Rebuilding Responsibility

by Maria Dibble

You're a business owner. You have an employee who is late to work daily, repeatedly fails to meet deadlines and is causing your company to lose money by his actions. What do you do? You'd probably fire him and hire someone more competent and reliable.

You are a teacher and have a student who never turns in homework assignments, is caught smoking in the bathroom every few weeks and who fails the majority of tests she actually manages to show up for. What do you do? You'd most likely give her a failing grade on her report card, discipline her for her actions, or even hold her back a year.

You are a parent of a teenage son. He repeatedly ignores his curfew, takes the car without permission and is becoming disrespectful and unruly. What would you do? You might ground him for a significant length of time, take away his driving privileges or implement some other consequence to hopefully effect a positive change in his behavior.

If you were in any of these situations, you wouldn't let any of these people off the hook.

STIC has many state contracts with rules, regulations and agreed-upon duties to perform. We decide to go our own way and use the money for a different purpose, or no purpose at all. What would happen? Those contracts would be canceled, we'd have to pay money back, and we'd probably never get another contract with that agency.

Now, let's take this a step further! We have a Governor and state Legislators who can't agree on how much money they have to spend, refuse to negotiate to resolve their differences, repeatedly miss their April 1 budget deadline, and who this year didn't even pass a legitimate viable budget to address the needs and concerns of millions of New Yorkers. What do we do? We re-elect them! We reward them for their irresponsible behavior.

Do I sound angry and cynical? I hope so, because after this year's charade, which our public officials called a legislative session, I am absolutely livid. In years to come people will look back on this especially disgraceful legislative year and probably attribute it to the events of September 11. But let's not get caught up in that sticky web. The Governor and Legislature had already failed to meet their legal and ethical obligations to New Yorkers long before that horrible day. A "baseline budget" had already been adopted that indiscriminately slashed not-for-profits, schools, etc. Nearly all "new spending" was eliminated from the budget, not because there was no money, but because legislators could not be bothered to meet long enough to agree on how much they had to spend. What was the end result for people with disabilities?

We still do not have a Medicaid Buy-In (also known as the Work and Wellness Act). The Senate and Assembly agreed on a bill, but while the Assembly took action and passed it, the Senate only introduced it and then let it languish in committee for the duration.

The NYS Building Code has been in jeopardy for a while and may possibly leave people with disabilities with even fewer housing options than they have now. When this issue was brought to legislators, the Assembly immediately passed a bill to address our concerns, but the Senate had to be embarrassed into introducing legislation, which they then let die.

Tens of thousands of New Yorkers will continue to languish and die in institutions because the legislature once again failed to adopt a "Most Integrated Setting" bill or a Medicaid waiver to transition people into integrated community living. The Assembly passed a bill last year, but felt it needed significant improvement/revision, so they held public hearings this year to get input on what consumers wanted in such a bill. So many people registered to testify that they had to cut them off after seven hours of testimony. Meanwhile, the Senate has shown no interest in pursuing legislation.

The Assembly passed both the "Public Entities" and "Public Accommodations" bills this year, making portions of Titles II and III of the ADA part of NYS law, but despite the fact that the Supreme Court has consistently gnawed away at the ADA in recent decisions, the Senate saw no threat to people's rights and refused to introduce a version of its own.

And then of course, there is our Independent Living funding. The Governor proposed what amounted to a $1.2 million cut in our statewide funding, and the Legislature let this cut stand. It is only through the generous support of VESID that the centers are able to remain at level funding this year.

Truly, if our elected officials had done their jobs responsibly, all of these issues would have been resolved long before September 11.

Next year is an election year. Dare I hope that New Yorkers will finally hold their elected officials accountable for their actions, or lack thereof? Each vote cast is like a signature on an implied contract, obligating the official to perform critical job duties, like passing a functional budget. When officials choose to ignore these responsibilities, they are thumbing their noses at the voters and challenging us to do something about it.

In the end, we are the employers, we are the teachers, we are the parents. We must take action, create consequences and hold our government accountable. It's time to put these people back on the hook. The power is in our hands, not theirs. We simply must learn how to use it better! We plan to become even more active in the future. Will you join us?

Find the Facts!
Win $25.00!

What were the disabilities of Echazabal, Williams and Garcia?

The answer to this question is somewhere in this newsletter. All correct answers (as found in this newsletter), postmarked on or before January 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!
Damita Morrison of Binghamton

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 2001


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.


will be
for the
5 pm December 21, 2001
9 am January 2, 2002
Happy Holidays To All!

Come Be the Wind in our SAIL

by Jennifer Ayala

When people are unhappy with the system they must be willing to make some waves in order to change things for the better. Once we are aware of an issue, it is our responsibility to educate our legislators and fellow citizens about the need for systems change. Once people have a shared understanding and make their voices heard, systems change can happen.

SAIL (System Advocates for Independent Living) is a new group of people whom STIC will train to advocate for disability issues in many ways. Every member will be affected by a disability personally or through a family member or friend and can be an advocate in whatever way is comfortable. If you're interested in participating via e-mail, telephone or group meetings, please fill out the form below and return it to me as soon as possible.

Name_____________________________________________ Date________________________


City______________________________________ State _________ Zip ___________________

Phone Number (____) ______________________ E-Mail_______________________________

Additional Comments ___________________________________________________________



Return To:
Southern Tier Independence Center
SAIL - Jennifer Ayala
24 Prospect Avenue
Binghamton, NY 13901
Or E-Mail:

Hometown Holiday Light Festival

Sponsored By:
BSB Bank & Trust
Hoyt Foundation
NBT Bank

Sentry Alarms
Time Warner Cable
Wednesday - Sunday
6 pm - 10 pm
Through December 30
Otsiningo Park

$7.00 per car

Southern Tier
Independence Center
Ross Park Zoo

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

The Honor Roll

Another year has passed, once again filled with selfless, creative, and tireless acts by individuals and organizations that improved systems and services affecting the disability community, increased the integration and independence of individuals with disabilities, and/or helped STIC achieve its goals. We benefit from the assistance of many generous souls every year. Here we honor the cream of the crop, those whose achievements went so far beyond the call of duty or the bounds of ordinary expectations that they deserved special recognition. To them, and to everyone who helped make a difference over the last year, we offer our enthusiastic thanks.

Commitment to Community Service
AES Corporation
For purchasing state-of-the-art computers for our new Wingspan Technology Center.
BAE Systems Controls
For generous holiday donations to consumers and their families.
Matt & Anne Marie Reynolds
For helping out in several ways with the Wingspan Center, as well as encouraging AES employees to make donations to STIC that were matched by their employer.
Dr. & Mrs. James Vincens
For ongoing support of STIC and our final golf tournament.

