Get Up . . . Stand Up!

by Ken Dibble

2000 is shaping up to be a watershed year, and that's not just because it's a new millennium (which some say it really isn't, but I won't get into that debate). This year is singular because Independent Living has finally begun to get serious attention for our ideas of integration, inclusion, and self-reliance from NY State government. It was also very nearly the year when the Americans with Disabilities Act (ADA), already weakened and teetering from repeated legal assaults, could finally have been destroyed by the Supreme Court. Both of these events are reasons why you as advocates need to be aware, vigilant and ready for action.

This year's Disability Action Agenda (see Disability Action Agenda 2000) has gotten quite a reception in the State Legislature. The Agenda was produced by the 35 Centers for Independent Living (CILs) in NY State. It sums up ideas from a December summit meeting in Albany, where nearly a hundred CIL representatives and consumers, and a few state agency officials and members of disability advocacy groups, debated and honed issues in the categories of Health and Long-Term Care, Education, Mental Health, and Employment.

At the top of everyone's list was getting NY to adopt the Medicaid Buy-In program in the Work Incentives Improvement Act (WIIA). This program would enable people with disabilities who work to keep Medicaid to pay for the equipment, prescriptions and attendant services that make it possible for them to work, and for which no other public or private medical insurance pays. Those above a certain income level would pay a premium for this coverage on a sliding scale. And, the Buy-In does not cost anything. Well, almost nothing. It doesn't increase Medicaid service costs, because all the people who would use it already get those services through Medicaid; without the Buy-In, they would still do so. The Buy-In just lets them earn a decent living, which puts them in a position to pay some of the costs of their coverage, as well as income taxes. It will cost something to run the program and collect premiums, but WIIA makes federal money available to the state to cover those costs for five years. After that, consumer premiums and income tax payments will more than offset them.

The no-cost factor is probably why there is serious interest in the Buy-In in the Senate Insurance Committee, and why Assemblyman Brennan is introducing a bill for its adoption.

Assembly Task Force on People with Disabilities Chair Scott Stringer is working on a bill to advance other Agenda issues. It would authorize and support the Department of Health in seeking a new Medicaid Home and Community Based Services waiver to get people out of nursing homes and into their own homes with attendant services. It would also require all state disability service agencies to develop and implement plans to comply with the ADA's requirement that states serve people with disabilities in the most integrated settings. That means getting everyone who wants to leave out of nursing homes, developmental centers, psychiatric centers and sheltered workshops, in an orderly, systematic way, with goals and timetables for completion, and it means transferring the money from those institutions to appropriate individualized integrated community supports.

So it's ironic that in this first year when that lofty, central goal of the Independent Living Movement is finally being taken seriously, the federal law that is making it possible came very close to being declared unconstitutional.

You may recall in our last issue we reported on lower court challenges to the ADA, and predicted that the Supreme Court would eventually review them. The Court was slated to take on one of those challenges in April, a direct attack on ADA's Title II, which includes the "most integrated setting" mandate. That crisis was staved off at the last minute (see Saved by the Ballot!), but probably only temporarily. For reasons of "states' rights", the Court may eventually decide Congress overstepped its bounds in ordering states to integrate disability services and stop discriminating due to disability in hiring. If it does, we may be left with an ADA that requires nothing of state or local governments, not even accessibility for buildings, sidewalks, or transit systems. Add that to other recent Supreme Court rulings, and we'll have an ADA that only outlaws job discrimination by private companies, only against people with the most severe disabilities who don't use prostheses or assistive technology (show me one), and that can only force real access improvements from the largest companies. No longer a civil rights law, ADA would be little more than a building code.

How do you like them apples? If you don't, then you need to go to work. We've been given a year's head start, and we've got three suggestions for what you can do to defend the ADA (see Protect the ADA!).

And even though things look positive in New York State this year, it's no time to rest. Your legislators will still need to hear from you that you support their efforts to enact our agenda. Write, call or email them with that message right away.

The laws you save may be your own.

Find the Facts!

What states are Alsbrook and Dickson from?
The answer to this question is somewhere in this newsletter. All correct answers (as found in this newsletter), postmarked on or before April 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!
Pamela Hyde of Binghamton

March 2004


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.


Gift Acknowledgements

STIC would like to gratefully
acknowledge the recent gifts from:

Greater Broome
Community Foundation's William H. & Audree F. Rincker Fund

Conrad & Virginia Klee Foundation

Broome County Community Charities

The List Staff Side

Here's an updated list of our talented staff, their jobs, and their voice-mail extensions. Go get 'em!
318 Maria Dibble, Executive Director
320 Frank Pennisi, Program Services Coordinator
Accessibility and Technology Services
329 Darlene Dickinson, Access Consultant/TRAID Coordinator
Blind Mentor Services
321 Terry Northup, Blind Mentor Coordinator
Deaf Services
311 Pat Charma, Deaf Services Coordinator (TTY)
Interpreter Services
338 Carrie Watkins-Smith, Interpreter Services Coordinator
Peer Counselors
323 Susan Link, Peer Counselor
325 Danny Cullen, BHA Peer Counselor
350 Joy Earthdancer, Peer Counselor/CDPA Coordinator
Person-Centered Planning & Self Determination
336 Dawn Stone, Person Centered Planning Outreach Coordinator
Professional Counseling
309 Charlie Kramer, Psychotherapist
Service Coordinators
326 Jo Anne Novicky, Community Services Coordinator
313 Tammy Eaves, Service Coordinator
322 Mary Ellen Kelleher, Service Coordinator
Supported Employment
333 Sue Ruff, Supported Employment Coordinator
332 Carole Kramer, Employment Specialist
Transition Services
352 Julie Epply, Transition Services Coordinator
351 Qassem Al-Nadi, Transition Peer Counselor
348 Julio Duran, Transition Peer Counselor
349 Jennifer Hitchcock-Ayala, J.C. Community Support Specialist
Volunteer Services
307 Laura Nuccio, Volunteer Coordinator/Chenango Cty. Outreach

New! ASL Class

Come and learn a new exciting language: ASL
(American Sign Language)
April 10th and April 24th
May 8th and May 22nd
June 12th and June 26th

24 Prospect Ave.
Binghamton, NY 13901
4th Floor

1:00 - 2:30 pm

Free for paid STIC members
Non-members - $25.00

This class is a basic introduction to ASL.
We can only accept 20 students.
First come, first serve.

