AccessAbility

12/24/98 - 1/3/99
See you January 4!

Some observations on braille may be appropriate since many of us are braille readers. Presently a group known as the Unified Braille Code Committee (UBC) is considering the revision of the braille codes: math, scientific, music and the literary codes.

For many years grade II literary braille code has been the standard among the English-speaking nations, including the United States. It has served well as is for many, many years and needs little if any changes. I've suggested only a few additions myself:

1. MG for morn + the ING sign
2. YD for ye + the ST + the ER + the DAY signs--yesterday
3. WK for week
4. NT for night


We already have TD for TO + the DAY sign, TN for tonight, TM for tomorrow, and AFN for afternoon; hence as we all use these þtimeþ abbreviations, I suggested to the UBC, the Braille Authority of North America, and even the British Uniform Type Committee, the above symbols I designed. I have used them in my correspondence with fellow braille users and they have no trouble with them. Further, my concern is that we use "time words" very frequently in daily life and hence in literature and thus in braille.

Some are worried that the UBC will change grade II beyond recognition, but I'd imagine that any changes they make in the code will be conservative and easy to pick up. I'd hope they would adopt my abbreviations for the time words. But if too many changes were to be made, It'd be rather difficult for beginners.

Grade II was a vast improvement over grade I« braille because it saves space and paper and allows us to read a bit faster with comprehension.

Elmer Lee Eveland

We're inching toward our goal of $4,500 from our 9th. Annual Campaign. We know many of you like to make your gift at this time of year. Now's the time, help put us over the edge! (Well, maybe that's not the best choice of words, but you get the idea.) We've received donations right along, but only one person gave us permission to publish her name. Here she is:

THANK YOU

Rebecca Dupree

Thanks also to Bill Rincker for assistance to our Fall corporate outreach campaign.

People with disabilities keep saying they are happier and more productive when they manage their own lives and live where and how they want. But people find it hard to believe that social programs that really improve quality of life for disabled citizens are much less expensive than programs that restrict, incarcerate, and make them miserable. Well, here are 3 stories from STIC's files that prove it. (Names and minor details were changed to protect the triumphant.)

ANNA

Anna is 40 years old and has a mental illness. She is the mother of 3 small children. Due to repeated suicide attempts and hospitalizations, she lost custody and visitation rights for her children, and at one point was living in the YWCA at state expense after release from the hospital. Her rights as a mental health services recipient had never been explained to her.

We provided advocacy and non-legal assistance in dealing with social service agencies and family court; peer counseling to assist her to assess her situation, make plans to address it, and develop a support network in the community; and independent living skills training including anger management, assertiveness, domestic and shopping skills. As a result, she has had no hospitalizations in the last 18 months, has full visitation rights for all her children, and has custody of her oldest child. At peak, STIC provided peer counseling services to her for 3 hours per week, but presently she uses less than 2 hours/week of services. Anna currently receives $13/month in cash public assistance, $99/month in food stamps, and Medicaid.

Annual Cost Before IL Services: Anna averaged 3 hospitalizations/year. Medicaid pays $523/day for inpatient mental health treatment; length of stay ranges from 2-6 weeks. Estimated cost of hospitalizations: $14,644. Other tax-funded supports: $156 cash, $1,188 food stamps, YMCA--unknown, Medicaid--unknown. Total tax-funded supports: over $15,988, plus Medicaid.

Annual Cost With IL Services: Peak IL peer counseling service cost: 3 hours/week @ $15.82/hr., one year IL services at peak cost: $2,468. Other tax-funded supports: $1,344 plus Medicaid. Total tax-funded supports: $3,812 plus Medicaid.

ANNUAL SAVINGS: at least $12,176

JOE

Joe, 35, sustained a traumatic brain injury in his youth. Most of his life was spent in the MR/DD service system's custody, in various institutional or supported settings. Most recently, he lived in a supported apartment, but was unhappy with how much the MR/DD agency controlled his life and because the agency would only offer him work in a sheltered workshop.

STIC provided advocacy to help him disengage from the MR/DD custodial residential service system; peer counseling to understand his options and make plans to achieve his goals; independent living skills training to learn budgeting/banking, shopping, cooking, transportation, anger management and communication skills; and supported employment services. After a 7-month period when STIC provided 10 hours/week of services, Joe now lives on his own, has 2 part-time integrated jobs, and volunteers at STIC, where he now gets 3 hours/week of peer counseling, plus OMRDD Individual Support Services (ISS) living subsidies, and extended supported employment services. Joe also gets $498/month in Social Security Disability Income (SSDI), and Medicaid.

