Zero Tolerance for Intolerance

by Maria Dibble

This piece first ran in the Binghamton Press & Sun-Bulletin.
When an event such as happened in Littleton, Colorado occurs, we almost frantically try to find a reason for it--someone to blame, an easy quick fix. When we're not successful, we try to create a scapegoat: the social worker who missed a warning signal, the police officer who didn't track the culprits' movements, the teacher who wasn't disturbed by a violent video. Then we go into high gear, bringing in professionals and analyzing the circumstances to death, while trying to offer comfort and solace to the bereaved and traumatized.

What we can be certain of, however, is that many Littletons will be in our futures if we don't take a good hard look at the lessons we teach our children and the attitudes we have towards those who may be a little different than we are.

Children of color, those with disabilities, those of a different sexual orientation or ethnic background, or even just people who dress a little funny, who are socially awkward, or who don't care about things that others consider important, such as sports or dating, are often the brunt of jokes, teasing and, sometimes, violence. When children are young, we often overlook the jokes and teasing with offhand remarks like "Children can be cruel," or, "They'll grow out of it." Sometimes we even ignore or justify mild physical attacks on kids who are "different," saying that having to defend oneself physically "builds character" or that those attacked need to "learn to fit in." However, we are products of our environment and if that environment includes disrespect, intolerance, hatred, or violence, then that is what our children will use as the building blocks for their adult lives.

I grew up totally blind and attended public schools. I was taunted and sometimes attacked because of my blindness. People fear what they don't know and we often respond to fear by striking out. It gives us a sense of control and power over our surroundings and it temporarily makes the problem go away. My parents were always loving and supportive and explained to me that the other children didn't understand or that they didn't really know any better. I often wondered why their parents weren't helping them understand. The teachers were often just as guilty as the children, in a more sophisticated way. They didn't tease me, they ignored me. They didn't make jokes about me, they just expected me to fail. They didn't hit me, they simply assumed that my disability made me incapable and helpless.

Without a loving family to provide support, the bitterness I sometimes felt toward other children and teachers would have grown and festered. It would have been like an infection, that once taking hold, could not be cured easily. I might well have become dangerous to myself or others, but my family diffused my anger and taught me tolerance and compassion. I never made fun of children who were different and tended to befriend those who were the focus of negative attention.

Imagine these children who killed in Littleton, ignored or avoided by peers who feared them, angry to the point of violence and so filled with hatred that they could plan this act and then carry it out. Many of us responded in our hearts that justice had been served by their deaths. I have nothing but the deepest compassion for the families of those children who were killed, but I must also offer that same compassion to the families of the perpetrators. The burden of guilt they carry must be unbearable and their regrets must be many.

So instead of temporarily rallying the troops to take away backpacks, make poor families buy new short coats for their kids, and search children as they enter school, let's make a permanent commitment to teach our kids a different way.

Find the Facts!
Win $25.00!

Name two Senators who have delayed the Work Incentives Improvement Act.
The answer to this question is somewhere in this newsletter. All correct answers (as found in this newsletter), postmarked on or before July 15, will be entered in a blind drawing. If your answer is drawn, you'll win $25! STIC staff, board members, and their immediate families or households are not eligible to win.

Send your answers to:

24 Prospect Avenue
Binghamton, NY 13901

Congrats to Our Previous Winner!
Pamela J. Hyde of Binghamton
June 1999


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

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

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

All articles appearing in this newsletter are written by Ken Dibble unless otherwise noted. Generally, I get tired of seeing my name on every page, and I'd rather use the space for something more interesting. I do put my name on controversial stuff, though, so you'll know who to blame.

Letter to the Editor

I am writing in response to your reply to "A Former STIC Client" who felt that you were chastising disabled people who chose to give up working, and to claim disability benefits instead. In your reply, you state: "I do believe that once people adjust to their disabilities they should, to the extent they are able, be earning their keep 'like everybody else,' if they expect to be treated like everybody else.'"

It seems to me that your response presupposes becoming disabled is a one-time event and ignores people disabled by so-called progressive diseases or by chronic illness.

For a person with a progressive disability, the "adjustment" is constant and ongoing. It can also be frightening and exhausting. While one disability is overcome, another one arises, then another. This also makes employment difficult because of the need to continually make new requests for special accommodations or assistance.

People who are ill may also lack the outward signs of "official" disability such as a wheelchair, and therefore, are constantly in the position of having to explain (and be questioned about) their limitations, which can make social interaction very difficult. My father was disabled at age 45 by a series of unrelated illnesses. Unfortunately when he would stumble and fall, people would sometimes assume he was drunk. Being treated "like everybody else" is not necessarily a good thing.

As she describes herself "former STIC client" sounds as though she suffers from chronic medical problems. Why should she have to pretend she is "like everybody else?" Everybody else is not sick all day, every day.

It is too bad that society values people by their ability to make money, and even worse when an individual values him or herself that way. Workers should not feel guilty about claiming the benefits they earned. Someone claiming SSD is not being supported by taxpayers any more than a person who is retired. The amount of money claimed is usually far more than the amount of money the worker paid into the system-yet seniors certainly aren't shy about claiming their Social Security benefits.

--Linda Giese The Editor replies: STIC has had 3 employees with degenerative conditions. Two worked full-time while adjusting to their changing abilities; the third had to stop working due to the rapidity of the changes. As I said, people should work to the extent they are able. People with Tourette Syndrome are, like Ms. Giese's father, often misunderstood because the only outward sign of disability is their eccentric behavior, yet they can work, and their presence on the job helps educate people about their conditions. It's not money that society values, it's productivity--making a contribution. As I've also said, volunteering is sometimes the best way to do that.


