committee apparently wrote the draft report by herself; the two disability community members didn't even know it was being done until she brought it to a meeting. Her report consisted of information provided by state agencies about their "community based" services. It left out some services, and it accepted at face value agency claims that various segregated congregate residential programs, including group homes, are "community based".

This triggered a discussion at the October meeting of the MISCC's need for its own definitions of terms like "institution" and "community based". The disability community members did not want any segregated congregate facility to be defined as an acceptable "most integrated setting", and wanted the final report to clearly direct state agencies to move away from such models.

STIC urges the MISCC to use the definitions of the VESID/CIL Deinstitutionalization Cost Savings tracking system. These state that the majority of situations in which 4 or more unrelated people with disabilities live together in one house or apartment can't be considered "integrated". It's unusual but not unheard-of for 3 young unrelated nondisabled adults to agree to live together for a few years until they set up their own households. Larger groups are nearly always student housing and not "natural" for people who aren't in college. No setting that is not controlled by the people who live there and does not involve interdependence with people who aren't paid to serve those people should be called "community based". We make an exception for larger groups only if all aspects of the situation are fully controlled by the people who live there. This would cover a few people with multiple disabilities who choose to live together to share attendant services, for example, in a house jointly owned by them, under rules they create and enforce.

The MISCC law assumes that NY needs better information about disability services and service gaps, and one mandated MISCC task is to find ways to get it. Still, some MISCC members and observers were shocked by the Data Committee's report, which revealed that no state agency except OMRDD has complete and accurate data on the number of people being served, let alone on those who are waiting for services that aren't available. Some agencies are only now beginning to develop data management systems that can track such information.

This is a clear example of the folly of letting these agencies operate autonomous bureaucratic empires without serious central oversight by policy makers. More disturbing was the willingness of the state agency members, including MISCC Chairman (and OMRDD Commissioner) Tom Maul, to issue vague, incomplete, and inaccurate data.

The law requires the MISCC to write a specific plan with steps for state agencies to take in order to ensure that all New Yorkers with all disabilities of all ages can get needed supports in the most integrated setting. The law also requires all state agencies to fully comply with all parts of the plan. But none of the committees took advantage of this opportunity to ensure effective service reforms. Each report contained "guidelines and principles" but no clear directives for agencies.

The disability community members felt that the state agencies are trying to control the data-collection and report-writing processes in order to produce a vague final plan that will not require any agency to change anything, and will not provide measurable objectives that can be used to monitor progress. Such a plan would never pass the independent consultant review that the MISCC law requires, and would probably end up gathering dust in a back room somewhere.

So the advocates demanded that the process be halted until these issues were addressed. An Ad Hoc Committee was formed by the community members, and they brought in outside disability groups to provide real information about the current state of community-based services. Over several months, the Committee met several times to develop recommendations on what should be in the committee reports, and met with state agency representatives to discuss them.

The Ad Hoc Committee has completed its work and submitted its recommendations to Chairman Maul. Maul is said to be "sharing these recommendations with the appointed MISCC representatives from each state agency." We are still waiting to hear what the next step will be.

The New York State Non-Budget for 2005-06

by Maria Dibble

(The following sources contributed significantly to this article: Medicaid Matters New York; New Yorkers for Accessible Health Care; Manatt, Phelps & Phillips, LLP.)

For the first time in over 20 years, NY allegedly had an on-time budget. That's what the politicians claimed and the media reported. However, it was not an on-time budget. Several budget issues were negotiated, and bills passed, before April 1, but some major pieces, including education and welfare program funding, were left out and not passed until well after the deadline. In late May there was still a huge cloud of uncertainty hanging over the health care parts of the 2005-06 budget and over the previous two years as well: the not-for-profit to for-profit health insurance "conversion" issue. We probably won't know until July what the state really has to spend on Medicaid and related items.

What's the "conversion" issue? The state constitution says that if not-for-profit organizations go for-profit, they can't keep the assets they got from being tax-exempt. Instead, those assets must be used to help "the needy". When Empire Blue Cross converted a few years ago, NY budgeted most of its assets for pay raises for unionized health care workers under the Health Care Reform Act (HCRA). Advocates sued the state, claiming that this violated the constitution. This issue is still in court and the funds are in escrow, but meanwhile the state has spent hundreds of millions of dollars under HCRA that it may not have. On top of this, the "balance" in the 2005-06 budget depends on the state being able to get the assets of other big not-for-profit health insurers that plan to convert. But Pataki and the Legislature have not yet agreed on how to use that money, and another suit is likely if the final plan doesn't expand health care for "the needy". So in order to force the Legislature and Governor to resume budget negotiations if the court rules against the state in the Empire case, the "budget" just passed includes an "Armageddon Provision" that cuts off Child Health Plus, EPIC, indigent care, pay raises, and other HCRA spending after July 1, 2005, until the Empire conversion funds come out of escrow--if they ever do.