Annual Cost Before IL Services: Average MR/DD uncertified supported apartment cost: $6,000. Average sheltered workshop cost: $8,043. SSDI: $5,976; Medicaid--unknown. Total tax-funded supports: $20,019 plus Medicaid.

Annual Cost With IL Services: Peak IL peer counseling cost: $5,370 (current annual cost: $2,064); ISS: $2,269; extended supported employment: $3,200; SSDI: $5,976; Medicaid--unknown. Total tax-funded supports at peak service intensity: $16,815, plus Medicaid. Total current tax-funded supports: $13,509

ANNUAL SAVINGS: Year 1: $3,204

Subsequent years: $6,510

ED

Ed, a 40-year old man with cerebral palsy, had problems with romantic relationships, and as a result of inappropriate action by his legal guardian, was forced into an MR/DD Intermediate Care Facility (ICF) to keep him from moving freely in the community. As a result, he became extremely depressed, experienced frequent outbursts, and was miserably unhappy.

STIC provided non-legal advocacy that led to termination of his guardianship and release from the ICF; and peer counseling and independent living skills training as described above. Early on, services ranged from 11-17 hours per week. He now lives on his own and gets peer counseling and ISS staff support 5 hours weekly from STIC. He also gets $875/month in SSDI, and Medicaid.

Annual Cost Before IL Services: Average ICF cost: $70,000; ICF Social Security individual cash allowance @ $25/month: $300; Medicaid--unknown. Total tax-funded supports: $70,300 plus Medicaid.

Annual Cost With IL Services: Peak IL peer counseling service cost: $7,546; ISS staff support: $4,748; SSDI: $10,500; Medicaid--unknown. Total tax-funded supports: $22,794 plus Medicaid.

ANNUAL SAVINGS: $47,506

How's That Work?

STIC's Johnson City Schools Transition Worker, Mary Ellen Kelleher, gives an example of how we accomplish these life- enhancing changes, one step at a time:

What do you do when you live in an outlying area of Broome County not served by a regular bus route, you don't drive, and you need to get into town for a medical appointment, a job interview or to meet with friends? You call BC Country and arrange for a ride. However, if you have an intellectual disability, making that first call may not be so easy.

A Broome County resident, whom we'll call "Alice", was in just that situation. Alice wanted to go to the YWCA to socialize. One day a week a family member was able to drop her off at the "Y" on the way to work and pick her up on the way home. The other 6 days of the week Alice was alone at home with little to occupy her time. Loneliness, and its oft-time companion, depression, can be a great burden for those with disabilities.

STIC worked with Alice on the skills she needed to negotiate her transportation needs. Alice now arranges for rides, on her own, to physician appointments, the "Y", and with the support of STIC, soon to a regular job. Alice's new skills have given her a confidence and self-assuredness that benefits her in every aspect of her life.

It has been a long time coming and the CDPA program in Tioga County has a long road ahead. We have one very happy consumer in the program, and another looking for help so she can join the program.

Tioga is rural and has a relatively small population of available workers. The $8/hour pay for attendants will, I think, help this process. I think word of mouth will do more to keep the program growing than the structured agencies. The program has worked well in New York City for a number of years, but the much larger population, the variety of public transportation, and the constant influx of new people helps a lot. I believe we will see the program growing slower here because of the limited number of workers, but I believe it will grow.

A Consumer Directed Personal Assistant is just that. You do not need special licenses or training. You need a good reputation, a willingness to work and learn, and to be over age 18. The consumer and the assistant discuss the consumer's needs and how they like things done. The assistant needs to be very straightforward, and if they feel any job would be more than they could handle, tell the consumer. One applicant has said she prefers household chores and errands, but not personal care. That is noted in her file, and she will not be referred to those who have great personal care needs. Others prefer personal care chores and don't like housekeeping. That too is noted, so we can match consumer and potential assistants better for interviews. The consumer does the hiring and firing; time sheets are filled out weekly and signed by both the assistant and the consumer. They are mailed to STIC and a week later the paycheck arrives.

