Stop! Hey ... What's That Smell?

by Maria Dibble

Theories abound on the most effective and successful methods for working with children with autism, and for every theory there are those who will swear by the techniques, and those who believe the approach is from the devil himself. Sorting fact from fiction or theory from practice is difficult, but I have heard enough stories over the last four months about Applied Behavioral Analysis (ABA) to form my own opinions about its tactics and to cringe at its implications.

For the most part, professionals from across the country agree that ABA in its purest form could be useful with some children. However, many caution that the implementation of ABA often strays from its intent and could have serious detrimental effects. I will not attempt to explain theories here; there are those who could do that far better than I. I have, however, spoken to quite a few parents over the last few months, and have heard some stories that almost made my straight hair curl and turn gray to boot. Below is one such situation that had an especially profound impact on me and which I feel compelled to share with our readers.

Parents of a preschooler with autism were seeking assistance with their son. They were told about ABA, but about no other options, and they were led to believe they had no alternatives. This child had learned to count to ten, but consistently left out the number seven. Thus, he counted from 1 to 6 and then from 8 to 10. The staff providing treatment apparently saw this as a serious failing and asked permission of the parents to work with the child to correct the problem. They told the parents that some extraordinary steps might be necessary and asked for their cooperation. Again, without enough information to make a truly informed choice, the parents agreed.

This child was kept from 8:00 in the morning to 2:00 the next morning in the same room, repeating the count from 1 to 10 over and over again, until, at 2:00 am, he finally said "seven"! What a marvelous victory. A preschool child, not allowed to sleep, being forced to repeat his count until he got it right. If that was done to a nondisabled child, we would call it abuse. If we were to subject an adult to such treatment, we would probably call it "brainwashing" or "torture". I'd like also to point out that the staff worked in shifts. They couldn't stand the stress or exhaustion of working eighteen hours straight. They had no problem expecting it from a child though.

And I wonder, what effect will that momentous "achievement" have on this young child years from now? Is brow-beating our children an acceptable technique for getting them to do what we want, simply because it seems important and expedient to us? How crucial is it for a preschooler to count to ten accurately anyway? Weren't there other things they could have focused on, or a gentler way to achieve the same end? Some might accuse me of not fully understanding the theory, and they would certainly be right. I'm not a psychologist and I have not studied in this field. However, I don't need a degree or credentials to understand human dignity and basic decency towards one another, and I don't think this situation describes a positive interaction. Perhaps if we were trying to teach a child to avoid some very real and current danger, such a radical approach might be necessary. But simply to achieve the goal of saying "seven"? I find it unacceptable.

This isn't the only experience of this kind I've heard about from parents. For example, there was a young boy who was having difficulty with toilet training. The ABA practitioners put him on a toilet several times a day, and made him sit there until he urinated. Then they gave him a treat as a reward. The boy decided that the whole point of the exercise was to get a treat, so each time he went, he withheld a little bit so he would be able to go again the next time he was put on the toilet. The result, according to his physician, was that he developed bladder spasms.

Parents tell of repeated instances of coercion and subjection to other indignities, and of the fear their children developed of the staff and even the very location where "programming" took place. Children who were normally withdrawn and uncommunicative would start to cry and scream incoherently when approaching the program site. This uncharacteristic behavior should have spoken loudly and clearly to the professionals. It certainly did to the parents.

Others have told us of how preschool children are regularly forced to sit still for an hour or more at a time, until they "get the task right". Yet even the producers of Sesame Street realize that their preschool-aged audience has an attention span of a few minutes at best, and their programs are developed accordingly.

Somehow we've lost sight of our priorities in working with these children. The achievement of a task becomes more important than reaching the child, establishing rapport, and somehow finding a way to communicate with him/her. We approach these children as "problems" needing to be "corrected" or broken objects needing to be "fixed". Although I'm sure it isn't intended, the end result is that we are making the child the "failing", the "defect", the "imperfection". As adults, how about if we take the responsibility instead of heaping it on the children's tiny shoulders? Instead of seeing the children as "problems" why not view them as small human beings, and very young and inexperienced ones at that? Perhaps we are the failures, for we haven't found the way to reach these children (or at least we don't think we have). I'd never make the assumption that because a child is unresponsive, he/she does not hear or understand. Many physicians would tell you that people in a light coma are aware of their surroundings. Why then are we so quick to conclude that these awake and active children aren't receiving the input we give them? Maybe they're processing the information differently. Who knows, maybe their way is superior to ours and they've developed beyond our meager ability to comprehend. I would say that refusing to sit in a chair for hours and do meaningless tasks, or refusing to say "seven" just because some overbearing adult demands it, or learning to trade urine for candy are pretty good evidence that these kids know exactly what is going on around them, and have correctly judged its (lack of) value.

You may say that such an idea is far-fetched. Perhaps it is, but we know so little about autism, and for the most part what we think we know is just speculation. Don't you think it's time we started changing our assumptions and our goals for these children? Those of you who have preschoolers without disabilities, would you ever keep your child awake for eighteen hours straight just so he/she would count to ten properly? My guess is no. In fact, you probably can't wait for them to go to bed so you can rest a bit.

ABA is the only program the New York State Department of Health (DOH) deems "appropriate" for the treatment of children with autism, even though many other proven and successful approaches exist. Parents are being denied information about those alternatives. Taxpayers are funding a treatment with often questionable practices. DOH, for reasons known only to them, is promoting one single treatment option in an era of "choice". Children are being made the innocent victims, forced to suffer the consequences of DOH's policies and our inaction.

