Who Says You Can't Fight City Hall?

by Maria Dibble

About two years ago, disability advocates began a crusade to get a Medicaid Buy-In signed into law. After many protest rallies, press conferences, letter and phone campaigns, and closed-door meetings with legislators and the Governor's office, we now have one. Just six months ago, many said it wouldn't happen for years.

Last year the NYS Codes Council adopted a new building code that significantly reduced the number of new apartments that would be usable by people with disabilities. We were told "the Codes Council has never reversed or changed their position on an issue" and it was suggested that we accept things and move on. Well, we didn't. There ensued more of those phone-calling and letter-writing campaigns, protests at Codes Council meetings (with activists taking over one meeting) and a compromise was reached. The Council changed their position, amended the code, and advocates had won another battle.

Two major victories in three months: truly an amazing accomplishment! Those of us who worked so hard to achieve these things know how many months it took and how many times we had false hopes, moments of jubilation, and all too many deep let-downs. Were these complete and total victories, in the sense that we got everything we were advocating for? No. They seldom, if ever, are, but in both cases the end results achieved our primary objectives, and without the advocacy we'd have been in much worse shape.

An hour ago I was still agonizing over what to write for this issue's editorial. It was late--as usual--and I had no inspiration at all. I sat at my computer and began to think about everything on my two-page list of "things to do". My mind went on overload and then went blank for a second.

Then I realized, I've been so busy worrying about all the things yet to be done, the calls I haven't returned, the emails waiting for my attention, the reports that need to be written, etc., that I never took the time to celebrate our victories.

So I ask you to celebrate with me. Reflect on the successes we've had just in the last few months. Think about the impact that a Medicaid Buy-in will have on the lives of our neighbors with disabilities, and about the disaster we just averted by getting the original Code Council decision changed. Remember where we were twenty years ago and dream about where we can be in two decades.

We have come a very long way already. People with disabilities are taking back their lives, using their power and forcing public officials to see things our way.

If you have ever said or thought, "You can't fight city hall," think again. Not only can we fight, we can win!

Find the Facts!
Win $25.00!

When did Bruce meet with David?
The answer to this question is somewhere in this newsletter. All correct answers (as found in this newsletter), postmarked on or before AprilS 15, will be entered in a blind drawing. If your answer is drawn, you'll win $25! STIC staff, board members, and their immediate families or households are not eligible to win.

Send your answers to:

24 Prospect Avenue
Binghamton, NY 13901

Congrats to Our Previous Winner!
Mary VanDamme of Utica
March 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.


The Afterglow

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.

Board of Directors

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

Help STIC Be Prepared

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.

Sailing, Sailing...

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!


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:

24 Prospect Ave, Binghamton, NY 13901
Name __________________________________________________
Address ________________________________________________
City _____________________________ State _____ Zip _________
Phone _________________________________________________

724-2111 (voice/TTY)

STIC Support Groups

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

Wingspan Assistive Technology Center
Now Taking Referrals for Children 5 and Older!!!

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)
(put "Wingspan" in the subject line)


New York's Battle for Integration Escalates

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.

ADA Watch

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.

Building Code Compromise Reached

In December, disability advocates compromised with the Pataki Administration on the state building code, and declared victory.

New York's old building code, which will be replaced this summer, required that in newly-constructed buildings with four or more residential units and an elevator, 100% of units had to be "adaptable". If the building had no elevator, 100% of ground floor units, but not less than 25% of all units, had to be adaptable. "Adaptable" meant the units could be made fully accessible when needed without much effort. For example, an adaptable bathroom had enough space for a person using a wheelchair to get in, transfer laterally from the wheelchair to the toilet, and move around the rest of the room. The walls around the toilet and bath/shower would contain blocking to which grab bars could be attached. Other adaptability features included a level entrance, wide doorways, and enough space in all rooms and hallways for a person in a wheelchair to maneuver.

The Pataki Administration wanted to replace this with the International Building Code (IBC), which only applied to new buildings with 20 or more units. In such buildings, 2% of units had to be fully accessible, and the rest adaptable. However, the IBC standards for "adaptable" were much weaker than New York's old standards; they essentially only required wide doorways.

The compromise finally reached between advocates and Pataki's aides removes several important requirements from the New York State building code. However, some of those requirements also appear in the federal Fair Housing Act and will still apply. In summary, the new combined requirements are that:

"Adaptability" is required in all units in buildings that have 4 or more units and an elevator, and in all ground floor units in buildings with 4 or more units and no elevator.