So, much of what we say here may change when our leaders finally dig into the state's pockets and count the loose change. For now, though, let's assume there won't be any big modifications. In that case, the final results are a mixed bag. There were some outright losses, some partial cuts/limitations to some benefits and also a few total victories.


The institutional long-term care and home health look-back period for which transfer of assets penalties apply did not increase to 60 months as Governor Pataki wanted. It remains 36 months. Also, spousal refusal was not eliminated as proposed. Spouses and families of elderly people and people with disabilities won't have to impoverish themselves so their loved ones can be eligible for Medicaid long-term care. This was hotly debated again this year, but the advocates prevailed.

Funding continues to be available for programs to help people enroll in Medicaid, Family Health Plus (FHP) and Child Health Plus despite the Governor's efforts to eliminate it. Pataki wanted a stricter assets test for FHP, capping the resources despite the number of people in the household. He was not successful in this effort. Last year's assets test remains as is.

New York State will "wrap-around" Medicare Part D for "dual eligibles"--people with both Medicare and Medicaid. This is very important; it means NY will pay for necessary medications for people forced into the new Medicare prescription program if that program won't cover them.

The Governor's proposal to move VESID from the State Education Department to the Department of Labor was not enacted.

And on a final positive note, the funding for Centers for Independent Living like STIC that was cut for the current fiscal year--about a half-million dollars--will be restored in FY 2005-06.

Partial Victories

The changes to FHP are a mixed bag. While advocates successfully prevented limits on mental health, dental, vision, hearing, rehabilitation, and durable medical equipment services, we were not so lucky with co-pays. Co-payments will change to include: $5 per physician visit; $3 for generic drug prescriptions; $6 for brand-name drugs; $5 for dental visits; and limits on the vision benefit for coverage of glasses and contact lenses.

The Governor tried to disallow employees of businesses with 50+ employees, as well as local, state and federal government employees, from enrolling in FHP. In the end, government employees of all levels were forbidden to enroll, but there was no limitation on businesses.

The Governor proposed to end several optional Medicaid State Plan services, including podiatry, private duty nursing, dentists and psychologists in private practice. In the end, none of these were eliminated, and only podiatry was limited to provision in clinic settings. There are few clinics in rural areas--but there aren't many private-practice podiatrists in rural areas either.

The Governor wanted to create a Preferred Drug List (PDL) with few consumer protections. Some disability advocates considered a list to be a good idea if done properly, because it would cut the state's cost for medications and thereby make them more available. Others opposed any limitation on drugs that Medicaid will pay for. In the end, the PDL was created, but after much advocacy, many of the protections that advocates wanted were added, including:

  • A doctor's "reasonable professional judgment" is final when deciding if a person can get a drug that's not on the PDL.

  • The PDL will be developed considering only "clinical effectiveness, safety and patient outcomes." The cost of a drug will be secondary.

  • Certain classes of drugs for HIV/AIDS, mental illness, and transplant recipients will not be limited by the PDL.

  • Three consumers will be on the Pharmacy & Therapeutics Committee (PTC), which recommends drugs for the PDL. This group can monitor the PDL's impact on people's access to needed drugs. The PTC can recommend more protections for people with mental illness or HIV/AIDS and ask that additional classes of drugs not be subject to the PDL for these groups.

  • No repeat prior authorizations will be required for refills of the same drug.

  • A 24/7 toll-free number will take prior authorization requests for drugs not on the PDL. A prescription must be filled as written if there is no response to such a request within 24 hours.

  • A federally-mandated "emergency" clause requires that a 72-hour supply of drugs be provided without authorization if a person's mental or physical health would be "impaired" or in "serious jeopardy".


A big theoretical blow to health care for people with disabilities is a new rule that SSI recipients must enroll in managed care. (Enrollment is voluntary now.) However, NY's Medicaid Managed Care Bill of Rights remains intact: you can't be forced into managed care unless you can choose from at least two plans that can meet your specific needs within a reasonable distance from your home. These rules have kept Medicaid managed care from being forced on most people outside the largest cities, because there are no plans willing to serve smaller communities for what the state pays. Offering plans that meet the needs of people with significant disabilities (most SSI recipients), and especially the requirement for "special needs plans" for people with HIV/AIDS or mental illness, will make this even more expensive for HMOs--and the state isn't raising its rates. We doubt that many more people with disabilities will end up in managed care as a result of this than are there now. But managed care for people with significant disabilities has been shown to be ineffective and inefficient by many credible studies in other states, where they've had great difficulty obtaining needed services, including specialty and preventative care, in a timely manner.

Advocates continued to be frustrated by the legislature's failure to pass a bill to include people with disabilities under the age of 65 in the EPIC drug program (see An EPIC Epic).