Outstanding Business Support
Rex Maxey, Penn-York Medical Supplies
For generous support of our golf tournament and long-term support of STIC.
Dave Whalen, Time Warner Cable
For major sponsorship of the golf tournament.

Outstanding Consumer Achievement
Randy Collingwood
For starting his own office-cleaning business which he runs with the support of a job coach.

Outstanding Consumer Support
Richard Applegate, Social Security Admin.
Wins our B-Cubed (Best li'l Bureaucrat in the Business) Award for explaining complex services and benefits patiently, thoroughly and understandably, and for going the extra mile to help consumers.
Rhonda Bennett, RRDC
For greatly improving the consumer-responsiveness of the Binghamton Regional TBI (traumatic brain injury) Resource Center.
Sherry Evanek, Epilepsy Foundation
For excellent persistent advocacy for consumers, being exceptionally knowledgeable about issues surrounding epilepsy, and tirelessly promoting consumers' abilities to employers.
Dr. Jill Krilov, Psychiatrist
For looking beyond the diagnosis to the individual and being exceptionally compassionate, caring, and sensitive to disability issues.

Outstanding Employment Assistance
Cindy Casterlin, YWCA
For being a highly supportive, accommodating and flexible employer who is willing to reorganize job assignments to provide more hours of work to employees with disabilities.
Charles Shiffner, Service Master
For exceptional creativity and sensitivity in melding the needs of employees with those of his company.

Outstanding Foundation Support
Marilyn G. Rose & Stephen D. Ross University & Community Projects Fund
For providing significant funding to finally get our Wingspan Center off the ground.

Outstanding Legislative Support
NYS Senator James A. Seward
For strong support of the Medicaid Buy-in and responsiveness to people with disabilities and Centers for Independent Living.

Outstanding STIC Board Effort
Beverly Rainforth
For being instrumental in developing the Wingspan Center, a strong promoter of inclusion for children with disabilities, and an excellent resource for consumers, families and schools.

Outstanding Systems Advocacy
Harvey Rosenthal, NYS Association for Psychosocial Rehabilitation
For extremely effective coalition building and community organizing around the Medicaid Buy-In.

Outstanding Volunteer Support
Ken Austin
For tireless time and effort to get prizes donated for our golf tournament.

Last Chance for Tax Deductions

Many of you choose to make your annual donation to STIC around this time of year. Here's a friendly reminder to get those checks in the mail now!

We're pleased to announce that as of November 30, our 12th. Annual Campaign total had reached $5,182. But..our goal for this campaign is $5,500. We're just $318 short. Folks, this is very do-able! Let the days between now and January 1 be a time in which dollars fall upon STIC as numerous as the very snowflakes that tumble out of the winter sky! Let your name shine forth from these pages as do those of the donors below (who gave permission for us to let them shine)!

Bud Beam
Patricia Ann Charma
Ken & Maria Dibble

Local Artist Paints the Spirit of Wingspan

by Darlene Dickinson

In the last issue of AccessAbility we told you about STIC's exciting and innovative new project to address the needs of children with communication disabilities in our community. While the Wingspan Technology Center's main function is to provide assessments for children who could benefit from augmentative/alternative communication, this is not the sole purpose for its creation. Wingspan's mission is to give people with disabilities access to assistive technology and the knowledge they need to use it to further their independence, participate in all aspects of community life, and expand the limits of their dreams.

Local artist Danette Matteo was commissioned to paint a mural in Wingspan's newly renovated sitting room where children and adults alike can make themselves comfortable on the day of the assessment. The mural was commissioned to give form to Wingspan's mission. Ms. Matteo is a life-long resident of the Triple Cities and has worked as a professional artist for more than ten years. She received a bachelor's degree in fine arts from Binghamton University and is currently pursuing a Master's in art education at Syracuse University. Although primarily a painter, Danette also has interests in sculpture and print making. She has given instruction in drawing and painting at Broome Community College and BOCES Community Education. She has also been a visual teaching artist for the Southern Tier Arts in Education program. In 1999, Danette received a grant to support an exhibition of landscape oil paintings at the Plaza Gallery in Binghamton City Hall. She is currently represented by the Zenith Gallery in Washington, DC and has exhibited her work in Syracuse and Owego as well.

Matteo has created several very large paintings, two of which are on permanent display at Temple Concord in Binghamton and at St. Anthony of Padua Church in Endicott. The mural, however, is the first of its kind in her career. The scene she has created covers an entire wall in the sitting room, measuring approximately 22 feet wide by 9 feet high. She has entitled this piece "Wingspan" and it has a very special connection with the philosophy surrounding the center. Because her own learning disability was undiagnosed throughout her childhood, Danette had a great deal of difficulty in school. Her creative energy and ability to express herself by painting sustained her through the emotional turbulence that kids with learning disabilities often feel when struggling to achieve in an environment without accommodations or supports. In her words, "Making art was my salvation."

It was not until Danette began university studies that supports were put in place, allowing her to reach her full academic potential. She graduated from Binghamton University with highest honors. Danette describes the mural this way: "For me, `Wingspan' represents the magical transformation that occurs when accommodations for a disability encourage and allow people to live the lives they have imagined for themselves. Like the Pegasus' great wings, technological and other supports help us soar to great heights, each in our own way."


STIC extends our condolences to the family and friends of Dick Carrington. Dick was a founding Board member of STIC. His loss is deeply felt by all of us.


Air Travel in the Aftermath

When the Federal Aviation Administration first tightened airport and airplane security following the attacks, some travelers with disabilities experienced some pretty rude and ridiculous procedures. Others got for the first time the treatment they should have received all along, and were surprised or offended.

A blind electronics engineer got to the airport two hours before his flight but never got off the ground. While curbside baggage checking was stopped, air carriers were still required by law to offer personal assistance to travelers with disabilities. But nobody showed up to offer the usual help. Instead, security guards, apparently unaware of the difference between baggage and people with disabilities, ordered him to go inside the terminal. He refused, so they held him for questioning for five hours. A deaf man and his friend, both of Middle Eastern ancestry, were walking through an airport, signing to each other. Security guards took them to an interrogation room where they kept them for several hours, missing their flight. The guards had the bright idea that because these people were Middle Eastern, their sign language was some kind of terrorist code. Some blind people were forbidden to bring their canes onboard a plane because they could be used as weapons, and some with service animals were suspected of harboring vicious attack dogs. A blind traveler's "Braille `n' Speak" computer device was taken from him and not returned until he got off the plane. Hearing aids were inspected in case they were secret transmitters. People's power wheelchairs were dismantled and scrutinized. One man was bodily lifted out of his chair so guards could check under the seat cushion for weapons. Travelers who need oxygen and customarily have it delivered at the boarding gate found that the delivery people weren't allowed past the security checkpoints because they didn't have plane tickets. Insulin syringes were seized as weapons. Medicine bags were taken away as "excess carry-on luggage".

