Guest Editorial

By Bob Gumson
(Gumson has been the Manager of Independent Living Services for the NYS Education Department since 1992.)

This title could easily be used as a banner or t-shirt for the Independent Living movement. How many times have we fielded the proverbial caller asking if we had an opening at our facility? How many times have we heard the underwritten advertisement or radio commercial promoting assistive living at all levels including "independent living"? There is clearly an information gap about the role and function of Independent living Centers when it comes to housing.

Let's start at the very beginning. Title VII of the federal Rehabilitation Act specifies, among several compliance criteria, that an Independent living Center is nonresidential. Why? Is it because the Federal government didn't want us forming radical communes of disability activists? Is it because people who work together shouldn't live together? Or is it simply because the residential model would look too much like traditional rehabilitation programs? There may be a small element of each of these in the answer but as a whole it does not come close to the rationale.

Have you ever seen a program-based living situation without rules? And we all know what happens when the rules are broken! We are asked to leave and make room for someone who can obey the rules. Housing presents the greatest opportunity to impose the most stringent system of rules upon us. We can only live in a certain place if we have a job. We can only live in the given congregate setting if we take our medication, contribute to chores and smile and say "Please". We can live in the new apartment if we don't care who we live with. What do you mean we can't make up the rules? That's right, usually we can't. Someone with benign compassion for the well-being of others has designed the rules and, by doing so, controls our lives. If the rules are not obeyed, as I said earlier, we will be discharged, moved to a "more appropriate setting", or sent back to wherever we came from.

How can the entire experience of living under some set of rules other than our own chosen lifestyles and decisions be anything short of a form of control? It can't. So when people with disabilities established the premises for Independent Living and based them upon self-help, peer role modeling and consumer control, we meant in all aspects of our lives.

Certainly it is conceivable that among the continuum of choices anyone has, a person with a disability may choose to live under a prefabricated set of rules in a group home or other segregated setting. But should our movement own and operate such a place? No! Emphatically, no, because it is contradictory to our philosophy. Independent Living Centers create an atmosphere where people with disabilities make decisions based on informed choices. We never promise that people make wise or risk-free decisions. Thus, the consequences of the choice are also theirs alone. But any living situation has conditions, eligibility criteria and consequences if they are not followed that derive from policies and regulations of the residential setting. If we were to attach ourselves to residential programming then we would need to enforce the rules and ultimately own the power and authority over someone with a disability.

Another complex philosophical issue surrounding housing relates to what extent an Independent Living Center should lend its name or resources to the development of segregated housing. It is well-known that housing presents one of the greatest obstacles to independence and we are keenly aware that there is a dramatic shortage of accessible and affordable housing options. So should Independent Living Centers stand in the way of making housing available to people with disabilities if the only choices appear to be segregated? Yes. Emphatically, yes, we should be diligent in preventing the development of additional segregated settings, because to do anything else is a demonstration of the acceptance of segregation of people with disabilities. Anytime a new dwelling is built solely for disabled residents, we are creating another stain on the landscape of equality in a community. Have you ever seen bricks and mortar torn down because they symbolized segregation? Are you aware of any housing option that was segregated on the basis of disability that suddenly opened its doors to nondisabled people?

So where should our energies be directed if the only funding for housing appears to be for segregated settings? We need to change the system that determines the eligibility criteria for funding. We need to advocate for new funding sources for additional options. We need to advocate for requiring integrated accessible housing to be part of other affordable housing projects. We need to protest the groups that continue to build monoliths to segregation in communities, because other choices do exist. Even if funding integrated, scattered, and other appropriate models causes strain on resources to connect housing to services, we need to advocate for more funding and fewer compromised solutions. If we continue to turn our backs on segregated housing or lend support for it, we are guilty of creating the next century of disability ghettos. We are accountable for perpetuating the stereotype that people with disabilities live "over there" and the rest of a community lives wherever they choose.

It is well-known that people who are forced to live clustered together because a community outcasts them will begin to see themselves as devalued and oppressed. They will be kept at arms length from the rest of the community. Look at American Indian reservations or low-income housing projects. Devalued people will become subcultures and turn to socially unacceptable behaviors to cope with discrimination. We can see that in the chronic use and abuse of alcohol and other substance abuse among American Indians, people with disabilities, and cultures of poverty.

Independent Living Centers cannot be associated with promoting conditions that bring our disability culture down. ILCs are vital catalysts of change and must bring hope and dignity to our culture. We count on ILCs to engage developers, management companies and residential realtors to incorporate accessibility into all housing projects, to consider people with disabilities a viable part of the marketplace, and to convince others to embrace the spirit of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. We are counting on the continued adherence to a nonresidential policy that looks segregation in the eyes and says "No!" while raising consciousness to break down barriers and allow greater integration of people with disabilities. We expect our ILCs to broker the necessary changes to grow integrated housing stock in the years ahead because we know nobody else has the courage to uphold our philosophy.


by Maria Dibble

Imagine you are a 35-year old man with a developmental disability. You live alone, have a part-time job, and receive some personal care and Residential Habilitation ("Res Hab") support through OMRDD's Home and Community-Based (HCBS) Waiver.

One night when you are chopping lettuce for your dinner salad, you accidentally cut your finger with the knife. After applying a cold compress and pressure for a while, you realize that the cut might need some stitches. You get a neighbor to take you to the emergency room, where you get three stitches to sew up the cut. It all heals up within two weeks.

Three weeks later you make an offhand remark to your service coordinator that you had cut your finger and had to go to the ER. The service coordinator informs you that under OMRDD regulations, your cut finger is a "serious reportable incident" and even though you had taken care of your own needs and your finger was completely healed, she will have to report the incident to the Broome Developmental Disabilities Services Office (DDSO), the county Department of Mental Health Legal Services (DMH), and the Commission on Quality Care (CQC).

Additionally, an investigator will have to be assigned to look into what happened, why it happened, and what has been done to correct the situation. You get very angry and say, "I can take care of myself. I don't need those people butting into my life for no reason. I don't want you to tell anyone." The service coordinator sighs and says, "I'm sorry, but I must, and I must spend a great deal of time filling out lots of forms so my agency doesn't get into any trouble."


You are a parent of a seven-year-old child with significant developmental disabilities. Your family receives support under the OMRDD Waiver to assist with personal care, as well as many other services.

One day when your child is playing on the floor, she pulls on the tablecloth, causing a bowl to fall on her head. You immediately take her to the emergency room, where x-rays are taken and other tests run, with the end result being that no damage/injury is found. Given a clean bill of health, you take your daughter home.

A couple weeks later you're chatting with the Res Hab worker, and you tell her what happened. You say that you no longer leave the tablecloth on the table (except for dinner) and you've gone through your house to make sure nothing similar could happen elsewhere. The Res Hab worker tells you that, unfortunately, she must report this as a "serious reportable incident" and will have to notify her supervisor and the Executive Director of her agency, the Broome DDSO, DMH Legal Services and CQC of the incident. They will then have to conduct a full investigation of the incident. Very distraught, you say that you've done all you could, it was an accident, why are they investigating you? It could happen to any child of any parent! Your Res Hab worker assures you that you haven't done anything wrong, but OMRDD regulations require this and she can do nothing about it.


