AccessAbility

by Maria Dibble

From the domination of the news by the Republican and Democratic conventions and their aftermath, we all know that Election Day is coming soon, but are we all planning to vote?

So many people tell me that their vote doesn't matter, that it's the same "politics as usual" no matter who's in office. Sorry folks, but not only is that a cop-out, it is tossing our most important responsibility, not to mention our greatest privilege as Americans, right out the window.

Do you ever wonder why communist countries always get a huge voter turn-out, in the neighborhood of 95%+? They're voting and they don't even have a choice. Sure some of it is out of fear, but, I believe, it's also an expression of their deepest desire to have the rights and privileges that we have as American citizens, and which we thoughtlessly and callously discard for frivolous and bogus reasons.

If that hasn't convinced you of anything, consider this. Are there issues that are truly near and dear to your heart, such as, perhaps, adoption of Medicaid Buy-In legislation, increase in minimum wage, continuation of the ADA as we know it without weakening amendments? If so, have you found out which candidates will most closely reflect your views? Remember, the President we elect this year will most likely be making several Supreme Court appointments. Do you want a leader who will choose judges who believe in limiting the power and influence of a central government in favor of local control, and who therefore will make rulings on ADA, civil rights, etc. that might weaken or even render our current laws unconstitutional? Or do you want to see judges appointed who believe that government has an inherent responsibility to guarantee and protect the rights of all citizens no matter what their gender, ethnicity, race, or physical/mental/cognitive abilities may be? Our next President could very well affect the majority make-up, policies and actions of the highest court in the land for decades to come. It is no laughing matter! It is not an issue to be taken lightly! Learn which candidates favor which types of government and policies. Understand how they think our country should be run. Think hard, consider well, and vote for the team that will support your beliefs and your future!

I can be as cynical as the next guy. I can say that all politicians are alike. But the truth is, they may all use the same tactics and strategies, but they don't promote the same viewpoints. They sometimes sound similar because they're trying to appeal to as many people as possible, but read between the lines. Look at the histories of their respective parties, examine their platforms, watch the debates. There are many important differences!

Look beyond who belongs to what religion, who said what about whom 25 years ago, and look forward to the next decade and decide what each candidate will do when he assumes the most important post in the world. Media hype is just that and nothing more. The media likes nothing better than to dig up old conflicts and controversies, to refuel old arguments that are meaningless in our time, all to create a story that grabs your attention. Remember that Al Gore is not President Clinton and that he should not be judged by Clinton's standards or behaviors. Remember that George W. Bush is not his father and should not be evaluated on whatever he may have done. Both men and their running mates are individuals and should be judged only by their own behaviors and actions, their own views and policies, their own history and credibility. Move past the media glitz and find out what you need to know, and then, please, vote. If you don't, you may be killing ADA, ending the guarantee of basic civil rights, reversing the trend of deinstitutionalization, and plunging us backward into a past I don't think any of us wants to revisit.

Last spring we reported that the Blind Persons' Literary Rights and Education Act was before both houses of the NYS Legislature. Now we can announce that it was passed and signed by Governor Pataki. It has three important features:

• School districts must teach braille to any child who is blind or has a visual impairment unless his family agrees, in the Individual Education Plan (IEP), that it isn't needed. In other words, braille instruction should automatically be in the plan unless you take it out. And it has to be there for the current year, not "third grade" or whenever "school district policy" calls for braille instruction to begin. A "child who is blind or has a visual impairment" means: "an individual who is eligible for special education services and who: (a) has a visual acuity of 20/200 or less in the better eye with correcting lenses or has a limited field of vision such that the widest diameter subtends an angular distance of no greater than 20 degrees; or (b) has a medically indicated expectation of visual deterioration."
  
  
• All textbook publishers who sell their products to NY or to any school or college in the state must make them available on computer disk in a form that can be translated into braille and printed on a braille printer.
  
  
• Licensed Teachers of the Visually Impaired must be proficient in braille.

The original bill was to take effect immediately; as far as we know, this was not modified in the final law. That means this fall's IEPs must comply. No doubt, this will be a big shock to school officials, so don't expect them to have already added braille to your plan before your meeting. Be prepared to explain the new facts of life to them.

Praise is in order for the Legislature and Governor Pataki.

Senate Majority Leader Bruno and Governor Pataki killed the Medicaid Buy-In proposal in June, though it may be resurrected sooner rather than later.