Pataki's proposal to move the NYS Office of the Advocate for People with Disabilities to the Commission on Quality of Care (CQC) was adopted. We think this may weaken the independence of the CQC and lead to undue political influence in that watchdog agency.

Other Issues

The Governor had proposed $1 million to set up Regional Resource Development Centers (RRDCs) for the new Medicaid Nursing Home Diversion and Transition Waiver. While advocates have been told by legislative sources that the money is in the budget, DOH officials can't find it. The application to the federal government for the waiver is not ready, and it won't be approved by the end of the 2005-06 fiscal year, but it would help to get the RRDCs collecting data on eligible people and service providers now, so that people can get services as quickly as possible when they become available.

A Commission on Health Care Facilities in the Twenty-First Century was created to make recommendations for reconfiguring hospital and nursing home bed supply to meet regional needs. The Commission can recommend closing, resizing, consolidation, conversion, or restructuring of healthcare facilities.

The Return of Kendra's Law

"Kendra's Law" (the Assisted Outpatient Treatment Act) is up for reauthorization this year. It was enacted in 1999 after a man with a mental illness pushed Kendra Webdale in front of a subway train and killed her. It was promoted as a way to force "dangerous" people who "refuse" mental health services to accept treatment. It was not widely publicized that the man who pushed Kendra had repeatedly sought treatment from various providers and had been turned away.

The law created a process by which a court can order a person with mental illness to accept medication, other treatment, and/or institutionalization. It applies to people who have a history of "failing to comply" with mental health treatment and who have been hospitalized twice in three years--or have committed or threatened to commit a violent act against themselves or another person within the past four years--and who are "considered likely" to become dangerous again without treatment.

In 1999 mental health experts already knew that the problem was not "failure to comply" with treatment, it was unavailability of treatment. Research showed clearly that people with mental illness are less likely to be violent than members of the general population and that those who get proper treatment voluntarily are just as likely to stay on the straight and narrow as those who are forced into it. When Kendra's Law works, it is not because it forces people into treatment, it is because it forces government to provide treatment.

And it comes at a high cost. It violates the civil rights of people with mental disabilities, forcing them either to accept drugs (often with horrendous side effects) or other treatments, or to be locked up. No other persons can be forced to accept medical treatment against their will. Our society ordinarily only applies force to people who harm, or try to harm, others, but 85% of the people forced into treatment under Kendra's law since 1999 have not hurt anyone.

Evidence suggests that Kendra's Law is used to discriminate on the basis of race and ethnicity. The majority of forced treatment incidents since 1999 in our state took place in New York City. 42% of those treated were black, and 21% were Hispanic. There are some well-known dynamics that cause a higher incidence of serious mental illness among black and Hispanic people than among the population at large. A much larger percentage of them are impoverished, which leads to things like less access to preventive medical care, poor nutrition, living in places that contain dangerous levels of environmental pollutants, a greater chance of being a victim of physical or emotional trauma, and overall higher stress. But the disparity in race and ethnicity among people forcibly committed under Kendra's law is much greater than these demographic differences can explain. It appears that the law is being used mostly to lock people who get out of institutions back up, purely because other people regard them as "scary" due to the color of their skin.

Ignorance in this matter is not a liberal or conservative monopoly. Both the Republican Governor Pataki and the Democrat Attorney General Spitzer are pushing not only to reauthorize the law, but to "strengthen" it. The NY chapter of the National Alliance for the Mentally Ill is also on board, because it's run by parents of people with mental illness who are afraid of their own children, and funded by drug companies that profit from laws that force people to take drugs.

Real disability rights advocates universally oppose Kendra's Law. They have been calling for laws requiring more funding for the most effective forms of community-based mental health treatment. Had such laws been in place in the 1990s, Kendra Webdale would be alive today, because the man who killed her would have been welcomed into a comprehensive program of integrated peer-based support and treatment the first time he asked for help.

Given the shameless way that politicians played on public fears to grab the spotlight and enact the law, and the amount of drug company money that flowed into campaign coffers, both PR and political, behind the scenes in 1999, it doesn't seem likely that disability rights advocates will be able to stem the tide and get rid of this law now. But we'll let you know either way.

Sins of the Commission:
The Federal Medicaid Debate

This spring we reported President Bush's plans to cut federal Medicaid spending. You may have heard that disability advocates defeated most of the cuts and got a "bipartisan commission" created to study Medicaid and recommend real reforms. In fact, the story is far from over and Bush may still get everything he wants. It's way too early to declare victory.

Budget resolutions and budgets are different things. Congress may pass budget resolutions with vague multi-year guidelines for spending, but real money only enters the picture with the annual appropriations bills. They don't require the President's signature, and while sometimes they are said to be "binding", in fact they only have as much power as Congressional leaders choose to give them.