You are a parent of an eight-year-old girl with significant developmental disabilities. She is included in a regular classroom and receives many services under the HCBS Waiver. You are very active in your daughter's education, and have become highly concerned about the fact that your child is coming home with bruises and marks on her arms and legs. You report it to the school administrator and nothing gets resolved. You then inform your service coordinator about the situation and ask for help. The service coordinator immediately calls the county Department of Social Services (DSS) Child Abuse Hotline about the situation, then reports it to the police as well as documenting/reporting it as a "Allegation of Abuse". The police and DSS do not want to get involved because it is a school-related incident, so the service coordinator discusses the situation with OMRDD officials. While those officials are sympathetic and concerned, they are unable to take further steps beyond the forms and provisions outlined in regulation.

Unfortunately, this isn't just your imagination. As an agency that provides OMRDD-funded services, if we become aware of any kind of injury or situation that requires more than basic first aid, we must report it to the people mentioned above. We also do hours of paperwork, and a very time-consuming investigation process. All applicable parties must be interviewed (including the consumer, family members, witnesses, etc.), their statements taken, and all the correct forms filled out and filed. The incident must be discussed before a highly-regulated review committee at STIC, and the Executive Director must be kept apprised of all developments. In the last scenario described--the abuse at school--all of this incident reporting was very appropriate. Unfortunately, all it achieved was to document who did what, where, when and how. When it came to trying to get something done about it, OMRDD and other entities could not or would not go beyond the specifics of the regulations.

Several STIC staff and I sat through a two-hour training on how to decide what types of incidents are reportable, how and when to report them, to whom reports need to be sent, how incidents should be investigated, etc. Many of us have been through these trainings before, but I don't think we were ever struck as hard with how intrusive they are to consumers and their families, how redundant and useless most of the paperwork is, and how most of it has absolutely no benefit for consumers or family members. It serves one, and only one, purpose. Forgive my crudity here, but it is a phrase used much by government and other officials: CYA--"Cover Your Ass". Make sure no one can sue you. Make sure everyone is notified so no one can be responsible, make sure it is reported even if it happened a month ago and even if the situation was completely resolved, and above all make sure you report it even if it's against the consumer's or family's wishes.

If you are a recipient of OMRDD services you are subject to these regulations. It's like Big Brother looking over your shoulder all the time, or like having a surveillance camera following you around "for your own protection, of course". Government and bureaucratic officials say they are looking out for your safety.

Do you feel safer knowing that your cut finger is a subject for review by three government agencies, a full committee of STIC staff, and more? Does it make you feel more secure to know that if your child has an accident, that accident will be investigated and reported to many agencies? How about the fact that even if serious abuse occurs in a school classroom, all of this paperwork and oversight will probably produce absolutely no results? What does that do for your sense of personal safety?

To be fair, many OMRDD officials find these procedures and requirements as intrusive and redundant as we at STIC do. I'm all for reasonable regulations that truly help consumers who are neglected, abused or otherwise endangered. In such cases, incident reports are warranted and investigations desirable. At STIC we serve hundreds of people who receive OMRDD services. If we were to report every single incident we find out about (not just observe, remember, but also become aware of) we'd probably need to hire three more staff. Hmm. Perhaps hiring a CYA Coordinator and a few CYA specialists would resolve all of our issues?

Whether these regulations are state or federal, they must be changed! In a time when resources are scarce and programs are being cut, just think how much money could be saved if we eliminated these overburdensome requirements, and how much more real work all of us could do! And, imagine: People with developmental disabilities would be one step closer to real freedom.

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


December 23 through January 1
Happy Holidays!
December 2002


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

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

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

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

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


Annual Campaign Needs Your Help

Tis the season of your wallet
Open it and overhaul it
Carefully but quickly measure
How much of your Yuletide treasure
You can send to STIC, fa la, la, la!

Yeah, that was execrable. Unfortunately, that's also not a bad description of our return for this year's Annual Campaign. Our goal was $6,000; we've brought in $4,510 so far.

We know that times are hard this year. All we ask is that if you haven't already done so, make a gift to STIC this year. If you still have the return form that came with your letter, please use it to make your contribution; it makes keeping track of progress toward our goal much easier. If not, then please write "Annual Campaign" on the memo line of your check.

And thanks so much to those
who've donated already:

Bud Beam
Charles S. & Helen Morais, Jr.


by Joy Earthdancer

The Consumer Directed Personal Assistance Program has grown tremendously in the past year. CDPAP allows people with disabilities to choose, train, and hire their own personal assistant. The program now serves 110 people in Broome and Tioga counties.

Because of the increased workload, we have hired Jennifer Donahue to work part-time in the program. When you call with CDPAP questions, you will have the opportunity to meet Jennifer. She is already a great asset to the program and will help us to be able to continue to grow.

Education Public Forum

The Public Forum
"Barriers to Inclusion"
originally scheduled
for October 17

will be re-scheduled
to take place in

early spring of 2003

STIC is dedicated to making "Barriers to Inclusion" a success and will announce the new date and time in the very near future.

In the meantime, any student with a disability, parent of a student with a disability or educator is encouraged to offer testimony, of five minutes or less, regarding his/her experience with inclusion.

If you have any questions regarding participating in the forum, please call:

Jennifer Ayala
724-2111 (voice/TTY) ext. 352

Hometown Holiday Light Festival

Second Annual
Hometown Holiday

Wednesday - Sunday
5:30 pm - 9:30 pm
November 29 Through December 29
Otsiningo Park

$7.00 per car

Southern Tier Independence Center
Ross Park Zoo

For More Information:
724-2111 (voice/TTY)

The Honor Roll

On September 12, 2002, STICsters, consumers, and other members of our community came together to celebrate the best efforts of wonderful people on behalf of disability rights, STIC as an organization, and/or individuals with disabilities. As happens every year, we benefited from the support and assistance of many dozens of people. Those we honored with awards were the cream of the crop, who went far beyond the call of duty to achieve outstanding results. Join us in recognizing these exemplary people and organizations.
Outstanding Agency Support
Suzanne Jackson, NYS Education Department
For providing much assistance in the creation of the Wingspan Technology Center, and for highly responsive support for parents seeking inclusion for their children.
Lori Visgitus, Johnson City School District
For her innovative, individualized approach to inclusion of all children with disabilities.
Lisa Zevotek, Lourdes Youth Services
For strong commitment to equality and independence for young people with disabilities through the Lourdes summer youth program.

Outstanding Business Support
BAE System Controls
For very generous donations of computer equipment to STIC and holiday donations to families.
BSB Bank & Trust
For their three-year sponsorship for our Hometown Holiday Light Festival.
New York State Electric & Gas
For covering the cost of electric power for the 2001 Hometown Holiday Light Festival.
Tammy Peters & Associates
For years of help above and beyond the call of duty with marketing and fundraising, most recently with time and equipment donated to the Hometown Holiday Light Festival.