The Medicaid Buy-In is an option made available to states by the federal Ticket to Work and Work Incentives Improvement Act. States can raise the amount of income and assets a working person with a disability can have and still qualify for Medicaid. This is critically important because only Medicaid provides lifelong coverage for attendant services, prescriptions, and medical equipment and supplies. No matter where you work, you can't get that kind of coverage from a private insurance plan, and unless your salary is in six figures, if you have a severe disability you can't afford to pay for that stuff out of pocket. It's called a "buy-in" because consumers would pay premiums for coverage on a sliding scale based on their income, up to a total of 7.5% of their gross annual income. New York State's proposed buy-in plan, the Work and Wellness Act, would allow people with disabilities to earn up to 400% of the federal poverty level and keep up to $40,000 in assets while qualifying for Medicaid, but Medicaid would only pay for things that the person's employer-provided insurance didn't cover.

People with disabilities really need this. Just one example: one of STIC's full-time employees has a degenerative disease. This person needs a growing amount of assistance at home to get in and out of bed, dress, use the bathroom, eat, etc. The person's spouse has already been injured once while lifting the person. Right now, to qualify for Medicaid so the person can get paid attendant service, this person would have to quit working. Does that make any sense to you?

The New York State Assembly passed the Work and Wellness Act. Bruno refused to bring the bill up for a vote in the Senate, where it would have passed. Bruno cited cost issues, but some sources suggested he was simply being a "good soldier" and not embarrassing Pataki by passing a bill that the Governor doesn't like.

Why doesn't he like it? Good question. He told the press that it was a "budget issue" that should have been negotiated as part of the 2000-01 budget. But the bill would not have taken effect until April 1, 2001--that is, not until the 2001-02 budget year. So that was a blatant falsehood. Some Republicans claimed the bill would create an expensive permanent "entitlement". But Medicaid is already an entitlement, and nearly all of the people who would benefit from this program are already on Medicaid and, being unable to go to work without the Buy-In, will be on Medicaid for the rest of their lives. In any case, STIC and other disability advocates determined from figures provided by NY State government that within two years the Buy-In would generate more in premium payments, income tax revenues, and welfare cost savings than the program could possibly cost. There is speculation that for some reason Pataki doesn't want to do anything that would increase state Medicaid spending, even if the program would pay for itself. This simply doesn't make any sense, but few things in politics do.

One political rumor that does make sense is the one we've heard that all this is a smoke screen, that passage of the Buy-In was deliberately delayed so the Senate can sweep into Albany this fall, close to the election, pass the Buy-In, have Pataki sign it in a big public ceremony, and so provide a "boost" for Republican candidates, especially Senate Candidate Rick Lazio, who as a Congressman was a major force behind passage of the Work Incentives Act.

Whatever. Meanwhile, activists have been dogging Pataki, Bruno and Lazio around the state this summer, asking pointed questions and staging pro-Buy-In demonstrations. Rest assured that these efforts will continue, and intensify. It will be a tough fall, and winter, and spring, in Albany, until the Medicaid Buy-In becomes law.

The federal Social Security Administration (SSA) is proposing some changes to the SSD and SSI programs. These changes will make it easier for people with disabilities to gradually return to work or build up work experience and stamina without losing benefits. Last summer they raised the Substantial Gainful Activity (SGA) earnings limit for the first time in 9 years, from $500/month to $700/month. Now they are proposing to index the SGA to inflation, so it will go up each year based on the national average wage index. This is important because if you exceed the SGA limit you can lose your benefits, including, if you get SSI, Medicaid. Other proposed changes include:

Raising the minimum monthly earnings that SSA deems "services" from $200 to $530. SSA allows a "trial work period"--you can spend up to 9 months, consecutive or not, in any 5-year period working and earning money. If SSA finds that you have provided "services"--that is, earned the minimum "services" amount-in any month, it counts that month toward your trial work period. With this change, you won't enter a trial work period unless you earn at least $530 in a month. SSA also wants to automatically raise the "services" amount each year following the national average wage index.

The Student Earned Income Exclusion amounts for people on SSI have not changed since the SSI program began in 1974. This is the amount a student with a disability can earn before losing SSI eligibility. SSA wants to increase the maximum monthly amount from $400 to $1,290 and the maximum annual amount from $1,620 to $5,200. And it wants to automatically adjust these amounts annually based on the cost-of-living index.

