AccessAbility

The first annual Hometown Holiday Light Festival, organized by STIC and the Ross Park Zoo, was quite a success. It was our first year, we got a late start, and September 11 altered the priorities of many large donors, but despite it all, the event was well-attended and generated good income. Some 4,400 vehicles went through the park, carrying an estimated 20,000 visitors. STIC and the Zoo each received about $11,800 in net proceeds. This year's Festival will be even larger and more entertaining. We hope to see you there.

STIC's annual Board elections were held in December. Congratulations to our new Directors and officers. Thanks to those departing for their service.

Marybeth Gamba - President
*Ediemarie Lind - Vice-President
Beverly Rainforth - Secretary
Ann Marie Reynolds - Treasurer
*Dan Duncan
*Mike Elston
*Linda Giese
*Mary Haggerty
Elsie Logan
*Milrene Smith
*Barbara Starchok

*Denotes a person with a disability

by Joy EarthDancer

In light of events on September 11, we at STIC have been reviewing the procedures we would follow if a local emergency or natural disaster should occur.

STIC participates in the Broome County Emergency/Disaster Plan, which will be activated in response to any local or national emergency or disaster affecting our area. Beginning with Broome County Emergency Services, an established line of communication will speed information to each agency. The agency has its own plan with communication lines to consumers who need to receive services during natural disasters or emergencies.

This brings us to you. STIC's responsibility is to determine who, among all the people we serve, will need services during an emergency or natural disaster. Here are the criteria:

• You require regular medication or treatments that you cannot give to yourself
• You have a limited supply of medicine that you take regularly
• You require daily personal care
• You know of no one who would regularly check on your well-being

If any of these apply to you, please call Joy EarthDancer at 724-2111 (voice/TTY), or email her at cdpa@stic-cil.org, if you want to be included in the Broome County emergency response system. Please call soon. Although I hope this safeguard is one we will never use, we do need to be prepared. I look forward to hearing from you.

by Jennifer Ayala

Every citizen is or will be affected by disability issues through personal experience, family members or friends. It is our mission to educate elected officials and our fellow citizens about issues that affect people with disabilities and to advocate for changes that will improve independent living. Everyone has abilities that are valuable to advocacy. Teamwork is the key to success. Here are some ways you can help SAIL:

• Making signs
• Writing letters
• Sending emails
• Making phone calls
• Going to rallies
• Participating in direct action

SAIL Meetings will:

• Help members become effective advocates
• Provide an opportunity to share experiences and suggestions

Come Be the Wind in Our SAIL!

Workshops Guest Speakers
Movie Night Pot-Luck Dinners
Independence Celebrations
And whatever else might come along!

OUR COMMUNITY

We've identified some advocacy issues that affect people with disabilities locally. Please mark the issue(s) that interest you as an advocate and return ASAP. Thanks again!
___ Snow Removal
___ Handicapped Parking
___ Personal Care
___ Transportation
___ Education
___ Other _____________________________________

If you'd like to come see what we are all about,
please fill out this form and send it to:

SAIL, c/o STIC
24 Prospect Ave, Binghamton, NY 13901 Name __________________________________________________
Address ________________________________________________
City _____________________________ State _____ Zip _________
Phone _________________________________________________

724-2111 (voice/TTY)
advocate@stic-cil.org

Parents Empowering Parents (PEP)

Meets: Two Wednesday evenings per month
6:00 pm
At: PAL Center, 45 Lewis St., Binghamton
Contact: Jo Anne Novicky (STIC) 724-2111, sc@stic-cil.org
Anne Rutledge (HRBC) 729-1295 , Anne.Rutledge@omr.state.ny.us
Lila Acker (parent) 775-4914, KACKER1@stny.rr.com
For: Parents, family of kids with disabilities
Notes: A light dinner is always provided; the PAL Center has a play area for children

Traumatic Brain Injury (TBI) Support Group

Meets: Every third Wednesday 11:00 am - 12:00 noon At: STIC Contact: Nadine Olshefski 724-2111, sc@stic-cil.org For: TBI survivors, families, and friends

by Darlene Dickinson

Augmentative/alternative communication encompasses a wide range of both technology and techniques that make it possible for people with speech-related disabilities to communicate fluently and effectively. It can be used as a temporary support to promote verbal development, or as a permanent means of communication. Without augmentative/alternative communication, children with speech limitations cannot interact easily with their peers and often lag far behind in school.