ADA Workshop

ADA & Court Decisions
September 17, 1999
For Information call Frank
724-2111 (voice/TTY)

The Allie Fund

The Allie Fund has been established to assist people with disabilities and their families to obtain assistive technology for which there is no other source of funding. Donations to this fund do not benefit STIC; they are reserved for use by individuals in need, as determined by the Parents Empowering Parents support group. To contribute, contact:

Jo Anne Novicky 724-2111 (voice/TTY)

The Life of Staff

We'd like to say a fond farewell to former STIC Receptionist Bonnie Knowles. May she prosper in her new endeavors. We will miss you, Bonnie!

Now how about a hearty STIC welcome for our new Receptionist/Clerical Assistant, Frances "Bee-Bee" Wright! Also joining us are Joy Earthdancer and Jennifer Hitchcock, new Transition Peer Counselors in the Johnson City schools project. Mary-Ellen Kelleher, formerly with that program, is now a full-time Service Coordinator working for people on the OMRDD and DOH HCBS waivers. Joining her in that program is former STIC student intern Pola Beagle.

And, last but not least, all the STICsters would like to thank Fiscal Manager Paula Bartlow from the bottom of our hearts, for taking the plunge!

Room with a View

(Photos: 1. Allison Acker
2. from left, Jarrod, Kevin, Lila and Krista Acker; Senator Libous
3. Senator Libous cuts the ribbon with, from left, Jayne Gabriel, Jamie Zisko, Krista Acker)

Allison Acker
On April 30, STIC dedicated one of the rooms in our expanded TRAID center to the memory of Allison "Allie" Acker. Senator Thomas Libous spoke to a crowd of people with disabilities and family members at the dedication for the Allie Acker Room. Following his remarks and those of STIC Executive Director Maria Dibble and Allie's mother, Lila Acker, there was a ribbon-cutting ceremony, featuring Senator Libous, to open the new room to the public.

STIC's TRAID (Technology Related Assistance for Individuals with Disabilities) Center assists people with disabilities of all ages and their families to learn about and obtain assistive technology appropriate to their needs. Services include a loan closet of various devices, product displays and demonstrations, outreach to rural areas, and assistance to enable people with disabilities or their families to identify technology needs, choose appropriate items, and access resources to obtain them. The Center serves Broome, Chenango, Delaware, Otsego, and Tioga Counties.

The TRAID Center has moved to our 3rd. floor and now occupies a suite of 3 rooms. Items on display include adapted toys and switches for children, positioning devices, telephone devices, low-tech handmade items, and much more.

Black and white photo of Senator Libous reading a proclamation to members of Allie Acker's family The following appears on a plaque outside the door of the Allie Acker Room:

"Allison Acker (November 21, 1988 - March 21, 1998) was a child who deeply touched the lives of so many people. As a toddler, she was diagnosed with a progressive neurological disorder. She was unable to communicate verbally but expressed herself in many other ways. Her beautiful smile and sparkling eyes could light up a room. It was a pleasure and a unique learning experience for those who worked with Allie in the search for creative methods to access assistive technology to provide her with a means of communication.

Allie enjoyed her classmates at school, and her vivacious personality had the ability to bring out the best in the people around her. She was a teacher to those who loved and cared for her. Perhaps the most valuable lesson she taught was that there is quality to all life. She is remembered in many ways: by classmates who valued her friendship; by nurses, teachers and therapists who expanded their knowledge and understanding; by family and friends who felt the love and joy of having Allie in their lives.

Her personality and her experiences will now be remembered by the entire community. In honor of her life, and the gifts she shared with others, Southern Tier Independence Center dedicates this room to Allison Acker, whose spirit will live forever." Black and white photo of Senator Libous and three little girls cutting the ribbon at the door of the Allie Acker Room

STIC Golf Tournament

United Health Services
Visions Federal Credit Union
BSB Bank & Trust
Giant Food Markets
Lockheed Martin Federal Systems
Security Mutual Life Insurance Company of NY
Tri-Cities Temperature Control
United Medical Associates


5th. Annual
Golf Tournament

Honoring Senator Thomas Libous

August 12, 1999
Endwell Greens

To Register:

STIC Picnic

July 26
3:30 - 7:00
Highland Park
Pay by July 23
For Info, call Suzy

Stop Your Bucks Here

"Workin' hard for the money/Workin' hard for the money," sang our co-worker, Julio Duran, in a gloriously flat tone as he helped Secretary Rachel Bartlow move some boxes into storage. Your editor, passing by, remarked that Julio was also "singin' bad for the money."

Yes, we at STIC will do a lot for your support. We'll work hard to make our community more responsive to people with disabilities. We'll clown around or be outrageous, because we're like you-we live and work with humor, we take on tasks that aren't in our job descriptions, and we're only as "professional" as we absolutely have to be. About the only thing we won't do for money is sell out our principles of consumer control and systems change.

That's a hard sell though, with government or corporate funders, which is why we come to you. By now you've received (or soon will) a letter asking you to donate to STIC. Please respond. The money that comes from you is what makes us the flexible, responsive group we are. Last year you gave almost $4,500. This year's goal is $5,000. We know you can do it. If you do, with your permission, we'll print your name.

You can do it if you give at work, too. Make STIC your "Donor Choice" for United Way or the State Employees Federated Appeal. (NOTE: If you're a federal employee, you can't designate your CFC contribution for STIC. We hope you'll give directly to us instead.)

We're on Target Now!

OBJECTIVE: The Transition Services program will move to the large classroom and offices on the 3rd. floor in the near future.

ACTION: On April 10 volunteers from Target Stores Inc. helped paint the rooms, which were very dark and dirty. Rachel Motsko, SL Executive from the Vestal Target, helped Julie Epply coordinate the effort. Target Volunteers: Cheryl & Tim Frock, Mike Afton, Bonnie & Emily Squezello, and Emily's friend Jennifer. STIC volunteers: Roxana Saez, Nuria Bronson, and Fred Epply.