Most of the news so far is about budget resolutions.

In March, the House and Senate considered Bush's multi-year Medicaid cut proposals, but both came up with something different. The House wanted $20 billion cut over 5 years; the Senate wanted to cut $14 billion over the same period. All the numbers are vague estimates, but according to some sources, both of these proposed cuts were deeper than what Bush asked for.

The House's resolution passed pretty quickly. Meanwhile, seven Senate Republicans had grown concerned about the impact on social programs and the budget deficit of Bush's don't-tax/still-spend policies. They demonstrated their strength by joining the Democrats in supporting an amendment to their house's budget resolution that would strike all mention of Medicaid cuts and instead create a bipartisan commission to review the Medicaid system and recommend changes.

Bolstered by phone calls and letters from advocates, the Senate adopted the amendment. The far right wing of the Republican party was shocked to find that its up-to-now smoothly-running bandwagon might no longer have a clear road ahead. Senate Finance Committee Chairman Judd Gregg of New Hampshire said, of the moderates in his own party, "You just have to ask yourself, how they get up in the morning and look in the mirror?"

A joint House-Senate conference committee prepared to meet to resolve differences between the two resolutions. Senate Majority Leader Bill Frist tried to strong-arm the seven Republicans into changing their stance. When they wouldn't budge, Bush said he'd "compromise", and the holdouts accepted $10 billion in cuts over 5 years in return for the Medicaid commission. Meanwhile, advocates in the House got enough Republican votes to tell their conferees to accept the original Senate resolution--with no cuts and the commission--by a big majority. However, perhaps ordered by the Speaker, the House conferees ignored this and approved the cuts anyway.

So the final budget resolution included $10 billion in Medicaid cuts over 5 years. This may be only $3 or $4 billion less than Bush wanted, which is chickenfeed in federal terms.

In late May there was no reliable information on how the cuts may be divided among the areas discussed in our last issue, such as asset transfers, drug pricing, and state reimbursement, though some numbers were bandied about, including a possible $2 billion in increased "co-payments" for Medicaid services. These decisions have now been referred to the "bipartisan commission".

There was a frenzy of speculation and misinformation about the commission in the days after the vote. When the federal Centers for Medicare and Medicaid Services (CMS) released a charter and called for nominations for the commission, the air began to clear.

The commission is "bipartisan" in name only. It has 8 members of Congress, 4 appointed by each party--but they can't vote. There are 15 voting members, appointed by the Secretary of the Department of Health and Human Services. There is no requirement for bipartisan balance among them, and while they include 3 representatives of "public policy organizations involved in major health care policy issues for families, individuals with disabilities, low-income individuals, or the elderly", they also include governors, state Medicaid directors, and federal Medicaid officials. Another group of "non-voting advisors" may also include consumer and health care industry reps and politicians who have "special expertise". But there is nothing to stop the Secretary from stacking the commission with people who support his point of view. And Secretary Leavitt's point of view--that Medicaid is "inefficient" and "isn't living up to its potential", and that it must be cut--is well known.

That is, if it meets at all. Democratic leaders in the House and Senate have refused to appoint members as a protest, and some advocates were considering a boycott as well.

The Commission must make recommendations for the $10 billion in cuts by September 1, but it will meet for another year to develop long-term proposals for reform in these areas: "eligibility, benefits design, and delivery; expanding the number of people covered with quality care while recognizing budget constraints; long term care; quality of care, choice, and beneficiary satisfaction; program administration; and other topics that the Secretary may submit..."

The states, which pay shares of Medicaid costs ranging from 30% to 50%, have a stake here too, and their views are influential. As we've suggested, it appears that as medical costs rise and the prospect of more help from the feds fades, states are growing more willing to make destructive deals in order to stave off disaster for as long as possible.

There was some optimism in early spring, when the National Governors Association (NGA) adopted the basic principles of ADAPT's "community first" resolution on Medicaid reform. The NGA resolution said that community-based services are preferable to segregated institutions, endorsed ending Medicaid's institutional bias, and asked the feds for resources to enable states to build "the infrastructure needed to provide home and community-based long term care services". However, the NGA did not support any specific legislation such as Bush's Money Follows the Person initiative or MiCASSA, and it rejected ADAPT's request that it acknowledge states' responsibilities to end disability discrimination under the Supreme Court's Olmstead decision.

Then in May, one source reported that the NGA had called for sweeping changes to Medicaid, including eliminating the "statewideness" rule, strict limits on federal court enforcement of Medicaid law, and possible block grants for long-term care services, which might end their "entitlement" status. We couldn't confirm this report.

One thing is certain. This fall, Congress will start work on appropriations bills, and that's when the real decisions about how much to cut from where will be made. Anything could happen then.