Contact: Susan Link, Mon - Fri, 9 am - 5 pm, 724-2111

STIC's New Board

President - Mary Beth Gamba
Vice President - *Milrene Smith
Secretary - Beverly Rainforth
Treasurer - *Linda Giese

*Michelle Cali
*Linda Greeno
*Edie Marie Lind
Elsie Logan
*Michael May
Kathy Sas
*Joe Walsh

* designates person with a disability

STIC's New Kramer

Hello, my name is Carole Kramer. I joined the staff as Employment Specialist with STIC's Job Connections supported employment program on January 10, 2000. I did some job coaching prior to that and found the work interesting, and I like working directly with people and helping them along in life's adventures.

I took advantage of an early retirement incentive and retired from Broome County Social Services last September. My twenty some years with Social Services gave me much experience helping consumers dealing with assistance programs. The last ten years I was a Principal Examiner in the non-public assistance Food Stamp Unit. I supervised fourteen staff and made every effort to help consumers be eligible for Food Stamps within the Federal Guidelines.

I have a BA degree from Manhattanville College, Purchase, NY. I live in the Town of Union. I have two sons who are in their twenties.

Yes, STIC's Professional Counselor, Charlie Kramer, is one of my five siblings.

I look forward to working with and for you.


Budget Benificence?

Governor Pataki seems to have realized that his chances of being President, or even Vice President, are nil. He'll be here in NY for the foreseeable future, where right-wing posturing just doesn't make it. As a result, his 2000-01 budget has lots of new money for disability services, and avoids the harsh attempted Medicaid cuts of previous years.

That doesn't mean the budget is a model of inclusive community-based disability rights. It is not. It may mean he'll be more receptive to changes than in past years. He may even get out of the way of the Medicaid Buy-In (see Disability Action Agenda 2000), since it won't cost any additional Medicaid service dollars, and he no longer has to worry about the national implications of appearing to be "Medicaid-friendly." However, given his ongoing personality conflicts with Legislative leaders (this year, it seems, he's feuding with his own Republican Senate Majority Leader), it's at least as likely that the whole thing will end in another veto disaster. At this early stage, it's anybody's guess. What we don't have to guess at are the facts:
Independent Living
The Governor has once again proposed level funding for Centers for Independent Living like STIC. Fortunately, the "level" is still where last year's budget battle left it, $1.5 million higher than the old level.
Supported Employment
The Governor's view of supported employment continues to be backward. That is, he proposes to provide "extended" services to another 1200 people with developmental disabilities served by OMRDD. These are services used by people who have already been placed and trained in jobs. Unfortunately, he has again refused to increase funds for the VESID "intensive" services that place and train those people. Who does he think will use the "extended" services? Speculation is that he stints on VESID funding simply because VESID is under the Department of Education, which is controlled by the Board of Regents instead of by him, which makes him mad.
The second year of this 5-year plan to eliminate the waiting list for OMRDD residential services will be fully funded. It addresses a very real need for adults with developmental disabilities whose aging parents are losing the ability to care for them. People can "choose" the residential supports they want. But, because for many the need is extremely urgent and it's easier and faster to mass-produce group homes than it is to tailor individual integrated living supports, the only real choice most people get is A) take the group home or B) risk being homeless or being shipped across (or out of) the state to some other relative, or up to the developmental center to "await an opening."
Other Services for People with Developmental Disabilities
Long-delayed, very welcome cost of living increases (in OMRDD's obscure language, "trend factors") of over 5% would go to many programs that provide both congregate and integrated residential and day services and supports. The budget doesn't appear to have new funds to enroll more people who aren't on the NYS CARES waiting list in OMRDD's most individualized, integrated programs, the Home and Community Based Services (HCBS) Waiver or Individual Support Services (ISS). OMRDD would build new group homes for 284 more people who are either leaving developmental centers or "aging out" of school, instead of offering them individualized integrated living, in addition to all the homes being built for NYS CARES. OMRDD would continue to expand programs to lock up people who are alleged to need "secure" services in special institutions, including some who are now in developmental centers and whose transfers would apparently be counted as "institutional downsizing."
Services for People with Mental Disabilities
This is the big news this year. Pataki has proposed $125 million in new mental health services. $52 million would go to case management and Assertive Community Treatment (ACT) teams. Advocates fear most of this will be funneled into forced treatment under "Kendra's Law" instead of into proven effective voluntary approaches. $20 million would go to about 2,000 supported housing units. Depending on how providers treat their tenants, this could be good or bad, but homelessness is truly a major concern for people with mental illness and the unavailability of affordable housing and supports is the main reason. Still, it's not necessarily integrated housing. Much of the rest of the money would serve children, through family support and HCBS Waiver services. There are also big chunks to beef up OMH's oversight bureaucracy and institutional services. Downsizing of psych centers is put off for at least another year.

While this is the best mental health proposal to come down the pike during Pataki's tenure, with considerable potential for positive benefit, the devil is in the details, and advocates are especially disappointed that there is no assurance that peer-run support programs will get any of these funds.

CBVH Strikes Out

by Ken Dibble

The NY State Commission for the Blind and Visually Handicapped recently issued a report entitled "A Review of New York's Service Delivery to Individuals Who Are Visually Impaired" and requested comments on it. It contains two good ideas and one questionable one. It also claims credit for dubious achievement, and doesn't address one of CBVH's worst problems.