RESULT: A good time, and much painting was accomplished in a few short hours! Lookin' good! Thanks to all who helped!


ADA and ADAPT v the Supremes

On May 12, around 4000 disability activists (US Capitol Police estimate) rallied on the Capitol grounds, then marched to the Supreme Court to declare, "Don't Tread on the ADA". The crowd chanted "Our homes, not nursing homes" with Senator Tom Harkin (D-Iowa), and listened to former PA Governor Dick Thornburgh describe the signing of the ADA in 1990. Governor Thornburgh called on activists to ensure that the "shameful wall of exclusion continues to tumble down." While much of the emphasis was on the dangers posed by L.C. v Olmstead (see L.C. vs Olmstead: Our Dred Scott Case?), the message was that several other ADA cases before the Supreme Court this spring are also important.

Here's a brief run-down on those cases:

Cleveland v Policy Management Systems Corp.

There's an implied contradiction when you're eligible for Social Security benefits because you're "too disabled to work", yet you sue an employer for discrimination for refusing to hire you. Of course, people with disabilities know that those benefits (SSI or SSDI) aren't really about the ability to work, regardless of the Social Security Administration's rules. Today, in order for many people with significant disabilities to get the medications, equipment, and attendants they need to go to work, they have to impoverish themselves to qualify for Medicaid. That usually means part-time jobs and/or minimum wage. SSI and SSDI are "unearned income" subsidies that enable people to live somewhat decently in this absurd situation. But the average American doesn't understand this, and the average employer sees this as a loophole to avoid complying with the ADA. Fortunately, on May 24, the Supreme Court ruled that applying for or receiving SS benefits does not make you ineligible for ADA protections.

Sutton v United Air Lines

Here's one of those cases where things got unnecessarily confused. Twin sisters sued the airline for job discrimination under the ADA after United refused to hire them as pilots because they are nearsighted. It's hard to see (yes, pun intended) how nearsightedness qualifies for protection under the ADA, which defines a disability as substantially limiting a major life activity. While seeing is a major life activity, nearsightedness doesn't substantially limit it. The case should have been thrown out on those grounds. Instead, the question has become, are the twins still disabled after wearing glasses that correct the "disability", and therefore eligible to sue? While this is an absurd situation in which to argue that point, the point is important. In other cases, employers have claimed that people who can't walk aren't disabled if they use a wheelchair to "correct" the disability. That is ridiculous in the other direction, since a person who uses a wheelchair is still likely to need reasonable accommodations, and therefore may experience discrimination by employers who don't want to make those accommodations. So, the question needs to be settled. A similar case, and a better one for determining this issue, is Murphy, Vaughn L. v United Parcel Services, Inc., which considers whether high blood pressure is a disability if it's corrected by medication. High blood pressure, at least, can in severe cases be a truly substantial limitation.

A more ambiguous case is Albertsons, Inc. v Kirkingburg, Hallie, where the contentious disability is monocular vision.

Dr. Death Stopped

by Judge Jessica Cooper

This is a court of law and you said you invited yourself here to take a final stand. But this trial was not an opportunity for a referendum. The law prohibiting euthanasia was specifically reviewed and clarified by the Michigan Supreme Court several years ago in a decision involving your very own cases, sir. So the charge here should come as no surprise to you. You invited yourself to the wrong forum.

Well, we are a nation of laws, and we are a nation that tolerates differences of opinion because we have a civilized and a nonviolent way of resolving our conflicts that weighs the law and adheres to the law. We have the means and the methods to protest the laws with which we disagree. You can criticize the law, you can write or lecture about the law, you can speak to the media or petition the voters. But you must always stay within the limits provided by the law. You may not break the law. You may not take the law into your own hands.

In point of fact, the issue of assisted suicide was addressed in this state by referendum just last November. And while the proponents of that were out campaigning, you were with Thomas Youk. And the voters of the State of Michigan said "no." And they said no two-and-a-half to one. But we are not talking about assisted suicide here. When you purposely inject another human being with what you know to be a lethal dosage of poison, that, sir, is murder. And the jury so found.

Now, you've vilified the jury and the justice system in this case. But every member of that jury had compassion and empathy for Thomas Youk. They had a higher duty that went beyond personal sympathy and emotion. They took an oath to follow the law, not to nullify it. And I am bound by a very similar oath, sir.

No one is unmindful of the controversy and emotion that exists over end-of-life issues and pain control. And I assume that the debate will continue in a calm and reasoned forum long after this trial and your activities have faded from public memory. But this trial is not about that controversy. The trial was about you, sir. It was about you and the legal system. And you have ignored and challenged the Legislature and the Supreme Court. And moreover, you've defied your own profession, the medical profession.

You stood before this jury and you spoke of your duty as a physician. You repeatedly speak of treating patients to relieve their pain and suffering. You don't have a license to practice medicine. The state of Michigan told you eight years ago you may not practice medicine. You may not treat patients. You may not possess-let alone inject-drugs into another human being.

Now, the reason the guidelines in this particular case are so high is because of the drug conviction in Count 2. And everyone seems to have glossed over this particular offense. But you had no right to be in control of any type of a controlled substance, let alone deliver it to anyone else.

There are several valid considerations in sentencing. One of them is rehabilitation. But based upon the fact that you publicly and repeatedly announced your intentions to disregard the laws of this state, I question whether you will ever cease and desist. The fact that your attorney in a presentence investigation says you're out of business from this point forward doesn't negate your past statements. Now, another consideration and perhaps even a stronger factor in sentencing is deterrence. This trial was not about the political or moral correctness of euthanasia. It was all about you, sir. It was about lawlessness. It was about disrespect for a society that exists and flourishes because of the strength of the legal system.