Medicaid Madness

by Darlene Dickinson

Keeping funding for Medicaid services is always a struggle, but over the last year or so, Medicaid has become a favorite target for both politicians and hard-working homeowners who chafe at ever-increasing property taxes imposed by counties struggling to keep pace with ballooning Medicaid costs. As a homeowner and taxpayer, I agree that something has to be done to cut the fat out of Medicaid spending. As a person who has relied on Medicaid when I had no other health insurance, I strongly disagree with anyone who proposes reducing or eliminating much-needed services. What most homeowners, taxpayers and politicians fail to understand is that the fat that needs to be excised from Medicaid lies in the excessive bureaucracy and short-sighted policies made by firmly entrenched bureaucrats. If you need a real-life example, here it is.

Faith, a young woman with multiple sclerosis, had been in a nursing home for over a year when she was referred to STIC's Community Integration Advocates. Prior to institutionalization, she had her own apartment, which was inaccessible, and as her physical condition deteriorated, Faith began to have difficulty there. She fell often and had to call 911 for assistance. As a result, Faith was deemed unsafe in her environment and placed in the nursing home as a long-term resident. Despite her very young age, Medicaid picked up the tab for nursing home care, no questions asked.

As part of the transition planning process, STIC helped Faith apply for wheelchair accessible housing at all of the HUD-subsidized apartment complexes in Broome County. Six months later, she was approved for an accessible apartment and, with much excitement, went to take a look. The apartment, in a freshly renovated building, was brand-spankin' new! It had larger rooms than most subsidized units, with big windows that let in lots of light. It also featured a large, fully accessible kitchen with roll-under sink, stove and counter space. The bathroom was large enough to accommodate a Hoyer lift and for Faith to turn around in her power chair. In short, the lovely little apartment had most everything Faith needed.except a roll-in shower. Of course, she needed a roll-in shower or some type of equipment that would allow her to use the bathtub. A traditional tub transfer bench wasn't going to cut it. Although the Hoyer lift could maneuver around the large bathroom, it could not get close enough to the tub to place Faith on a tub bench and she no longer had the upper body strength to pull herself across the bench into the tub. This left Faith with a dilemma. She could turn down the apartment and stay in the nursing home until another became available, which could take a year, or she could accept the apartment and find a piece of equipment that would make the tub accessible to her. She chose the latter option.

With all of the innovations in assistive technology, it wasn't difficult to find a combination shower chair/tub bench that would work. The DuraGlide is a two-piece system that allows a person to be transferred into a shower chair on wheels that rolls into the bathroom and is positioned alongside the tub. It is then fastened into two rails mounted on the tub and the wall. Once the chair is locked into the rails, an aide can slide the seat from the shower chair across the rails to transfer the person into the bathtub. When the person has finished showering, the process is reversed. Not only does this simple but remarkable device give a person with a disability the freedom to live in a home or apartment without a roll-in shower, it is also relatively inexpensive, compared to modifying a bathroom. At about $3,000, the cost is comparable to the Medicaid reimbursement rate for one month in a skilled nursing facility.

Preparations to obtain the DuraGlide began before Faith was discharged from the nursing home. An occupational therapist evaluated her and wrote a letter stating that the DuraGlide was medically necessary. This letter, and a prescription for the DuraGlide from her doctor, were submitted to Medicaid for pre-authorization. Now, in a perfect world, the Medicaid examiner would have authorized payment, the vendor would have immediately ordered the equipment and Faith would have enjoyed her first hot shower in her own home within three months after moving in. Of course, we are living in a world that is very far from perfect.

The Medicaid examiner denied Faith's request. When I called the examiner to ask her reasons for the denial, she became incensed, exclaiming that she was not about to approve a $2,900 shower chair when a $600 inflatable bed tub that resembled a rubber dingy more than a bathing system would, in her opinion, do the job. Of course, I could not end the conversation without at least trying to make this person understand why her recommendation wouldn't work for Faith. So I explained that the individual in question was prone to chronic urinary tract infections and needed to ensure that her perineal area could be cleansed thoroughly. This didn't go over well at all. The examiner practically spat into the phone that she had been a public health nurse for twenty-some-odd years and she had never in that time seen or heard of chronic UTIs caused by the inflatable dingy. It didn't take me long to figure out that changing this bureaucrat's mind would be about as easy as slapping a fresh diaper on King Kong as he made his way up the Empire State Building. I sighed loudly into the phone and told the crotchety nurse that we would take the matter to fair hearing, to which she replied, "Okey-dokey" and hung up.