"Adaptability" means bathrooms must have blocking for grab-bars in the walls; bathrooms and kitchens must have enough maneuvering room for a person in a wheelchair to move around and use major appliances and plumbing fixtures; light switches, outlets, thermostats and other environmental controls must be accessible; all doors must be wide enough for a person in a wheelchair to get through, and there must be an "accessible path through the unit"-a person using a wheelchair must be able to move through the apartment. Additionally, while neither the new NYS code nor the Fair Housing Act requires any fully-accessible units, under Section 504 of the Rehabilitation Act, in any buildings that have 5 or more units and are built with federal funds, at least 5% of units must be fully accessible.

The upshot is that no upstairs units in buildings without elevators will be accessible (important for people of small stature); storage areas, laundry rooms inside apartments, and some windows will not be usable; and even bedrooms, dining rooms and living rooms could be too small for a person using a wheelchair once the furniture is in-all things that were illegal under the old code. On the other hand, several advocates point out that these requirements were almost never enforced, so there are very few existing units that comply with them anyway. However, it may be no easier to get overburdened and understaffed federal agencies to enforce Fair Housing Act provisions than it was to get New York officials to enforce their own building code.

What is clear is that advocates pushed the Pataki Administration back and overturned two bad Codes Council decisions--the first that simply substituted the IBC for New York's code, and a second that substituted a "compromise" ordered by Pataki that raised the IBC full-accessibility requirement from 2% to 10% of covered units without changing its weak adaptability definition. Advocates can take pride in this, because they were told that such reversals had "never been done" and could not be done. And when all is said and done the result, arguably, may be little real change in residential accessibility for New Yorkers with disabilities.

Budget Fuss: Pataki Does it Again

As we've reported, Centers for Independent Living (CILs) like STIC had their state funding cut by $1 million for the current 01-02 fiscal year. Governor Pataki put this cut, which rescinded an increase that he and the Legislature had provided last year, in his budget proposal, where it became a bargaining chip for budget negotiations. However, those negotiations bogged down, and then our elected officials used September 11 as an excuse not to finish them. At various times during this process, all the principal leaders, and/or their representatives, expressed the belief that the cut was an "oversight" and would be restored. Even now, with only a month left in the fiscal year, the $100 million "pots" that the Assembly and Senate each got to divvy up among social service agencies have still not been fully distributed and are being touted by some leaders as a solution for the CILs. In light of all this, the state's office of Vocational and Educational Services for Individuals with Disabilities (VESID) graciously agreed to keep the CILs at level funding and put off the cut, if any, until next year. VESID can do this because CILs have a different fiscal year than the state; it's a cash flow thing.

However, STIC has learned from reliable sources within the Pataki Administration that Administration officials were outraged that, as a result of VESID's actions, CILs "did not experience the impact" of the cut or have to lay off any staff during our current fiscal year, and that we might instead need to do so this October, right before Pataki stands for re-election. VESID, an agency within the Education Department under the independent Board of Regents, has, to our knowledge, always had discretion to make such decisions.

So now it seems that this was no "oversight". The Pataki Administration specifically intended that CILs be cut--perhaps, advocates speculated, as retaliation for publicizing Pataki's failure to support the Medicaid Buy-In that failed Republican US Senate candidate Rick Lazio campaigned on in 2000, and/or for our role in the public embarrassment of the Administration over what it thought would be a little-noticed amendment to the state building code.

Meanwhile, the same $1 million cut is in Pataki's CIL budget for 2002-03, and we are hearing the same noises about how the cut will be "restored". Actually, this year there is an additional $200,000 "cut", for a total of $1.2 million, because the new CIL in Cortland, started last year with a one-year Legislative Member Item ("pork barrel") grant, must also be funded. Without an increase in CIL appropriations, that cost will come out of the other CILs' budgets.

The Mental Health Reinvestment Act, which is supposed to funnel savings from closure of mental health institutions into community-based services, is not funded at all in Pataki's proposed 02-03 budget.

The proposed OMRDD budget will continue NYS CARES in 2002-03 with 978 new "residential opportunities" and 190 new "day services" "slots". These items are only for people on the NYS CARES waitng list, and in most cases, it has already been decided that the "residential opportunities" will be group homes. Day services are a bit more flexible; with the spread of the "Day Habilitation without Walls" concept, you may have some hope of getting integrated services there. We urge people who believe they are on the waiting list to make sure they're still on it. One of the nasty effects of OMRDD's August 2001 eligibility "guidelines" may be that a lot of people who thought they were on the list will find that they are no longer considered eligible for OMRDD services. Pataki also plans to fund NYS CARES for the current fiscal year (it wasn't in the "baseline/bare bones" budget) with a "deficiency budget". We aren't sure what the "deficiency budget" is, but presumably what Pataki proposed for NYS CARES for this year (identical to what he wants next year) would also be funded.