No one, sir, is above the law. No one. So let's talk just a little bit more about you specifically. You were on bond to another judge when you committed this offense, you were not licensed to practice medicine when you committed this offense and you hadn't been licensed for eight years. And you had the audacity to go on national television, show the world what you did and dare the legal system to stop you.

Well, sir, consider yourself stopped.

Fighting for the Right Bill of Rights...Again

from GMHC In Brief

In the 106th. Congress we're once again seeing a series of bills introduced that pretend to offer protections to managed care consumers. But, once again, only one among them-HR 358/S 6-includes the comprehensive provisions we need. Contact your congressional representatives to make sure they're supporting the real Patients' Bill of Rights.

Senator Moynihan
(212) 661-5150

Senator Schumer
(212) 486-4430

Any House Representative
Capitol Switchboard (202) 224-3121

It's also not too late to visit and sign the online petition in support of the right Bill of Rights.

Good IDEAs

Two recent court cases have strengthened the Individuals with Disabilities Education Act (IDEA).

>Cedar Rapids Community School District v Garrett F. concerned a teenager with quadriplegia who uses a ventilator. She needed someone to monitor and clean the ventilator in school. The school called that "medical services" and refused to provide it. The US Supreme Court ruled that schools must provide "related services" to students with disabilities as needed unless they are medical services, and narrowly defined medical services as those that must be provided by a physician. The Court told the school district to get a trained person to do the ventilator care.

Now school districts have been complaining that this will cost tens of thousands of dollars a year in "nursing services", and the media have unquestioningly reported this as a big problem. "Everybody wants to help the disabled," the message is, "but how much can we be expected to afford?"

The reality here is quite different. The school was already paying an aide to assist the student in other ways. An aide can be trained to monitor and clean a ventilator (or monitor blood sugar and heart rate, suction a trach, or dispense medication, issues that have arisen in other cases). Such things are now being done by adults with disabilities themselves, or by friends, neighbors and relatives who have been trained to do so in consumer-directed personal assistance programs. Student volunteers have provided other services to their peers such as feeding and mobility assistance. No nurses need be hired, and tens of thousands of dollars need not be spent, to provide such services. The claim that IDEA forces schools to spend disproportionate amounts on specialized medical services is groundless.

In NY State, another regulatory absurdity may have bitten the dust. School districts are required to offer children with developmental disabilities aged 3-5 therapies and special education services. Typically, this is done in a segregated preschool. Low-in-come families who want their children with developmental disabilities in integrated preschools have been stymied because NY only offers them two choices. The state will pay very high costs to send the child to a segregated preschool, or it will pay for specialized services in an integrated pre-school, but the parents must pay the pre-school tuition. This is silly. It would cost the state far less to provide the services in an integrated setting, with tuition included, than in a segregated preschool.

In Application of the Board of Education of the City School District of the City of New York, a fair-hearing appeals procedure, a NYS Education Department Review Officer ruled that the district must pay pre-school tuition for B.G., a 3-year old with autism, because integrated preschool "was an integral part of B.G.'s special education program because B.G. needs to interact with, and model his behavior on that of, nondisabled peers."

This ruling could have wider application. The Review Officer rejected the district's claim that a state law forbade it to spend special education funds on generic pre-school tuition on the grounds that IDEA's requirement to provide "related services" is federal law that automatically pre-empts conflicting state law. VESID, which has refused to follow the federal Rehabilitation Act mandate that it buy vehicles for people in voc rehab when necessary on the grounds that doing so is against state law, should carefully review this decision.

Independent Living Garners Unprecedented Support

(Photos: 1. Assembly Speaker Sheldon Silver delivers the "keynote" address as Maria Dibble looks on
2. STIC TRAID Center Coordinator David Ayers and his dog Flipper listen to the speakers with the rest of the crowd)

Assembly Speaker Sheldon Silver
STIC TRAID Center Coordinator David Ayers and his dog Flipper
On March 24, 1999, over 300 people with disabilities and others gathered in the "Well" of the Legislative Office Building in Albany to celebrate Independent Living. The crowd heard from many of NY State's most notable leaders. Among them were Assembly Speaker Sheldon Silver; Senator Thomas Libous, Chair of the Senate Committee on Mental Health and Developmental Disabilities and the Senate Select Committee on People with Disabilities; Scott Stringer, Chair of the Assembly Task Force on People with Disabilities; Assembly Education Committee Chair Stephen Sanders; Deputy Secretary to the Governor Jeffrey Lovell; Education Commissioner Richard Mills; VESID Assistant Commissioner Brian McLane; and NYS Independent Living Council Executive Director Brad Williams. Maria Dibble, STIC's Executive Director and Chair of the Association of Independent Living Centers in NY, was master of ceremonies. There were also multimedia displays documenting the value and diversity of Centers for Independent Living (CILs).

black and white photo of a large crowd of people with disabilities, seated; in foreground is a blind man with a guide dogCILs like STIC have had no state funding increase for nearly ten years. The Governor's budget proposal once again calls for level funding. CILs help people leave segregated institutions such as nursing homes, developmental centers, and group homes, and get real jobs and real lives in the community. On average, each such person helped saves taxpayers $47,917 a year. But due to limited funds, CILs only serve about 4% of those who could benefit.

This gathering represented the largest outpouring of official support for New York's CILs since the program started in 1983. CIL advocates were encouraged by and grateful to the officials who participated.

L.C. vs Olmstead: Our Dred Scott Case?