Some three months after that conversation I went before the Medicaid Fair Hearing judge with documentation from Faith's doctor citing the frequency of UTIs that she'd had since leaving the nursing home and justifying the need for a traditional shower where she would not be lying in the dirty water that collected in the bed tub. I was also armed with hand-written notes from the OT, which explained that Faith's spasticity would be more of a danger if she was flat on her back in the bed tub instead of sitting up in the shower chair. I was accompanied by one of Faith's PCAs who helped with bathing and personal care in the morning. Unfortunately, Faith could not attend due to a conflict between the hearing time, which could not be changed, and her attendant's schedule.

After another three months of waiting for news of the decision, Faith called to tell me that she had won the fair hearing! Great! She was on the home stretch! I fully expected that she would be taking her first shower at home within the next month or two, giving the bureaucrats enough time to stamp whatever they needed to stamp with approval and send it on the back of a backward-crawling snail to the vendor who would then order the DuraGlide. I'm a hopeless optimist!

Two months went by, then three. Faith called to ask if I had heard anything and I had not, so I called the vendor to see what was happening. He explained that he was still waiting for the approval from Medicaid to be sent. When I sighed in exasperation, and asked if Medicaid had sent him the notice of decision from the fair hearing, he said, "Oh yeah, they did that, but I had to submit all of the documentation that I sent the first time to them again before they would approve the payment. I can't order the chair until I get a notice of prior authorization."

"HUH???" I said. Were they kidding? The fair hearing decision notice stated that the request had been approved and that Broome County DSS was ordered to comply immediately. So how could the folks in Albany drag their feet by making the vendor re-submit all the forms? Good question. I still don't have an answer.

It took one year for Faith to get her shower chair, almost to the day, and another two weeks of adjustments to the equipment before she could finally enjoy her first hot shower in her own home. What enrages me about this story is that Medicaid balked at buying a piece of necessary equipment that costs slightly less than one month of care at the nursing home that Faith had left. Of course, Faith suffered the consequences of Medicaid's stubborn, hidebound, short-sighted policies by way of chronic UTIs, bladder infections and other health complications. Of course, had her health deteriorated a bit more dramatically, Medicaid officials would not have batted an eye at the cost of sending her back to the nursing home. Her return to the community would have been a short one simply because she could not adequately bathe her body. Isn't irony wonderful?

The other rage factor here is that my tax dollars, and those of all the folks screaming about the high cost of Medicaid, were wasted on paying some bureaucrat to re-process information that was already lying dormant in a file cabinet, probably within easy reach of his/her desk! The same money that was spent on that person's salary and nifty benefits package could have been used for the shower chair that Faith needed in the first place. Now, I'm not saying that there shouldn't be oversight of equipment requests. There are a few folks who ask for everything under the sun and feel that Medicaid is Santa Claus, the bringer of gifts, whether they are needed or not. Those people, however, are in the minority by a wide margin. Most of the people who are on Medicaid use it because they have no alternative to pay for homecare and equipment that lets them live in the community and stay as healthy as possible. I can only conclude that the excesses of Medicaid spending lie not in equipment and services, but in the madness of a system that feeds on itself.


Annual Campaign

That's right, this year we need to raise $6,000 clams to help renovate our new building on Frederick Street in Binghamton.

Please! Our current building and the parking lots are overflowing! And frankly, folks, with most of the local ownership of the banks and factories gone, there aren't many big fish left in our small pond who care about our community and its people any more. We oyster get a lot more from them than we do today. So we're angling for your support and we need it much more than we ever have before.

Don't leave us floundering. Our letters, with return envelopes and forms to record your donation, have gone out in the mail. Most of you have received them. If we could hook everybody who got a letter into giving us just $10, we'd raise $30,000 for this campaign. If you sent a fin, we'd have $15,000. We're only asking for $6,000, and we know you can do it. You've come close to that goal before, so we know it wasn't a fluke. Please send us your contribution today.

If you prefer to give at work, you cod do it easily by choosing STIC as your "donor option" with the United Way or SEFA campaigns. (You can do this if you work at IBM, too, though you may need to get some help from upstream to fill out the form.) If you work for the Postal Service or another federal grouper, you can't pike STIC from a list to receive your CFC donation, so please send us your gift directly.

If you give us perchmission to do so, we'll publish your name, and any memorial you wish to include, right here.

New and Better Education Services from STIC

by Maria Dibble

Advocating to ensure an inclusive appropriate education for children with disabilities has long been a passion for STIC. Despite laws and regulations to the contrary, a pervasive outdated attitude toward the education needs of children with significant and/or multiple disabilities continues to exist in our community. Children continue to be warehoused in segregated programs and denied the opportunity to grow up with the expectation of living integrated independent adult lives.