This is a new era. When people get scared and authorities crack down, ignorance, rudeness, nastiness and prejudice are increased and even encouraged. Lots of measures are taken simply to make people feel like something is being done, not because they will actually be effective. The only unforgivable sin becomes a lack of vigilant action. What's new and different is that people with disabilities are now experiencing this charming human trait like everybody else. For years people with disabilities have gotten through airport security checks and other checkpoints (such as concert turnstiles) without anybody even looking at them, let alone inspecting them, because the assumption was that people with disabilities don't commit crimes, carry weapons, or pose a security threat. And it apparently never occurred to anybody that a hearing aide could disguise a transmitter, that a big bulky electric wheelchair would be an ideal place to hide a bomb-or that even if all people with disabilities were saints, a nondisabled terrorist might be disguised as a person with a disability to evade security checks. Now security guards may be punished for making those assumptions, but at least initially, they faced no danger of punishment for being overeager, stupid, or rude.

Recently, however, the US Department of Transportation (DOT) has cleared the air-so to speak-on two points. First: Travelers with disabilities must realize that it is as legitimate to suspect them of bad intentions as it is to suspect nondisabled people and, that being the case, some of their equipment is worthy of suspicion and careful inspection, whatever that takes. Second, violations of civil rights and the Air Carrier Access Act are not acceptable.

Here is the DOT guidance:

"Steps Taken to Ensure New Security Requirements Preserve and
Respect the Civil Rights of People with Disabilities"

"The Air Carrier Access Act (ACAA) and the Department of Transportation's implementing rules prohibit discriminatory treatment of persons with disabilities in air transportation. Since the terrorist hijackings and tragic events of September 11, the FAA has issued directives to strengthen security measures at airline checkpoints and passenger screening locations ... This Fact Sheet provides information about the accessibility requirements in air travel in light of strengthened security measures by providing a few examples of the types of accommodations and services that must be provided to passengers with disabilities. The examples listed below are not all-inclusive and are simply meant to provide answers to frequently asked questions ...


  • Air carriers must provide meet and assist service (e.g., assistance to gate or aircraft) at drop-off points. The lack of curbside check-in... has not changed the requirement for meet and assist service at drop-off points.

Screener Checkpoints

  • Individuals assisting passengers with disabilities are allowed beyond the screener checkpoints. These individuals may be required to present themselves at the airlines' check-in desk and receive a "pass" allowing them to go through the screener checkpoint without a ticket.

  • Ticketed passengers with their own oxygen for use on the ground are allowed beyond the screener checkpoints with their oxygen canisters once the canisters have been thoroughly inspected. If there is a request for oxygen at the gate for a qualified passenger with a disability, commercial oxygen providers are allowed beyond the screener checkpoints with oxygen canisters once the canisters have been thoroughly inspected. Commercial oxygen providers may be required to present themselves at the airlines' check-in desk and receive a "pass" allowing them to go through the screener checkpoint without a ticket.

  • The limit of one carry-on bag and one personal bag (e.g., purse or briefcase) for each traveler does not apply to medical supplies and/or assistive devices. Passengers with disabilities generally may carry medical equipment, medications, and assistive devices on board the aircraft.

  • All persons allowed beyond the screener checkpoints may be searched. This will usually be done through the use of a hand-held metal detector, whenever possible. Passengers may also be patted down during security screenings, and this is even more likely if the passenger uses a wheelchair and is unable to stand up. Private screenings remain an option for persons in wheelchairs.

  • Service animals, once inspected to ensure prohibited items are not concealed, are permitted on board an aircraft. Any backpack or sidepack that is carried on the animal will be manually inspected or put through the x-ray machines. The service animal's halter may also be removed for inspection.

  • Assistive devices such as walking canes, once inspected to ensure prohibited items are not concealed, are permitted on board an aircraft. Assistive devices such as augmentative communication devices and Braille `N' Speaks will go through the same sort of security screening process as used for personal computers.

  • Syringes are permitted on board an aircraft once it is determined that the person has a documented medical need for the syringe.

  • Personal wheelchairs and battery-powered scooters may still be used to reach departure gates after they are inspected to ensure that they do not present a security risk. Any backpack or sidepack that is carried on the wheelchair will be manually inspected or put through the x-ray machines.

  • Personal wheelchairs will still be allowed to be stowed on board an aircraft.

  • Air carriers must ensure that qualified individuals with a disability, including those with vision or hearing impairments, have timely access to information, such as new security measures, the carriers provide to other passengers. For example, on flights to Reagan Washington National Airport, persons are verbally warned to use the restrooms more than a half an hour before arrival since after that point in time passengers are required to remain in their seats. Alternative formats are necessary to ensure that all passengers, especially deaf persons, understand new security measures such as the one at Reagan Washington National."

To file complaints of mistreatment or discrimination in airline services, contact:

Aviation Consumer Protection Division
U.S. Department of Transportation
Room 4107, C-75
Washington, DC 20590

Building Code Fracas Heats Up

The ongoing saga of the New York State Building Code took a dramatic turn this fall.

On November 8, about 25 disability activists occupied a NYS Building Codes Council meeting in Albany. Protesters using wheelchairs threw themselves to the ground, chanting, "Access is a civil right!" and refused to leave the room. State Police arrived almost immediately but let the protest go on for about a half hour before moving people away from a door so the Council members could leave. So the protesters marched over to the lobby outside Governor Pataki's office and made noise until a meeting was arranged with senior Pataki aide Mark Kissinger, who is in charge of building code issues.

The Codes Council has been trying for almost a full year to drastically cut accessibility requirements in new apartment buildings, and advocates have been battling to preserve the current code for just as long.

Presently New York's building code requires that virtually all new dwelling units be fully "adaptable" for people with disabilities. This means they must have level entrances, wide doorways, extra blocking in walls around toilets, bathtubs and showers where grab bars may be installed, and all hallways and rooms must be large enough to enable a person using a wheelchair to maneuver freely.

The Codes Council has been trying to adopt the much weaker International Building Code (IBC). This code only applies to buildings with 20 or more units, where it requires that 2% of apartments must be fully accessible, and the rest must only have wide doorways.

New Yorkers with disabilities have been organized to oppose this move since last spring. They have forced the Codes Council to hold public hearings and have brought hundreds of people to those hearings to express opposition to the IBC. However, the Pataki Administration has been firmly behind the proposed change. In late summer, after a series of public hearings at which no one but Codes Council members testified in favor of the changes, a Pataki spokesperson insisted that the current building code is "dead" and that the changes will be made. When it was pointed out that the public hearing process had proved that the interested public is overwhelmingly opposed to this , the spokesperson said, "Then maybe we should just have more hearings."