On April 21, lawyers argued the case of L.C. v Olmstead before the Supreme Court. This case is about two women with intellectual and mental disabilities who wanted to leave a Georgia institution and receive support services in the community. Lower courts ruled that the ADA's regulation that services be provided to people with disabilities in the most integrated setting required Georgia to release the women to community-based programs. The women were in fact released and are doing well--one in a group home and the other in a supported apartment. And they are being served at a considerably lower cost than in the institution.

The State of Georgia's argument boils down to two points, as described in their brief, their oral argument before the Court, and a letter they sent to state Attorneys General to try to get them to buck up. (Advocates had gotten all but 7 of the original 26 states to withdraw their names from a brief supporting Georgia's position.)

First, they don't believe that the ADA applies to situations where only people with disabilities are involved. They say there's no discrimination because people with disabilities aren't being forced to accept different treatment from a program that serves people with and without disabilities; the services in question are only offered to people with disabilities. That argument was defeated in the Helen L. case five years ago, which the Supreme Court refused to review.

Georgia's second point is that they are moving toward a community-based system of care, but "these things take time." They say that some people need to be in institutions and in order for those institutions to operate efficiently, they have to be filled to capacity. In other words, a whole bunch of people have to be held captive to make it cost-effective to lock up a tiny minority who are presumed to need it. Georgia fears that a ruling in favor of L.C. would start a pell-mell deinstitutionalization rush and the state could not afford to provide community services to all those people without cutting funds from institutional services. That is, of course, exactly what advocates say the law does require: Use the money that funds institutions to serve the same people in the community instead. Community-based services are virtually always cheaper than serving the same person in an institution. Georgia is simply whining that it's really hard to sort all this out and create an orderly process to move people from institutions to the community, and they'd rather not be forced to face the problem.

Georgia's attorneys admitted, in oral argument, that anybody could be better served in a community setting, if enough money is spent. In other words, nobody really "needs" to be institutionalized. Advocates agree, and would add that, despite variable individual service costs, a system consisting only of community-based services would cost no more, and probably less, than a system of institutional services to serve the same people.

Georgia lost this argument in the lower federal courts, on the grounds just described. So they took the case to the Supreme Court, which is expected to issue a ruling sometime in June.

Why is this so important? Advocates call L.C. v Olmstead "the disability community's Dred Scott Case." Dred Scott was a black slave who sued for his freedom because he and his master had moved to a "free state". The Supreme Court ruled against Scott, stating that Congress, in the Missouri Compromise, had overstepped its authority. Congress had no power to regulate slavery, the Court said, so Scott was still a slave, no matter where he lived. Disability rights activists say if the Court sides with Georgia in this case, it would be saying that Congress has no power to force states to desegregate people with disabilities and that the ADA's claim to do so is unconstitutional. There would be no recourse if states decide the best way to "serve" any person with any disability is in a nursing home, psychiatric hospital, or developmental center.

Activists are not sitting on their hands awaiting a decision. ADAPT held a candlelight vigil at the Court the night before arguments were heard, and staged a rally and press conference there the next day. (See ADA and ADAPT v the Supremes for more on ADAPT's ADA/Court offensive.) People are continuing to work on getting the remaining 7 states to repudiate their support for Georgia, and have also taken on the National Governor's Association and National Conference of Mayors for signing onto another brief supporting Georgia. In New York State, the Americans Demanding Access Committee (ADAC) has spearheaded organizing efforts in these areas. If you want to help, call Frank at 724-2111 (voice/TTY).

Medicaid Buy-In Needs Your Voice

In 1997, Congress passed a law that lets states offer a Medicaid buy-in to people with disabilities whose income levels don't qualify for Medicaid. Medicaid is the only medical insurance, public or private, that provides lifelong coverage for the attendants and prescription drugs that many people with disabilities need in order to work. People with disabilities who work and earn under 250% of the federal poverty level for their family, and who would be SSI-eligible if their incomes were lower, could take part. You wouldn't have to be on SSI, but would have to meet SSI guidelines. The "substantial gainful activity" income limit would be ignored. You may have to pay a sliding-scale premium. People with part-time jobs at minimum wage could stay eligible for Medicaid, take better jobs, and pay income taxes to offset service costs. Based on other states' experience, only a few people would be able to use this. NY, however, has decided not to offer the option, claiming high costs. Advocates have submitted a detailed proposal for a Medicaid buy-in program to the State Health Department.

Now the Governor, your state legislators, and Dennis Whalen, Acting Health Department Commissioner, need to hear from you that you want it. If we can do this, it will set a precedent when we ask the state to enact the options that will be offered under the Work Incentives Improvement Act.

New Lou Harris Report: Strong Support for ADA

from Justice for All

A new Louis Harris and Associates survey released in April, commissioned by the National Organization on Disability, reveals strong and sustained public endorsement of national civil rights protections for Americans with disabilities.

The findings may have been especially timely in light of the oral arguments before the U.S. Supreme Court in the Olmstead case, also presented in April.

Highlights include:

Nearly nine out of ten (87%), of those who are aware of the ADA, support and approve of the Americans with Disabilities Act.

A full two-thirds, or 67% of all adult Americans have read or heard about the Americans with Disabilities Act.

Three-quarters (75%) of all adults think that the benefits to people with disabilities are worth the additional costs to governments and businesses.

More than eight out of ten (83%) of all adults felt that creating opportunities for those with disabilities will decrease welfare rolls and increase employment opportunities while only one in eight (12%) feel it will be very expensive and not worth the extra cost for employers to hire more people with disabilities.

During March of 1999, 1,008 U.S. adults, 18 years of age and over, were surveyed by Louis Harris and Associates about their attitudes and perceptions of the landmark Americans with Disabilities Act.