These are just proposed rules; they must go through a public comment period, and then perhaps undergo modifications and more comments, before being enacted. Clearly these changes will be very beneficial to people with disabilities. The comment period ends soon. Send yours to:

Commissioner of Social Security
PO Box 17703
Baltimore, MD 21235
(410) 966-2830 (fax)
email: regulations@ssa.gov

As predicted by STIC and disability advocates across the state, Governor Pataki's politically-motivated pet project Hudson Valley TBI "rehabilitation center" has become a swamp of waste, neglect and abuse for people with disabilities. The Northeast Center for Special Care (NCSC) in Lake Katrine, NY was inspected this spring by state health officials. Their report showed a clear pattern of repeated serious violations, including failure to provide adequate food, basic medical care, or activities for patients; illegal use of physical restraints; frequent medication errors; severe chronic staff shortages; incompetent administrators; and employees who threatened, and carried out, retaliation ag-ainst patients who complained. The problems were bad enough that some patients were beginning to starve, several developed severe decubitus ulcers ("bedsores"), and one person had to have an amputation due to incompetent nursing care. The facility was ordered to stop accepting new Medicaid and Medicare patients, and was threatened with immediate closure in July. The report also indicated that the facility currently houses several people whose disabilities aren't severe enough to justify them being there.

Soon after the report was made public, however, State Department of Health (DOH) officials changed their tune on the facility, telling the media that NCSC was making good faith efforts to fix problems and the state was no longer contemplating closure. This sudden change was reminiscent of the facility's development process, when DOH officials who raised serious objections to the facility were directly ordered by the Governor's office to ignore DOH's consumer advisory council's opposition, override the usual application approval process, and ok the facility's creation.

Then, after several weeks of allegedly concentrated efforts to bring the facility into compliance with basic requirements, it was found that drug-resistant bacteria incubated at NCSC due to shoddy sanitation practices had leaked out into the surrounding community and was threatening patients in local hospitals. The same state health inspector who had been overseeing NCSC's alleged improvement efforts returned to the facility to investigate and was quoted by a local newspaper as saying, "there's no need for concern. We're confident that our visit will provide significant progress."

As we reported over two years ago (AccessAbility Summer '98), NCSC's construction resulted from political dealmaking. IBM was downsizing and threatening to leave NY until Governor Pataki brokered a deal wherein IBM agreed to stay and New York agreed to find buyers for vacated IBM facilities in the Southern Tier and the Hudson Valley. The state itself took over the Southern Tier plant, moving disability claims processing operations there. The Lake Katrine plant was vacant for several months. Then Healthcare Associates, the national corporation that holds most of the now-defunct and allegedly criminal NewMedico Head Injury System's facilities and is operated by some former NewMedico executives, expressed interest in converting the plant to a rehabilitation center. AccessAbility reported extensively in the early 1990s on the rampant neglect, abuse, and Medicaid fraud in NewMedico facilities nationwide that led to the corporation's decertification in New York State and eventual dissolution. DOH officials who reviewed the corporation's application for the Hudson Valley center found several problems, noting that the need for such a facility had not been demonstrated, that NYS policy was to serve people with head injuries and other disabilities in their own communities and preferably in their own homes, and that appropriate community-based services were already available across the state. About this time, NCSC President and Healthcare Associates CEO Anthony Salerno began making contributions to political campaigns, mostly to Republicans. 25% of his contributions were made "just before and after critical agency approvals" for the center, according to the Kingston Times Herald-Record. DOH officials were ordered by Pataki staffers to stop objecting and approve the project.

NCSC opened in March 1999. By June 1999 it was already clear that the facility was in trouble. The company that provided food and nutrition services to the center, Sodexho Services, was not being paid regularly, and in November they finally cancelled the contract. Then, on February 13, 2000, the Ulster County Sunday Freeman reported that staff at the facility were not being paid, that trained therapists had been laid off and replaced by lower-paid paraprofessional aides, and that chronic staff shortages were leaving units full of patients, many of whom were in comas or had severe multiple disabilities, with only 2 staff members to care for them.

DOH inspected NCSC in March and April of 2000. They studied only a small sample of the approximately 150 patients but found repeated patterns of neglect and abuse. They conducted a program audit, not a fiscal audit, but found evidence that patients often did not receive services they were supposed to get. If NCSC billed Medicaid or Medicare for those services, that would constitute the same type of fraud that was committed by NewMedico. STIC has reviewed the entire 107-page DOH report; we only have room for a few examples of what was found:

New patients were admitted but didn't get their initial assessment or assignment to activities until weeks or months later. Patients whose records indicated they participated in various scheduled activities were frequently seen wandering around their units or just sitting or lying in bed for hours at a time.