It disturbs and outrages me that what would be unacceptably disrespectful or inhumane treatment for a nondisabled individual is often accepted as the norm, justifiable and necessary for those with disabilities. It's time for us to open our eyes and other senses to what is happening around us. And if it is ugly, stinks, hurts, sounds awful, and leaves a bad taste in our mouths, and if it isn't something we'd like to go through ourselves, then let's put a stop to it now!

Find the Facts!

On what date will work activity no longer trigger a CDR?
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

All Hail Our Last Winner!
Linda McColgin of Johnson City

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 1999


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

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.

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.


Accessibility Services Expanded

by Darlene Dickinson

Hey! STIC is working hard to make it easier for all of us to access our world! We've expanded our accessibility services for consumers, businesses, public officials, and others. My name is Darlene Dickinson and I've just taken a new position here at STIC! One part of my job is to provide information on assistive technology and funding to consumers, families, and agencies. I am also here to offer advocacy to any consumer who is dealing with an accessibility issue.

Accessibility includes everything from parking spaces and ramps to braille signage in public places, sign language interpreters at meetings and appointments (or wherever you need them), and much more. There is no charge to consumers for this service. So, if you need advice, advocacy, and an ear, that's what I'm here for! Give me a call.

I also offer consulting services to any individual or organization working to make their facility compliant with the ADA accessibility guidelines. I can assess your building's current accessibility problems, and help you design a plan to make it compliant with ADA guidelines. There is a fee for consulting services.

For more information on either access advocacy or consulting services call STIC at 724-2111 (voice/TTY) and ask for Darlene. That's me!

Annual Campaign Doldrums

STIC's tenth Annual Campaign is not doing quite as well as last year's did. Last year we raised $4,200. This year's goal is $5,000, but we still haven't reached the $4,000 mark.

We hope all of you have had a prosperous year and that you've just been waiting to make your contribution as a holiday gift. If that's so, 'tis the season! Now's the time! Strike while the snow is cold, and make your tax-deductible gift to STIC. If you don't still have the return form, just make a note on the check that it's for the "annual campaign".


You're invited to attend a FREE

Obtain information on programs that provide assistance for low & middle-income families with obtaining mortgages, grants, home repairs/ramps, and counseling on home purchase/ownership.
3 locations:

*Owego: Monday January 10th., 2-4 pm
At: Tioga Opportunities
9 Sheldon Guile Blvd., Owego

*Norwich: Tuesday January 11th., 1-3 pm
At:Opportunities for Chenango
44 West Main St., Norwich

*Binghamton: Wednesday, January 12th., 1-4 pm
At: Southern Tier Independence Center
24 Prospect Ave., Binghamton
(between Greyhound and Shortline)
Presented by Southern Tier Independence Center
and the following participating agencies:
In all 3 locations: Rural Development - Habitat for Humanity (county affiliates) - Rob Davies--OMRDD Housing Office - plus, in Owego: Tioga Opportunities--Housing Services - Bishop Sheen Ecumenical Housing Foundation Norwich: Opportunities for Chenango--Housing Services Binghamton: First Ward Action Council - City of Binghamton Housing Department - Town of Union Housing Department - Metro Interfaith Housing Counseling Program
RSVP to Laura Nuccio
724-2111 x 307 (voice/TTY)

The Honor Roll

Our annual awards luncheon was held on September 28, 1999. Here you will find, arrayed before you, people who have gone above and beyond the call of duty to support STIC, the people we serve, and/or the disability community and its interests. They deserve all the recognition we can provide. And, as you read through the list, you'll probably note an unexpected benefit of outstanding service to our cause-you may well be hired to work here!
Commitment to Community Service
Broome Developmental Services High Risk Birth Clinic - Stan Wanglund

For implementing the Independent Living philosophy in their work with families of young children with disabilities, and for their collaborative and positive relationship with STIC.

Parents Empowering Parents (PEP)
Lila Acker, Co-Facilitator

For extraordinarily successful outreach to parents of children with disabilities to involve them in supporting and advocating for each other, and for creation of our TRAID Center's Allie Acker Room and helping people to obtain assistive technology.
Outstanding Accessibility Achievement
First Night
Naima Kradjian & Ann Reyen

For tireless efforts to get consumer input to create the most accessible annual First Night event in the state, and perhaps in the nation.
Outstanding Business Support
Dr. Oscar Astur

For donating employment physical examinations for CDPA personal assistants.

United Health Services
Mark O'Neil, CEO

Visions Federal Credit Union
Frank Berrish, CEO

For principal co-sponsorship of our 1999 STICKS for STIC Golf Tournament.
Outstanding Consumer Achievement
Jason Beebe

For being a highly-motivated and successful role model in a job considered "nontraditional" for people with disabilities in supported employment.
Outstanding Employment Assistance
AA Dairy

For creative and resourceful job accommodations beyond all expectations to enable a person with a disability to hold a highly difficult and responsible job.

Kohl's - Scott Timperley

For extraordinary commitment to hiring people with disabilities and thorough understanding of the ADA and job accommodations.

Dawn Stone

For creative job coaching and tireless belief in the potential of people with disabilities.
Outstanding Fundraising Effort
Alex DePersis, CEO
BSB Bank & Trust

For soliciting major corporate sponsors for our golf tournament and helping us develop an effective package of sponsorship levels.

Gary Hart
BSB Bank & Trust

For serving with distinction for several years as our entree to key corporate leaders to enable us to gain their support.