The two good ideas are: CBVH supports the Blind Persons' Literacy Act. And, CBVH would like to change its name, either to "Commission for the Blind" if it continues to serve only "legally blind" people, or to "Commission for the Blind and Visually Impaired" if it expands to serve people with less severe visual disabilities.

Here's the questionable idea: CBVH wants to expand services to include people with visual impairments who aren't "legally blind", if additional funds are appropriated to do so. Right now, lots of people whose visual disabilities substantially limit their ability to learn or work without assistive technology or other supports don't meet the definition of "legally blind", and if their conditions aren't deteriorating rapidly, they can't get any vocational rehabilitation services at all. Something really needs to be done about that. CBVH's proposal is questionable because if nothing else changes, it could mean that thousands more people with visual disabilities will be funneled to CBVH's vocational service providers, most of which are sheltered workshops with very low real job placement rates. CBVH repeatedly refuses to hire people with visual disabilities for important management positions or involve them in meaningful ways in policy development, and providing a lot of new money to expand this able-ist agency culture would be a mistake. VESID would be a better choice to provide this service.

The dubious achievement is that CBVH has raised its job placement rate from .3% to .5% over the last two years. Only half of one percent of the people it serves get placed in jobs in any given year. Even if part of the reason is that CBVH serves a lot of elderly people, this is nothing to crow about. It is far below VESID's job placement rate, and it reflects CBVH's massive reliance on sheltered workshops.

And here's the problem they left out: CBVH's technology program wastes huge amounts of money to provide outdated, overpriced, unsuitable computer equipment to consumers, which it buys out-of-state. CBVH pays several agencies to assess consumers' computer skills and equipment needs and make hardware and software recommendations. This assessment is mandatory, and doesn't consider consumer preferences, even if they are experienced computer users. Then CBVH routinely ignores the assessment as well as the consumer's input, and gives everyone the same hardware and software. The software that makes CBVH computers talk is complex; users must be very knowledgeable to make it work. Since CBVH rarely trains consumers adequately once they get the computers, they often can't use them. There is a more user-friendly program, but CBVH seldom provides it even if the assessment recommends it. Because CBVH buys everything through a multi-year contract with a Rhode Island company, it typically pays 2-3 times current market value for equipment that is 1-2 years out of date.

CBVH's report is a limited, unaccustomed effort to assess and respond to consumer demand, and it shows. They need to go back to the drawing board.

Disability Action Agenda 2000

The Medicaid Buy-In is an optional Medicaid program, first made available to the states in 1997. It was expanded by the federal Work Incentives Improvement Act of 1999. It enables people with disabilities who want to work to "buy in" to Medicaid on a sliding scale when their income exceeds Medicaid eligibility limits.
Description of chart--`Medicaid Buy-In'

Chart: Medicaid Buy-In Increased Revenues and Cost Savings for New York State
People with disabilities want to work but can't take well-paid jobs without losing Medicaid coverage. Medicaid is the ONLY medical insurance, public or private, that provides unlimited, lifelong coverage for medical equipment and supplies, prescription drugs, and personal attendants. A lower-middle-class income won't pay for a $10,000 power wheelchair (which must be replaced every 3-5 years), $1,000/month in prescriptions, or $13,520/year for attendant services (based on 40 hours/week at $6.50/hour, the least one can expect to pay a minimally-qualified attendant in upstate NY). Even the best employer health insurance puts lifetime limits on coverage that people with severe disabilities would exhaust within a few years, and often doesn't pay for attendants at all.
Governor Pataki refused to adopt the program in 1997, citing costs. However, the Medicaid Buy-In can actually pay for itself, when all costs are considered:

  • New York already pays Medicaid costs for hundreds of thousands of people with disabilities who aren't working, or who don't earn enough to affect their Medicaid eligibility-or pay income taxes.

  • The program is a BUY-IN, NOT a "give-away". For people whose incomes exceed the standard Medicaid threshold, it works just like any other medical insurance. Participants pay a premium in return for coverage, on a sliding scale up to 7.5% of their annual income.

  • People with disabilities who earn up to 450% of the federal poverty level while keeping Medicaid will pay state income taxes and use fewer public benefits. The US Census Bureau estimates that there are about 1.24 million working-age New Yorkers with disabilities. 70%, or 868,000, of them aren't working, according to the last Harris Poll. If each one earns the average annual salary for people with disabilities in integrated jobs cited by NY State's latest Annual Status Report on Integrated Employment--$289/week--they'll pay annual NYS income taxes of over $286 million on total annual income of over $13 billion, pay up to $975 million in premiums, and reduce government benefits costs by $1.6 billion. This will make some $2.4 billion available annually to pay for the Buy-In (see chart, left).

  • Over several years, many people with disabilities will gain work experience and move into jobs that pay above 450% of poverty level, where they'll be able to pay some medical costs out-of-pocket and use employer-provided insurance for the rest. They will drop Medicaid entirely. But they can't do this without the work experience that the Medicaid Buy-In will make possible.

  • The Work Incentives Improvement Act makes available additional Medicaid funds that states can use over five years to cushion the initial costs of offering the Buy-In.
  • Pass legislation to require all state disability service agencies to develop coordinated plans and timetables to comply with the Americans with Disabilities Act (ADA) requirement that people with disabilities be served in the most integrated setting appropriate to their needs, as confirmed by the US Supreme Court and Department of Health and Human Services.

Description of chart--Options for Living Supports

Ten years after passage of the ADA, New York State still has thousands of people with disabilities in institutions, nursing homes, sheltered workshops, and segregated school programs that are far more restrictive than necessary to meet their needs. The recent Supreme Court LC v Olmstead decision and Department of Health and Human Services policy statements have made it clear that this is illegal discrimination. States must have a real, functioning plan to ensure that every person with a disability who desires it can receive necessary medical and support services in the most integrated living, working, and learning environments possible, with all deliberate speed. States that do not have such a plan are out of compliance and face a growing risk of potentially expensive and disruptive lawsuits.