As you know from previous articles, the Wingspan Assistive Technology Center held its grand opening at STIC on November 27, 2001. Wingspan was created to address the needs of individuals with communication disabilities in the Southern Tier region. Our purpose is to provide augmentative/alternative communication assessments and follow-up services that best meet each person's needs.

School districts with students who could benefit from augmentative/alternative communication assessments can contract directly with STIC for Wingspan services. Because we are located in the Southern Tier, we can also provide follow-up services as needed. For information about Wingspan services and rates:

Contact: Angela Bevers
(607) 724-2111 (voice/TTY)
traid@stic-cil.org
(put "Wingspan" in the subject line)

New Yorkers with disabilities are growing more organized and militant in response to the state's ongoing refusal to stop promoting segregated programs and begin an orderly transition to freedom for people with all disabilities of all ages.

The historic events of February 2002 began with a press conference on the 5th. in Albany, held by senior citizen and disability organizations. Together they urged the state to develop a comprehensive, effectively working plan to transition people with all disabilities of all ages out of segregated programs. Such a plan is often called an "Olmstead plan", after the Supreme Court decision that decreed that states that unnecessarily segregate people with disabilities are violating the ADA. New York's plan should include a new Medicaid waiver to provide community-based supports to people with physical disabilities; systematic outreach to people in nursing homes, group homes, and other institutions to inform them of their right to live in the community; goals and timetables for transitioning people out of segregated facilities; and more.

At the press conference Bruce Darling, Executive Director of the Center for Disability Rights in Rochester, took some dollar bills from his left pants pocket, held them up, and said, "We're not asking for more money. All we want is for New York State to take the money out of one pocket--nursing homes and other institutions." Here Darling moved the bills to his right hand and put them into his right pocket, then continued, "and put it in the other pocket--integrated community services." He added that there are more than 130,000 New Yorkers in nursing homes, and tens of thousands more in other large and small segregated settings. National ADAPT leader Bob Kafka told the crowd that the main reason for "institutional bias" in Medicaid-funded services is campaign contributions from nursing home operators and public employee unions. A middle-aged woman in a wheelchair told how she was sent to a Rochester nursing home because she couldn't get adequate in-home supports, and was drugged to keep her quiet when she complained. Then a senior activist spoke eloquently of how her generation, which survived the Depression and won World War II, was being confined and forgotten in nursing homes instead of sharing their valuable experience with younger people. As a finale, Assemblyman Kevin Cahill announced he will introduce a bill to require the state's disability agencies to develop an Olmstead plan.

The need for such a law is clear. A working group of disability activists had been meeting with state Department of Health (DOH) officials responsible for Medicaid-funded disability services for over a year to get a plan started. As Darling reported, ". we had made virtually no progress. The transition project we asked for was not being pursued. They could not confirm whether they had drafted the Medicaid waiver we wanted. No official planning process had begun. Nothing had changed. We gave [DOH] a letter demanding that they give us a written response to our issues by February 5. We got no response..." Indeed, state officials had been telling activists, the media, and each other that New York was a "leader" in community-based services and there was no need for any such measures.