Kathryn Koehler

For persistence and creativity in obtaining prize donations for our golf tournament.
Outstanding Intern Service
Pola Beagle

For excellent performance and growth as a social work intern.

Darlene Dickinson

For unprecedented sharpness in assisting our Blind Mentoring project with support groups, technology demonstrations, and other things.
Outstanding Statewide Support of Independent Living
Jeff Lovell, Governor's Deputy Secretary

For steadfast support of Centers for Independent Living for 15 years, mostly as a State Senate staffer, more recently while working for the Governor, where he was instrumental in gaining the Governor's support for the funding increase for CILs in the 1999-2000 budget.
Outstanding Volunteer Service
Chris Bagnetto

For extreme cheerfulness and pleasantry while answering phones and helping out in any way needed.

New Program! NYS CARES Outreach

NYS CARES is New York's 5-year plan to increase community-based services for people with developmental disabilities. The idea is to come as close as possible to eliminating the waiting list for those services with a huge influx of new money.

STIC has a new program to provide Person Centered Planning Outreach to people on the NYS CARES waiting list. We have received a one-year grant from the NYS Developmental Disabilities Planning Council to provide the service in the six counties served by Broome Developmental Services: Broome, Chenango, Delaware, Otsego, Tioga and Tompkins Counties.

Beginning in January, our Person Centered Planning Outreach Coordinator will be available to provide group training and individual consultation on person-centered planning and all of the options available to people with developmental disabilities for support in the community. She'll be there to help with questions like, "How do I run a person-centered planning meeting?" "Who should I ask to be in my circle of support?" "What options are out there for integrated accessible housing?" "Who can provide reliable attendant services?" "Can I find some volunteer work to do while I'm deciding what I want to do for a living?" "How can my child really be safe and secure if she doesn't live in an institution?" The Coordinator will work 30 hours per week on a flexible schedule, including evenings and weekends, in order to meet with as many people with developmental disabilities, family members, circles of support, and service providers as possible. The Coordinator will also chair the Southern Tier Self Determination Task Force and work with the NYS Self Advocacy Association, OMRDD Central, and the Statewide Self Determination Task Force to ensure that our community knows about cutting-edge developments in supporting people with disabilities in the community with dignity and choice.

We'll be working closely with Broome Developmental Services to get the word out to all the people on the NYS CARES waiting list. It's a creative partnership we are looking forward to.

Peer Counseling Expands

by Joy Earthdancer

I am writing to introduce myself to everyone.

I am Joy Earthdancer. I have been with STIC since March of this year. The first question I am always asked is about my name. Yes, it is my legal name and I adopted it to honor my Native American great-grandmother, who was a full member of the Delaware Nation.

Since March I have been working part-time with a Transition project that is a partnership between STIC and the Johnson City School District. The project supports disabled students as they make the transition from high school to the world of work and independence.

Recently, I began to devote the other half of my day to peer counseling, working with the supervision of Susan Link. I am happy to have the opportunity to share the knowledge I have gained through years of living with a sometimes disabling condition and to offer my support and energy to the community that is Southern Tier Independence Center.

Tech Team Try-Outs

STIC has been chosen to participate in "Teaming for Technology" (TFT), a project of Broome United Way, IBM, and other community-minded businesses. TFT helps not-for-profit agencies obtain computer and other electronic technology equipment, software, and training.

This fall we worked with the TFT folks to assess our technology capabilities, unmet needs, and future goals. Next we'll be putting together a plan to use technology to make our operations more efficient. We'd like to say thanks to the TFT project.


Autism Treatment Protests Continue

On September 17, Parents Empowering Parents (PEP) held a demonstration at the groundbreaking for the Binghamton University Institute for Child Development's new building. The Institute's Children's Unit for Treatment and Evaluation practices Applied Behavioral Analysis (ABA), a form of behavior modification. The protestors carried signs saying "Child Abuse Disguised as Research," "Autistic Children's Dignity Destroyed Here," and "Children Are Not Lab Rats." Parents recounted instances of abuse, such as restraining a child by placing a chair on top of her, and bruises found on children's skin following restraint.

The protest reflected growing dissatisfaction with ABA and with public policy regarding it. Earlier this year, the NYS Department of Health (DOH) released guidelines that deemed ABA the only acceptable treatment for children with autism and claimed that other approaches were without merit. Families who had experienced success with other approaches were outraged and expressed concern that the official DOH guidelines would result in unavailability of state or school district funding for any autism treatment except ABA.

The DOH guidelines have excited protests around the state and nation. In Volume 13, Issue No. 3 of Autism Research Review International, the periodical's respected editor, Bernard Rimland, Ph.D., wrote that he supports ABA and believes it is effective in many cases. He then said, "Having said that, I must tell you that I am dismayed and appalled at the ludicrous position taken by many other supporters ... who claim that ABA is the only scientifically validated treatment for autism. That position is not only false, it is absurd." Rimland criticized DOH's action, and pointed out that in some cases, research validating other autism treatments is more scientifically reliable than that supporting ABA.

Catharine Church, Director of the Pediatric Center for Autism at the SUNY Health Science Center in Syracuse, in a letter to the DOH Commissioner, called the DOH guidelines "narrow, close-minded, politically motivated..." She accused DOH of "stacking" the review panel that produced the guidelines with "professionals interested in forwarding their own agenda, [ABA]" in order to "feed their pocketbooks as therapists." She concluded, "Children have autism. They are creative, thinking, and changing individuals who deserve creative approaches to intervention. To suggest that there is only one way to treat all children with this disorder is short sighted."