Such a plan will cut government spending because integrated community-based supports are, on average, much less expensive than restrictive, segregated programs. It will increase government revenue because people who live in their own homes with the support they need to travel in their communities are more likely to get jobs, pay taxes and contribute to the economy. It is the right thing to do. And it is the law!
  • Provide $8 million in additional funding for VESID supported employment services in 2000-01.

This proposal is supported by VESID, the NYS Rehabilitation Advisory Council, the NYS chapter of the Association of Persons in Supported Employment, and by virtually every other vocational rehabilitation provider group in the state. It would put an additional 1,250 people with disabilities into integrated jobs at competitive wages in 2000-01, as the first step in a 3-year plan to place 5,000 people who have been identified as ready to leave sheltered workshops.

Supported employment costs less than any other "day" or vocational program in New York, and provides a measurable return on investment in the form of increased income tax revenues and decreased public benefits costs.
  • Provide $2,625,000 to enable each of New York's 35 Centers for Independent Living (CILs) to implement School-to-Work Transition Services.

  • Provide funding and authorization to enable students with disabilities aged 16 and older to receive supported employment and placement services for after-school and summer jobs.
CILs have proven their ability to: 1) get more high school graduates with disabilities into integrated homes and jobs; 2) cut the drop-out rate of students with disabilities by up to 50%; 3) reduce juvenile crime. Three CILs are in Year 2 of a VESID-funded pilot project to demonstrate Independent Living approaches to transition services. These projects have already achieved the above outcomes. Solid data indicate that the majority of youthful criminals have learning and/or emotional disabilities, and successful transition from school to work and integrated living substantially decreases the crime rate. Each CIL can operate such a transition program for $75,000 per year. This amount must be provided in addition to the cumulative cost-of-living increase requested by CILs. CILs can't commit COLA revenues to new services; they must recoup losses to existing programs that have resulted from ten years of continuous inflation (see Finish the Job...).

Students with disabilities need the same after-school and summer job experiences that nondisabled students have, at the same age. Successful school-to-work transition requires real hands-on work experience to give students with disabilities an understanding of working life, job aptitudes and options, and good work-related skills before entering the job market. School districts are required to provide transition services, but not enough funding is available, in most cases, for experiential training. Most transition programs consist of classroom "planning" and "practice", along with occasional "tours" of community worksites. Supported employment services could be made available to students aged 16 and above either by authorizing and funding VESID and CBVH to provide them, or by giving earmarked funds to school systems that they can use to purchase supported employment services directly from local providers.
  • Maintain current levels of funding for all community-based mental health programs; funds should not be siphoned off from these programs to support "assisted outpatient treatment".

  • Direct 50%, or $26 million, of the new funds Governor Pataki has proposed for 2000-01 for case management services to peer-run self-help programs; at least one peer-run program should be funded in each county.

  • Pass legislation to require parity in quality, frequency, duration, and expenditures between health insurance coverage for voluntary mental health services and coverage for physical health services.
So-called "assisted outpatient treatment" is really forced treatment of people with psychiatric diagnoses. The perceived need for this measure is due to the state's failure to adequately fund community-based supports to enable people to: 1) feel secure in adequate housing; 2) choose the most effective, least debilitating modern medications available; 3) do productive, meaningful, remunerative work; 4) have peer support in times of stress. Peer-run programs offer a variety of strategies and services to address these needs, and have a proven track record of reaching people who are reluctant to accept more traditional approaches. However, these programs are not available uniformly across the state. There is a danger that existing funds for such programs will be drawn off to support assisted outpatient treatment, a more-restrictive setting. Directing or redirecting funds to assisted outpatient treatment, when funds aren't available to provide less-restrictive services to all who need them, may violate the ADA "most integrated setting" mandate. Funds expended in a climate of coercion and disrespect for consumer choice certainly won't produce the level of benefit that using the same funds to expand proven, effective voluntary approaches would.

The federal insurance parity law has been a failure due to loopholes that let insurers pay lip-service to dollar parity while drastically limiting service types, frequency, and duration. The result is that few employer-offered insurance plans provide adequate coverage for voluntary mental health treatment. This makes it harder for people to return to work and reduce their dependence on government benefits.
  • Provide $1.5 million to Centers for Independent Living (CILs) to assist people to leave expensive nursing homes and other institutions and move into their own homes and communities.

  • Pass and ENFORCE legislation ensuring uniformity in long-term care services across the state, including availability of 24-hour homecare and/or safety monitoring, Consumer Directed Personal Assistance (CDPA) services, and substitution of needs-based assessment for task-based approaches.

  • Oppose any effort to reinstate "fiscal assessment" as a Medicaid cost-control measure.

  • Pass legislation authorizing the Department of Health to seek and implement a Medicaid waiver to support people with any disability of any age who wish to leave a nursing home and live in the community. This waiver should fund transition costs to set up a household, personal attendants and/or safety monitoring at home or in any work or community setting, and variable levels of consumer responsibility for services based on consumer preference.
On average, CILs expend about 10 staff hours per week to assist a person to leave excessively restrictive settings and/or remain in the most integrated setting. For about $43,000-less than the cost of one year in a nursing home for one person-each CIL could create a new full-time Community Re-integration position and move 4 people back into the community annually, or 140 people statewide. With each such person served saving the state, on average, $46,000 each year, $6.4 million could be saved in expenditures on restrictive programs. Deducting CIL costs produces $4.9 million in NET savings for disability services in New York State each year. Again, these funds must be provided in addition to the cumulative cost-of-living increase requested by CILs (see Finish the Job...).

Five years after its passage, several counties are openly defying the Legislature's requirement that they must offer Consumer Directed Personal Assistance (CDPA) services to any self-directing person eligible for Medicaid long-term care services. The law contains no enforcement mechanism, so New York State is still not realizing the full potential Medicaid savings that CDPA, by eliminating expensive administrative "middlemen" from the system, has produced in counties where it is available. Further savings would result from enabling people with Alzheimers disease or similar conditions to remain in their own homes with safety monitoring instead of being forced into nursing homes.