Patients were not permitted to shower more than twice a week as a matter of policy, and in practice some got showers once a week or less. Patients who missed their scheduled shower time for any reason were denied a shower until the next scheduled time.

The food service was poor and at times dangerous. Numerous complaints about the quality of the food were reported, and many of the problems with the food were directly observed by the inspectors. The food was frequently served cold after having been burned, and the menu offered little variety, with the same dishes being served day after day. Although patients were supposed to be able to request substitute meals, these substitutes were rarely provided, and sometimes the staff wouldn't let patients make the request. Several patients found the food so bad that they frequently ordered in junk food; at least one patient apparently became significantly overweight as a result. Some patients refused to eat the food but lacked the capacity to order in; they experienced life-threatening weight losses. The inspectors found that hot food was not being kept hot enough, nor cold food cold enough, to prevent bacteria growth. On one occasion the inspectors found something sitting in a pan on the stove with a temperature of 105 degrees-lukewarm. Nobody in the kitchen could even tell the inspectors what the alleged "food" was. Several patients who needed assistance to eat didn't receive it. Staff were observed standing around talking in the dining rooms as food was delivered, patients who needed assistance sat there unable to eat, and the food was taken away.

Many patients were illegally restrained without justification. In some cases restraint orders were written for people recovering from head injuries who were initially aggressive, but weren't changed and restraints continued for months after the aggressiveness ended. Several patients who had been given nothing better to do with their time than wander around and ask questions of the staff were forced into "geri chairs" (high-backed, padded chairs on small wheels with plastic or wooden trays that fasten across the person's waist) and "trayed in" for hours at a time to keep them from bothering staff. Some patients were restrained virtually all the time, in geri chairs or their beds, simply because "the family wants it."

The facility administrators often didn't investigate serious incidents, including one patient's charge that another patient sexually abused her, and an incident in which a confused patient was wandering around outside the building in the middle of the night.

Basic medical care was poor. Patients would ask to see the physician but the physician would never show up. A person being treated for opiate addiction was given an opium derivative to prevent alleged "aggression". Medication errors were frequent and went uninvestigated. Several patients who were admitted with their skin in good condition acquired severe bedsores. Sometimes sores were observed as beginning to appear but, unaccountably, no treatment was provided for several days. Sometimes nurses were seen contaminating sores with dirty dressings while "cleaning" them. Some patients were refused special air or liquid-filled mattresses, even when they specifically requested them. One person with a below-the-knee amputation was fitted with a "stump shrinker" appliance that was supposed to be worn only for an hour a day; the appliance was left on for several days, during which the patient experienced extreme pain and developed a massive systemic infection. The leg had to be re-amputated above the knee.

Sanitation practices were incredibly crude. Housekeepers were observed sweeping up dust under the feet of eating patients. Nurses and aides were seen carrying dirty laundry without wearing gloves and failing to wash their hands after changing dressings, or after leaving the rooms of patients who were quarantined. The open ends of catheter tubes were found lying on the floor.

Locked "behavioral" units had a faulty electronic door locking system with key cards that often didn't work and a central computer control that malfunctioned. Inspectors found that in the event of a fire or other emergency, residents and staff were likely to be locked in with no means of escape.

There was a lack of respect for patients and their rights. "Assessments", when done at all, were often rudimentary, containing no information about the patient's previous history, family, needs or preferences. Several patients said the staff refused to involve them in treatment planning and simply dictated to them. Some patients who were fully alert and quite independent complained that staff only contacted their families to provide information or get approval for procedures. Again reminiscent of NewMedico, one patient was kept in the facility against his will until he finally ran away. Staff claimed that his parents were his legal guardians and wanted him there, but the inspectors found that the patient was competent and had no guardian. Several patients said they were threatened if they complained. Some said that after they complained, the staff would stop responding to their requests for help. In some cases, patients who were incontinent were left in their soiled clothing for several hours. The facility's administration did not investigate these charges of retaliation.

Unremarked on by the inspectors, but evident from their report, was the fact that several of the people living in the facility had no need to be there. Several patients were described by the inspectors as being "fully alert", "independent", and able to understand information, make decisions, and move around on their own. One resident's only diagnosis was mental retardation due to Down Syndrome. Such people can easily be served in their own homes and their own communities anywhere in New York State.

As the story got out, a federal Medicare official said NCSC's problems might just be "growing pains". NCSC President Salerno told the press that this kind of thing had to be expected at a new facility that is on the cutting edge of rehabilitation therapy. DOH officials at first seemed willing to close the place, but then suddenly backed off and began an intensive effort to help the center achieve compliance, an effort that had apparently not succeeded even several weeks later, when virulent bacteria from the center began infecting the surrounding community.