More often than not, parents of children with disabilities must fight tooth and nail to have their children included in the regular classroom with the necessary supports to guarantee success. In 2005 we still have segregated programs at BOCES (one, for example, is called "Workshop"), that have little if anything to do with educating the children and instead seem intended to prepare children for the lowest possible expectations: of graduating to live in group homes and work in sheltered workshops or languish in other undesirable "day programs". Many of us who care about this would be happy to take two steps forward and one step back, instead of the more typical one step forward and two back that seems to be the rule of late. The term "least restrictive environment" appears to have little meaning to such programs even though it is the law.

To be fair, I must say that there are school districts and individual programs that are doing quite well in educating and including children with disabilities, but unfortunately, the problems and barriers still outnumber the effective and supportive programs.

So where is all of this frustration and anger at an education system that is failing our children going? Well, STIC is reorganizing the services we already provide and combining them with some exciting new programs and initiatives. We are rallying the troops to prosecute this war against segregation. The warriors are parents and advocates and our weapons are accurate information, existing laws and regulations, constant pressure on segregated programs, and possibly legal remedies if necessary.

STIC currently has a part-time Education Advocate, a full-time Transition Peer Counselor, and many Service Coordinators who teach parents their rights, attend CSE meetings and assist families to find the most appropriate education programs for their children.

The first great news is that our School-to-Life Transition project, funded through VESID and originally slated to end on June 30 of this year, has been extended for another four years, and has even been given a small increase. This will allow us to have a part-time Transition Coordinator in addition to the peer counseling position. This program will work with the Binghamton, Chenango Valley, Chenango Forks and Main-Endwell school districts (the only districts that have been willing to sign a non-binding letter of agreement). It will focus on two main groups: children with disabilities who are at risk of dropping out or have recently dropped out, and children with disabilities who are at risk of being transitioned into segregated adult lives. We will provide peer counseling, advocacy, information and referral, independent living skills training and other services to assist students between the ages of 16 and 21 to successfully move on to independent integrated work and living situations after graduation.

The other exciting piece of news is that STIC has been awarded an OMRDD Family Support Services grant through the Broome DDSO to hire a half-time Parent Mentor. The goals of this program are to inform parents of children with developmental disabilities about their rights, help them negotiate the special education system, and teach them to become their own advocates for their children. In keeping with STIC's peer approach to service delivery, the mentor will be a parent with experience in advocating on behalf of her own child, who will be a knowledgeable and empathetic resource for parents.

All of the folks who work with children at STIC will now work together to develop long-term strategies to address the many concerns that STIC and parents have about the special education system. Reorganizing and refocusing our resources, combined with training new advocates, will give us the strength and power needed to effect real change in our local schools. We will never give up the fight until every child has the opportunity to obtain the best education possible in the most appropriate, least restrictive environment that meets their needs

New Faces

Tom Bowers - Employment Specialist
Tom Bowers has joined STIC as an employment specialist in our Job Connections supported employment program, where he will be assigned to Chenango County. Tom is a familiar face to STIC, having served as an intern in our Counseling Services program while pursuing his MSW at Binghamton University. Prior to his decision to become a social worker, Tom worked for industry in program management and systems development, retiring as a systems engineer. Tom is an enthusiastic advocate for others and finds his new career in social work energizing and enriching. He holds a bachelors as well as masters degree in social science from Binghamton University.
Cynthia Meredith - Service Coordinator
I'm very pleased to be joining the Service Coordination team here at STIC. I have 12 years experience in a variety of human services settings, including serving as a special education substitute teacher. My BS is in applied social sciences with concentrations in counseling and human services from Binghamton University, and I have a Master of Divinity degree from Drew University. It certainly was a thrill to find that my physical limitations (and part-time use of a wheelchair) were not a liability here but an asset! I've been impressed with the cooperation and dedication of the staff and consumers at STIC and look forward to learning and working with you all!

No Parking!

by Frank Pennisi

As STIC has grown, we have hired more staff and have more people with disabilities coming and going every day. Our parking lot, however, has not grown along with us. We are very aware that there is often a problem finding a parking space at this building. We have rented spaces #64-85 directly across the street (Prospect Ave.) and these can be used by anyone doing business at STIC. If all spots are full and you are only going to be a few minutes, feel free to park behind someone in the lot. If it's just for a minute or two, it won't cause a problem and we are willing to be flexible, because we know how bad the situation has gotten.


We don't care if you're only going to be one minute or even one second. We don't care if you're waiting for your husband, wife, sister, brother, son, daughter, friend or whatever. These spaces are reserved for those who legitimately need them, and no one else belongs there. Ever.

We are tired of listening to excuses. We are tired of telling people they shouldn't be parked there and having them reply "I know." We are tired of having to argue with people parked illegally who have the gall to give us a hard time when we ask them to move their vehicles. From now on, if you park illegally at STIC you will be ticketed or towed at your own expense.