However, the Pataki Administration did not hold more hearings. Instead, it pretended to negotiate in good faith with activists, using its own Office of the Advocate for People with Disabilities as a mediator. While these negotiations were going on, Pataki officials secretly got Codes Council members to accept a sham "compromise" that upped the fully accessible figure from 2% to 10%, and then tried to hold a secret meeting where the Council was to rubber-stamp it. The Advocate's Office knew nothing about this shady deal and was caught off-guard when the news leaked late on the afternoon of November 7.

It was also leaked that the main reason the change was proposed is that some Long Island building contractors with connections to Pataki want to build a big housing project and don't want to comply with the current building code. One of these contractors has a seat on the Codes Council.

At the sit-in, organized by NY State ADAPT, advocates pointed out that reducing building code accessibility requirements will result in fewer accessible new housing units and will make it harder for NY to comply with the Supreme Court's Olmstead decision. That decision said that keeping people with disabilities in segregated settings against their will is illegal discrimination. Since a lack of accessible housing could keep thousands of people from leaving institutions, weakening the building code may violate the ADA and could subject the state to lawsuits. Nonetheless, the Council passed its phony "compromise".

But the word was that the Pataki Administration was extremely embarrassed by the protest. The Kissinger meeting was scheduled for early December. In the days leading up to that meeting, some building industry lobbyists appeared to back off from demands that the code be seriously weakened as interesting new ideas were "floated" off the record. Some of these ideas could result in a different but, in the end, better combination of accessibility and adaptability rules than we have now. Meanwhile, passing the "compromise" means the Codes Council must hold more public hearings. Our advice: have hope, but be ready to travel to Albany with water bottles and sleeping bags.

Courts Watch

by Ken Dibble

A number of recent court cases appear to pose substantial threats to the ADA and Section 504 of the federal Rehabilitation Act. Here's the rundown:

Threats to ADA Title Is

In recent years several Supreme Court cases have narrowed the ADA's definitions of "disability" and "person with a disability" for purposes of deciding whether someone is protected from employment discrimination. Most of these cases were either foolishly chosen or badly argued, and as a result, the Court has essentially thrown out the ADA's prohibition of discrimination against people whom employers perceive as having a disability, and has weakened the actual definition of disability to leave out anybody whose condition has been improved by medication or prosthetic devices. Now the Supremes have taken on two more such cases.

In Chevron v Echazabal, a man with the serious chronic liver disease hepatitis C was denied a job working in an oil refinery because doctors said exposure to refinery chemicals would be likely to overpower his liver and kill him. Echazabal sued and the federal district court ruled against him, so he appealed to the 9th. Circuit Court, which ruled against Chevron. Now Chevron is appealing. The ADA says that people whose disabilities constitute a threat to others are not protected, but is silent on issues like this one. However, one of the Appeals judges, Stephen S. Trott, wrote a dissenting opinion in which he said that the majority decision would allow a steelworker with vertigo to work on high-rise buildings or a person who is allergic to bee stings to be hired as a beekeeper. That sounds sensible but in fact it's not. Trott's examples are of acute symptoms that would show up right away and make it impossible for the workers to do their jobs. Therefore they would not be "otherwise qualified" for those positions and not protected by the ADA. But Echazabal, assuming the doctors' fears are justified, would only very gradually lose liver function and his job performance would not be affected for some (possibly quite long) period of time. The Supremes have shown an inability to grasp such subtleties of disability reality in past decisions and Trott's kind of thinking is likely to be attractive to them.

The problem with Toyota v Williams, on the other hand, lies with Williams and her lawyers, who are gambling the fate of the ADA on a bad argument. Williams worked in an automobile factory and has carpal tunnel syndrome. The exact circumstances of her situation are unclear. She originally did manual labor but was given a less physically stressful job when her condition first appeared. However, she was later required to begin sponging down cars on the assembly line--whether due to a transfer to a new position or a change in her job description we don't know, and we also don't know the reason for the change. In any event, she couldn't do the job and was fired. Williams sued to get her job back under Title I.

Title I says that if a worker acquires a disability it may be a reasonable accommodation to alter his/her job description or offer a transfer to a different job for which he/she is qualified, if the employer doesn't incur any significant loss by such alteration or there is a vacant opening for the transfer. It doesn't require employers to keep people in jobs they are unable to do and it doesn't require them to create a job for anyone. Given these facts, Williams simply is not "otherwise qualified" to do the job she was fired from and shouldn't have a leg to stand on. The federal district court did rule against her, but not on that basis. Instead, it said carpal tunnel syndrome isn't a covered disability because it doesn't substantially limit one or more major life activities, as required by the ADA. The Appeals Court sided with Williams, and in November we were treated to the spectacle of lawyers trying to convince such intellectual giants as Antonin Scalia and Clarence Thomas that not being able to lift 20 lbs. or bend one's elbows more than a certain number of degrees is a "substantial limitation". During these oral arguments, Justice O'Connor exhibited her ignorance of basic disability law, as well as of the facts of the case, by asking whether Workers Compensation law should have resolved Williams' problem. This is not a promising development.

Threats to ADA Title II

Title II outlaws discrimination on the basis of disability by state and local governments. It is the title on which the Olmstead anti-institutional-bias decision was based. You'll recall that the Supreme Court's Garrett decision, while deliberately avoiding ruling on Title II, laid out a rationale that could later be used to declare Title II unconstitutional with regard to state governments. The Court believes that states are immune to lawsuits by citizens under the 11th. Amendment unless they waive that immunity or Congress finds a good enough reason to invoke the 14th. Amendment to waive it. In Garrett, the Supremes said that because, in their view, disability discrimination is not as bad as racial discrimination, there is no way the 14th. Amendment can ever be used to make state governments change how they treat people with disabilities as long as they can offer a "rational" justification for it. While the Garrett opinion was explicitly limited to Title I suits against states for money damages, later decisions could rule out any sort of Title II action against states, because the opinion also says that the ADA's "undue burden" standard is more restrictive than the "rational purpose" test and therefore cannot be enforced against state governments under any circumstances.

So now comes Francisco Garcia v SUNY Health Sciences Center of Brooklyn. Garcia flunked out of medical school in his first year. After a psychiatrist diagnosed him as having learning disabilities, he applied for readmittance. SUNY agreed to readmit him but only if he repeated some of the first-year courses. Garcia was unwilling to do so and brought suit under Title II of ADA (and Section 504; see below) in federal district court. The district court summarily dismissed the suit on 11th. Amendment grounds and Garcia appealed to the 2nd. Circuit.