"Fiscal assessment" required anyone whose homecare costs equaled or exceeded 90% of that of the average nursing home to be confined to a nursing home. This is actually a cost-increasing measure, not only for people whose homecare costs are between 90% and 99% of a nursing home, but because most people with the most severe disabilities can be served at home for less than the real cost of the higher-level facilities they would be placed in, which can exceed 300% of the average cost.

The Department of Health wants a Medicaid waiver to transition people out of nursing homes, but its application for planning funds to develop a waiver was rejected by the federal Department of Health and Human Services. On average, homecare costs NY State 1/3 of annual institutional costs for persons with similar needs.
  • Provide $1.5 million in remaining cumulative cost-of-living increases to CILs.

  • Include CILs on the permanent list of programs that receive annual COLAs.

Description of chart--`Cost Comparison'

After nearly ten years without a cost-of-living increase, NY's 1999-2000 budget provided an additional $1.5 million for Centers for Independent Living (CILs). We're thankful to those who supported this welcome development. However, that amount was only half of what CILs needed to recoup losses from ten years of inflation. In today's tight labor market, many CILs continue to lose valuable, experienced personnel to better-paid jobs. Employee health benefit costs continue to rise, and many CILs are still unable to restore staff training budgets or update aging computer technology.

CILs assist people with disabilities to leave segregated or restrictive programs and live safely, productively, and independently in the most integrated settings possible. In doing so, they provide major savings to New York taxpayers. The average annual savings when CILs help people move from excessively restrictive settings to the most integrated environments-taking into account all public costs for supports provided in both segregated and integrated settings-is about $46,000 per person. Yet CILs still only have the capacity to serve about 4% of those who could benefit. Here are some recent examples:

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

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

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

Description of chart--`Total Requested CIL Increases'

CILs are free-standing, locally-controlled, non-residential non-profit agencies that are governed and operated by people with disabilities. They assist people with all disabilities of all ages to be as independent as possible. They also help families, businesses, agencies, and governments to better meet the needs of people with disabilities. Centers provide a broad range of services, such as advocacy, peer counseling, life skills training, information/referral, benefits advisement, and architectural barrier, assistive technology, and housing assistance. Some Centers also provide sign language interpreters, supported employment, service coordination, personal assistants and more, depending on the needs of their communities.

Dots for Tots

The introduction of the Blind Persons' Literacy Rights and Education Act by both houses of the NY State Legislature is one of those rare examples of something done "just right." If passed, it will also achieve one of STIC's longest-standing advocacy goals. The bill (Assembly: A. 3606-A; Senate: S. 4515) does three very important things:

  • It requires any child with a significant visual impairment to be taught braille in school unless his family agrees, in his Individual Education Plan, that it isn't necessary.

  • It requires all textbook publishers who sell their products to the State of New York, or to any school district or college here, to make them available on computer disk in a form that can be translated into braille and printed on a braille printer.

  • It requires anyone who wants to be licensed as a Teacher of the Visually Impaired to be proficient in braille.

You may wonder why such a law is needed. After all, cassette books, talking computers and reading machines let blind people access a lot of printed material fairly well. The problem is, it isn't reading. It's listening. Most people don't absorb as much information from listening as they do from reading. Blind kids who have to listen to everything tend to have lower "reading" comprehension than sighted kids. Also, you can't learn spelling that way. And you can't learn to write that way. Yes, blind children learn to type, but what if you need to use a calendar or look up a phone number? We have tiny, cheap computerized "organizers" for such information, but unlike full-fledged computers, they can't talk. They are useless to blind people. It's cumbersome and slow to use a computer every time you need a phone number or to check an appointment date. Even if you carry a notebook computer around with you, do you really want to set it up, turn it on, put on headphones and page through the calendar software to pick the next date for a meeting? Try doing it in a phone booth. It's not practical to rewind and fast-forward back and forth to find a number on a minicassette recorder, especially near a loud busy street or in freezing weather. And how do you know which disk or CD to put in your computer if you can't make or read braille labels? I have about 75 disks in my office. Imagine having to check each one to find a document.

The need for braille used to be obvious to schools. But now we hear, "With all these books on tape and talking computers, why bother?" The reason we hear that, of course, is money. It's cheaper to get cassette books on loan and have one or two talking computers and reading machines for all the blind kids in a school building, than it is to train and pay qualified braille instructors. It also denies blind children the most basic form of education: functional literacy.

This bill is also important because it sets a precedent that reverses the unequal treatment principle of the Individuals with Disabilities Education Act (IDEA), against which STIC has campaigned for years. A nondisabled child gets the best education the school district can offer simply by walking into the school. But under IDEA, a child with a disability is only entitled to the best education his parents can negotiate from the district. School districts are skilled at such negotiations, and the typical parent is not. The result is almost always an inferior education for the disabled child. STIC has said for 15 years that there should be non-negotiable guarantees in IDEA. For example, all children with disabilities should automatically be placed and supported in regular classrooms, and only be moved out if actual good-faith efforts to teach them there fail. And, children who are physically unable to write should automatically get computers, deaf children should automatically get interpreters, and blind children should automatically get braille and mobility training.

The bill does cover some kids whose relatively mild visual impairments may make braille unnecessary. If so, the family can opt out of braille instruction. But it reverses the IDEA principle by making braille instruction automatic unless rejected by the family, instead of making families beg and plead for it. If this bill passes, education advocates who've supported IDEA's unequal treatment principle in the past may see the light, and more changes will be made.

HCRA v the Medicaid Buy-In

New York State's Health Care Reform Act (HCRA) has two major provisions that could affect health care for people with disabilities. However, HCRA does not do for people with disabilities what it does for nondisabled people: enable them to take good-paying jobs while retaining essential medical coverage. Only the Work Incentives Improvement Act's Medicaid Buy-In can do that. Here's why:
1. HCRA subsidizes the cost of a basic private health insurance package.
Why It's Not Enough:

The package doesn't cover homecare or medical equipment. Therefore, it doesn't cover the specific medical services whose unavailability from private insurance plans keeps people with disabilities from taking jobs at salaries that would make them ineligible for Medicaid.