Outstanding Consumer Achievement
David Barnauskas
Despite discrimination in a previous job, he picked up the pieces and became a very enthusiastic and successful employee in his new position.
Bonnie Knowles
For persevering, despite medical issues and significant life changes, to get her own apartment, set up a new household, and continue her personal growth.
Matthew Schadt
For achieving his dreams-attending the senior prom, graduating high school, getting his preferred job-and putting no limit on his expectations.

Outstanding Consumer Advocacy
Joseph Dutkowsky, MD
For helping turn OMRDD around on the issue of eligibility for people with muscular dystrophy.

Outstanding Consumer Support
Stacy Kocijanski
For being an exemplary consumer-directed personal assistant with a strong willingness to learn and a commitment to assisting her employer to live independently.

Outstanding Employment Assistance
Deb Harrington and Staff, Deb's Grocery
For providing excellent natural support as an employer of a person with a disability.
McDonalds Family Restaurants
For making the transition from school to work easy and fun, and believing in an employee with a disability when others didn't.
Skip Stewart, Walmart
For focusing on solutions instead of problems as an employer of people with disabilities.

Outstanding Foundation Support
Stewart W. and Willma C. Hoyt Foundation, Inc.
For major support of the 2001 Hometown Holiday Light Festival.

Outstanding Intern Service
Jennifer Grove
With total involvement in and dedication to learning about providing education-related services, Jen was so good that we hired her!

Outstanding Volunteer Service
Nick Bartlow
For patience and excellence in the thankless task of testing and inventorying a huge collection of old computer equipment that is now available to consumers.
Bea Dickinson
For tireless work on building renovations and remodeling, and for help obtaining grants from her employer, Time-Warner Cable.
Marguerite Lundgren
For being "STIC's Grandma" and doing whatever is needed, from running errands, making snacks for the SAIL group, to cleaning and more, and always with kind words for everyone.

Please Fill Our Give-Away Closet!

by Joy Earthdancer

Together with Broome County CASA, STIC has established a Give-Away Closet for people who are leaving nursing homes and are in need of household items. CASA and STIC invite you to donate furnishings, linens, and household items that are in good condition. We are not offering a pick-up service but will gladly set a time for you to bring items to STIC. All donations are tax deductible. Call 724-2111 (voice/TTY) and ask for Andy or Joy to arrange to leave your donations.


Courts Watch

This time we've got three ADA cases and one Medicaid case to look at, with a mixed bag of actual and potential results.

Access Now v. Southwest Airlines

In this case a blind man (Bob Gumson, VESID's Manager of Independent Living Services) complained that the Southwest Airlines "virtual ticket counter" website is not accessible to people with visual disabilities who need screen-reader software to access the world-wide web. Access Now, a disability advocacy organization, felt the case was of national significance and filed suit under Title III of the ADA (which governs public accommodations) in federal District Court in Miami. (They also sued American Airlines in a different district; no opinion has been issued in that case.) The Miami District judge dismissed the suit on the grounds that a website is not a "place of public accommodation". The facts of the case as stated in the judge's opinion included the points that using the site with a screenreader was not technically impossible but only very difficult, and that blind people can use the telephone to make Southwest Airlines ticket reservations, suggesting that the company does, as the ADA requires, provide alternate means of access for blind customers. More to the point, the judge found that the internet, and sites on it, are recognized legally as being in no particular physical or geographic place, that Title III of the ADA clearly limits its definition of "places of public accommodation" to physical places, and that other court decisions have only expanded this definition to non-physical displays or services when they have a "nexus to a physical place." Even though in 1996 the federal Justice Department sent a letter to a US Senator stating, in effect, that businesses that operate publicly on the web should make their websites accessible, the judge was unwilling to further expand the law, citing the unavailability of well-accepted standards for either website access or screen-reading software. Access Now plans to appeal the decision. While we agree with Gumson that commercial websites should be accessible to people with all disabilities, we agree with the judge that the ADA doesn't require it, and that Congress is the place to seek a solution on the issue.

Kiman vs. New Hampshire Dept. of Corrections

Kiman is a person with ALS ("Lou Gehrig's Disease") who claimed that he was mistreated in a state prison. He said that he was not given a cane for assistance with walking or a shower chair for use while taking showers, was required to climb stairs to a third-floor cell, and medications for his condition were deliberately and "maliciously" withheld. He claimed that the repeated falls that he incurred, as well as the withholding of medications, caused his condition to deteriorate more quickly than it otherwise might have. Kiman has since been released from prison. He filed suit under Title II of the ADA, which prohibits discrimination on the basis of disability by state and local governments, requesting money damages. The federal District Court ruled against him, stating that the Supreme Court's Garrett decision had indicated that citizens cannot sue states for money damages under Title II, and that since he was already out of prison, the allowable injunctive relief requiring the prison to accommodate him was not applicable to his case. The First Circuit Court of Appeals reversed this decision and sent the case back to the District Court, stating that, if true, Kiman's claims demonstrated a violation of the Constitution's Eighth Amendment protection against cruel and unusual punishment. The court used the argument that Garrett doesn't apply in this case because the ADA is simply providing an enforcement remedy for a clear constitutional violation and is not, as in Garrett, regulating conduct by states that is, at least arguably, constitutional. The federal government filed an amicus brief in support of Kiman, defending not the Eighth Amendment issue but the idea that the Congressional record of the ADA debate justified the ADA's Title II regulation of the states on grounds of a past pattern of discrimination--an argument that the Supremes specifically rejected in Garrett. There is no word, as yet, on whether this decision will be appealed to the Supreme Court.

Medical Board of California v. Hason

The Supreme Court has agreed to hear an appeal in this case, which spells danger for the ADA on both the issue of whether Title II can be enforced against state governments and on the definition of a "qualified person with a disability" who is covered by the law. Hason is an MD with mental illness who applied to the California Medical Board for a license to practice medicine. The Board refused the license on grounds of mental illness. Hason filed suit in state court, lost, then filed in federal District Court and lost again. The District Court ruled that Hason can't sue the state under Title II because the Supreme Court's Garrett decision indicates that Title II is unconstitutional and also because, due to his mental illness, Hason is not a "qualified person with a disability". A small group of Ninth Circuit Court of Appeals judges sided with Hason on both points and reversed the District Court, and the court subsequently refused the Medical Board's request to re-hear the case "en banc" (by the full court). We don't know why the District Court found Hason not "qualified", but the assumption the Medical Board made was that a person with mental illness can't safely practice medicine, and Hason countered that he received treatment (presumably medication) that remediates his condition and makes him safe. The Supreme Court has already ruled that a person whose disability is substantially remediated by medication is, essentially, no longer disabled and so not covered by the ADA. So it seems likely that Hason will run afoul of that issue with the Supremes. As for the constitutionality of Title II, the Circuit Court simply noted that the Garrett decision did not explicitly find Title II unconstitutional. However, a judge who dissented against the refusal to hear the case en banc made the same point that we've made in past issues of AccessAbility, and in arguing for New York's passage of a Sovereign Immunity bill--that the rationale the Supremes used in Garrett, if applied specifically to Title II, is likely to result in a determination that Title II is unconstitutional in its entirety as applied to state governments, at least, in light of Kiman, when it doesn't address specific Constitutional guarantees. Now the Supremes have accepted an opportunity to make that assumption explicit.