Courting Disaster

Five recent federal court cases show that the legal attack on disability rights is alive and well, and gaining momentum.

C.B. Alsbrook v AR Commission on Law

Alsbrook was an Arkansas police officer whose minor visual impairment disqualified him from police work. He was hired on a waiver based on a doctor's note saying that his impairment would have no effect on his ability to perform his duties. At some point the waiver was ignored and Alsbrook was fired.

Alsbrook sued under Title II of the ADA, which requires states to provide services to people with disabilities in the most integrated setting appropriate to their needs, and to make "reasonable modifications" of their policies and programs when necessary to achieve that end.

One would think Title II doesn't apply here, since Alsbrook wasn't looking for services, but alleging job discrimination. However, it's become customary, for obscure legal reasons, to consider any ADA action against a government entity under Title II. So, Arkansas argued that Alsbrook couldn't sue because the 11th. Amendment to the Constitution says states can't be sued in federal court without their permission. The 14th. Amendment, enacted after the Civil War, provided that Congress could abrogate the 11th. Amendment in order to right wrongs related to discrimination, and the arguments in this case hinged on whether Congress had exceeded the "limited" authority granted by the 14th. Amendment to do so.

On July 23, 1999 the Eighth Circuit Court of Appeals found that Congress had exceeded its authority in enacting Title II, and therefore Title II is unconstitutional. The Court agreed that Congress had expressly stated in the ADA that it intended to abrogate the 11th. Amendment, and had extensively documented pervasive discrimination against people with disabilities as grounds for doing so. The Supreme Court has held that these steps are necessary for a constitutional exercise of the abrogation power. However, the Circuit Court said Congress did not document specific instances of discrimination against people with disabilities by states, and that requiring any state or local government program to make "reasonable modifications", even of policies that are based on "rational" grounds, was acting too broadly. The Court also noted that many states have outlawed some forms of discrimination against people with disabilities, implying that states aren't deliberately trying to discriminate, so no great "mischief or wrong" needs to be corrected as envisioned by the 14th. Amendment.

In a later case, Denise DeBose v. State of Nebraska, the state fired two people, alleging that they weren't doing their jobs. The employees sued under Title I of the ADA, which outlaws job discrimination due to disability and requires employers to make "reasonable accommodations" to enable "otherwise qualified" people with disabilities to work. The plaintiffs said they experienced mental illness-depression-and that the state had not accommodated their disability. Nebraska used the 11th. Amendment defense, and when the case reached the Eighth Circuit, the Court said the reasoning it used in Alsbrook regarding Title II is just as applicable to Title I, rendering Title I unconstitutional when applied to government as an employer.

The 11th. Amendment simply says that citizens of one state can't sue another state without its permission. Following the Civil War, however, the Supreme Court decided that the concept of a state's immunity from suit is a basic principle of federalism and should apply to any suits against a state. This is a good example of the freedom federal courts have to "make new law." (Over the years, courts have done this to benefit both "liberal" and "conservative" causes. Those who've kept quiet about it when courts created law they approved of have no grounds for complaining that courts are "exceeding their powers" when they make up something out of whole cloth that they don't like.)

Which is what the Eighth Circuit did. Possibly the most conservative appeals court in the nation, it certainly did so out of a political agenda. It also did it in full awareness that four other Circuit Courts had ruled that Title II is constitutional after considering the same basic issues. So it will be up to the Supreme Court to decide the question, and in light of its recent decisions broadening the reach of the 11th. Amendment, there may not be much reason for hope.

Richard C. v Houstoun

Pennsylvania had signed a legal settlement agreement that required it to place the residents of a mental retardation institution into community programs. Somebody didn't want somebody moved out of the institution and sued based on the recent Supreme Court LC v Olmstead decision. In LC, the Court said states must provide community based services if such placement is "appropriate", the person doesn't oppose it, and the state can do it without it being an undue burden or fundamental alteration of its programs, in light of the state's resources and "the needs of others". In rejecting the plaintiff's argument that he had a right to stay in the institution because he opposes community placement, a federal district court ruled that the LC decision is only about the ADA. It doesn't preclude a state from executing a plan unrelated to the ADA to close an institution and move everyone into the community, and therefore the ADA doesn't confer a "right to institutionalization." This is a victory, but before we celebrate too much, we should consider a few points. This is a district court decision, subject to review by the Court of Appeals and the Supreme Court. It's not finished. Also, the very existence of this case shows that pro-segregation forces are aware of the implications of the LC decision and will try to enforce a right to institutionalization if they can.

Rodriguez v City of New York

In this case a person with Alzheimers disease wanted personal care assistants to provide "safety monitoring". The person was told that New York City has personal care programs, but none of them provide safety monitoring; attendants are limited to physical personal care tasks. This was probably a liability issue for the provider. While in practical terms, any attendant would be required and expected to prevent harm or injury to any person receiving his/her services, documenting that such prevention is the purpose of providing the attendant would open the provider to a whole new world of liability--or at least, so providers fear.

Without the safety monitoring, the person with Alzheimers would have to go to a nursing home. So suit was filed based on the LC decision, claiming that since the City already provided personal care, it would be reasonable for it to modify its program to allow safety monitoring to ensure that a person with a cognitive disability who requires supervision could be in the most integrated environment--his/her own home. The Second Circuit Court of Appeals, in an absurdly incompetent misinterpretation of LC, disagreed. It abandoned the idea of "reasonable modification" entirely and ruled that a government must move someone to a more integrated environment only if it already has in existence the specific program or service the person needs to remain in that environment-in other words, "reasonable modification" is not really ever required. It also made the classic error of claiming that there was no discrimination under the ADA in this case because there was no issue of people with disabilities being treated differently from nondisabled people-reasoning that the Supreme Court specifically said was wrong.