So on Wednesday, February 6, about 200 protesters, many of them Independent Living advocates and consumers in town for some training, paraded through the Capitol Concourse and blocked elevators and escalators in DOH's Corning Tower to demonstrate why such measures are needed. The protesters, organized by Rochester ADAPT and led by Darling, chanted, "Our homes, not nursing homes!" and demanded a meeting with DOH Commissioner Novello. When she refused, they asked for the Governor's aide for health issues, David Wolner. Eventually, Wolner agreed to meet with Darling and a few others. ADAPT had been double-crossed by DOH before; at a protest last year, an official agreed to a meeting, the protesters dispersed, and then the official disappeared. So this time, Darling agreed to send a "runner" to tell the crowd to go home once the meeting started. Then the small group went to a meeting room to wait for Wolner. After 45 minutes of waiting, they returned to the Corning Tower. Since Wolner wouldn't come to them, the protesters went to him. Carrying signs and chanting, the crowd of 200 marched down the Concourse to the Capitol. Four people made it up to the Governor's floor before the State Police shut the elevators down. Four more walked, crawled, or were carried up the stairs, where they staged a sit-in. The crowd in the Concourse held a vigil, NYS Independent Living Council (NYSILC) Executive Director Brad Williams organized a press conference, and the group of eight occupied the Governor's waiting area, until 11:30 pm, refusing all demands to leave. At 11:30, still without the promised meeting, the eight people on the second floor, including Darling, were arrested and removed.

Two days later, on February 8, Governor Pataki appeared at a senior center in Rochester to get some election-year publicity. Darling and about 25 others with disabilities got wind of the event. When the Governor began to speak, Darling stood up and challenged him. He said he'd been arrested in Albany two days before because the Governor's aide wouldn't meet with him. "I can see why," Pataki quipped. There followed a debate: Pataki tried to defend his administration by saying it was spending $5 billion a year for community-based supports. Darling responded, "It's not about money! We aren't asking for more money!" He explained that people with disabilities want the money moved from segregated programs to integrated ones, and repeated their demands for a new Medicaid waiver and a definite plan to transition people out of nursing homes. Pataki finally agreed to a meeting, and an aide approached Darling to reassure him that the meeting would happen because Pataki announced it publicly. So the protesters left.

Once again, however, as soon as the pressure was off, the meeting promise disappeared. So ADAPT and NYSILC decided to send the Governor a Valentine's Day present. People from all over the state were urged to fax or email Valentine's Day messages to the Governor's staff reminding them of the promised meeting. This action started on the afternoon of February 13, and on Valentine's Day morning, Wolner called Darling and scheduled the meeting, then asked him to "please stop the Valentines."

The meeting was held on February 27. Wolner told Darling that a federal planning grant would be used to hold regular meetings among a wider group of stakeholders, but would not commit to creating a formal Olmstead Planning Committee, nor would he commit to supporting a new Medicaid Waiver for people with disabilities.

Through all of this, the Governor and his spokespeople continued to defend the state's record on deinstitutionalization. They said the state's annual expenditure of $5 billion for community-based services implies that New York is a leader in integrated services. They also cited the recently-passed Health Care Act, which increased wages for some homecare workers and included a Medicaid Buy-In, as indicators that New York is doing a great deal to assist people with disabilities to live and work in the community.

Such claims are highly misleading. While NY spends $5 billion on "community-based" services, not all of them are truly integrated. It also spends at least $15 billion on institutional services. Virtually all of those services are unnecessarily expensive, because almost any person with a disability can live in their own home and participate in their community with the right supports, and those supports are almost always less expensive than an equivalent institutional setting. It does not appear that the Act's wage increases for homecare workers extend to those employed through the Consumer Directed Personal Assistance program (CDPA), which gives people with disabilities the freedom to hire and supervise their own attendants. And the Medicaid Buy-In, while a good thing, is not sufficiently generous to enable people with disabilities to build real careers or plan for retirement. In fact, it is less generous than buy-ins in other states and therefore does not demonstrate NY to be a "leader" in this field.

The events of February 2002 are an occasion for great pride. NY's disability community demonstrated its power and determination to force meaningful changes in policy and practice. If you would like to add your strength to this growing and unstoppable movement, contact Jennifer Ayala at (607) 724-2111 (voice/TTY), or advocate@stic-cil.org.