Antrican v Odom (also known as Antrican v Buell)

This is not an ADA case, but it affects disability support services funded by Medicaid. It is a class-action suit filed against officials of the State of North Carolina for failing to make adequate Medicaid-funded dental services available to Medicaid recipients. Only 16% of NC dentists accept Medicaid, because the state's reimbursement rate for dental services is so low. The result has been that Medicaid recipients face lengthy delays in, and often must travel long distances to receive, dental services. The plaintiffs sued the state under the federal Medicaid law, which requires state Medicaid plans to "provide such methods and procedures relating to the utilization of, and the payment for, care and services available under the plan as ... are sufficient to enlist enough providers so that care and services are available under the plan at least to the extent that such care and services are available to the general population in the geographic area," and that "all individuals wishing to make application for medical assistance under the plan shall have opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals." The plaintiffs want the state to start paying Medicaid dental providers enough money to ensure that the service will be available in every locality. North Carolina argued that the plaintiffs could not sue the state for a whole raft of reasons that pretty much summed up any possible defenses a state could make against the federal Medicaid law on grounds of the Eleventh Amendment. Both the federal district court and the 4th. Circuit Court of Appeals ruled against the state and for the plaintiffs. Most importantly, the US Supreme Court looked at these decisions and declined to take the case--which means they consider them to be correct. The details are too lengthy to discuss here, but the implication is that, at least for any "State Plan" Medicaid service that a state opts to provide, states must do whatever is necessary, including increasing what they pay providers, to ensure that all of the services in the plan are readily available to all eligible persons, even if doing so has a significant impact on the state treasury.

Federal Election Reform Passes

Not long before the November elections, Congress finally passed an election reform bill. It was too late to affect this year's balloting, but many of its provisions should take effect by the 2004 presidential election.

Of most concern to people with disabilities, the "Thomas Amendment", which would have limited accessibility requirements to communities with more than 50,000 people, was dropped. amicus voting precinct must have at least one accessible voting machine. Funds will be appropriated both to buy out antiquated voting machines and to purchase accessible ones. And all voters will have the ability to check over their ballots and correct errors before finalizing their votes.

The law also imposes new proof-of-identify requirements on voters, especially new voters. First-time registrants must provide their Social Security numbers and/or drivers license numbers when registering. If they registered by mail, they'll have to provide identification the first time they vote, and they must use Social Security cards if they have them. Their information will be compared to a central database and if it doesn't match, they will be permitted to vote "provisionally" but may later have their votes thrown out.

Civil rights activists pointed out that the Social Security Administration's database isn't always accurate, and that some people may wrongly believe they don't have Social Security numbers (almost all US citizens do, because they've been automatically assigned when a birth certificate is filed for many years now). Some people could have their votes thrown out erroneously. If you're a first time voter, or move and register in a new state, you should definitely make sure that your Social Security information is accurate. Others say this will force a "national identity card" on citizens. The Social Security number already is a national identity card; citizens can't work legally, or get government benefits, without one. Tying that number to a residential address in a central database--even with the law's restrictions on how and when that information can be shared by other government agencies--is a troubling development, especially with the government's increasing post-9/11 efforts to use "data mining" to track the activities of ordinary law-abiding citizens. People with disabilities, like all US citizens, should pay attention and use both the polls and the courts to protect their civil liberties.

Historic Victory!
Most Integrated Setting Bill Becomes Law

After months of advocacy and direct action, the Most Integrated Setting bill was signed into law by Governor Pataki on September 17, 2002. It establishes a council to develop a comprehensive, statewide plan for providing services to people of all ages with all disabilities in the most integrated setting. As the plan is being developed, all state agencies will have to identify and propose solutions for the broad gaps in community-based services that exist for people with adult-onset degenerative conditions, cognitive disabilities such as Alzheimers disease, and mental disabilities.

This is a major milestone for New York's disability community, and one of the most forceful demonstrations to date that You CAN Fight City Hall and Advocacy Works! Here is the story:

On February 6, 2002, hundreds of advocates from ADAPT, the Coalition to Implement Olmstead in New York, and Independent Living Centers from across the state protested at the Department of Health because of the state's lack of compliance with the Supreme Court's Olmstead decision, which says that it is illegal discrimination under the ADA for a state to refuse to provide services to people with disabilities in the most integrated setting possible. After eight activists were arrested for sitting-in at the Governor's office, Assemblyman Kevin Cahill, Chair of the Assembly Task Force on People with Disabilities, introduced the Most Integrated Setting bill. It was passed unanimously by the Assembly on June 12, 2002.

The Senate version, introduced by Senator Maziarz, seemed to be fated to die in the Aging Committee on the last day of the Senate session in June. In order to ensure it would be brought to the Senate floor for a vote, ADAPT activists occupied Majority Leader Joseph Bruno's office, demanding he get the bill out of committee and to the floor for a vote. Bruno gave in, and the bill was passed unanimously by the Senate the same day.

On August 22, 2002, it was expected that the bill would be sent to the Governor for review. Knowing he would have to either sign it or veto it in the next 10 days, about 50 activists occupied the Governor's "War Room" for three hours. However, bureaucracy being what it is, the bill didn't get to the Governor's desk until September 5.

About 4:45 pm on September 16, Bruce Darling got a call indicating that the bill was in jeopardy. Rochester's ADAPT chapter worked their magic to put together two teams to leave the next morning. They came up with a group of 34 people and coordinated all of the logistics. ADAPT was prepared for anything. They packed food, drinks, bullhorns, protest signs and handcuffs... just in case!

At 5:00 am, the first group of Rochester ADAPT members left for Albany to secure meetings with key players. An hour and a half later the second team started to assemble in the Center for Disability Rights (CDR) parking lot. With one of the vans malfunctioning, the ADAPTers used quick thinking and a lot of creativity to get a substitute vehicle and get everybody in.

CDR Executive Director Bruce Darling and Chris Hilderbrant met with NYS Independent Living Council (NYSILC) Executive Director Brad Williams in Brad's office to discuss how to proceed with the negotiations. From there negotiators went to the office of Don Robbins, Assembly Legislative Coordinator, and were met by Sim Goldman of Disability Advocates and Harvey Rosenthal of the New York Association of Psychiatric Rehabilitation Services (NYAPRS). During this meeting, advocates discussed the eight "chapter" amendments that the Governor wanted made to the bill, four of which were unacceptable to the Assembly. Robbins said he was confident that the Governor would sign the bill even without the chapter amendments.