As one advocate pointed out, "Under this test, even wheelchair ramps are not required to be provided under the ADA, because the state does not make ramps available to anyone!"

Thomas Bradley v Arkansas Department of Education

David Bradley and Jim C. were students with disabilities in Arkansas. Their parents filed suit under the Individuals with Disabilities Education Act (IDEA), and Jim C.'s parents filed under Section 504 of the Rehabilitation Act, to protest educational decisions made by their school districts. Lower courts ruled in their favor, and Arkansas appealed on the basis of the 11th. Amendment to the Eighth Circuit, where the cases were joined due to similar issues. The Eighth Circuit ruled that Congress did not adequately justify IDEA's abrogation of the 11th. Amendment on 14th. Amendment grounds, but that this point is moot because Congress acted properly in requiring states to give up their 11th. Amendment immunity claims when they accept IDEA funding, since violation would only result in loss of IDEA funding for education programs. However, the Court found differently regarding Section 504. Section 504 forbids any entity that gets any form of federal funding to discriminate against people with disabilities in programs or services. The Circuit Court cited legal precedents that say this sort of thing can only be done if it is a "valid exercise of Congress' spending power." The Court found Section 504 to be broadly and excessively coercive, and therefore not a valid exercise. It ruled Section 504, and by extension, any other federal law that requires a state to do something on pain of losing all federal funding, unconstitutional.

Jim and David were able to return to District Court to obtain relief under IDEA, but in the Eighth Circuit at least, Section 504 is dead, and a clear signal has been sent to Congress that all it needs to do to kill IDEA is to uncouple funding from it. The Court did find that the 11th. Amendment doesn't prevent people from seeking "prospective injunctive relief against state officials". In other words, state officials who are subject of a suit, but not the state, can be told "don't do it again," but can't be made to reverse the acts that resulted in the suit. Big deal. As far as we can see, there is no penalty for a state official who violates such an injunction.

If last summer's dirty deeds by the Supreme Court weren't enough to frighten people, these decisions ought to do the trick. It is time for the disability "leadership" to recognize that we are on the verge of losing everything, that their cozy beltway relationships with the party in power will not save us, and that we need to get back out in the streets and hit HARD at those who are destroying our rights in the name of protecting "states' rights". How does increasing the executive branch of government's power to ignore rights conferred on the people by the legislative branch reduce "big government"?

Court Victory Over Greyhound

by Marilyn Golden, Disability Rights Education and Defense Fund (DREDF)

Good news for advocates of access to Greyhound! On September 10, the US District Court for the District of Columbia granted summary judgement to the Department of Transportation (DOT) in the lawsuit challenging DOT's final regulation on over-the-road buses (OTRBs) used by private entities, American Bus Association v. Rodney Slater. This means that DOT has won the lawsuit at the district court level. Even though an appeal is expected, this is an important victory for DOT's regulation requiring Greyhound and other fixed-route OTRB companies to purchase only accessible buses after October 2000.

In the next few months, we expect DOT to publish a final regulation on information collection by private companies using OTRBs. Many disability advocates wrote letters, creating a strong docket that we hope will result in DOT requiring these companies to provide adequate documentation, confirmation numbers, etc. to people with disabilities who request accessible service.

Advocates should remember that, after October 2001 for large companies, and October 2002 for small companies, if an individual with a disability who needs an accessible bus requests, but does not receive, accessible service, the company is required to pay financial compensation to the individual of between $300 and $700. This compensation is also available if the individual does not receive the service because accessibility equipment does not function or because operator personnel do not perform essential tasks.

More information can be found at

Rebuilding MiCASSA for Y2K

The Medicaid Community Attendant Services and Supports Act (MiCASSA) returned to the spotlight as the 1999 Congressional session ended. On November 16, 1999, Senators Tom Harkin (D-Iowa) and Arlen Spector (R-Pennsylvania) introduced MiCASSA in the Senate as S. 1935.

MiCASSA lets people who are eligible for Medicaid-funded long-term care services in a nursing home or Intermediate Care Facility for people with mental retardation (ICF-MR) choose whether to get those services in an institution or in their own home. This is needed because federal Medicaid law requires states to offer nursing home care but doesn't require home and community-based long-term care. While New York State does offer a variety of home and community-based programs, MiCASSA would go far beyond current services available here.

MiCASSA Provisions

  • Provides community attendant services and supports such as assisting with eating, using the toilet, grooming, dressing, bathing, transferring, meal planning and preparation, managing finances, shopping, household chores, phoning, participating in the community, and health-related functions.

  • Includes hands-on assistance, supervision and/or cueing, as needed, as well as help to learn, keep and enhance skills to accomplish such activities.

  • Services must be provided in the most integrated setting that meets your needs.

  • Services and supports are chosen by you and furnished according to a service plan agreed to by you and based on an assessment of functional need.

  • Services can be provided in any home or community setting, including school, work, recreation or religious facilities.

  • You can choose from various service delivery models including vouchers, direct cash payments, fiscal agents and agency providers, all of which are required to be consumer controlled. Any model can include voluntary training for you on selecting, managing and dismissing attendants.

  • If you are unable to direct your own care independently, MiCASSA lets you authorize a representative to assist. A representative might be a friend, family member, guardian, or advocate.