The HCRA package is only for employers that employ 50 or fewer people, employers that don't offer health insurance at all, and direct-pay insurance customers. This would prevent many people with disabilities who only need lifelong prescription drug coverage from working at large companies whose insurance doesn't cover prescription drugs or which imposes lifetime coverage limits.

The plan is managed-care only. New York State requires managed care plans that serve people with disabilities on Medicaid to meet certain standards to ensure safe, quality service. In most areas of the state, managed care providers have been unable or unwilling to meet those standards. HCRA ignores those standards, making it likely that people with less-severe disabilities who enroll in the basic HCRA plan would get substandard service.

Why the Medicaid Buy-In is Better:

The Medicaid Buy-In covers everything that Medicaid covers, including prescriptions, medical equipment and supplies, and homecare, including Consumer Directed Personal Assistance. Coverage is life-long. It is available no matter where or for whom the participant works. There is no requirement for managed care.
2. HCRA expands Medicaid eligibility to individuals with incomes up to 100% of the federal poverty level.
Why It's Not Enough:

Poverty-level incomes do not enable people to become independent from food stamps, housing subsidies, or other government benefits. They do not enable people to contribute a fair share toward the cost of their health care; therefore HCRA does not recoup any costs. As soon as a Medicaid recipient earning at this level got a raise or promotion, they would lose their Medicaid coverage, which, for many people with disabilities, would be a death sentence.

Why the Medicaid Buy-In is Better:

The Medicaid Buy-In permits states to make full Medicaid coverage available to working people with disabilities with incomes up to 450% of the poverty level. People who earn at this level will not need, or be eligible for, any other government benefits. Furthermore, many people who reach this level will move even higher on the pay ladder, where they can afford out-of-pocket costs for things that private insurance doesn't cover, so they will be able to leave Medicaid behind. Before they reach that point, participants would pay annual premiums for their coverage on a sliding scale. Premiums could total up to 7.5% of their annual income. Thus the Medicaid Buy-In pays for itself in terms of premium revenue, increased income tax revenue, and decreased public benefits costs.

Protect the ADA!

What You Can Do:
1. Write to NY State Attorney General Elliot Spitzer and tell him the following:

  • Do not sign onto, or file, an amicus brief in support of any attack on the ADA's Title II.
  • Hold a press conference to publicize your pro-ADA position.
  • Distribute a news release to state and nationwide media to promote your position.

Contact Spitzer at:
Office of the Attorney General
120 Broadway
New York, NY 10271

2. ADAPT lawyer Steve Gold is working on an ADA brief for the next 11th. Amendment claim. He wants to prove deliberate discrimination against people with disabilities by States. Send him examples of de jure ['by law'] discrimination against people with disabilities by NY State, either a specific citation for the law or written policy; preferably, a faxed copy. Or provide evidence of VERY widespread de facto practices of segregation, institutionalization, or unequal treatment. Be very specific regarding references.

Contact Steve Gold at:
125 S. 9th Street, Ste. 700
Philadelphia, PA 19107
(215) 627-3183 (FAX)

3. Help create a powerful national lobbying organization for people with disabilities that can spread real money around and scare politicians the way AARP does, to defend our rights. Join the American Association of People with Disabilities (AAPD).

(888) 712-4672

Ring Around Rodriguez

In December we reported the US Second Circuit's Rodriguez v DeBuono decision. The Court said the ADA essentially doesn't require any "reasonable modification" of existing community supports to help people avoid institutionalization. The plaintiff was a New York City person with Alzheimers disease who asked attendants for "safety monitoring" at home. No NYC homecare program offered "safety monitoring" as such, and the Court said they couldn't be ordered to. The case may be appealed to the Supreme Court, or the state Legislature may pass a law to deal with the issue.

Meanwhile, there's a way for service coordinators, doctors and advocates to avoid this problem. DO NOT request "safety monitoring" services. Instead, talk about the consumer's needs for additional assistance with typical activities such as ambulation, using the toilet, cooking, etc. The HCFA State Medicaid Manual says, "An individual may be physically capable of performing [such tasks] but may have limitations in performing these activities because of a cognitive impairment. Personal care services may be required because a cognitive impairment prevents an individual from knowing when or how to carry out the task. For example, an individual may no longer be able to dress without someone to cue him or her on how to do so. In such cases, personal assistance may include cuing along with supervision to ensure that the individual performs the task properly."

Get it? Attendants can "cue" and "supervise" people in almost any task, including "ambulation". If a consumer is prone to wander off, an attendant can see to it that her "ambulation" occurs in directions that are "functional"--that is, toward some "safe" destination. (Don't say "safe" or "wandering" though; try calling it "non-goal-directed ambulation".) People who might leave the stove on can be "cued" to turn it off. We're sure you can think of other applications of this principle.

The Court made a bad decision in the Rodriguez case that should be corrected, because it sets a dangerous precedent. In the meantime, people with cognitive disabilities still have a way to stay in their homes, and one that's easy to implement.

Saved by the Ballot!

As we predicted last issue, the Supreme Court was asked to decide which of several federal Appeals Court decisions regarding Title II of the Americans with Disabilities Act (ADA) was correct. But at the last minute, election-year Presidential politics appeared to have derailed that train, at least for now. The two cases to be heard by the Supremes in April have both been settled out of court. Here's the story:

Title II governs the behavior of "public entities"--that is, state and local governments. It requires states to serve people with disabilities in the most integrated environment. Previous ADA lawsuits have also assigned it the authority under which ADA Title I job discrimination prohibitions are applied to state and local governments. In other words, Congress, in enacting the ADA, told state and local governments how to conduct a good portion of their affairs when it comes to people with disabilities.