Advocates then went to the NYAPRS offices for a conference call with Assemblyman Cahill. Cahill explained his issues with the amendments, stating he would be willing to look at technical amendments or language that would strengthen the bill, but anything that the Governor wanted that would weaken the bill was not acceptable. Although advocates were concerned that the bill could be lost at this point, Cahill was convinced that the Governor would sign it.

The second, large group of ADAPT members arrived in Albany, had lunch and the leadership team formulated a flexible plan, which was basically to keep pressure on both the Governor and the Assembly while negotiations were taking place.

By 1:00 pm ADAPT activists from Rochester, Utica and New York City had assembled at the meeting place in Albany. The negotiating team, which now included Barb Knowlen from the Utica CIL, went to the Governor's Office to meet with the Governor's Assistant Counsel, Jonathan Federman. Jon asked how things went in the Assembly. Rosenthal made it clear that "it's important that this day end with the MIS bill becoming a law."

Under the watchful eye of several state troopers, Rochester ADAPT headed for the Capitol building. They split into two groups. One went to the Governor's War Room and another to wait outside Robbins' offices, in the same building on different floors. Federman asked about the group that was in the War Room, saying he hoped ADAPT wouldn't do anything rash while negotiations were still going on. Bruce assured him that as long as progress was being made everything would remain calm. He pointed out that another group was visiting the Assembly. Rosenthal said, "We are equal opportunity advocates."

Both groups hung out and relaxed with chat, games, and stories. State troopers were visibly nervous and alternated standing guard with recurrent patrols. Some joked with the advocates and showed their support, but many looked very serious and worried.

When Bruce met with the ADAPT group on the Assembly side, they told him that Robbins indicated that the Governor's office had made no contact with them, even though Federman had been saying that discussions were in process. The negotiators then went to see Robbins. When asked if he was talking with the Governor's office, Robbins simply said there was "no news." As negotiators were leaving, Barb Knowlen stopped and turned around to face Robbins. She looked at him and said in a steady voice, "Stop playing political football with our civil rights."

The negotiation team went back to Federman, who warned them that, although progress was being made, the process might take a while. He mentioned that the building would be closed at 6:00 pm. Bruce said that ADAPT would wait until the bill was signed. As he left the meeting, he saw Federman speaking with the trooper in charge. Bruce went over and reassured the troopers that things would be calm as long as progress was being made. He said that Federman was aware that negotiations might take "a while" and that he was fine with ADAPT waiting it out. The trooper looked at Bruce and reiterated that the building would close at 6:00 pm.

The groups sat for hours, explaining the issues to the troopers. They described ADAPT actions as hours of boredom broken up by short bursts of chaos. A trooper sympathized, "Sounds like the military to us." One advocate chimed in, "Sounds like my marriage."

Negotiations continued through the day with Federman. After each session the negotiators reported back to the rest of ADAPT. During one of these reports, Bruce said that Federman had requested more time to negotiate and said he would meet the advocates again in 30 minutes. Diane Phillips poked Bruce and asked, "Isn't that what he said 45 minutes ago?"

The group's solidarity was impressive. As plans evolved the advocates held firm and stayed positive, even the Assembly group, who sat on a hard tiled floor for hours. In the War Room, Anita O'Brien managed to develop a game of Charades that was accessible to a blind woman, three Deaf people, people with physical disabilities, and the rest of the group, by incorporating reasonable accommodations into the game.

Each time the negotiating team returned to the Governor's office their questions were more specific. Rosenthal and Goldman asked Federman about the bill language and where the Assembly stood. Negotiators needed a sense of where the blocks were. Federman reiterated that there were eight amendments, only four of which were in dispute, and insisted that he only needed half an hour or so. It was now 6:00 pm and nothing had changed since the morning. Bruce told Federman what Diane Phillips had said. Federman asked if the negotiation team would move to the War Room as the secretary was finished for the day. Bruce pointed out that meeting in the middle of the ADAPT group might be tougher on the state negotiators given the comments people were already making. Federman excused himself and came back in a few minutes to announce that the Governor would sign the bill with only the four technical changes. Federman agreed to announce this to the whole ADAPT group in the War Room.

The Assembly group entered the War Room. Federman announced that Pataki would sign the bill that night. The group went wild. Bruce shouted, "How do you spell power?"

The crowd roared back, "A! D! A! P! T!"

Legislative Briefs

Medicare Homebound Rule Reform

S. 2848, which would have eliminated the arbitrary "Homebound Rule" that takes away attendant services from Medicare-eligible people with significant disabilities who attempt to lead active lives, and substituted functional assessment criteria, did not pass the Senate before the election recess. Don't expect further action until the new year.

Lifespan Respite Care Act

HR. 5241/S. 2489, a bill that would have provided funding to states that opt to provide a variety of respite programs, also did not pass before Congress adjourned. We don't know whether further action is forthcoming.

Mental Health Parity

President Bush says he's in favor of a bill, but so far, no such bill has been introduced.

Medicaid Buy-In Reminder

The Medicaid Buy-In
takes effect in
New York State on

April 1, 2003

As of that date, working people with disabilities can earn much higher salaries and remain Medicaid-eligible.

Our information is that state officials are "working on it". Will they be ready to go on April 1? We don't know.

Should you hold their feet
to the fire about it?

Yes you should!

Mentally Ill Dumped in Nursing Homes

In an apparent effort to cut costs as well as to enrich a wealthy Pataki campaign contributor, the New York State Department of Health (DOH) has been funneling people with mental illnesses out of state mental hospitals and into illegal confinement in unregulated nursing home wards. This news, reported by the New York Times and the Village Voice in October, is the latest in a series of acts of corruption and malfeasance by Pataki's DOH, which has long been a feeding trough for his political cronies and donors. As have other scandals previously reported in AccessAbility, including the creation and defense of the Northeast Special Care Center, the New York City adult home scandal, and the statewide nursing home monitoring and enforcement debacle, this latest episode victimizes New Yorkers with disabilities.

According to New York Times investigators, the special nursing home units, which the state calls "neurobiological units", are in effect separate "locked" floors where people with mental disabilities have been placed against their will without either proper legal procedure or significant rehabilitation services or activities. The first units of this type were proposed in 1996 by Benjamin Landa, a Pataki campaign contributor who is a partner in a firm that operates four nursing homes in New York City and Nassau County. According to the Voice, Landa is represented in Albany by lobbyists Joseph Goldberger and Joseph Menczer, who also represented Lawrence Friedman, a nursing home operator who is now in jail for Medicaid fraud after his connections to Pataki cronies helped increase his take from DOH from $4 million to $47 million dollars a year. Landa was also appointed to the state's Public Health Council, which subsequently decided not to require any special regulations for the units he operates.