  • MiCASSA lets health-related functions or tasks be assigned to, delegated to, or performed by unlicensed personal attendants.

  • It covers your transition costs from a nursing facility or ICF-MR to a home setting, for example: rent and utility deposits, bedding, basic kitchen supplies and other necessities required for the transition.

  • It serves people with incomes above the current institutional income limitation-if a state chooses to waive this limitation to enhance the potential for employment.

MiCASSA lets states limit the total amount they spend on long term care in a year under MiCASSA to the amount they would have spent on institutional services for the same people during the year.

MiCASSA provides grants to help states move from institutionally dominated service systems to ones focused on community services and supports. Each state would have a Consumer Task Force to plan the changes. Most of its members must be people with disabilities or their representatives. The federal government would also review regulations and financing systems to identify where changes can be made.

MiCASSA includes the best of NY's existing programs while adding improvements. It offers the consumer control of Consumer Directed Personal Assistance, but lets you vary the amount of responsibility you take on, and has potential for 24-hour care, since the only limit is that MiCASSA services cost no more than the institution you'd otherwise be in. MiCASSA covers everything OMRDD Day or Residential Habilitation offers but lets you control who provides the services and how. It helps anyone with a disability with the costs of moving from an institution to their own home, which OMRDD's ISS program does today only for people with developmental disabilities.

MiCASSA needs your support. To learn how you can help, stay tuned here, and at STIC's website: (

Self Determined Nation

Broome Developmental Services (BDS)'s Self Determination pilot project kept moving forward this fall.

BDS can enroll 7-8 people in the project. At the initial deadline, only 5 applications had been received (and one was later withdrawn). So BDS extended the deadline to November 2. Meanwhile, BDS's Self Determination Committee (involving parents, consumers, and representatives of BDS and other agencies, including STIC) reviewed the applications and recommended that all be approved. OMRDD Central Office accepted those recommendations. Four more applications came in before the new deadline; as we went to press, those proposals were still under review, with decisions expected about the time you receive this. BDS also identified several agencies that are interested in being fiscal intermediaries.

What is Self Determination?

Self Determination is a new way for people with developmental disabilities to achieve the lives they want. It involves freedom to make choices about what to do and where to live; authority to control the planning and funds used to implement those choices; enough paid and unpaid support, controlled by you, to make safe, productive and happy life in the community possible; and responsibility to use government funds wisely and to help support yourself and the community through paid and/or volunteer work.

Self Determination isn't a "program" or "service". It has no "service menus" or "approved providers". You're free to find work and recreation the same way most other people do-through "who you know", and free to live like everyone else-in homes you choose with or without people you choose.

You and your circle of support-people chosen by you, and only you-figure out what your dream is and how to get it through person-centered planning. You and your circle control a portable individual budget to carry out your plans. When you want to buy a good or service, an independent fiscal intermediary, who provides no other services to you, writes the checks and keeps track of the books. You can have a service coordinator make sure things get done, and/or you can have one or more support brokers do things like help you meet new people, find an apartment, learn a trade, start a business, or anything else you need. Your service coordinator and support brokers must sign an agreement that says that when it comes to working with you, they answer only to you, not to any agency they may also work for. If you aren't satisfied with any service or support, you can take your money somewhere else to get a better deal, and that includes firing your service coordinator or any of your other employees.

What's Going On with Self Determination?

The pilot project is a learning process for OMRDD and BDS, and for the participants. We're still ironing things out along the way.

This fall OMRDD was still designing the method for assigning a lump-sum budget to participants. The method, the "Personal Resource Account", has good and bad points. Using statistics, they created a matrix (chart) that's tied to information about you from the DDP IV ("Developmental Disabilities Profile Four") form. This standardized computer form lists your needs and abilities. If you get OMRDD services or you're on the waiting list, you have a DDP IV. Depending on what's on your form, the matrix shows how much money should be in your Personal Resource Account. The more supports and services you need, the larger the amount. The good part about this is that they can decide how much to put in your account whether you've ever received services or not. The bad part is that people receiving very expensive developmental center or ICF services won't get as much as is being spent on them now. OMRDD says those amounts are inflated, and that if you can show that your account isn't big enough for what you truly need, you can get more. As best we can tell, OMRDD is waiting for the state budgeting bureaucracy to approve the plan before releasing the Personal Resource Account.

Meanwhile, the first participants were trained in how to set up circles of support, and should be working on that now. The circles will use person-centered planning to help participants define their dreams for living and working, and develop a plan to achieve them. Then they'll budget the Personal Resource Account money to carry out the plan.

STIC's new NYS CARES Person Centered Planning and Outreach program will be available to them as a resource for learning to plan and use all the options available.

Work Incentives Improvement Act of 1999

In the last hours of the Congressional session, a Work Incentives Improvement Act (WIIA) was agreed to by House-Senate conferees and passed by both houses. The President is expected to sign it.

The bill continues the optional Medicaid buy-in program that was created as part of the Balanced Budget Act of 1997, with some improvements. States can ignore the income eligibility limit of 250% of the federal poverty level, allowing them to set higher income, unearned income, and resource limits. This would let people earn a decent living but still have access to Medicaid, which is the ONLY source of life-long medical insurance coverage for prescriptions, medical supplies and equipment, and personal attendants in the United States. States will also have the option to let people with disabilities keep Medicaid coverage even though their medical condition has improved as a result of that coverage.