OMRDD plans to continue the Self Determination pilot and, at last, implement the new Consolidated Supports & Services (CSS) waiver option to make Self Determination work more like it's supposed to. (The state Budget Division has approved CSS, so the next step is to issue a "rate". While this is progress, rate-setting can take as long as any other bureaucratic activity, so we won't predict when the service will actually be available.) We think this means that, even though no money is earmarked for new services outside NYS CARES and a few legally-mandated programs, if people submit acceptable Self Determination proposals, OMRDD is committed to funding them.

The proposal also provides cost-of-living increases for many HCBS Waiver services, though apparently not for Medicaid Service Coordination. This won't be good news for people who were pressured to accept that service in order to get OMRDD-funded extended supported employment, because they'll have a hard time finding anybody who is willing to provide the service to them.

And finally, Pataki claims to reduce institutionalization, but that may not be accurate. OMRDD will cut the number of people in "traditional developmental centers" by 164. But, they plan to put 60 people into a new institution for people with behavioral issues in Norwich, and another 40 into "special" institutions for people with "dual diagnoses" or other "needs". The total number of people who will be in institutions in 2002-03 is not clearly stated and may actually grow.

New York State's 37 Independent Living Centers
Disability Action Agenda 2002

In October 2001, over 150 advocates participated in a caucus in Albany to develop a comprehensive agenda for people with disabilities. The group prioritized the following issues as being vital to the independence and economic self-sufficiency of the 3.7 million New Yorkers with disabilities: Olmstead Implementation, Civil Rights/ADA, Housing, Voting Access, Transportation, and CIL Funding.
The Supreme Court's 1999 Olmstead decision found that the Americans with Disabilities Act (ADA) requires states to serve people with disabilities in the most integrated setting possible. New York State still has thousands of people with disabilities in institutions that are more restrictive than necessary to meet their needs. There is no acceptable rationale for keeping people in segregated settings. Public policy should support the fullest possible independence, inclusion, and participation. Overall, it will cut government spending because integrated community-based supports are, on average, less expensive than restrictive, segregated programs. It will also stimulate economic development because people who live in their own homes within the community are more likely to get jobs, pay taxes and contribute to the economy. President George W. Bush made Olmstead implementation a cornerstone of his "New Freedom Initiative" and signed a subsequent Executive Order last year. The following steps should be taken to transition individuals from an institutional setting and promote community-based services:

Sign an Executive Order or Pass Legislation to Support Olmstead Implementation. Require all state disability service agencies to develop coordinated plans and timetables to comply with the Americans with Disabilities Act (ADA) requirement that people with disabilities be served in the most integrated setting appropriate to their needs.

Implement a Medicaid Waiver Program. Nationwide, over 80% of our Medicaid dollars ($41 billion) spent on long term care is in an institutional setting, leaving only 20% ($10.5 billion) for all community services. The money should follow the individual, not the facility or provider. It should empower people to make real choices within the community and turn recipients into taxpayers. This waiver must include funding for housing, assistive technology, personal assistance and/or safety monitoring at home or in any work or community setting, and other services to facilitate transition into the most integrated setting and maintenance of community living, including but not limited to "startup costs" to set up a household. It should permit variable levels of consumer responsibility for arrangement and oversight of services based on consumer preference. Waiver services must have statewide uniformity. Development of the waiver must involve input from people with disabilities and advocates.

Identify People with Disabilities Who Can Transition into the Community. Ask each state disability service agency to establish a process whereby they can identify the number of people with disabilities in their systems that can transition into a more integrated setting.

Transition at Least 1% of the Target Population into a More-Integrated Setting. Demonstrate a commitment to the process by achieving reasonable and immediate progress.

Expand Consumer Directed Personal Assistance Program. Continue to encourage all counties to provide the program with a choice of providers. Regulations must be drafted and approved with the input of the disability community to stop program inconsistencies from county to county. This program allows the individual to have the freedom and choice to hire their own attendant. The State saves money because non-medical staff are trained and hired to do the work. In most instances, the attendants are paid at a higher wage scale, which can be spent within their communities.

Apply for Federal Real Choice Systems Change and Nursing Home Transition Grants. NYS DOH should reapply for the $40 million dollars available in Federal "real choice" and $15 million in "transition" grants. The proposal should include the involvement of people with disabilities and look to address any or all of the items listed above.
The US Supreme Court has been weakening aspects of the Americans with Disabilities Act (ADA) in favor of 11th. Amendment states rights. State employees no longer have the right to sue for monetary damages in Federal court as a result of the recent Alabama v Garrett US Supreme Court decision. This erosion was expanded in the Garcia decision from the Second Circuit Court. Action is needed to reinstate these rights for New Yorkers with disabilities.

Waive the State's Sovereign Immunity in ADA Cases. Pass legislation to restore the civil rights of State employees with disabilities by waiving the state's sovereign immunity in such cases. While disabled State employees can still sue for injunctive relief in Federal Court (i.e., get their job back or obtain a reasonable accommodation), most individuals need to retain an attorney on a contingency basis. They will be hard-pressed to find representation without this correction.