New York mental hygiene law requires that persons committed to locked facilities due to mental illness must legally be determined to be a danger to themselves or others. Nursing homes do not fall under mental hygiene regulations. The doors on the units are not actually locked, but the elevators serving the floors that contain the units are, and the stairwell doors have alarms. While the facility operators claim that inmates can come and go as they please and that inmates who show improvement are discharged to less restrictive settings, several staff who work in different units say otherwise. They told the Times that under no circumstances are inmates allowed out of the units without staff in attendance, and that no one is ever discharged from them. Times reporters also noted that the inmates of these units get very little therapy and spend most of their time just wandering the halls--a situation that would be illegal if they were in psychiatric hospitals or group homes. Apparently, the units are deliberately designed to violate the civil rights of people with mental disabilities without technically violating the law.

The state reaps substantial savings by transferring people out of state psychiatric centers, which are 100% state-funded, to nursing homes, which are funded by a state Medicaid system financed by 25% state, 25% local, and 50% federal dollars. The Times said the state's share of the annual cost for an individual placement on a nursing home "neurobiological unit" is $20,000. STIC estimates the annual cost of a psychiatric center placement as over $200,000. So while the state shaves over $180,000 from its annual long-term care budget for each such placement, the full $80,000 cost is still funded by your state, federal, and local taxes. STIC estimates that the same people could be served quite well in their own homes, with full community access and their civil rights protected, for less than half that amount.

The nursing home "neurobiological unit" program was created without the legislative debate or public notice/hearing process that usually goes with such decisions, and was housed in places that have no expertise in mental disabilities, apparently simply because some well-connected nursing home operator got a bright idea about how to make some extra money. The program was begun as mental health advocates were pleading with the state to stick to its commitment to use the money freed up by moving people out of psychiatric centers to fund community-based supports. It is now clear that the Pataki Administration could have done that and chose not to because it was more concerned with padding the pockets of its pals. The result is that somewhere around 1,000 New Yorkers with mental disabilities have been effectively locked up against their will without due process of law or hope of treatment. Asked for comment by the Times, NYS Mental Health Commissioner James L. Stone "called the units excellent long-term housing. 'They have met a real need for some people who have been languishing in our state hospitals,' he said."

Nursing Home Industry Misleads on Costs

Nursing home lobbyists mounted a big campaign to keep the feds from cutting their funding this fall. As it was in full swing, the national news magazine US News and World Report reported that the nursing home industry's claims of poverty are false.

Nursing homes, whether for- or not-for-profit, get most of their money from two federal medical insurance systems, Medicare and Medicaid. Although some people enter nursing homes as "private-pay" patients, nearly all who stay will eventually use up their private resources and become dependent on one of these programs. So the nursing home lobby, understandably, focuses its considerable power on Congress's oversight of them.

Before 1998, Medicare paid nursing homes for whatever costs they submitted for a Medicare-eligible patient. Naturally, this encouraged them to pad their cost reports. So in 1998 Congress passed a law that changed Medicare reimbursement. Now nursing homes get a pre-determined rate from Medicare based on how much care a particular inmate is expected to need. To cushion the effects of this change, Congress provided for temporarily higher rates. Those rates expired on October 1 of this year. The nursing home lobby's big push was to get those rates continued.

Here's a summary of what US News found:

  • Despite industry claims that they are losing money, many for-profit nursing homes have profit margins of 20% to 30%.

  • Although nursing homes often say Medicaid reimbursement doesn't cover their costs, US News examined the financial statements of thousands of nursing homes and compared the number of Medicaid patients to their profit margins. The magazine found virtually no evidence that a high dependence on Medicaid funding has any effect on profits.

  • Nursing home operators say that, these days, they see a lot more people who have serious illnesses or disabilities and must spend a lot more money on specialized treatment for them. However, they haven't produced evidence to support this claim. Last February, the New York Times reported that most nursing home patients get an average of 4.1 hours of care daily, including 2.8 aide hours and 1.3 nursing hours. (Although that, by any measure, is not a lot of care, and probably not enough, this does demonstrate very clearly that people don't need to be in nursing homes 24/7 to get adequate levels of service.) Both US News and University of California researchers also found that the severity of medical need among nursing home residents has not significantly changed for over 3 years. For example, "the percentage of patients who are bedridden held steady at about 5%. The percentage with pressure sores...was level at just under 10%. The portion of patients with incontinence hovered just under 60%; those with infections around 17%." And Congress's General Accounting Office (GAO) uncovered evidence that suggests that many patients for whom the more expensive "rehabilitation therapy" is being billed are not in fact the patients with the greatest need for it. About 75% of Medicare-funded nursing home inmates are there for "rehabilitation therapy", but most of them do not have the highest-level care needs. Most are in "medium severity" groups, probably because those groups have the highest profit margin.

  • Although most people, including nursing home lobbyists, believe that the best way to improve substandard nursing home care is to provide more staff, over the past several years nursing homes have not used the higher federal rates to hire more people. Nursing home staff levels have actually dropped by up to 16% in recent years. The GAO found that most of the extra Medicare money was not spent on direct-care staff, but on administrative salaries and perks, and on "financing".

  • Then there's the shady accounting and self-dealing. For-profit nursing home chains were seen to indulge in such fiscal shenanigans as operating related corporations that sell things such as food, or rent buildings, back and forth to each other. Some not-for-profit homes were found funneling money to related for-profit companies--essentially using tax-exempt status to enrich for-profit businesses. Much of this is technically legal under US tax and corporation law, but its purpose is solely to hide profits at a time when nursing homes claim they are losing money and need more of your tax dollars. And US News found that nursing home financial statements, reflecting millions of dollars, were often incorrect.

  • It appears that nursing homes have already figured out how to milk the new Medicare system as well. Instead of maximizing spending to inflate cost reports, they are now overestimating care needs in order to get higher rates, and then not providing the full estimated amount of care to approximately 25% of patients. Meanwhile, in many states Medicaid reimbursement still works on the old "pay whatever can be charged" system.

  • And finally, while nursing homes tell legislators one thing, they tell Wall Street another. For example, executives at Manor Care, Inc., one of the nation's largest nursing home chains, recently "touted higher earnings, healthy increases in revenue, lower costs, and success in filling beds with patients who produce higher reimbursements," according to US New, and received good marks for profitability from financial analysts.

Nursing home industry claims of dire financial problems are grossly exaggerated. But the Bush Administration has apparently not been taken in. While noting that many nursing homes provide poor care and that increased staffing could improve them, a federal Health and Human Services Department report issued earlier this year concluded that bringing staffing up to minimally adequate levels nationwide would require an 8% increase in nursing home spending. Bush officials said they'd rather publish lists of good and bad nursing homes and let them live or die by the quality of their services. It seems clear that far fewer of them are near death than they'd like you to believe, and many could easily transfer money out of their executives' pockets and into better services if they wanted to.

It appears that Congress wasn't fooled by the nursing home lobby either; the rate extension does not seem to have been granted this fall. But there's always next year.