You can get a full survey and results from the National Organization on Disability:
National Organization on Disability
910 16th Street, NW, Suite 600
Washington, DC 20006
(202) 293-5960 (voice) (202) 293-5968 (TTY)
(202) 293-7999 (fax)

Princeton Hires Anti-Disability Ethicist

Princeton University has named controversial bioethicist Dr. Peter Singer its new professor of bioethics. Singer has said, "Killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all."

While University officials cited academic freedom and the free interchange of ideas, people with disabilities were outraged that Singer has been granted such an influential role in shaping the minds of some of America's most-likely-to-become-powerful students. Activists are urging the disability community to come out in force to make Princeton withdraw its appointment. Here's how you can help: Contact the following people and tell them you want Peter Singer fired and why:

Harold Shapiro, Ph.D., President
Princeton University
One Nassau Hall
Princeton University
Princeton, NJ 08450
(609) 258-6100 (voice)
(609) 258-1615 (fax)

Governor Christine Todd Whitman
Princeton Trustee Ex-Officio
125 West State St.
PO Box 001
Trenton, NJ 08625
(609) 292-6000 (voice)
(609) 777-1292 (TTY)
send email to Whitman from:

Bill Bradley
Princeton Trustee
c/o Bill Bradley for President
395 Pleasant Valley Way
West Orange, NJ 07052
(973) 731-2100 (voice)

Senator William H. Frist, MD
Princeton Trustee
416 Russell Senate Office Bldg.
Washington, DC 20510
(202) 224-3344 (voice)
(202) 224-1911 (TTY)

Senate Needs Some Work Incentives

The Work Incentives Improvement Act is a federal bill that could solve several problems with Medicaid and Medicare regulations that make it hard for people with disabilities to go to work. The most significant changes would be:

People on SSDI/Medicare who are seeking work would have access to Medicaid-funded attendants and prescription drugs. However, states would have a choice whether to offer this option (see Medicaid Buy-In Needs Your Voice for why this could be a problem in NY).

People who are on SSI/SSDI would be able to go directly to a voc rehab service provider and purchase services with a voucher, instead of going through VESID or CBVH.

Pilot programs would be started to test the idea that gradually reducing SSI/SSDI benefits as a person's salary increases is a better way to get people to work than cutting them off completely when they reach a certain income level.

Essentially identical versions of the bill have been introduced in the House as HR 1180 and in the Senate as S 331.

In late May, HR 1180 had passed through the House Commerce Committee intact, and advocates were urging Speaker Hastert to schedule a floor vote.

S 331 had 78 Senate sponsors, but Senate Majority Leader Trent Lott refused to let the bill come to the floor for a vote. Lott said that the bill would allow people who are not disabled to collect Medicaid benefits and is not means-tested; he was quoted as saying that "millionaires" could get benefits under this bill. These were misinterpretations. There was a provision that would let people who are obviously disabled and seeking an SSI or SSD eligibility determination receive benefits immediately instead of waiting several months. In late May, an income cap was added to satisfy Lott.

The bill almost went to the Senate floor for a vote on May 27. But Senator Phil Gramm, still citing concerns about how the bill would be paid for, put a hold on it. The Senate then went out on recess until June 7.

For up-to-date news on both bills, see STIC's website:

SGA Limit Increased

The Social Security Administration has officially raised the Substantial Gainful Activity (SGA) limit to $700/month. This change will take effect on July 1, 1999. The SGA limit is the amount of income a person can have and still qualify for Social Security disability benefits (SSI or SSDI).

Technology Fair

September 30, 1999

There's No Place Like Home

There's No Place Like Home is a coalition of groups committed to expanding community and in-home supports for elderly persons, people with disabilities, and family caregivers. Here are their principles:

A Statement of Beliefs about Home and Community Supports for Elderly Persons and Children and Adults with Disabilities

We who sign this statement are members of organizations and citizens that care about adults and children with disabilities, elderly persons, and people who provide family care in New York State. We join with others in support of the following statement of beliefs about people who need support to live in their own homes in the community.


Laws should support adults and children with disabilities and elderly persons to be a part of their community and to have choice and control in their lives. Laws should respect and support family members to help adults and children with disabilities and elderly persons to live good lives in their own homes or with their families.

And Because:

Medicaid is a major source of funding for supports for children and adults with disabilities and elderly persons.


We call on all public officials to make sure that Medicaid, and other programs, protect the rights of all people with disabilities and elderly persons. Specifically, we call on public officials to put the following beliefs into practice:

Adults and children with disabilities, elderly persons, and family caregivers must be given real choices to get support in their own homes, rather than being forced to live in institutions or nursing homes.

Medicaid, and other programs, must give, at least, the same amount of money to support people to live in their own homes as they do for people in nursing homes and other institutions.

All people should have the choice to control the money and the support they need to live in their own homes.

For more information, contact:

Michael Kennedy
Center on Human Policy
Syracuse University
805 S. Crouse Avenue
Syracuse, NY 13244
(315) 443-3851

We're Determined, Ourselves, But Does New York Still Care?

Self determination lets people with developmental disabilities who are eligible for OMRDD services control their own budgets and use the money to purchase any supports they need to achieve their personal dreams for life and work in the community. No "menu" of services! No "approved providers"! You can live without ever using an agency "program"! Just figure out what you need and who in the community can supply it. Then buy it. And if it doesn't meet your needs, take your money to someone who will!

National experts have completed an evaluation report on NY's Self Determination pilot project. The report drew two major conclusions: 1. Many individual employees of OMRDD and other agencies are enthusiastically and creatively trying to make this work. 2. A lack of leadership and commitment of resources at the top levels of OMRDD has caused serious delays and problems. OMRDD does seem to have gotten the message, and is circulating draft policies and procedures that could make things go more smoothly. While they get their house in order, they've committed to add 100 new people to the pilot this year, and plan to open up the program to everyone during Year 2 of NYS Cares. Broome Developmental Services will get opportunities for at least 5 people to take part in the expanded pilot. OMRDD has an ambitious timetable to start enrolling people this summer, but money can't actually flow until the state budget passes.