In order to ensure integration, people with disabilities need public accommodations and government programs to be accessible. While progress has been made over the past ten years, there is a greater commitment needed by our State so that New Yorkers with disabilities have the opportunity to achieve equal opportunity in all aspects of society.

Pass Legislation Requiring that Public Accommodations be Accessible. New York law only implies some specific ADA requirements in regards to public accommodations. A public accommodations law will help ensure continuity of regulations for business owners and make compliance easier.

Pass Legislation Requiring All State and Local Government Programs to be Accessible. New York State's Human Rights Law extends many of the same protections to people with disabilities as the ADA. However, some of the provisions are only implied. This causes needless confusion for state agencies and localities. Putting the ADA's requirements for government into state statute will strengthen the law and help to lessen confusion.
Less than 10% of all adults with disabilities are homeowners. Since many disabled individuals live below the poverty level, they often do not earn enough to qualify for a mortgage. The State needs to promote and expand existing opportunities to make the goal of home ownership more than just a "dream," but a reality for New Yorkers with disabilities.

Expand the SONYMA "Home of Your Own" Project. The Office of Mental Retardation and Developmental Disabilities (OMRDD) has demonstrated success with this program for people with developmental disabilities. It provides information on mortgage products and grants to help individuals with low to moderate income qualify for a low interest mortgage as a first time homebuyer. This program can provide help with down payment assistance, closing costs, and environmental modifications, which are vital to people with physical disabilities. The Home of Your Own program should be expanded to include New Yorkers with all different types of disabilities.

Promote HUD's Section 8 Homeownership Option for People with Disabilities. President Bush's "New Freedom Initiative" will encourage recipients of the US Department of Housing and Urban Development's (HUD's) Section 8 rental voucher program for people with disabilities to use up to a year's worth of vouchers to finance the down payment on a home. This benefit will be successfully leveraged to reduce dependency and develop "ownership" in the community, and help support local property taxes.

"In 2000, there was not a single housing market in the country where a person with a disability receiving SSI benefits could afford to rent a modest efficiency or one-bedroom unit."** In fact, on a national average, it required 98% of their SSI benefits to obtain such an apartment based on the Fair Market Rent.

Expand the Senior Citizen Rent Increase Exemption (SCRIE). People with disabilities in New York City have difficulty finding and maintaining affordable and accessible housing. The events of September 11 have exacerbated this situation. Disabled New York City residents need the same protection from rent increases that are now provided for low-income senior citizens under the SCRIE program due to the demand for space and increased cost. Likewise, people who have been relocated to a hotel or shelter as a result of the disaster will eventually need to find and afford an accessible apartment when emergency management transitions out of the area. The State does not need to increase its homeless population.

Provide Tax Credits to Encourage the Construction of Accessible Apartments. Offer developers a tax credit for the construction of accessible apartments per New York State's adoption of the International Building Code (IBC). This credit would extend to any fully accessible units beyond the requirement.

**Cited from "Priced Out in 2000: The Crisis Continues," by Ann O'Hara and Emily Miller.
On Election Day 1999, the Office of New York State Attorney General Eliot Spitzer teamed up with advocates to evaluate the accessibility of polling places statewide. The groups found difficulties in almost every county. A February 2000 Federal Court decision mandated that counties must ensure that polling sites are accessible. The events surrounding Election Day 2000 only proved to highlight the further need for election reform.

Amend New York State Election Law Section 4-104. Specify that counties are responsible for guaranteeing the accessibility of polling places and for providing basic accessibility guidelines to ensure consistency and encourage substantial compliance at polling sites and with voting machines.

Provide Matching Funds to Counties for Accessible Voting Machines. Provide a matching fund program for counties over a period of five years to assist them in making their voting machines accessible to all citizens. Funds would be provided to counties that can verify that the path, entry, and space inside every polling place is fully accessible.
The passage of the ADA helped to increase access to various modes of public transportation. However, the State still needs to promote and encourage alternatives that address gaps in service or coordination.

Encourage Innovative and Integrated Transportation Initiatives. Under the "New Freedom Initiative," the State should apply to the US Department of Transportation for both the Innovative and Competitive Matching Grant Programs. The first program looks to fund pilot programs that demonstrate innovative approaches to overcoming the transportation barriers still faced by Americans with disabilities. The second program offers a competitive match to better integrate Americans with disabilities into the workplace by promoting a network of alternative methods of transportation, such as the purchase and operation of specialty vans, ridesharing activities, community assessment planning, and the extension of existing transportation resources.
Centers for Independent Living (CILs) will require a $2.2 million increase in FY 2002-2003 to achieve level funding. In 2000, the NYS Legislature prioritized a $1 million increase for the statewide network of CILs. Governor Pataki supported the increase and mentioned it as one of the many achievements in his budget news release dated May 5, 2000. Unfortunately, the Governor did not include this increase in the Executive Budget recommendation for 2001 and 2002. Governor Pataki also signed legislation last session to establish the Cortland County center as the 36th. CIL without providing the base funding of $200,000 per year in his Executive Budget for 2001 and 2002. In addition, the NYS Education Department/VESID submitted a Department Request that included $500,000 for the previous FY to keep the statewide network of CILs current with the cost of living. Another $500,000 is required for the upcoming fiscal year.