Pataki Proposes Adult Home Improvements without Funding Them

Following last spring's adult home scandal, Pataki's troubled Department of Health (DOH) promised to beef up inspection and enforcement in the "homes", which are actually large institutions, but no new funds were appropriated for the purpose. In November, DOH proposed additional improvements including more staff for medication and case management, more recreational and other activities, legal advocacy, and a long-term program to develop group home "beds" for 6,000 people. DOH also said "highly qualified and trained personnel" would conduct complete clinical and functional assessments of every adult home resident.

Advocates, while supporting most of these ideas, were highly skeptical about whether they will actually happen. DOH and other Pataki officials refused to explain how they would pay for a major increase in services at a time when those same officials are claiming a multi-billion-dollar budget deficit and have ordered immediate 5% spending cuts at state agencies. Advocates also had reason to wonder about the "highly qualified and trained personnel" who are to do functional assessments. OMRDD provides such assessments in many instances by forcing untrained and unqualified staff to do them "under the supervision" of qualified professionals who in most cases do not actually supervise the assessments or train the staff who do them. The formal assessment instruments are poorly designed and ill-suited to truly assessing a person's ability to function in community settings. This process meets technical regulatory requirements but by no means provides accurate or useful results. If DOH takes the same approach to assessing adult home residents, the time and money spent will largely be wasted.

Advocates also continued to point out that group homes are not satisfactory substitutes for true community integration and that people can be supported more effectively and with better quality of life in their own homes for less money than it costs to build and staff group homes.

Still No New IDEAs

As predicted, the controversy-plagued reauthorization process for the federal Individuals with Disabilities Education Act (IDEA) did not get very far before the end of the Congressional term. Several organizations weighed in with comments and recommendations, and a bill was proposed in the House of Representatives, which, as of this writing, is sitting in the Education Reform Subcommittee.

The bill, the "IDEA Paperwork Reduction Act of 2002", was introduced by three Republicans with no Democratic support. It focuses almost exclusively on modifying the IEP (Individual Education Plan) process without addressing most of the other issues in the IDEA debate. This lack of bipartisan support and narrow focus suggest that the bill is simply a bit of political grandstanding and not a serious contender for final passage. However, we'll summarize it briefly:

The bill requires the federal Education Department to create simplified "model documents for individualized education programs (IEPs), procedural safeguard notices, and prior written notice reporting requirements," and mandates that the Department provide training and technical assistance on how to use them. It does not specify any further details, and some advocates fear that the results will be too simple.

The bill would let parents opt for a 3-year IEP instead of a 1-year IEP, with the goals "coinciding with natural transition points for the child" as the child moves through pre-, primary, middle, high, and post-school phases. If the child is "making sufficient progress", the IEP team can do a "streamlined" annual review, and need only do a "comprehensive annual review and revision" every three years. Parents could request additional meetings if the child stopped showing progress. Certainly there are a lot of potential pitfalls in opting for this streamlined process, but the bill is very clear that it can only be substituted for the current one-year IEP with the "informed written consent of the parents".

In addition to this new concept, the bill contains several amendments to the existing IDEA, some--but not all--of which are much more troubling.

One amendment lets school districts excuse any member of the IEP team from attending IEP meetings and allows them to provide input prior to the meeting instead. If a parent doesn't want a particular member to skip a meeting, s/he can request that they attend. Also, school districts can let team members attend meetings via video or teleconferencing. Parents and school districts can agree to waive an IEP meeting and simply develop written amendments to the IEP document. Given STIC's experiences of IEP meetings as "group intimidation" sessions wherein several school district employees gang up to oppose the wishes of a lone parent and, perhaps, his/her chosen advocate, we think this could be an improvement for many families.

Limiting participation in IEP development is a very different thing from limiting attendance at face-to-face meetings, however, and it is not a good idea at all. Other amendments state that a general education teacher need only participate in IEP development if the child spends the majority of his/her school time in general education, and that if the child has more than one general education teacher, only one of them must participate. Since the focus of education for every child with a disability should be his/her participation--with appropriate supports as needed--in general education, and since it is usually the general education teachers who must be forced to face and respond appropriately to the needs of students with disabilities, this is not acceptable. The bill would also amend IDEA to let any teacher skip an IEP meeting if it is scheduled during normal class time. We feel it is important that IEP meetings continue to be scheduled at the convenience of the parents, who have a much harder time rearranging their schedules than school employees do. Another amendment further limits the scope of participation in IEP development by making it much more difficult for parents to introduce information and evaluations from non-school employees into the IEP--also unacceptable.

The bill implements the President's Commission's recommendation that up to ten states be allowed to experiment with "paperwork reduction" proposals for their statewide IDEA monitoring and enforcement systems. The details on how this is to be done are so scant that it amounts to letting the Department of Education write its own rules from scratch without legislative oversight--never a good idea for any agency at any level of government--so even though we at STIC think this may be a good idea in principle, we can't support this bill's language on it.

Very little that is new emerged from the various reports and recommendations that were issued over the last few months. One good idea, however, came out of the National Council on Disability (NCD), a quasi-government policy-development group whose members, despite the fact that they are appointed by Presidents, are usually pretty well-informed and thoughtful--if fairly powerless--disability advocates. NCD called for the federal Justice Department (DOJ) to have independent funding and power to investigate and take enforcement action in IDEA complaints. Prior to 1997, IDEA only permitted the Department of Education to do this, and NCD rightly pointed out that the ED can't be expected to be forthright in suing and punishing state and local education agencies with whom it also needs to have one of those "pleasant working relationships" that are so important in human services. The 1997 IDEA amendments allowed DOJ to get involved if ED referred cases to them but, not surprisingly, no such referrals have been made. So we applaud the NCD recommendation wholeheartedly.

Nearly everybody, including NCD, continued to resist the idea that IDEA funds should be used for such alleged "general education" purposes as early intervention, assessment, and prevention services that could, by identifying kids with reading or family-based emotional problems and rushing supports to them, greatly reduce the number of children "classified" as having disabilities. We think it's arbitrary for advocates to say that such activities are not truly "special education". In fact, it is an effort to direct resources to children with temporary disabilities in order to keep them from becoming permanent, and its principal side effect will be to ensure that the lion's share of special education funds will be spent on kids who really do have disabilities instead of, as is the case today, on kids who just haven't been taught to read, who have a history of annoying general education teachers, and/or who aren't the same color as those teachers.

The main reason this situation has been allowed to get so out of hand is that the present system rewards schools with more money for every child they "classify". The only truly dependable result of such a system is that schools will--and do--"classify" as many kids as they can get away with, without regard for real need. Any significant IDEA reforms must address this issue by removing this financial incentive. We still don't see any of the "stand-pat" advocates coming up with any reasonable alternatives here.

None of the latest sets of comments and recommendations provides any evidence that large numbers of parents of students with disabilities want "school choice" (vouchers). What parents overwhelmingly want is for the schools their children are in now to do things right.