If you're interested in CDPA, call STIC at 724-2111 (voice/TTY) for applications. Tioga County residents who are on Medicaid and getting assistance through TASAP can call us or tell their case worker or Public Health Nurse and ask for a referral.

I sincerely hope Medicare and private insurers will study this program as it grows and consider it for their consumers too. It is about time those who need help got to decide who and when and how it will be provided.

If the winter weather is questionable, call 724-2111 (voice/TTY) to make sure we are open. The answering machine message will explain why we are 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 are closed. This message will always be the same no matter why we're closed because it cannot be as easily changed as the voice message.

Medicaid Equipment Lists

Recently a federal court upheld the practice of state Medicaid programs establishing limited lists of assistive technology that can be purchased by Medicaid (Desario v. Thomas). These lists are often arbitrary, even though Medicaid programs must provide "covered services" that are "medically necessary." They may exclude certain specific wheelchairs or communication systems for example, even when wheelchairs and communication systems are covered services and the specific item is medically necessary for a particular individual, if the device is not needed by "most" Medicaid recipients. The federal agency that oversees Medicaid, HCFA, has issued a "clarification" to state Medicaid directors in order to soften the blow of the Desario decision. States can't require every item on the list to be of use to "most" people on Medicaid. Decisions about what will be covered must respond to "reasonable and specific" criteria, and be made in a timely manner. There must be a way to modify or update the list, and to make exceptions to it. The criteria, the decision process, and the consumer's right to a fair hearing must be made public.

Hearing Aid Protections

People who are losing their hearing are understandably upset. Unfortunately, this can make them vulnerable to crooks who want to make a quick buck by selling them hearing aids that are defective or that simply won't work because the specific type of hearing loss doesn't respond to sound amplification. People who are losing their hearing need to know that a hearing aid isn't always the answer, and if it is, most likely a cheap aid won't work. NY State now has a consumer-protection law to address these issues. The law requires those who sell hearing aids to be over 21 and have at least two years of college and one year of training. They must also get 20 hours of continuing education every two years. All hearing aid retail businesses have to register with the state. There will be a toll-free hotline to take consumer complaints, and hearing aid retailers must post the number and put it on the bill of sale. This law takes effect on July 1, 1999.

Bike Trailer Available

Do you know of a family that likes to bike, and has an area close by where they can? Do they have a child with a disability, who cannot sit up, let alone walk? We have the perfect gift for them. We have a specially-made bike trailer that was designed by SUNY engineering students. It is designed to hold a child/young adult reclined and well-secured. We really want this to go to a child who probably doesn't get to feel the thrill of the wind in their face very often. Please, if you know of someone who could benefit from this bike trailer, give them this phone number: (607) 775- 4914. Thank you.

Well, here we are at the end of the semester and I'm being reminded of why I was happy to leave high school oh so many years ago. Too many teachers and administrators telling you what to do!

As a person with a disability I find that I bristle even more than your average bear at being told what, when and how to do something. Having had, as a result of a disability, so many personal issues out of my control, I now question anyone's right to take control of my life in even the smallest way.

Fortunately my philosophy of self-determination, personal responsibility, and questioning "authority" mirror the cornerstone of the STIC philosophy. Unfortunately, my personal philosophy and that of STIC do not mirror the philosophy of most school programs--where a questioning youth is a troublesome youth and there is a hesitancy to allow a disabled child the right to fail. All, however, is not lost, because it is in this conflict of philosophies and practices that the opportunity for growth and learning exists for both parties.

I work for the Transitional Opportunities to Adult Living, or TOTAL, program, a joint venture of STIC and Johnson City High School. The goal of the program is, as the name suggests, to assist young people with disabilities to move on to self- determined and satisfying lives in our community.

As a STIC staffer on this project, I work with staff from Johnson City High School. Ours is one of nine similar projects in NY State. My primary job is to provide the participating young adults with living skills and opportunities in the community. I provide the students with information, role play events with them to prepare for situations and help them see their attributes and take pride in who they are and their abilities.

Perhaps most importantly, I encourage them to develop the communication and assertiveness skills they will need to negotiate their lives. Often communication is seen as being able to say, "I want" and "I need," but I believe it is also crucial for people to be able to say, "No" and "I don't want." Too often the opportunity exists for those with disabilities to be taken advantage of by persons who say, "I know better." We do not do children and young adults a favor when we teach to them to acquiesce to authority without question.