The Circuit Court's decision is both bizarre and dangerous. They used the argument outlined above to find that Title II "in its entirety" is unconstitutional with regard to state government, but also said that since Congress intended to abrogate the 11th. Amendment in the ADA to protect people with disabilities from discrimination, the Court had an obligation to try to find a way to provide that protection without violating the Constitution. So they created a new standard: Citizens can sue states for money damages under Title II if the state's actions were motivated by "discriminatory animus or ill will due to disability". However, the Court went on to uphold the district court against Garcia by finding that there was no evidence of such motivations in this case!

This decision directly challenges the Garrett finding that any "rational purpose" a state can come up with for its actions will render it immune from suit even if there are other reasons that are not "rational". Many disability advocates feel that Garcia was wrong not to accept what appears to have been a reasonable accommodation offered by SUNY once his disability was diagnosed. It's also pretty obvious that it's not a good idea to let people who can't pass basic medical science courses become doctors whether they have disabilities or not. So Garcia is not a good test case, and if he makes the mistake of appealing the decision to the Supreme Court, the Justices are likely to chuckle over the Circuit Court's interestingly original "animus or ill will" concept, invalidate it, and then agree that Title II is unconstitutional "in its entirety".

Then there's Jones v Commonwealth of Pennsylvania. Jones is a blind guy who claimed he was being harassed by the state voc rehab agency; he tried to take a training course provided by the agency and was repeatedly expelled, so the 16-week course took him 3 years to finish. He sued the state in federal district court under Title II, acting as his own lawyer. Initially the district court judge refused to summarily dismiss the case on 11th. Amendment grounds and tried to find a lawyer who would represent Jones for free. After several attempts to find one failed, the judge had to consider the facts of the case. During this search for counsel, the Garrett decision came down. The district judge then felt forced to rule that while Garrett is specifically limited to ADA's Title I employment provisions, the logic of the decision inescapably indicates that Title II is also unconstitutional as applied to the states.

Threat to Section 504

Section 504 of the federal Rehabilitation Act forbids discrimination on the basis of disability in the provision of programs and services by any entity that receives federal funds. Since state governments get federal funds, they are subject to Section 504 as well as to ADA Title II. The Garcia in the Garcia case also sued under 504 and the 2nd. Circuit's ruling on that point was frightening also.

In the ADA Congress revoked states' 11th. Amendment immunity from suits. Under the terms of 504, however, if a state accepts federal funds it is considered to have waived its immunity itself. The Circuit decision said that such a waiver must be done "knowingly", and found that, because at the time that the state accepted the funds it believed that the ADA had already wiped out its immunity, it did not really "know" it was explicitly waiving it under Section 504. Therefore, Section 504 doesn't apply to New York State or, by extension, to any state in a case involving funds accepted after passage of the ADA but before the Supremes started using the 11th. Amendment to systematically dismantle federal civil rights legislation in the late 1990s.

We don't know if Garcia or Jones plan to appeal their rulings. The Supreme Court has heard arguments in both Echazabaland Toyota and should release decisions sometime in the spring.

Ground Zero - Plus or Minus a Few Blocks

Those of us who aren't familiar with New York City found it hard to visualize the details of what occurred there when the World Trade Center was destroyed. It was obvious what happened to the Trade Center itself and the people who were trapped in it. We all heard or saw the news reports that some surrounding buildings were also destroyed or severely damaged, and we saw the towering, terrifying clouds of smoke and dust engulfing crowds of people and buildings. We saw the heroic efforts of the police and firefighters in the burning rubble. It took a few days for the full magnitude of the disaster to become clear, but when clarity emerged from the chaos, we saw that people with disabilities all over lower Manhattan and Brooklyn were in serious trouble.

Here's what happened: The World Trade Center wasn't just a bunch of buildings. It was a transportation, communication, and public utility nexus that not only towered above the city but extended several stories below it. All of this was utterly destroyed. The telephone, electric power, and gas lines that ran through or near the complex were cut. Some other gas and power lines serving the area were shut down to prevent the spread of fires. The subway station beneath the towers was destroyed and for several days an entire subway line was shut down. The police completely closed an area of several blocks surrounding the site to everyone except emergency workers for weeks. Within this area the streets and sidewalks were filled with rubble, debris, and dust. Damage such as blown-out windows and loose masonry occurred in dozens of buildings. Some of these buildings were residential. Others held grocery stores, drugstores, laundromats, and other small businesses. Farther away from the disaster site, extending even across the river into Brooklyn, everything was covered with a thick layer of fine dust. People whose apartment windows were open on that still-summer morning came home to find every single surface and object in their homes covered with up to an inch of that dust.

What about the people? Consider: You live in lower Manhattan within a few blocks of the World Trade Center. You use a wheelchair. You need personal assistance services to use the toilet, take a bath, get in and out of bed, cook and eat your meals. You regularly take important medications without which you may become very sick or even die. By midmorning of September 11 there are two possibilities for you: Either you went out early in the morning to work or some other place, or you are still in your apartment.

If you are still in your apartment, you now have no electricity, no gas for your stove, possibly no water. If your windows are open, your home--and lungs--are filling up with acrid smoke and dust. If you don't have a cell phone, you also have no phone service. The elevator in your building has no power. If you're on the first floor, you might be able to get outside but you can't go far because the sidewalk is full of rubble, broken glass and thick dust. Your personal attendant is standing at a police barrier blocks away and can't convince the cops to let her pass. You are low on both food and medicine. If you could get outside and manage to negotiate the sidewalk, you'd find that there is no drugstore or grocery open anywhere nearby. There are no buses or subways running anywhere nearby either, and there won't be for several days. There are no police or firefighters scouring the neighborhood looking for people like you. Nobody knows you are there, and you can't contact anybody.

If you weren't home when the disaster happened, you are now officially homeless. There is no transportation running anywhere near your house. The cops won't let you into the area, and even if they did you or your service dog would soon be stopped by the debris. If you did get home you couldn't stay there long without power, gas, water, supplies or attendant services. So you go to an emergency shelter, without your medication, and chances are it is not accessible and does not provide attendants.

If you live farther out and had your windows open, you now have a house full of toxic dust that you are unable to clean up. Chances are, your personal attendant is either not allowed, or doesn't work enough hours, to clean it up for you.

How did these people survive? If they were consumers of the city's CILs, they were fortunate. Within hours of the explosions, employees of the Manhattan Center for the Independence of the Disabled in NY (CIDNY) were on the phones trying to reach every single consumer who lived in the area. If they couldn't reach them, they talked their way past the barriers and went door to door to check up on them, arranging help to get them out or to get attendants and supplies in. (The Red Cross tried to respond but was woefully uninformed about the needs of the disability community. Everything was a struggle, from getting accessible cots, to gaining approval for payment to put up New Yorkers with disabilities in accessible hotels instead of inaccessible shelters.) The CILs in the surrounding boroughs sent help or worked on getting stuff donated. Other CILs across the state sent donations or other support. In this way, many potential tragedies were avoided.