STIC should be a glowing example of accessibility in all forms. This is the last place you should be parking illegally in a handicapped parking space. If you have a relative with a disability, or if you work for a person with a disability, and you are still rude enough, selfish enough, and inconsiderate enough to park in these spaces, you ought to be deeply ashamed. If you can't find it in yourself to be ashamed, we will hit you in the pocketbook. It's as simple as that. And if you've hired an attendant who disrespects people with disabilities so much that they will not only repeatedly park in these spaces when they know they shouldn't, but will also get belligerent when they are told to stop, then you ought to think very hard about whether you're really safe having this person in your home and touching your person.

This problem is reaching crisis proportions, and we will no longer tolerate it.


by Amber George

Want to learn the scoop about what's happening to improve things for people with disabilities? Are you interested in making change? Would you like to meet other advocates? Well, now is your chance! Join SAIL (Systems Advocates for Independent Living) and become an advocate!

SAIL is a group of people who meet monthly to discuss and identify real issues that affect our lives as people with disabilities, friends, family members, and coworkers. Our mission is to educate legislators and fellow citizens about disability awareness. We are proud to be affiliated with STIC, since throughout the years STIC has been involved with numerous advocacy actions. Over the years, we have fought hard for the disability community to increase the availability of housing, accessible transportation, and consumer-controlled community-based care and services.

As a group we participate in projects such as making phone calls to legislators, going to public rallies both locally and across NYS, contacting the media, writing letters, sending emails, and much more. Advocates can also take action from their home computers via Action Alerts. These Action Alerts are meant to affect the way political leaders think about disability issues, which is reflected in state and federal laws/policies. Action Alerts give advocates information so they can effectively write emails and/or letters on a specific issue. These very simple actions make a world of difference! Every email, letter, and phone call counts. This is an opportunity to be involved with a much larger force of disability advocates across New York State.

SAIL meetings are held each month, typically on the third or fourth Tuesday, at STIC. Come join us in our efforts to improve our community! For more information, contact Amber George, Systems Advocate at (607) 724-2111 (voice/TTY) or


Help Us Help America Vote

by Chris Zachmeyer

The Catskill Center for Independence, located in Oneonta, NY, was recently awarded one of two grants statewide to promote the successful implementation of the Help America Vote Act (HAVA) of 2002. The four-year grant, 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 the grant 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.

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:
(888) NYS HAVA

Visions Credit Union Services
for People with Low Income

by Vickie L. Mauro

Visions Federal Credit Union, a member-owned, not-for-profit financial cooperative, operates under the guidance of a volunteer board of directors and is committed to our members. Unlike banks, your credit union is not obligated to perform for stockholders who may or may not be customers. Our only obligation is to our members. We actively serve people within our field of membership, and as appropriate, the communities in which they live. We treat all members with respect and dignity and we offer honest, fair deals to all members at all times. We deliver a range of low cost products and services to the diverse economic and social make-up of our members and potential members.

We look for better ways to reach out to the un-served or underserved in our field of membership such as:

Credit Builder Loan
Provides members with poor or limited credit a means by which they can re-establish or establish a good credit rating, while promoting savings.

Debt Counseling
A free member service designed to assist members with debt problems. The service includes workout loans with extended terms.

Risk Based Lending
Our Risk Based Lending program allows members with less than perfect credit to borrow at the credit union. The rates offered are lower than what otherwise might be available to these borrowers.

First Time Home Buyers Program
This program provides affordable financing for members purchasing their first home. 100% financing (with no PMI insurance) results in considerable savings to the members.

No Surcharge ATMs / ATM Service
Credit union members are allowed five (5) non-proprietary ATM transactions per month before they are charged for using non-Visions ATMs.

Member Seminars
Throughout the year, the credit union offers free member seminars covering a wide range of topics:
           Financial / Retirement Planning    Defensive Driving
           Car Buying                                 Home Buying and Selling
           Long Term Care Insurance         Estate and Trust Services
           Internet / Electronic Services       Wealth Management

Credit Builder Loans, Secured Credit Cards and Risk Based Lending programs are designed to provide lending access to members who might not otherwise qualify for a loan or who would be forced to deal with sub-prime lenders at much higher rates.

Visions Federal Credit Union annually contributes to over 200 groups and organizations. In addition, we provide volunteers to assist with charitable events. We put forth every effort to enable our members to become financially self-sufficient and successful. We will place high importance on consumer education and the teaching of financial thrift.

The credit union principles of Not For Profit, Not For Charity, But For Service and our philosophy of People Helping People represent good business practices that ensure the financial strength of our credit union on the behalf of our membership.


For Sale: 1 year old Rascal Deluxe 3-wheel powered scooter, rarely used. Includes: cover speedometer, horn, 2 baskets, lights, flag and new batteries. Will throw in a pair of 6 foot portable ramps. Cost $4,700, asking $2,500. Call 699-3649, ask for Doris.


Summer 2005
Issue No. 79