I believe the second most important part of my job is what I don't do. I don't tell a student that one choice or decision is better than another. Choices, decisions, and the actions that result, have a natural consequence, and a natural consequence is a great teacher. I am also not prepared to grade another person with the subjective scale that is merely my opinion. People with disabilities have been scourged with the scathing, and often scaring, opinions of people for too long. And so, from the STIC perspective, the young adults in our program will make decisions that may result in uncomfortable natural consequences. These consequences are key in their experiences. (Do you remember staying out all night, taking a shower and going to work? How many times did you do that? If you're like me, once was enough!)

And so by providing a young person with information, role playing situations and discussing possible outcomes of certain choices, and divorcing myself from the actual decision-making itself, I have remained supportive and concerned while encouraging self- determination and personal responsibility. Therefore, it follows that a student's failure does not reflect on me, and neither does a student's success reflect on me. This is a tricky spot and one where our program differs so much from more traditional school programs. Oh, I wish I could say that a student's job, or good grades, or successful relationships were a credit to me, but they truly are not. They are a credit to the student who chose to use available supports and, embracing self-determination and accepting personal responsibility, made her own choices.

STIC is pleased to announce that our Professional Counseling for Low- and Moderate-Income Binghamton Residents program has been renewed for 1999. This program is sponsored by the City of Binghamton using federal Community Development Block Grant (CDBG) funds. We are especially proud that even though the CDBG funds available to the City have been shrinking each year, for two years in a row the City has increased our grant. In 1998 it restored a 10% cut that it made in 1997, and for 1999 funding was increased by 10%. Still, the entire appropriation is just under $11,000, and the added funds will be used to fully cover rising overhead costs for the first time, not to expand the program.

In recent years the program has saved taxpayers tens of thousands of dollars by preventing hospitalization of people who have significant mental illness (see "Better Living Through Skin-Flint Cost-Cutting" for an example). Preventing just two hospitalizations saves more than this service costs, and each year STIC prevents dozens.

The program provides free psychotherapy or family counseling to disabled Binghamton residents or their families who meet income guidelines. Sign language interpreters are also provided free of charge to deaf consumers. For more information, call Charlie Kramer at 724-2111 (voice/TTY).

Each year Southern Tier Independence Center recognizes those who have gone beyond the call of duty to contribute something to the betterment of the disability community. This may include making businesses or services more accessible or responsive to people with disabilities, calling attention to important disability issues, helping STIC achieve its goals, or serving as an example for other people with disabilities of what can be accomplished. Each year, as we winnow down the award winners, many are called, but few are chosen. Those heralded here are truly the cream of the crop, and we are justly proud of and deeply grateful for their efforts. A round of applause, please, for:

Most Improved Local Agency

BC Transit
George Bagnetto
For responsiveness to the disabled community's need for accessible public transportation that meets ADA requirements.

Binghamton City Police
Sgt. Blakesley
For ensuring that the Binghamton Police regularly use sign language interpreters to communicate with deaf citizens.

Outstanding Business Support

BSB Bank & Trust
Gary Hart, Vice President
For supporting our outreach to the corporate community, and our golf tournament.

Lourdes Hospital
Michael Guley, President & CEO
For donating important services to our Consumer Directed Personal Assistance program and supporting our golf tournament.

NYSEG
Wes von Schack, President & CEO
For ongoing support of STIC, especially fundraising and golf tournament projects.

United Health Services
Mark T. O'Neil, Jr., President & CEO
For principal sponsorship of our golf tournament.

Outstanding Consumer Achievement

Mark Hooper
For achieving a dream to be a professional driver despite the skepticism facing people with disabilities who try to break the mold.

Wendy Richards
For not stopping her personal development when she got a job, but pursuing her education and letting no obstacles deter her.

Outstanding Coverage of Disability Issues

Erika Stutzman
Binghamton Press & Sun-Bulletin
For an excellent article on abuse of handicapped parking permits.

Maurice Thomas
Binghamton Press & Sun-Bulletin
For a great article casting a positive focus on employing people with disabilities.

Outstanding Employment Assistance

Northern Lights
Bob & Elaine Stephens
For flexibility, warmth, and experimenting to enable a disabled worker to succeed.