But in the following days a larger tragedy emerged. As you read this, most basic services have been restored in lower Manhattan, but the subway is gone and much of the mess is still not cleaned up. Some buildings have not been completely repaired. Many of the small businesses in the area operated on shoestring budgets and did not survive the disaster; they won't be back. The Trade Center site is still smoldering. The area around it has become a ghost town. Many of the people who lived there are still in shelters. Like many nondisabled people, many of the people with disabilities who worked in the area no longer have jobs. However, unlike many nondisabled people, many of those with disabilities whose worksites were relocated also don't have jobs because they can't get to them. Many have begun to move permanently out of the city to accessible housing that is free of dust, in surrounding communities with accessible transportation, jobs and nearby essential services. Many of those further out still have not had the noxious dust cleaned out of their homes.

And what of our heroes, the dedicated CIL staff and the attendants who worked above and beyond the call of duty? CIDNY and surrounding CILs overextended their budgets to rescue these people. The New York State Independent Living Council and VESID were able to make an emergency appropriation of about $70,000 to CIDNY to cover some, but not all, of those costs. None of the outpouring of public support and admiration for police and firefighters has been extended to the personal attendants who took risks to reach their clients, or to the CIL staff who struggled for days to make sure everybody was okay. And our Governor and state Legislature have cut the budgets of all the CILs in New York State by over $1 million.

News Briefs

Republicans Use Attacks to Push Judges

Democratic Senators who had been carrying the message that people with disabilities are opposed to Bush's appointment of anti-ADA Garrett lawyer Jeffrey Sutton to the federal bench reported they were under extreme pressure to let the nomination come to the floor in early November. An email from the Senate Republican Conference stated that some Senate Republicans were planning "a press event to speed the pace of confirmations." The email said the Republicans' "message would be: You can't get wire taps, search warrants, etc. without judges; confirm the President's slate so that efforts to capture terrorists won't be delayed." Disability activists got the word out to send letters opposing Sutton to key Senators, and as of early December his nomination was still in limbo.

Accessible Voting Bills Before Congress

Election reform bills were before both houses of Congress in early December. Developed to address last year's Florida election fiasco, both bills contain language to standardize voting procedures in the states. Disability activists favored the Senate's Dodd-Conyers bill, which included strong specific provisions guaranteeing equal access to voting for disabled Americans. These were much stronger than the language in the House bill (introduced by Reps. Ney and Hoyer), which simply reiterated that the ADA applies to polling places. A report requested by Congress and published by the federal General Accounting Office found inaccessible polling places in 57% of precincts in the 2000 election.

and its Discontents

The Disability Community's Experience

The events of September 11, 2001 changed all of our lives. Like any great emergency, "9-11" has called forth both the best and worst in human behavior. Among the best was the heroic effort of the New York City Centers for Independent Living (CILs), led by the Manhattan Center, to save the lives of people with disabilities imprisoned in their apartments without basic necessities. Among the worst was our leaders' use of the attack to both camouflage and justify the childish fiasco that was the 2001 state budget process as they trashed the financial well-being of human service programs and attempted to gouge the federal government. We'll report on all of these events in these pages.

Terrorism as Camouflage
The New York State Budget
and the Medicaid Buy-In

by Ken Dibble

We want to make sure that everyone understands that we feel the greatest sorrow and sympathy for the survivors of the horrible attack on Americans that was perpetrated in New York City. We do understand that the destruction there was vast, the costs for clean-up high, and the negative effects on the national and regional economy will be long-lasting. We are very appreciative of the sacrifices that emergency workers and their families have made, the hard work that was done, and the suffering that is continuing.

That being said, there are a few things about these events that don't add up, and a few more that add up all too well. It is our responsibility as journalists to avoid having our judgment clouded or our voices silenced by fear, sorrow, or jingoistic sentiment. As President Bush said, if we don't pick up and go on with what we were doing before the attacks, the terrorists win. So we're picking up and going on, remembering our own heroes, and keeping our eyes open and our hearts full.

When the attack took place the Legislature and Governor were still negotiating issues that were not resolved by the "baseline" budget the Legislature passed. You'll recall, the Governor pulled a political power play by refusing to negotiate any budget add-ons, including restoring the $1 million he had cut from CIL budgets as an initial negotiating ploy. So the Legislature responded with a power play of its own, passing a budget that didn't include all of Pataki's add-ons. These included the Medicaid Buy-In, which was a Governor's Program bill (even though the Legislature was considering a more generous version).

Both sides pointed self-righteous fingers at each other, but the fact remains that both sides got themselves embroiled in highly personal feuding and, like angry children, abandoned their responsibilities to the citizens of this state. Only when the stand-off began to threaten the sacred cow of public school funding did negotiations begin in earnest. Then came September 11.

Naturally, the budget situation changed. Emergency relief funds and clean-up money had to be found. The stock market plummeted and between that and the wholesale destruction of businesses in Manhattan, New York's revenue forecasts were adjusted sharply downward. Our leaders negotiated a $200 million supplemental budget for social service agencies "most in need"-tiny compared to the cuts in the "baseline" budget--and announced that everyone would have to sacrifice and share the pain because the state not only must clean up the mess and restore services in Manhattan and tend to the families of the slain police and firefighters, it must rebuild the World Trade Center.

However, certain facts have surfaced since that announcement:

1. The state had over $2 billion in its "rainy day" fund going into the attack, plus some amount of budget surplus that both the Governor and Legislature were getting ready to allocate in a supplemental budget, mostly for school aid.

2. Insider advocates claimed that there was another $2 billion or so squirreled away by the leadership, which they planned to spend on a showy array of new programs and program increases just before the next election.

3. Hundreds of millions of dollars in private and corporate donations were collected for the families of killed and injured relief workers and people who worked in the WTC.

4. The World Trade Center and much of the real estate surrounding it was insured and the insurance companies announced that they will honor the policies even though the attack could be interpreted as an "act of war" voiding them.

5. Rebuilding efforts cannot begin for at least 18 months, more likely 2 years.

6. The $200 million for "most needy" agencies has still not been allocated. Some sources reported that the legislators could not reach agreement on how to do so. Others said that the money would be handled like Legislative Member Items. And now some of our leaders are saying that only $100 million will be available for the current fiscal year, with the rest being held over for next year.