The latest on that budget is that there might not be one at all. Both Governor Pataki and Assembly Speaker Silver have taken highly political stances that have put them at each other's throats. Pataki has said he doesn't care if the rest of the year is a series of 2-week continuing budget resolutions. Silver seems to think Pataki is a viable candidate for national office and that it's up to him to stop him. At the end of May, the Assembly refused to pass an emergency spending bill that included NYS Cares funding. Silver said it should be included with the rest of the budget.

All those families and people with developmental disabilities who urgently need residential services are being held hostage to the tiff between Pataki and Silver. If there is no budget, there will be no New York State Cares this year, folks. And despite the vaunted "5 year plan", with Pataki's eyes on another political prize, there may not be a Year 2. If there is still no budget as you read this, those of you who have been able to convince the powers that be of the need for NYS Cares ought to consider convincing them to pass a budget. Otherwise, those of us who care about this will face the much harder task of trying to get OMRDD to change how it does business without any new money to soften the process.

The next meeting of the
Southern Tier Self Determination Task Force
is set for
June 23 at 12:00 noon, at STIC.
We are seeking people with developmental disabilities
age 18 or above
who would like to participate in the pilot.

If you're interested, call Ken at:
(607) 724-2111 (voice/TTY).


Hop on the Bus, Gus! Set Yourself Free, Lee!

by Frank Pennisi

Wouldn't it be great to suddenly decide you wanted to go somewhere and within 20 minutes be able to run out to your local bus stop and catch a bus to your destination, just like nondisabled people do?

Well, that day is coming, and sooner than you think. BC Transit is hoping for full accessibility of all regular buses by June 2000.

When this happens, many people who have been riding the BC Lift, but who are able to use transit buses, may no longer be allowed to use the BC Lift. Under provisions of the ADA, the BC Lift, and services like it across the country, should be used only by people who absolutely CANNOT use a regular transit bus. This will also make it easier for those who really need the Lift to get a ride, by cutting out people who don't really need it.

At first glance, this may sound like a bad thing, but let's think about it a little. This is not meant to put down the BC Lift, which has provided valuable service for over 15 years... but the fact is that the Lift (and any other dial-a-ride service), by its very nature, is as much of a pain in the neck as it is a convenience. For instance, what if you don't feel like going to a movie at 6:00 on Thursday, after having scheduled the ride the Wednesday before? What if you get a call from a friend inviting you to their house across town to see another friend who just got to town unexpectedly and you can't get a ride? What if you oversleep and are running 15 minutes late getting ready for work and that's the day the Lift gets to your house on the early end of the 15-minute window? What if you mistakenly scheduled an important appointment for Tuesday the 12th. and it turns out that the 12th. is actually Monday, and the Lift shows up Monday and you than can't get a ride for Tuesday? You get the idea. It's hard to plan your life a week in advance.

If you ride the regular transit buses, you don't have to plan your life in advance. When all are accessible, it will be a more regular, reliable and cheaper service than the BC Lift ever could be.

Half of our BC Transit buses are accessible right now. If you've never done it, pick up a schedule and go for a ride on one. Try it, you'll like it! It could open up a whole new world!

Send Lawyers, Guns and Money

by Frank Pennisi

Are you an attorney practicing in Broome, Tioga or Chenango County who specializes in disability rights or employment discrimination? Do you know an attorney from these counties who takes cases in the above two areas? Are there any attorneys who would be interested in learning about and/or specializing in either of these areas?

If so, STIC wants you! We receive several calls a week from people with legitimate job discrimination cases under the ADA who are in desperate need of legal representation. We are forced to refer them to the Division of Human Rights, who are criminally understaffed and overworked, because we have yet to find a lawyer specializing in disability rights in the Southern Tier.

If you are such a person, or if you know of such a person, or if you're even interested in becoming such a person, please call Frank at 724-2111 (voice/TTY).

Deaf Calendar

Southern Tier Deaf Club Events
Picnic at Otsiningo Park
1:00 pm

5th. Annual CVSP Picnic
10:00 am

Social - 6:00 pm
Meeting - 7:00 pm

Inter-Bowling Associations
Ideal Bowling Endicott
12:00 noon


Independent Living Comes to Social Work

by Charles Kramer

Over the years Social Work as a profession has voiced many of the values of Independent Living. This is not to be confused with people who work with social service agencies. They have in the past been called social workers also. Often this group has been very pro-institutionalization. They have often thought that they knew better than their "patients, residents, clients or consumers". It was what they thought that mattered because after all, how can you expect "those people" to make good and right decisions?

Often this violated personal and cultural values. So the Social Work profession has been trying to clarify what a social worker is and operate out of an extensive code of ethics. Out of this has come standards for who can "practice" social work and use the name. Persons who are not accountable to the code of ethics will not be allowed to call themselves social workers. This accountability can be called on through the National Association of Social Workers (NASW) in Washington, DC.

March's NASW News contained proposed policies on people with disabilities. They support people with disabilities advocating for their rights to equally participate to the fullest extent in society. They support self-determination in housing, education, transportation, work, health care, social services, and any other public accommodation. There is a commitment to eliminate physical and attitudinal barriers in the social work community and the community at large. The proposal also supports making sure that persons with disabilities are on board and make their voices heard in policy making.

The proposed policy, by Ms. Charmaine K. Gilbert, MSW of the California Chapter, is the first time I have seen real support for Independent Living as a whole. The proposal is one that really steps back from old able-ist thinking. It is my hope that NASW will support this policy and carry on with the Independent Living Philosophy and what real social work should strive for.