We believe these buy-ins can be available to people regardless of whether they receive SSI or SSDI; in other words, the requirement that if you get SSDI you have to use Medicare (which doesn't cover prescriptions or attendants) instead of Medicaid would be gone. We're still checking on this.

Note two important points. This is a buy-in, not a give-away. If your income exceeds the current Medicaid eligibility threshold, you will have to pay something for Medicaid coverage, and the more you earn, the more you will pay. However, if your income is between 250% and 450% of the federal poverty level, your annual premium can't exceed 7.5% of your income. Also, this program is optional for states. States don't have to offer it. New York has refused to offer the 1997 version of the Medicaid buy-in, claiming it would cost too much.

Fortunately, WIIA provides $150 million over 5 years in "health care infrastructure grants" to states to support people with disabilities who return to work. These grants could be used by states to cover virtually any costs of offering the Medicaid buy-in. On the other hand, states don't have to offer the buy-in to get the grants, and $150 million over 5 years divided by 50 states is less than $1 million per year per state. The money may be distributed on the basis of population, but it still doesn't amount to much and may not be very attractive.

WIIA provides $350 million over 6 years for state demonstrations to assess the effectiveness of providing Medicaid coverage to people whose condition has not yet deteriorated enough to prevent work and who need health care to keep that from happening. For example, a person with muscular dystrophy, Parkinson's disease, or diabetes may be able to keep working with appropriate health care, but that care may only be available once they can't work any more and their incomes drop low enough to qualify for Medicaid or Medicare. This demonstration will probably show that it's cheaper in the long run to provide medical coverage early, because it will keep many people from ever becoming too disabled to work.

People with a work history who become disabled are eligible for Social Security Disability Insurance (SSDI) and Medicare. WIIA extends Medicare Part A and Part B premium coverage for people on SSDI who return to work for 4 1/2 years beyond the current cut-off. In other words, people would have to pay only the Part B premium of $45.50 per month for full Medicare coverage for a total of 7.5 years after SSDI cash benefits cease. This is a federal mandate, not a state option, so it will be available everywhere, for what it's worth-which, most people with significant disabilities will say, isn't much, because Medicare doesn't cover prescriptions or attendants.

WIIA also has the "Ticket to Work Program." If you get SSI or SSDI and want to go back to work, you'll get a voucher ("ticket") that you can use to purchase vocational rehabilitation and employment services from the participating provider of your choice, without going through VESID or CBVH. Your preferred provider may not participate, though. Providers get a partial payment when you get a job; the rest comes after you've kept the job for a certain length of time. Since STIC's Job Connections supported employment program serves people with very involved needs for job readiness and placement, it can take months or years to find jobs for them. We can't operate without cash coming in to pay our staff, so we won't be accepting "tickets". Chances are, only agencies that work with easy to place people will take part. While you use your "ticket", you won't face Continuing Disability Reviews (CDRs).

There is a provision to provide "expedited re-entry" for people whose SSI or SSDI has been terminated due to work activity. Under this provision in some cases if you can no longer work due to your disability your benefits can be immediately reinstated without reapplying. Effective January 1, 2002, work activity cannot trigger a CDR.

The Social Security Administration is required to conduct a demonstration project wherein SSDI recipients' benefits would be reduced by $1 for every $2 earned in gainful employment, to determine if this would be more effective in getting people back to work than the current all-or-nothing "substantial gainful activity" cut-off.

The struggle to pass this law was monumental. There was overwhelming rank and file support for it in both houses of Congress. However, keeping the federal budget balanced means that when a program requires new money to be spent, that money must be found by either cutting some other program or raising taxes or fees. These are called "pay-fors". The Senate passed its version without any. The House was forced to deal with them. Budgets are balanced from year to year, so they couldn't consider the fact that while the law will cost some money to get started, over several years it will cut Social Security spending and increase tax revenues by getting people off the dole and into well-paid jobs. The House's version was seriously weakened because House members couldn't agree on enough pay-fors to fund most of its provisions. However, well-organized disability advocates, including those of you who followed STIC's website alerts, kept the pressure on and forced the House-Senate conferees, who had the job of reconciling the two versions into one bill, to come up with enough money to restore most of the bill's original points.

Then, at the last minute, Senate Majority Leader Trent Lott, for reasons known only to him, tried to kill the bill by attaching a $30 billion tax cut to it. The tax cut had no pay-fors and Lott knew Clinton would veto it, or any bill containing it. Once again, grassroots advocacy forced reason to prevail, and the tax cut was dropped.

The final version of WIIA is not all we would have desired. It is weaker than the original bills in the areas of expedited re-entry, reducing CDRs (the provision is delayed for 2 years), and in incentives for states to adopt the buy-in (the original House and Senate bills required states to offer personal assistance services and the buy-in in order to receive the "infrastructure grants"). And the work has only begun, because we will have to push the Pataki Administration very hard to get the law's most important feature, the Medicaid buy-in, made available in New York. Rest well over the holidays, because that will be our struggle for next year.