7. The federal government is going to provide at least $20 billion in disaster relief money to New York State.

8. After this was announced, Pataki went to Washington to lobby for $54 billion, including billions for projects that are completely unrelated to the attacks, such as a high-speed rail line between Albany and New York City.

So let's add this all up:

At the time of the attack, the state had anywhere between $2 billion and $5 billion in ready cash at-hand, unspent. Within days after the attack, our state leaders knew that the feds would eventually pay virtually the entire bill for clean-up and infrastructure repair; that no rebuilding costs would be incurred for between 18 and 24 months; that when rebuilding began, most of it would be paid for by private insurance; and that relief and compensation costs for dead and injured emergency workers and their families were well covered.

So where in all of this do they come up with billions of dollars in budget shortfalls that had to be taken away from underfunded social service agencies? Yes, millions were being spent each day on the cleanup, but almost all of that money will be reimbursed.

Pataki claims there will now be a $9 billion deficit due to the recession, but he has projected multi-billion-dollar deficits every year he has been in office, and every year there have instead been multi-billion-dollar surpluses. He has no credibility on this issue.

It is clear that had these leaders been responsible and passed a budget on time, or even close to on time, none of these cuts would have been made, nor could they have justified taking away any money after the attack. And, a Medicaid Buy-In would have been passed. Despite the claims of the Governor's budget office that the Buy-In will cost tens of millions of dollars in new Medicaid spending, reliable and conservative data from states that have already implemented a buy-in have shown that the initial costs are negligible and that, over time, the program pays for itself in increased income tax revenue and insurance premiums and decreased use of welfare supports. Within 2 or 3 years--the same "long run" our leaders claim to be considering when cutting critical services to people who depend on them--the Buy-In will represent a net revenue gain for the state, not a loss.

Those are the numbers. What about the attitudes? As we reported before the attacks, our most knowledgeable inside advocates were increasingly hearing that the Republican leadership didn't want to pass any new programs this year; they wanted to save them for next summer so Pataki could get the glory before going into the election. And what are we to make of Pataki's attempt to--what?--trick or guilt Congress into paying for a few pet projects in his core-support districts while they were throwing money around, within less than a year of a gubernatorial election?

Again, we were horrified by the thousands of deaths and enraged by the attack that caused them. We understand that this has been a heavy blow to the hearts and minds of the citizens of New York City--a blow that can never be forgotten, and one that many will never completely recover from. We know also that this was a financial blow, but we as advocates, and you as taxpayers, need to remember that the money is there; it was not blown up by bombs or destroyed by fire. It is pouring in, and there is enough to meet all of our legitimate and real needs--if we don't let the politicians hijack it for their own purposes.


Safety Nets and Bolts

Since the events of "9-11", people have been wondering if our community's emergency procedures are up to snuff. People with disabilities, in particular, learned from New York City that their needs weren't well understood or addressed by emergency workers after the attack. So here's a little guide to what's been done and being done in Broome County, and what you can do to protect yourself.

The first thing we want to say is that life is dangerous and it will eventually kill you. We can't be both perfectly safe and perfectly free. Most Americans choose freedom over safety and we are like most Americans. We don't agree with those who say that it's better to build a fence at the top of the cliff than to keep an ambulance waiting at the bottom; if we can't go off the cliff, we can't soar over the valley. No emergency response plan can save everybody's life in a serious disaster, and thousands of the lives that are saved may be pretty rough for a while. Emergency plans are there to minimize loss of life and suffering, and good ones do a decent job of it, but we should not expect miracles.

The second thing we as a Center for Independent Living want to emphasize is that people with disabilities are not entitled to be safer than people without disabilities. It is people who believe the opposite who do all the damage to people's self-esteem, self-reliance, and civil rights. On the other hand, we firmly believe that a proper emergency response plan ensures that people with disabilities, in general, fare no worse in a disaster than people without disabilities. Achieving that may require some different and extra efforts to be made, and we're all for that.

The third thing is Don't Panic. Recently we had Broome County's emergency services coordinator, Mike Aswad, here to talk to us about this stuff. He said that the anthrax thing was causing people to lose their minds. His office was getting hundreds of calls from people who had suddenly lost the ability to think. Just one example: Somebody called 911 to report that a big pile of "white powder" had suddenly appeared at the side of the road near his mailbox. A response team was sent. Do you know what they found? An ant hill. Other people have been wasting the time of emergency service workers with "white powder" reports that turned out to be cleaning powders or just simple dust. The first thing to do when something unexpected happens is keep your head. If you do that, you can move faster if moving fast is what's required, and you can think more clearly if that's what you should be doing.

And finally, emergency preparedness is everybody's responsibility. Everybody should have the following things:

  • A few days' worth of canned or other nonperishable food and bottled water on hand. Buy something extra every week and stock up slowly to keep your costs manageable.
  • A flashlight with working batteries installed and an extra set or two nearby.
  • Candles and matches.
  • 15 feet of rope strong enough to bear your weight.
  • An evacuation plan for your home in case of fire.
  • A "weather radio" (a special radio receiver that picks up those automated weather reports and can automatically turn itself on and announce an alert if necessary. They aren't very expensive. Save up and get one--and keep its batteries fresh.)

And, if something looks bad but it isn't immediately threatening like a fire or a flash flood, then please.take a few minutes to investigate and see if it really is a danger that should be reported. Don't make mountains out of ant hills. If you waste emergency workers' time on stuff that isn't an emergency, somebody with a real emergency may die.

Now for the disability stuff:

On the self-reliance tip, here are some extra "on-hands" that may apply to you:

  • A few days' worth of medication and medical supplies. (We know that insurance plans/pharmacies won't always let you refill weeks in advance, but a few days is usually not a problem, so don't wait until you're on your last pill or injection.)
  • An extra set of charged wheelchair or respirator batteries.
  • An emergency cell phone. (Phones with 911-only emergency plans can be quite cheap.)
  • If your critical assistive technology is absolutely dependent on AC power, you should have a generator and a full tank of fuel. If you can't afford this, we may be able to find a funding source. Call Darlene at 724-2111 (voice/TTY).

The next thing is, if you've got a life-or-death, right-now, serious real emergency, don't call your service coordinator! Call 911 like everybody else. 911 will help you a lot faster and better than your service coordinator can. If you are able to call your service coordinator, you can call 911--it's four fewer numbers to remember! But if you really need help learning how to do that or remembering to do it, ask us about it now; we can assist you with training, practice, and adaptations. Disasters are upsetting and frightening for everybody. Being upset and frightened isn't an emergency; it's just part of life. If you feel you have a problem dealing with being upset, the time to ask for help is now, so you can learn to cope better. We can help with that. But in a real emergency, your service coordinator may be dead or badly injured, or saving members of his or her family, or unable to get to the office, or unreachable because the phones are down, or unavailable because some scared person is wasting her time, so please! Don't depend on service coordinators! Depend on your standard community emergency systems: 911, police, fire departments, ambulance services, emergency shelters. Learn to use and rely on them now, before you need them.