In the name of "federalism", American legal precedent and tradition limit how much of this kind of thing Congress can do. This limit is found in the 11th. Amendment to the Constitution, which over the last 150 years has been interpreted to prevent American citizens from suing state governments without their permission. Without the ability to sue, there can be no real enforcement of any requirements Congress places on states. This would make effective national civil rights laws impossible, including laws Congress wanted to pass after the Civil War to force southern states to let black people vote. So the 14th. Amendment was enacted. This amendment gives Congress the power to "abrogate" (ignore or override) the 11th. Amendment when necessary to right some serious wrong related to discrimination. Over the years, a lot of precedents were set about what Congress must do to prove that a serious wrong needs righting. For decades, people thought that issue had been settled.

Then came the "Reagan Revolution", and with it the appointment of radical conservative judges to federal Appeals Courts and the Supreme Court. These judges were looking to redraw the boundaries of power between the federal government and the states, and their battle cry was the old Southern call for "states' rights."

This is the setting in which the Eighth Circuit Court of Appeals heard the case of C.B. Alsbrook v Arkansas Commission on Law. As we reported in December, the case concerned a policeman named Alsbrook who was fired due to his disability. The Appeals Court found that Congress had not adequately justified its decision to abrogate the 11th. Amendment when it wrote Title II of the ADA. The judges said Congress had not proven that state governments have a history of deliberately discriminating against people with disabilities, and pointed to several state laws that outlaw such discrimination as evidence that any discrimination that does occur is unintentional. Therefore Title II is unconstitutional, therefore Alsbrook could not sue the state of Arkansas.

Then came a very similar case from the Eleventh Circuit. In Florida Department of Corrections v Dickson, a prison guard sued the State of Florida claiming that he had been denied a promotion due to his age, in violation of federal age discrimination law, and due to a heart condition, in violation of ADA Title I job discrimination provisions. For the reason noted above, this also became a Title II case. The Eleventh Circuit ruled against Dickson on the age issue. However, it ruled for him on the disability issue, saying that Congress' finding that "individuals with disabilities are a discrete and insular minority . . . faced with restrictions [and] subjected to a history of purposeful unequal treatment" satisfied the requirement to show that a serious wrong needed to be corrected.

Apparently not satisfied, Dickson took the age issue to the Supreme Court. Earlier this year, in Kimel v Florida, the Supremes ruled on his appeal along with two others concerning the Age Discrimination in Employment Act. They found that Congress had not justified abrogating the 11th. Amendment in that law. Meanwhile, Florida appealed the Circuit Court's pro-ADA Dickson decision.

Other Appeals Courts had considered similar cases and also upheld Title II. This created a conflict that only the Supreme Court can resolve. So, the Dickson case was joined with Alsbrook, and the Supreme Court planned to hear arguments in April.

But in late February, STIC learned that both cases had been settled, and the Supreme Court hearing is off. There are fairly creditable rumors that Presidential politics was the reason in both cases. Bill Clinton was said to have called his buddies in Arkansas state government and told them to drop Alsbrook because he thought that pursuing a case that might destroy the ADA would reflect badly on himself and, therefore, on his Vice President, Presidential Candidate Al Gore. Meanwhile, in Florida, Governor Jeb Bush allegedly reflected on the fact that this year is the tenth anniversary of the signing of the ADA by his dad, George Bush, who is also the father of Presidential Candidate George W. Bush, and decided this wouldn't look too good for the Republicans either. Apparently, he ordered his state officials to settle Dickson. So now the ADA is off the hook.

Probably not for long, though. There are still other conflicting Title II decisions out there, and it's likely that all we have gained is a year's time for organizing before the next one reaches the Supreme Court. What will happen then?

Nobody knows. One might suppose that since the Supremes essentially upheld Title II's "most integrated environment" provision last year in LC v Olmstead, they would do so again. However, that case did not hinge on the 11th. Amendment argument. In several other recent 11th. Amendment cases, the Court has struck down the right of citizens to sue state governments. If it does so for Title II, we can forget about even the weak "guarantees" in the Olmstead decision. The law that backed that decision would be wiped out. There would be no requirement for states to deinstitutionalize people, and they could refuse to hire people with disabilities with impunity. The Court might find that not only state governments, but county and city governments don't have to comply. And down the road, Section 504 of the Rehabilitation Act could be next.

Wheel Deal

People 65 years and older with disabilities can get a wheelchair from the "Miracle on Wheels" program, which provides electric wheelchairs to those who cannot walk and cannot propel a manual wheelchair. This service may also be available to people with permanent disabilities of any age.

For more information
(800) 749-8778


Flamboyant Gimp

by Julie Epply

Most of the people I meet in my daily travels don't know what to think of me. I am not what most people expect from a person with a disability (or a person in a wheelchair as a general rule). Sometimes I wonder if there is a "politically correct" way of being disabled and/or a wheelchair user. If there is, how does one find out? Then there is the matter of whether I would be able to conform myself to meet all of the general regulations that might apply.

I happen to be a proud member of the "hair color of the month club". I tend to be very ludicrous about most activities of daily living (some might even say I have a bathroom mentality). I am not afraid to speak up when I am frustrated or irritated with people. Don't be surprised if I am having a "bad hair day" and respond curtly to an inane comment or question from you about how "hard" my life must be and how "courageous" I am for choosing to be in this battle. Sometimes I feel very suspicious and reserved around strangers, but I generally portray the opposite reaction to the outside world to overcompensate for my personal feelings of inadequacy.

I frequently wonder why people who offer to help those of us who are in need of being "rescued" get offended if you decline the help and want to do it for yourself. The ideal situation of what is expected and comfortable to the public may or may not be easily resolved by the person with a disability. Perhaps I have not been "Wheelchair Bound" long enough to view my disability as a futile or incompetent situation.