STIC Support Groups

Information & Resource Group for People Who Are Blind or Visually Impaired

Meets: Every Monday, 11:00 am
Contact: Theresa Northup, 724-2111

TBI Support Group

Meets: Every Tuesday, 11:00 am - 12:30 pm
Contact: Mary-Ellen Kelleher, 724-2111

Parents Empowering Parents (PEP)

Meets: Every Wednesday, 9:30 am - 11:00 am
Contact: Jo Anne Novicky, 724-2111

I Have a Dream Self Advocacy Group

Meets: 2nd. & 4th. Wednesday of the month
Contact: Susan Link, 724-2111

What's Up, Doc?

STIC is part of a group, spearheaded by the New York Lawyers for the Public Interest (NYLPI), that is working to achieve better accessibility in medical facilities across New York State. Please take a few minutes to fill out and mail this survey. We are also looking for stories of people who have been discriminated against by a doctor's office, hospital or HMO because of their disability. If you have such a story or need more survey forms, please contact Frank at 724-2111 (voice/TTY).
This questionnaire is part of a statewide effort to address accessibility problems. The survey should not be deemed to be an offer of representation. It is an attempt to determine if individuals with disabilities find medical providers' facilities accessible. All responses are strictly confidential. If the space provided is not sufficient please feel free to continue on another page. If you have any questions, please call Frank at 724-2111 (voice/TTY). Thank you for your time.

1. Have you had a problem with access to your medical service provider? (eg. doctor, hospital, HMO)

____ No ____ Yes (If yes, please give the name/address of this medical provider. If you have had difficulties with more than one provider, please complete another questionnaire.)

Provider Name: _______________________________________
Town/County: _________________________________________

2. Has communication with this medical service provider been difficult due to your disability? (ie., no ASL interpreter, braille materials, alternative format, TTY, etc.)

____ No ____ Yes If Yes, please describe:


3. My medical service provider was not fully accessible to me because: (Check all that apply)

____ Inadequate or inconvenient parking facilities
____ Stairs or other obstructions to access of the front doors
____ Doors that I cannot operate on my own, or doorways that are not wide enough
____ Obstructions/barriers to the visually impaired
____ Hallways that are too narrow or have other physical obstructions
____ Bathrooms do not have the physical modifications I need
____ Examination tables are not modified for people with disabilities
____ I have a service animal that is not allowed in the office
____ There is no elevator or the elevator is inaccessible (eg. buttons out of reach)
____ Staff will not assist with paperwork or help me prepare for the exam
____ Other (please describe)

4. May a member of our office contact you regarding your responses? (Responses remain confidential.)

____ No ____ Yes If Yes, Contact Name: _____________________________

Phone or TTY: ____________________

When completed, please return to:
Dennis Boyd, Esq.
New York Lawyers for the Public Interest
151 West 30th. St. 11th. Floor
New York, NY 10001


Training, Planes, And Motorcycles

by Niki Gonzalez

It was a beautiful day in early October, when my mother started feeling some pain and cramping in her stomach. She was having a baby, and she figured the baby was due, and she was right. I was born on October 3, 1949, at approximately noon.

I was the youngest of three children. I was raised and went to school in Huntington, West Virginia. I got a four-year scholarship to college in my senior year, so I went to Marshall University. I majored in physical education and played every sport, except football. I really loved school, and most of all, science. I studied biology, botany, zoology, anatomy, and physiology. I joined a sorority, Alpha Chi Omega. College was fun. I was Miss Marshall my junior year. After graduation, I moved to Elizabeth, New Jersey, where I taught girls' physical education for seven years. I worked with seventh and eighth graders and also coached the girls' basketball team.

After teaching for a number of years, I decided to change careers and became a flight attendant for American Airlines. They sent me to Dallas/Fort Worth for five months of training. After I started working, I lived in New York City and eventually, Redondo Beach, California. I traveled all over the United States for about six years.

In 1980 I was married on a small farm in upstate New York, where I have been since. Of all the places there are to live in the world, I had to pick this spot. Three children later brought me to a lot of different jobs that lasted from a short time to years. I was a waitress; I helped elderly people in their homes; I was a real estate agent for Century 21; 1 was a teacher's aide in an elementary school when my accident occurred.

It was on Father's Day in 1994. I was riding my Suzuki dirt bike on a dirt road near my home. A tree limb dropped off a tree and hit me on the head. I was not wearing a helmet. It knocked me unconscious. A friend found me and I woke up a month later. After I came out of the coma, I started rehabilitation. I had to learn everything all over again. I had to learn how to walk, talk and live again. Some days are good days and some are bad. I learn something every day and look forward to learning and growing each day.

My children are 15, 14, and 13. I help them with their homework when they come home from school. It is good for them and good for me, too. They work hard on their schoolwork and do chores around home. They help with cooking and cleaning. They are good kids, but sometimes mouthy-like teenagers! I love them dearly. They love their father for what he has done for them and for me. I do not know where I would be without him or them. We did not expect this to happen to us, but it did. You have to take every day as it comes or as it is dealt to you. We have cried and laughed together. We have come a long way, but we have a long way to go. I always wanted a family, a home, and a job. I have a loving family and a home. Now I am working on getting the job.

I think I could bring a lot to a school system, because I am a caring person. I have a good sense of humor and a good heart. I am a good listener and a good talker, too. (Well, I have to have a few faults.) I am most comfortable working with elementary or middle school children, but could work with high school students, too. I do not let anyone take advantage of me. I respect people and what they have to say, even if it is negative.

My philosophy for life is simple. Live every day to the fullest because it might be your last.


SEEKING: All-electric apartment, not close to industry. One bedroom. Leave message with Laura at STIC. 724-2111 x.


Summer 1999
Issue No. 55