There were several interesting developments in the legal history of the ADA over the last few months:

Supremes Rule in Toyota v Williams

We described this case last issue: Williams got carpal tunnel syndrome while working in an automobile plant. Toyota gave her a different job that she was able to do, but later assigned new duties that she was unable to carry out due to her disability. What happened next is in dispute, but eventually Williams was fired. The legal arguments in her case hinged on whether Williams' limitations were broad enough to be a "substantial limitation in one or more major life activities" and so qualify her as a person with a disability under the ADA. The Supreme Court's ruling was a setback for Williams, but not the final word. The federal Appeals Court, incorrectly as we understand the law, found that Williams' inability to perform a "class" of jobs that involved substantial lifting or bending of her arms was enough to meet the definition, and ruled in her favor. The Supremes, correctly as we see it, said that doing a "class" of jobs is not a "major life activity". They overturned the Appeals Court's decision, but ordered that court to reconsider whether Williams' disability actually does affect major life activities. Conceivably, it may; if she also can't do important self-care or child-care tasks, for example, she would be covered.

Disability activists had different takes on this case. Some saw it as an injustice that Williams was fired after having first received a reasonable accommodation and then having had it taken away from her. Others, including us, focused on the fact that this was a bad "test" case and should never have been brought to the Court. Steny Hoyer, a Democratic Congressman who was deeply involved in getting the ADA through the House, probably had the best response. He said the Supreme Court has been continuously misinterpreting the "intent of Congress" in ADA cases. In his view, Congress intended that the ADA definition of disability should be broadly interpreted, and he pointed out that the ADA also contained provisions protecting people who do not have disabilities at all but experience discrimination merely because an employer thinks they do, provisions that the Supreme Court has all but struck down. For these reasons, he said, Congress should rewrite the law to clarify what was intended. The NY Times, not usually an enthusiastic ADA supporter, printed an editorial that said essentially the same thing. However, we've heard no news suggesting that anyone else in Congress is taking this idea seriously.

Does Title II Apply to Local Government?

Here's one that will probably turn out okay. In Gorman v Beasley, Gorman was a wheelchair-user who was injured by the Kansas City, MO police while being arrested because the police didn't use proper equipment to transport him. The city was ordered to pay punitive damages of $1.2 million to Gorman. Even the Supremes' Garrett decision says explicitly that Title II definitely applies to local governments, because, unlike state governments, the Constitution does not provide immunity from lawsuits to them.

No Waffling on EEOC

In EEOC v Waffle House, Inc., the Supreme Court found that a labor agreement that requires employees to submit grievances to arbitration does not prevent the federal Equal Employment Opportunity Commission (EEOC) from taking separate action to enforce the ADA, including seeking compensatory damages, on behalf of such an employee. This is a positive development.

DOJ $%@&*@s the Pooch

Despite President Bush's rhetoric on disability rights, his Department of Justice (DOJ) has taken an action that may limit the right of people with disabilities to use service dogs in public places. The ADA prohibits public accommodations from denying access to service dogs in all but a very few situations. DOJ regulations implementing the ADA, and "guidance" for those regulations, have always said that operators of public accommodations can ask people accompanied by dogs if they have a disability and if the dog is a service animal. Recently, however, DOJ changed its "guidance". The Department's publication, ADA Business BRIEF, now states, "Businesses may ask if an animal is a service animal or ask what tasks the animal has been trained to perform.", and goes on to say that the operator may use the answers to decide whether or not to let the animal in.

This seems like a small change. It is legitimate, after all, to keep people from bringing ordinary pets into a business.

However, there are two big problems here. First, one's disability may be confidential. People with seizure disorders, for example, may use dogs who provide assistance during seizures. There is a long history of misunderstandings and prejudice surrounding seizures. Many people with this disability have found that the only way they can get fair treatment is to keep the nature of their disability secret. Having to explain exactly what the dog does may reveal the secret and result in discrimination. The second problem is that this new language may give operators the idea that they can decide whether a person with a disability will really "need" the dog in their facility. For example, someone who uses a service dog to pull a wheelchair may be told, "We don't want the dog in here, but we'll find somebody to push you." The ADA says people can't be required to accept assistance they don't want in order to access a public accommodation. The only reason a facility operator can ask questions about dogs is to keep people from trying to pass off pets as service animals, not so they can decide whether a real service dog is needed by a person with a disability. Advocates say some operators already try this tactic, which is still illegal, and that DOJ's new "guidance" will confuse the issue.