Words & Music by Steve Holmes

Jesus Is a Member of My Circle of Support

I'm inviting some friends to a meeting
To help me plan my life
I want a real job, my own place
Maybe someday a wife
With all these friends plus One other
There'll be no problems to report, cause
Jesus is a member of my circle of support

Jesus is a member of my circle of support
Of support, of support
Jesus is a member of my circle of support

I'm a Deacon in a local church uptown
Sunday's my favorite day
I like to talk about freedom
I like to show my friends the way
When people say I can't do something
I have a quick retort, I tell them:
Jesus is a member of my circle of support

You can't do this, you can't do that
I hear it all the time
When will people realize
That this life is mine,
They keep worrying about my safety
They guard my health like a fort
But I tell them don't worry, cause
Jesus is a member of my circle of support

I Aint No Slot
(dedicated to Tony Phillips)

You can't roll me
You can't fold me up
And put me in a slot
Cause a slot I'm not

When are you going to get it in your head
That I ain't no bed
Get it in your head

And I ain't no unit of service either
I could not believe her
When she called us slots

I ain't no slot
I ain't no slot
And I'm not a bed
Get it in your head

(repeat all stanzas)

We Don't Need No Bowling Program

I don't know if you can understand
What we're trying to say
How would you like to live your life
With a program for every day
How would you like to have no friends
In the city where you live
How would you like to be held back
When you had so much to give


We don't need a bowling program
We just wanna bowl
When we go out in our communities
We want to be part of the whole
We don't want to be special
Treat us like everyone else
We don't want to be special
We just want to be ourselves

If you want to help us
Give us a ride to town
Help us meet some people
Who just want to hang around
Who like to get to know us
I think they'd like to know me
Take us to where we belong
A place in our community

Some of us would like to join theatre groups
Others political campaigns
Some of us would like to be volunteers
Others join in pick-up softball games
Think about the things you like to do
We like to do them too
Think about the people whose minds need to change
How about starting with you

Get Ready to Mumble

Get ready to mumble
It's a bureaucrats tongue tumble
It's the art of speaking in jumbles
Get ready! Are you ready!
Get ready to mumble?

Hey I'd like to buy my own home
I like to try to live on my own
No no no no no no no no no
I don't think so
No no no no no no no no no
I don't think so

I met a girl the other day
I'd like to take her on a date
No no no no no no no no no
I don't think so
No no no no no no no no no
I don't think so

Get ready to mumble
It's a bureaucrats tongue tumble
It's the art of speaking in jumbles
Get ready! Are you ready!
Let's do lunch and mumble

I'd like to change case managers
Why won't people listen to me
We'll have to wait and see
I'll send a memo to you
You send one to me

Get ready to mumble
It's a bureaucrats tongue tumble
It's the art of speaking in jumbles
Get ready! Are you ready!
Get ready to mumble?

I want to hire my own staff
I'd like to follow my own path
We'll get back to you on that
Might take a while, we'll let you know
Which means
No no no no no no no no no
I don't think so
No no no no no no no no no
I don't think so

Get ready to mumble
It's a bureaucrats tongue tumble
It's the art of speaking in jumbles
Get ready! Are you ready!
Get ready to mumble?

Steve Holmes is the Administrative Coordinator for the Self Advocacy Association of New York State. These songs come from his 30 years of experience working with and for people with developmental disabilities. The words always reflect what the Self Advocates say; often they're direct quotes.


D.E.A.F. Meetings Schedule

Every third Tuesday every month unless there is a holiday conflict or other reason

5 PM Social
5:30 PM Meeting

Pat's Corner

by Pat Charma

Hi everyone! Hope you had a nice fall season? Weren't the colors beautiful? I had a great fall season! I was able to do lots of work on my house and it looks so much better now than when we moved in. We still have more work to do, but it should be done soon, I hope.

Deaf Club had its annual summer picnic at Jody Weidemann's house. She lives in the country, it is so pretty out there. The picnic was in June, and some of my close friends also planned a surprise 45th. birthday party for me. I hate surprises! But, I was pleasantly surprised and really enjoy the gift everyone chipped in for-a beautiful rocking chair (that I always wanted) from the Cracker Barrel restaurant. Thank you all very, very much! I use it often and really love it. I am sure everyone had a wonderful time this year.

In September, before Labor Day, we had another picnic. This one was at Chenango Valley State Park. We couldn't have asked for better weather. It was fun meeting new people and seeing old friends. The food was very good. I hope next year to see even more people there.

November 13 was our annual Thanksgiving dinner at the American Legion in Johnson City. The food-I have to tell you, the food was DELICIOUS! Marcus Morgan is a very good cook. Al Sabatelli was a wonderful helper. We also had a belated 60th. birthday party for Shirley Cleveland. We sang Happy Birthday to her and other deafies with November birthdays. Shirley says, "Many thanks for the nice birthday card, and the money. It was very thoughtful of you. I will use it for any needs I may have in the future. Thanks again!"

I would like to wish everyone very happy holidays. Also, have a safe and happy New Millennium!

Southern Tier Deaf Club 2000 Schedule

January 8
Social - 6 pm
Meeting - 7 pm

February 5
Valentine Party
6 pm

March 4
St. Patrick's Day Party
6 pm

April 1
Easter Party
6 pm

May 6
Brandywine Lanes, Binghamton
12 pm
7 pm

June 3


Community Care Network of Nichols

The CCNN is a special project for community health improvement for the people of the town and village of Nichols.

Community Care Nurses will provide education and counseling on health issues such as smoking cessation, how to arrange for homecare, options for obtaining medications for families with limited resources, and considering whether new medicines, (herbal and otherwise) or treatments are right for you.

CCNN will also follow up on referrals, and help people apply for various forms of medical assistance. This is a free service. Call CCNN at 699-0524.

STIC Support Groups

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

Meets: Every Monday
11:00 am
Contact: Theresa Northup

Parents Empowering Parents

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


FOR SALE: Standing Frame. Many health benefits: improves circulation, lessens muscle spasms and risk of pressure sores. Call Danny at 724-2111 for details.


Winter 1999-2000
Issue No. 57