Provide a $2.2 Million Dollar Increase to the CIL State Appropriation. Failure to provide the 2.2 million dollar increase will decrease each center's contract by $34,285 per year. Cost of living will further erode each center's purchasing power and service capacities by another $28,571. This will reduce each center's service capacity and ability to meet the needs of over 2,000 people with disabilities statewide each year by eliminating 52 center staff from across the State.

CIL services allow people with disabilities to actualize independent, integrated, and productive lives within the community. This results in significant cost savings to taxpayers. Real savings are obtained by avoiding services in more restrictive settings. Typical examples are described below.

  • An elderly man who uses a wheelchair was facing life in a nursing home. Instead, the CIL helped him to find an accessible apartment and provides ongoing peer counseling and advocacy services at a total annual cost of $268. He also receives an annual HUD rent subsidy of $2,712. Annual Savings: $47,916

  • A CIL advocated in court for a woman who was facing commitment to a state hospital. She was released and returned to living independently in her own apartment with ongoing peer support services, at a cost of $500. Annual Savings: $137,000

  • A CIL provided information and advocacy services to a family whose child was facing discharge from a Home and Community Based Waiver. Without waiver support, the child would be placed in an in-patient psychiatric unit. The parents successfully appealed the discharge. After Medicaid Waiver costs of $40,000, plus CIL costs of $1,000: Annual Savings: $96,500

  • Due to inefficiencies in local service systems and her own limited self-advocacy skills, a woman who left a nursing home was experiencing difficulties in obtaining suitable personal assistance and physical therapy services. She was in danger of being returned to the nursing home. CIL advocates provided ongoing advocacy and skills training, and helped her win a Fair Hearing and remain in her home with appropriate supports for a total cost to the CIL of $7,000. After homecare costs of $16,000: Annual Savings: $23,000

Election Reform

In New York State, advocates have expressed serious concern that a new voting machine being promoted by legislative leaders as the answer to the types of problems that were revealed by the 2000 presidential election is actually inaccessible to people with disabilities and more expensive than another, fully accessible machine that elected officials have so far ignored. This year's CIL Disability Action Agenda addresses the issue.

On the federal level, in late February attention was focused on Senate Bill S. 565, the Equal Protection of Voting Rights Act. It contained specific provisions requiring the federal government to develop uniform standards for voting procedures and technology, including accessible voting machines and polling places, before the 2004 election. Several amendments were proposed to strengthen the bill. One, however, would have exempted municipalities with fewer than 50,000 people from the requirement to buy accessible voting machines. It was hoped that this bill, if passed, would serve as the basis for a strong final joint House-Senate voting reform law.

Good IDEA Beats Bad IDEA

Some members of Congress have been trying to amend the Individuals with Disabilities Education Act (IDEA) for nearly a year (see our Summer and Fall 2001 issues). Despite a Congressional study showing no factual basis for doing so, right-wingers in both the House and Senate promoted amendments to gut IDEA's requirements that schools educate students whose disabilities involve behavior problems and that they follow due process when disciplining them. Last summer, US Education Secretary Rod Paige stepped into the fray, urging a Congressional conference committee to drop the amendments because the Administration preferred to conduct a thorough review of IDEA when the law comes up for reauthorization. We can now report that the amendments have been killed.

Congress also agreed to Paige's other request, which cited concerns about excessive placements of minority children in special education, that language requiring full federal funding of IDEA's mandates on school systems be dropped. This is puzzling because one important feature of President Bush's New Freedom Initiative on disability policy was that IDEA be fully funded.

In Memoriam: Sue Meineker

by Sim Goldman

On February 8, New York State lost one of our best, Sue Meineker, who died after post-surgery complications at Albany Medical Center. Sue was co-chair of the Americans Demanding Access Committee (ADAC), and was a superb advocate at the Troy CIL, and more recently, at the Albany CIL. Sue was a pleasure to work with, a joy to know, and led a life which exemplified independent living. She and her husband, Russ, really knew how to enjoy themselves and their circle of family and friends. Sue once told me that when she was born, doctors suggested to her mom that it would be more "humane" not to provide her with medical treatment and let nature take its course, due to her spina bifida. I think of Sue every time I hear someone pontificating about quality of life in the "right to die" debate, and am eternally grateful that Sue's mom had the courage and foresight to insure that her colleagues, friends, family, and the hundreds, if not thousands, who benefited from her advocacy, had the opportunity to know her. I will miss her very much.