This supports our previously-stated contention that the push for special education vouchers is really primarily about the desire in some quarters to cut education spending by eliminating the need to fix what is wrong in every school, and secondarily about resistance in some quarters to the notion that all US schoolchildren should learn the same basic scientifically/historically/academically verifiable facts and concepts, without censorship or distortion imposed by political or religious beliefs.

STIC holds no brief for public schools or their employees. But we believe that our elected and appointed representatives at all levels of government, who are paid with our money, are responsible for the performance of the education system that our money funds. They have no business trying to foist that responsibility onto taxpayers by making them bear the burden of searching and researching and picking and choosing to find a decent school for their children-and inevitably, in many communities, failing to find any. All the schools should be decent, and our representatives should stop pushing vouchers and get busy making them so.


Adam Revisited

As we reported in last issue's "Unsafe at Any Size", Adam's group home placement not only wasn't meeting his needs, it was threatening his health, and he would not be able to stay there much longer. Since then, Adam has moved into his own apartment. He has live-in paid staff who can respond almost instantly to his needs. This allows him to be truly and spontaneously self-directing, and confident that whatever plans he makes for the day, they can be carried through.

The staff are also knowledgeable about his temporary health problem and are able to provide the appropriate support to speed up his recovery.

Adam has a big colorful schedule board on the wall of his kitchen where he keeps track of activity plans and appointments, and another schedule board where he can check-off his chores when they're done. These boards--which the group home staff couldn't be bothered to help with--enable Adam to manage his own time and make sure he gets things done himself.

Adam lives near downtown and regularly goes to the library, stores, and the park. He plans his own meals and shops at the stores he likes--not the ones the group home staff made him go to. He is becoming more involved with his church and church members are helping him participate in their activities.

Adam has quit working at the sheltered workshop and is pursuing a real job through supported employment.

Today Adam can make his own choices and have those choices respected. The result is that he is much more relaxed, much happier, and much more interested in self-improvement. As his brother says, "Adam feels very alive" these days.

Snow Removal

by Jen Ayala

The first snow fall always brings a refreshing excitement that lightens our hearts and the landscape into a winter wonderland. [Speak for yourself! -- Editor] Although winter brings a renewed beauty, it also brings difficulty for all pedestrians--especially for parents pushing strollers, people with physical limitations or even holiday shoppers with their arms loaded with packages. At a meeting for System Advocates for Independent Living (SAIL), members discussed negative experiences due to lack of snow removal in some areas of the Southern Tier. Consequently, SAIL wanted to determine who is responsible for snow removal on sidewalks and curb cuts and what must be done to avoid access problems this winter.

According to the public works and highway departments in Binghamton, Vestal, Johnson City and Endicott, local governments are not responsible for curb cuts or sidewalks that are privately owned (i.e. resident, business). The town, village or city is only responsible for curb cuts and walkways that are on publicly owned property such as schools or parks. Each locality may have different regulations and residents can ask about snow removal policies at their public works department.

Most people have experienced the frustration of finishing shoveling their driveways or curb cuts, only to see the snowplow coming back through a short time later. However, it would be unreasonable to expect public snowplows to stop and shovel out every curb cut (or driveway) as they plowed the roadways. Think how long it takes the garbage truck to make it through its route with all those stops! Residents would surely balk at the increased taxes that it would take to cover such a service. Residents and businesses must be responsible for snow removal on curb cuts and sidewalks on their property.

Unfortunately, not all property owners choose or are able to keep their sidewalks and curb cuts clear of snow. If you are aware of a neighbor who cannot clear his/her sidewalk and/or curb cut without help, you could offer to help in some way. If you cannot personally help someone with their snow removal, why not see if someone else from our community can lend a hand (a neighborhood youth, church or club member, etc.)?

Pedestrians are encouraged to report any unclear curb cuts or sidewalks to their code enforcement officers. You can find the phone number in the phone book under your village, town or city's government listing. Snow removal and access for all pedestrians are a community issue and should be addressed as such.

Residents, businesses and local governments have to take shared responsibility for snow removal so all community members can safely say... "Let It Snow!" ...even if the weather outside is frightful!


How to Request an Interpreter

by Stacy Seachrist

This is just a helpful reminder about how to request an interpreter. If you have an appointment, you can request an interpreter by calling the office where you have the appointment and telling them that you need an interpreter. Some offices may not have any idea that you are Deaf until you tell them. Then you can give them the STIC Interpreter Services phone number: 724-2111 ext. 338. The place of service will probably call us and schedule an interpreter. It is best to give as much advance notice as possible. Two or more weeks notice is best. If you have an urgent legal or medical emergency after business hours you can call the Interpreter Services pager at 774-4780.

If you arrive at an appointment and no interpreter has been called then it may be best for you to re-schedule the appointment for another time when one can be available. Understanding what is happening and having clear communication is really important. If a hearing person wants to write back and forth, that is fine if you are comfortable with that. However, if you are not comfortable with that, you have the right to ask for an interpreter and reschedule your appointment.

Stand up for yourself if you want or need an interpreter. You have the right to equal access through communication and you are the best advocate for yourself.

Linda Land

by Linda Greeno

STIC has new books in the Deaf Waiting Room.
Come take a look and borrow them!

  • Forbidden Signs; American Culture And the Campaign against Sign Language
  • Cultural and Language Diversity and the Deaf Experience
  • Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard
  • Mother Father Deaf: Living between Sound and Silence
  • Train Go Sorry: Inside a Deaf World
  • Keys to Raising a Deaf Child Deafened People: Adjustment and Support
  • I See a Voice; Deafness: Language, and the Senses
  • Dancing with Words: Signing for Hearing Children's Literacy
  • A Journey into the Deaf-World
  • A Place of Their Own: Creating the Deaf Community in America
  • Lead Me an Ear; The Temperament, Selection and Training of the Hearing Ear Dog
  • Seeing Language in Sign: The Work of William C. Stokoe
  • Deaf Empowerment: Emergence, Struggle, and Rhetoric
  • Sign Language Interpreting: Deconstructing the Myth of Neutrality
  • Legal Rights: The Guide for Deaf and Hard of Hearing People
  • IDEA Advocacy for Children Who Are Deaf or Hard of Hearing
  • The Feel of Silence
  • Missed Connections: Hard of Hearing in a Hearing World
  • Reading between the Signs: Intercultural Communication for Sign Language Interpreters
  • Signs in Success: Profiles of Deaf Americans
  • Living Legends II: Six Stories about Incredible Deaf People
  • Deaf like Me
  • Living with Hearing Loss
  • Learn to Sign the Fun Ways
  • Sign With Your Baby
  • Signing Family

And many more books and videos too!

STIC also has a few pieces of equipment
available for short term loan with a refundable deposit:

TTYs Closed caption decoder
Alarm clock
Phone volume control



We know many Deaf people are having problems with VESID interpreters. STIC does not have a contract with VESID for interpreter services. VESID WILL NOT PAY STIC for interpreters.

If you have a problem with VESID interpreters CONTACT



Client Assistance Program (CAP)
(315) 797-4642


Winter 2002-03
Issue No. 69