Now, as we reported elsewhere, in New York a lot of people with disabilities were trapped in their apartments after the attack with no phone service, no way to get out, and afraid that nobody knew they were there. We're happy to report that if you use personal assistance services of any type, and you live in Broome County, this has been thought of. All the personal assistance service providers in the county have agreed to divide up the people they serve and contact them if they live in an endangered area. If they can't get through by phone they will try to come to your house. The county emergency services department knows about this and trains emergency workers, so hopefully police manning any barricades will let your provider through. We at STIC are working on a similar plan for people who get regular in-home support services other than personal assistance from us.

We're also looking into ways to get local TV stations to improve the reliability of their closed-captioning of live news events and to make sure that all important emergency information is always displayed either with closed captions or an open "crawl" at the bottom of the screen.

At STIC we're working on improving our own emergency procedures, some of which apply to all tall buildings. For example, we've recently upgraded the emergency call boxes in our "areas of refuge" on each floor. Areas of refuge are required by the building code and are specially-constructed to resist fire and smoke for some time. When a building is on fire the elevators are automatically sent to the bottom floor and turned off. This is not a conspiracy to kill people with disabilities, it's done because elevator shafts transmit fire and poisonous smoke rapidly throughout a building, so when the fire alarm goes off, the elevator shafts are sealed. If the firefighters decide that they don't need to worry about this, they will turn on the elevator and use it to come and get you. If you can't get down the stairs, go to the nearest area of refuge, close the doors, and hit the call button. The button causes a light to go on in a control panel in the first floor lobby. The rescue workers will see the light, know where you are, and move heaven and earth to get you out.

Many people are, naturally, passionate about this. They declare they will pick you up, throw you over their shoulder, and carry you down the stairs themselves before they'll leave you alone to await rescue. This is good, but there are two important things to remember: People carrying other people are going to slow down traffic in the stairwell. If that happens, it's pretty likely that somebody is going to panic and start pushing and shoving, and the result will be a tangled jumble of bodies at the bottom of the stairs, none of whom will get out alive. The other thing is that if you don't carry a person properly, one or both of you may get hurt--perhaps so badly that you can't make it down the stairs. The right way to carry a person is to use two people. One stands behind the person to be carried, slides her arms under the person's armpits and "shakes hands with herself" across the person's chest. The other carrier stands in front of the person, passes his hands under the person's knees and "shakes hands". Then you both count to three and lift together. So by all means, rescue your friends yourself, but wait for everybody on the floors above you to get out first, and make sure you lift properly.

We'll keep following this issue and report new information and ideas as we get them.

Unsafe at Any Size

These stories are true, and they happened in real group homes in our part of New York State. Names and other details have been changed to protect the innocent-and to keep group home apologists from claiming that "certain agencies" are better than others or that "special circumstances" explain away some particular horror. The reality is, the group home idea is like a leaky wooden sailboat on the rocks in a windstorm; for every hole you find and patch, three more are gouged. The thing is sinking. Get out before you drown.

This time we have a couple of stories that show that group "homes" are just not homes--not even under the best possible circumstances, when everybody means well and tries their best:

Marcella Tobin lived with her family for many years. No doubt the lack of support services available to her parents, as well as her own intellectual disability, contributed to her pretty bad behavior. Eventually her parents grew old and could no longer handle her. She went to live in a group home. By all accounts this facility was well-run, with caring staff and an administrative commitment that this would be Marcella's home until she died. Her behavior improved and she began to blossom. Then the administration changed. The provider agency grew very large and adopted an assembly-line approach to services. Staff changes occurred at Marcella's facility, and she reacted emotionally to the losses and instability in her "home", as anyone would. She began to act out as a way to communicate her distress and needs, as many people with intellectual disabilities do. But from a medical-model clinical viewpoint, she "deteriorated". The new staff didn't know her and the new impersonal atmosphere meant that they didn't much care. The new administration forgot or never knew that this was supposed to be Marcella's home forever. So she was shipped off to a "behavioral treatment facility". Eventually she got used to that place and calmed down a little, so she was sent back to the group home. But nothing had changed there, and it wasn't long before Marcella was again on the warpath and the staff perceived her as a dangerous workplace hazard. Eventually, they threw her out of her "forever home".

Marcella's story has a happy ending; she was hooked up with a caring foster family who treated her as one of their own, and, like anyone, she responded to love with love and respect with respect. But it didn't happen in a group home, it happened in a real family.

Martin Fernandez had been institutionalized since childhood. As an adult he had noticeable scars from severe physical abuse by institutional staff, and chronic illnesses that had never been properly treated. He had little or no intellectual impairment, and despite his experiences was an open, warm and friendly person. He was initially released from the large institution to a group home. Once there, he quickly saw the opportunities available to him and worked hard to move into his own apartment. For a time he lived there happily, proud of his home and active in the community. He was a big local sports fan and was often seen in the stands at games with his friends. He was recognized and greeted on the streets by the many local businesspeople and neighbors whom he had befriended. But eventually his health began to fail. He needed regular medical attention and attendant services that weren't readily available in his small town. Despite his independence, the state had a legal obligation to "take care" of him as a result of the abuse he had suffered at its hands, so state workers took charge and moved him back into the group home. Being an outgoing and friendly guy, the staff and other "residents" liked him so he got along okay there, and he still got to see some of his friends in the community. But, the agency that ran the group home didn't consider it efficient to drive him some 30 miles to a neighboring city every week for extended treatment, so after a while he was moved to a large institution in that city. His friends fought this move tooth and nail, but they were ignored. Since most of them could not drive, he lost contact with them. Once again, he began building new relationships "on the inside", but he didn't live much longer. When he died, his old friends tried to have him buried in his adopted hometown, but those pleas were also ignored. Instead, he was buried in an unmarked pauper's grave in the city that was never his home.

You see, group homes, no matter how nice they are, are part of the "system", and the "system" cares more about legal liability and bad publicity than it does about the quality of the lives of the people it "serves". When Martin's health began to deteriorate, he should have been allowed to rely on the loving support of his friends for help and care, as we would do. He should have died in his own home, and his friends should have borne his body to his grave in the place where he lived and was happy. But the "system" can't let that happen; it's too risky-somebody might get sued or, worse, get his name in the paper. The "personal touch" and "family atmosphere" that you sometimes find in the best group homes is only an illusion. Behind it the "system" and its legal imperatives and implacable machinery are always there. In the end, they are all that matter.


Winter 2001-02
Issue No. 65