Local Nursing Homes Cited, Fined

According to the Binghamton Press & Sun-Bulletin, 3 local nursing homes were cited by the state Department of Health (DOH) for serious violations in 2001; for two facilities, fines were levied or are under consideration.

Chenango Memorial Hospital's Residential Care Facility in Norwich was fined $4,000 for incidents in which five residents did not receive treatments that had been ordered for decubitus ulcers ("bed sores").

Bed sores were also the issue at Riverview Manor in Owego in April, where eight residents were "harmed". DOH officials said that fines were being considered in this case.

River Mede Health Care and Rehabilitation Center in Binghamton was cited for an incident in which the same resident fell five times in five days. DOH said the facility had not taken appropriate action to prevent the falls.

DOH spokesman Robert C. Kenny told the Press & Sun-Bulletin that the Norwich and Binghamton facilities are now in compliance.

Medicaid Goes on Sale!

At long last, disability advocates have achieved passage of Medicaid Buy-In legislation in New York State. The Health Care Act of 2002 provides a limited buy-in as follows:

People with disabilities who are employed and between the ages of 16 and 65 can participate. Those with incomes up to 250% of the federal poverty level, and "household resources" not exceeding $10,000, will be eligible for Medicaid and the personal care services, prescription drugs, equipment, supplies, and waiver services that it pays for. Currently 250% of the poverty level equates to an annual income of about $45,000 for an individual and $58,000 for a couple. "Household resources" are personal assets, not including a primary home and vehicle. In other words, the value of your house and car will not be counted against you in determining eligibility for the Buy-In.

People whose incomes are below 150% of poverty will not have to pay anything for their Medicaid coverage. Those with incomes between 150% and 250% of poverty will be required to pay annual premiums of 3% of net earned income and 7.5% of net unearned income. For an individual earning the eligibility limit, this would translate to a monthly premium of about $100.

People who are eligible for Medicaid because they get SSI can participate. People who are "medically improved" and thus not usually accorded Medicaid eligibility can also take part if they work at least 40 hours per month for at least minimum wage.

While this is a good start, it is not the full Work and Wellness Act that advocates wanted and people with disabilities need. There are no provisions to let people buy into Medicaid at a higher premium level if their incomes exceed the cutoff. In New York City, where the average cost of living and personal assistance services is much higher than upstate, it is unlikely that this plan will really let many people with disabilities accept jobs that pay an adequate wage. People with disabilities should not be penalized for having productive careers that provide real economic security simply due to their need for long-term medical services, but under this program, workers may not be able to save money for retirement or big-ticket purchases. The program will not take effect until April 1, 2003. Meanwhile, large numbers of New Yorkers with disabilities will either lose, or be unable to take, decent-paying jobs. Finally, due to the way in which the Health Care Act was financed, using one-time tobacco settlement and Blue Cross conversion funds, it is not entirely clear that the state will actually have the money to start the program next year.

The story of how this law was finally passed and signed revealed much about how our political leaders think. This is an election year. All of a sudden, in January, alleged deep, principled divisions between our elected officials that had prevented passage of the Buy-In and other bills all through 2001, suddenly vanished. Legislative leaders hustled behind closed doors with Pataki and put together a bill whose main purpose was to give wage increases to unionized medical workers, including personal care attendants, mostly in the state's largest cities. To his credit, Assembly Speaker Sheldon Silver insisted that a Buy-In, which was not in the original package, also be included, and dug in his heels on it. Pataki then agreed to include the Buy-In version from his 2001 budget proposal. At nearly the last minute, disability advocates were asked for input. They urged that the program allow people to remain eligible for Medicaid regardless of a nondisabled spouse's income or the amount of a person's dedicated retirement assets. Pataki refused to agree to this. Our people were also told that Pataki was demanding that there not be negative press coverage if the final package did not include everything that was in the original, much more generous, Work and Wellness Act. We believe that our representatives only said that credit for the achievement would be fairly assigned.

A fair assessment of Pataki's role is that he was dragged kicking and screaming into this after more than 2 years of being hounded publicly by advocates and the press about why he was refusing to support such an obviously good idea. Sheldon Silver is the hero in this story, unaccustomed though he may be to that role within the disability community.

OMRDD Eligibility Troubles?