Southern Tier Medivan
Ed Matesanz
A long-time employer of disabled workers, with exemplary training/accommodations.

Theo's Restaurant
Barbara Felton
For helping three people with disabilities grow in work skills and self-confidence.

Outstanding Foundation Support

Travelers Foundation
For repeated grants to STIC over 3 years to support building improvement projects.

Outstanding Intern Service

Teresa Kennedy
For death-defying performance as a supported employment intern.

Mark Szot
For amazing performance as a supported employment intern.

Outstanding Volunteer Service

Bonnie Siegel
For exemplary devotion to assisting one consumer to remain in her own home.

Ted Sumida
For unflagging gardening and parking lot maintenance to keep STIC looking its best.

STIC Board Lifetime Achievement

Linda Greeno, Board President
For longtime leadership of the Deaf community, but also for devotion to cross-disability advocacy and extensive active volunteering in many capacities over many years.

Our friends at ADAPT (Americans Disabled for Attendant Programs Today, aka. Americans Disabled for Accessible Public Transportation) tore up Washington, DC during election week. Over 700 activists came to town with a 3-pronged agenda.

DAY 1: Party Politics

On November 2, they surrounded and shut down the national headquarters of the Democratic and Republican parties to demand that they adopt platform planks favoring an end to Medicaid's institutional bias. 80% of Medicaid long-term care funding goes to nursing homes, ICFs, and similar institutions and only 20% is spent on homecare. ADAPT activists said, "Medicaid currently is spending $45 billion a year to literally warehouse 2 million Americans. Many of them do not need medical care in particular but rather require attendant services, such as transport from bed to wheelchair, eating, dressing, and toileting."

On average, homecare costs about 1/3 that of institutional care per person, so ending Medicaid's bias toward confinement could save taxpayers up to $30 billion a year. Even with the "woodwork effect" (the fear that easily available homecare would prompt people who don't get long-term care to "come out of the woodwork" to demand attendants), a national Medicaid-funded attendant program would cut Medicaid costs by billions of dollars annually. It would improve quality of life for citizens with disabilities and make it possible for more of them to be employed taxpayers.

The Republicans agreed to include such a plank in their national platform, and the Democrats agreed to allow ADAPT activists to address their national convention in 2000.

DAY 2: Shaming the Bureaucracy

On November 3, ADAPT turned its attention to the federal government's recent realization of something that disability activists have known for years: The Americans with Disabilities Act (ADA) forbids state and local governments and the programs they fund to unnecessarily segregate people with disabilities in institutions, sheltered workshops, or special schools or classes.

ADAPT occupied the offices of the Department of Health and Human Services (HHS) and demanded that the President's FY 1999 budget include "a major initiative revamping long-term services for disabled Americans...money to support community-based attendant services." They also demanded that the department enforce the ADA's provision that services must be provided in the most integrated setting. They criticized HHS officials for publicly backing disability activists while privately discouraging state Medicaid directors from providing integrated services.

DAY 3: We Will Ride!

Then, on the 4th., ADAPT took the heat off government and focused it on Greyhound, perhaps the most anti-disability large corporation in the United States. Recently Greyhound lost an all- out battle to prevent the federal Department of Transportation (DOT) from issuing ADA regulations requiring large over-the-road bus companies to install wheelchair lifts on new buses. The day after the final regulations were issued, Greyhound's lobbying organization, the American Bus Association (ABA), sued DOT for relief from the regulations, once again claiming the costs were too high.

Years of research, mandated by the ADA and conducted by a panel that included bus company officials, found that lifts would cost only 1% of the total purchase, maintenance, and operating costs over the lifetime of a bus, and would increase bus ticket costs by only 33 cents each. Most people with disabilities are on fixed incomes near the poverty level; over-the-road buses are the only form of long-distance transportation most of them can afford. Accessible buses are a critical necessity for them.

So ADAPT's 700-plus protesters blockaded the ABA's headquarters, demanding that it drop its suit and support the DOT regulations. While there were no immediate results, it was another opportunity to highlight Greyhound's deplorable record of "serving" disabled customers, which includes illegally denying them rides, verbal abuse, dropping them down bus steps and otherwise injuring them, and not letting them off the bus to go to the bathroom at rest stops.