Sometimes when life seems to be a struggle anyway, I get a little more than cranky when a complete stranger INSISTS on "helping" me. I know this makes me sound ungrateful and crabby. But then I need to point out to this same person that they will not be around for the next 20 or 30 years to "help" me, so I may very well be better off learning how to do as much as I can for myself.

In years past people had the perception that we were "confined" to a wheelchair and were "stricken" with a disability. It's the new millennium people--get with it!! There is more sophisticated equipment for people with physical limitations than ever before. Some of the new designs and concepts for equipment compare to the space program apparatus designed by NASA.

When a typical person is developing their life plan and long-term goals, independence isn't always easily attained when dealing with normal barriers that present themselves. When a disability enters the picture, even the usual barriers seem insurmountable at times. To complicate matters more, factor into the equation "learned helplessness". This may occur at different times in a person's life when he/she is trying to figure out where and how they might fit into society. I believe there are numerous reasons why people with disabilities allow themselves to be dependent on others. Most of the time it is not a conscious decision. People are often conditioned to be helpless by well-meaning spouses, parents, caregivers, and intimate relatives. I suppose sometimes that dependency can be for attention, but other times it seems that it may be the path of least resistance.

Several friends, family members and other people have told me that I am "too damned stubborn for my own good." My response to them is usually the same: "Would it be better if I just gave up altogether?" I don't want to be brave or someone's hero, I just want to make it through the day just like everyone else.


Pat's Corner

by Pat Charma

I hope everyone had a very happy and safe holiday. As most of you know I went to Florida. It was BEAUTIFUL! I'm thinking that I may retire there someday.

I'd like to thank everyone in the D.E.A.F Christmas Choir this past holiday season. It was a great time and we had a lot of fun! But, we were very busy. WOW! Time went by too fast!

Many Deaf spent New Years Eve at Binghamton First Night. From the stories I have heard it was a wonderful time. A special thanks to the interpreters for working that night!

This past February D.E.A.F had a fundraiser dinner. We had a great turnout. Thank you to everyone who gave their support and ate with us. Thanks so much to Marcus and Julie Morgan, and Linda and John Greeno, for their hard work in making this dinner possible.

D.E.A.F. also arranged for many Deaf to attend a BC Icemen hockey game. Although the Icemen lost we had a great time. And to be honest I didn't understand a thing that was happening on the ice. But I had a wonderful time chatting.

I'd like to pass on my condolences to: Ralph Bartlett for the loss of his brother, Archie, 79, of Earlville, January 8. Scott Westcott for the loss of his grandmother, 86, of Seneca Falls, January 15. Leroy Lounsberry for the loss of his wife, Mary (Tina) Helen, 85, of Endicott, January 24.

Now, I'd like to address the issue of the differences between D.E.A.F. and STDC. D.E.A.F. (Deaf Equality Advocates for Freedom) is a self-advocacy group that works on improving the community for accessibility for Deaf people. It also provides education on Deaf issues. STDC (Southern Tier Deaf Club) is a social group--just fun.


Census Sense

2000 is a federal census year. The original reason for the census was to count people living in each state, so Congressional districts could be assigned. It's still an important reason. In several recent censuses, NY has lost seats in Congress because its population went down, while that of other States went up. (There are always 435 seats, so if one state gains a seat, another has to lose one.) Some people believe our population was undercounted in 1990 due to people who refused to cooperate with the census, and that we might have lost a seat unfairly.

The census is important for other reasons also. Here's how the US Census Bureau explains it:

"Taking part in the census is in everyone's best interest. People who answer the census help their communities obtain federal funding and valuable information for planning hospitals, roads and more. Census information helps decision-makers understand which neighborhoods need new schools and which ones need greater services for the elderly. The only way to make sure people like yourself are represented in the census is to fill out the form and encourage others to do so."

Census forms--especially the "long form", which will go to 1/6 of all households nationally, but to even more in rural areas--collect personal information. Some people may feel they have reason to prevent the government from identifying them, knowing where they live, or knowing things about them. In past censuses, a lot of people refused to fill out the form for that reason. You needn't worry. Your census information is kept absolutely confidential. As the Census Bureau points out:

"The law protects your answers. By law, the Census Bureau cannot share your answers with the IRS, FBI, Welfare, Immigration--or any other government agency. No court of law, not even the President of the United States, can find out your answers. And the same law that keeps your answers out of the hands of these agencies, prevents the Census Bureau from selling or giving away your address to people who want to send you mail. Census workers are sworn to secrecy. They know that if they give out any information they see on a form, they can face a $5,000 fine and a 5-year prison term. Census workers must pass security and employment reference checks. They cannot currently work as tax collectors, assessors or law enforcement officials. The Census Bureau protects your information with security measures, including electronic barriers, scrambling devices and dedicated lines. Your answers are combined with others to produce the statistical summaries that are published. No one can connect your answers with your name or address."

City of Binghamton
Section 8 Public Notice

Public Notice

Applications for the Section 8 Rental
Assistance Program will be available
beginning Monday, February 21, 2000 at
the following locations:

City of Binghamton Section 8 Office,
4th Floor City Hall
All Binghamton Broome County Library Branches,
City of Binghamton Senior Citizen Centers,
Broome County DSS, Broome County Urban League,
Opportunities for Broome, and the American Civic Association.

For Further Information:
Section 8 Office - 772-7028
Monday - Friday, 11 AM - 3 PM

Hearing or speech impaired persons only may call 772-7069 (TDD)

Southern Tier Deaf Club Calendar

Easter Party
6 pm

14th. Inter-Bowling Associations
Ideal Bowling, Endicott
Register 12 pm Bowl 2 pm Dinner 5 pm
Bowling & Buffet - adults $18 kids $10
Bowling Only - adults $10 kids $8
Buffet Only - adults $10 kids $7
Fans - adults $4 kids free

MAY 13
Social 6 pm
Meeting 7 pm

Location TBA
2 pm

6th. Annual CVSP Picnic
10 am


Spring 2000
Issue No. 58