Last August, OMRDD released "guidelines" for determining eligibility for OMRDD services that are causing problems for New Yorkers with developmental disabilities. OMRDD said at the time that they wanted to be sure all their offices were following the same rules to decide who has a "developmental disability". However, the Governor's OMRDD 2002-03 "budget briefing booklet", released in January, implies that this is intended to cut costs. Whatever the reason, STIC and other agencies have seen the following problems:

  • People who were presumed eligible by OMRDD offices or programs are being told they are not actually eligible.
  • Specific disabilities such as muscular dystrophy, epilepsy, and some forms of autism and severe learning disabilities, are being automatically excluded. Sometimes the legal requirement that functional as well as medical/diagnostic issues must be considered is ignored. In other cases medically inaccurate diagnostic definitions and criteria are used.
  • Provider agencies are being asked or required to get and pay for, or do, their own eligibility evaluations, including psychological evaluations, even though eligibility determination is OMRDD's responsibility.
  • Long delays of up to several months in receiving eligibility decisions.
  • Requests from consumers, service providers, and agency administrators for written eligibility appeals procedures are being ignored.

STIC advises agencies not to take responsibility for conducting or obtaining psychological or other evaluations, because this could make them financially liable for Medicaid expenses resulting from incorrect eligibility determinations.

STIC asks any consumer, family member, service provider, or provider agency in New York State who has had these, or similar, problems, to contact:

Maria Dibble
(607) 724-2111 (voice/TTY)

We are collecting data as a first step toward an appropriate resolution of this issue. Your information will be kept anonymous; only summaries will be provided to state or agency officials.

Promises, Promises

Following a 2-month delay due to the September 11 attacks, in December the Bush Administration finally released its report on the President's Executive Order to ensure swift implementation of the Supreme Court's Olmstead decision. The Olmstead decision says it is illegal discrimination under Title II of the ADA for state governments to serve people with disabilities in situations that are more segregated than absolutely necessary. New York has responded to the Olmstead decision by defending its record on deinstitutionalization and insisting that it doesn't need to make any changes.

The June 2001 Executive Order directed Health and Human Services (HHS) Secretary Tommy Thompson to coordinate a massive effort by every federal agency involved in disability policy to identify barriers to community living and suggest ways to remove them. It also ordered federal civil rights bureaus to "fully enforce" Title II. The report summarizing the agencies' findings is entitled Delivering on the Promise: Preliminary Report of Federal Agencies' Actions to Eliminate Barriers and Promote Community Integration. Each agency will issue its own, more detailed, reports and plans in the near future. The real action will be in those plans, so it probably doesn't pay to devote much attention to this report, but here's a brief description:

The report pretty accurately describes barriers in the areas of: health care structure and financing; housing; personal assistance; caregiver and family support; transportation; employment; education; access to technology; accountability and legal compliance; public awareness; income supports; gathering, assessment and use of data; and cross-agency collaboration and coordination.

However, most of the proposed solutions don't look that great. As we said last fall (see "Bush Speaks: The Olmstead Executive Order"), the Executive Order was hamstrung by requirements that all actions fit within the constraints of the Administration's budget proposals, and that enforcement efforts emphasize "cooperation", mediation, and technical assistance rather than a get-tough approach. So, Delivering on the Promise delivers that approach. There are no calls for new legislation, such as MiCASSA, that would make real changes in Medicaid, Medicare, or other disability-related programs. All the enforcement plans emphasize mediation or simply "encouraging" states to comply. The Departments of Justice, HHS, and Housing and Urban Development promise to devote "more resources" to enforcement, but it's hard to see how they can, because no funding increases are proposed beyond what is already in Bush's current budget. There are several ideas to make personal assistance services more flexible and available, but all are limited "pilot" projects to "further study" things that have already been demonstrated to death and are known to work. The transportation proposals are about having agencies operate more "special" vans, instead of pursuing integrated accessible transportation. The Social Security Administration's section is focused on promoting their "Ticket to Work" program and their new initiative to actually train their staff to correctly follow their own work incentive regulations. The employment section does contain a clear statement in support of the new voc rehab regulation that eliminates sheltered employment as a successful outcome.

ADAPT, the national disability rights organization, noted that the plan does not include any of their recommendations, such as creating a single cross-disability agency to control disability policy and resources; specific goals and timetables for each agency; reform of policies on "risk" to clarify that citizens with disabilities, not government agencies, are responsible for their own lives; and more. They staged some demonstrations shortly after the report came out, and we expect more of the same if the individual agency reports don't take a more serious approach.

Is the Bush Administration truly "delivering on the promise"? Well, the fine print reveals that they didn't really promise much to begin with. This is a real civil rights issue, and it will take a real civil rights movement, with all the messy variety, unpredictability, and occasional discomfort and danger that such a movement entails, to bring real change.

Research Backs Integration

The federal Research and Training Center on Community Living has compiled some interesting information about people with developmental disabilities in the United States. The picture painted by the Center's April 2001 MR/DD Data Brief does not surprise Independent Living advocates, though.

For example, 78.6% of adults with developmental disabilities have never lived anywhere but with their relatives. What does this mean? A variety of things: For one thing, people with all types of developmental disabilities are having trouble establishing their own households. Only 6.7% of them live with a spouse, and 73.3% have never been married. This might be why over 27% say they "would like to engage in more social activities than they are currently." On the other hand, this information strongly supports disability advocates' view that people with developmental disabilities do not need special residential facilities.

The Center's data also support our belief that those placed in such facilities are there not because they want to be there or because their families want them there, but because it's the only place where most state governments will provide the services they need. According to the Center, "The largest unmet need, reported by 10.1% of all adults with MR/DD (an estimated 151,390 people), was not a specific `type' of service or program, but rather assistance with instrumental activities of daily living (eg., shopping, cooking, managing money)." Of those who said they needed assistance, 35.8% tried to hire somebody to help them but couldn't, and 16.7% said they had help at one time but lost it for some reason.

Another indication that support is lacking for families that want to stay together is the fact that, "One in three children and adults under 25 years old with MR/DD live in households with a single parent (33%), a substantially greater proportion than [those] without MR/DD (22%). Amost all of the single parents were mothers." Time and again we at STIC have seen the combination of a child with a developmental disability and a lack of reliable and comprehensive in-home supports result in divorce and spousal abandonment.

Nothing short of a planned, phased, and complete redirection of all MR/DD resources toward integrated individualized options can solve these problems.


Leave Me Alone, Already

by Sue Ruff

I have heard the frequently cited complaint, "Why do they bother me with all this junk mail and credit card applications and phone calls at dinner?" Most people feel free to throw junk mail away in the recycling bag and hang up on the telemarketers. However, some people are lonely or excessively polite. Some people feel obligated to respond or are easily talked into getting things they don't really want or need. Some families want to help family members who are living alone not to become the victims of scams or become poorer. Some people are struggling with credit card debt, but order items with long and expensive payment plans attached.

Here are some phone numbers and an address to write to if you are interested in reducing some of the carnival-barker-like come-ons that swamp us:

Call 1-866-622-5569
to have your name placed on
the "Do Not Call" registry

There are some exceptions, but this will prevent most telemarketers from calling you at home.

Call 1-888-567-8688
to opt out of receiving
pre-screened credit card

Write to:

Direct Marketing Association (DMA)
Mail Preference Service
PO Box 9008
Farmingdale, NY 11735-9008

to have your name and address removed from the
junk mail lists

(We received this information from Sally Castle at the Office for Aging.)

Everyone likes to get cards and letters from loved ones and while email has been an easy way to stay in touch for those who have internet access, the real thing--a letter or card you can hold and read or laugh at--is a pleasure to receive. I look forward to a newsletter each month from a community in which I used to live. Attached to it I always find a little sticky note with a couple lines from the friend who sends this newsletter to me. She usually puts a tiny flower sticker in the corner of the sticky note and the messages, though short, are so pleasant and thoughtful, that I still feel connected to her and other old friends. If I had only junk mail all month (in addition to bills), I might want to order all kinds of things, too.



3rd Thursday of every month
5:30 get acquainted
6:00 meeting start


*peer support
*peer and community education and advocacy

Deaf Club

Social and Fun Only

American Legion Post 80
76 Main St., Binghamton

March 2
St. Patrick's Day
5:00 pm - 10:00 pm
April 13
Easter Dinner
5:00 pm - 10:00 pm

STIC 4th. floor
24 Prospect Ave., Binghamton

May 11
6:00 pm - 9:00 pm

TBA (someone's house)

June 8 2 pm to dusk

Linda Land

by Linda Greeno

Hi! I'm Linda Greeno and I'm your new Deaf Service/Peer Counselor at STIC. I will be working for 15 1/2 hours a week:

Tuesdays 9:00 am - 12:30 pm
Thursdays 9:00 am - 5:00 pm

I'm a part-time student attending Broome Community College. I'm very busy keeping up with work at STIC and homework/studying for BCC.

When you call STIC to leave a message, please always leave your phone number so we can call back faster. Don't assume we have your phone number or you won't hear from us! STIC also has a new secretary; her name is Ronda. It is her job to transfer your phone call to the right person. Please do not complain or tell her your life story. Ronda does not have time to chat or listen to you. For faster and easier service, leave me a message. Ask Ronda the secretary for Ext. 311 for Linda Greeno. You can also leave Interpreter Services messages for Carrie Watkins-Smith, Ext. 314 (TTY only) and 338 (voice only).

What is the most easy and fastest way to contact us?!? Email!

Linda Greeno
(Deaf Services)

Carrie Watkins-Smith
(Interpreter Services)

Email is available 24 hours 7 days a week. We check the mail when we arrive at the office. Thank you!


FOR SALE: `98 Chevy Cavalier with hand controls, automatic; about 50,000 miles. Asking $7,000. Ruth/Don Mueller; 797-8453.


Spring 2002
Issue No. 66