The events at NCSC were predicted nearly two years ago, when Assembly Health Committee Chair Richard Gottfried and other Assembly leaders wrote to DOH Commissioner Barbara DeBuono, saying, "We are not convinced that large facilities have the ability to deliver quality care. In the past we have seen cases of fraud, overbilling, warehousing and abuse." Salerno's claim to provide new forms of rehabilitation therapy for people with head injuries echoed NewMedico promotional materials. In fact, both NewMedico facilities and NCSC provided very little therapy of any kind, and what was provided was standard OT, PT and "recreation therapy". Disability advocates across the state objected strenuously to the approval of the NCSC in 1998, citing the NewMedico precedent and DOH's own findings that the facility was unnecessary. Local papers documented the political and campaign finance aspects of the project at the time. Nevertheless, George Pataki's office strong-armed DOH and ordered the center approved. Now the responsibility for handing over millions of taxpayer dollars to a company with a shady past run by people with a track record for operating substandard facilities; for the starvation, injury, neglect, and abuse of the center's patients; and for the infection of the surrounding community by dangerous bacteria; lies squarely at his feet.

What happens when you beat a drum but there's no campfire when the dancers show up? As a consumer organization, we believe that building consumer demand for a product is how you get that product on the shelves. We don't think people with disabilities need to be protected from "too much excitement" or from being disappointed when something doesn't pan out. We think the answer to that is to get together, lean on each other, beat the drum harder, and, if necessary, use the rhetorical drumsticks to beat on something else, something more likely to respond to pain. But we do hate to get egg on our face. We hope that won't happen. Still, Self Determination seems to be stalled at the take-off point, and there are serious concerns about the direction it may take when it finally gets airborne.

The people in the OMRDD Central Office who are working on Self Determination really do believe in it and want it to happen. But we've been concerned for some time that they are a small group, disconnected from the "movers and shakers" in that huge bureaucracy, and their work is not a high priority in an agency that is mostly concerned with churning out group homes under Governor Pataki's NYS CARES program. And some of them still don't seem fully to understand what Self Determination is.

Critical to moving Self Determination from an "experiment" to a widely-available option is getting the state Division of the Budget to approve the Personal Resource Account (PRA). The PRA is a pot of money allocated to you based on your needs and abilities. It funds the individual portable budget that you and your circle of support create to buy the supports and services you need. What's different is that this budget is tied to you, not granted to an agency that provides services to you. There are lots of questions about how to ensure that someone is accountable for the money and that you will be "safe". The NYS Self Advocacy Association has been meeting with people in the budget office for a couple of months, and those people do seem to understand and support Self Determination. But they are new employees and still learning about OMRDD's system. Eventually they will send recommendations on whether and how to approve the PRA to their bosses at the top of the Division of Budget, who will make the decision. The problem is that OMRDD has had the basic outline of the PRA for over a year, but they didn't start talking to the budget office until about 4 months ago. They dropped the ball because there was no organized process to develop Self Determination, and no one with real authority at OMRDD was overseeing it.

OMRDD seemed to overreact when the Budget Division asked who is liable if something goes wrong in Self Determination. Instead of responding that OMRDD and its subcontractors will still be liable for most things just as they are now--service providers for service quality; service coordinators for tracking, timeliness and consumer satisfaction; fiscal intermediaries for money; and DDSO officials for oversight and regulatory compliance--they wrote a policy that assigned virtually all the liability to the consumer's circle of support. It required circles to make all decisions by "consensus"--taking away control from the consumer. It even required circles to get power of attorney and health care proxy status for consumers whether they're legally competent or not! Consumers have trouble finding good circle members now; imagine what it will be like if potential members are held legally liable. A circle should be an informal group of advisors and helpers; it should provide leadership and structure only to the extent that the consumer can't. OMRDD's circle looked more like a not-for-profit agency board of directors. When first asked about it, the OMRDD people just shrugged and said, "There's going to have to be some regulation to get this approved." But, following a barrage of complaints, they started rewriting.

There were also issues with OMRDD documents that describe what Self Determination can pay for. While there are limits on what Medicaid can buy, other funds can be used for most things, and where OMRDD gets the money for your PRA is supposed to depend on what you need and what source can pay for it. OMRDD's documents emphasized what Medicaid won't pay for and readers might imagine that a lot of things can't be paid for at all. These documents also were a response to Budget Division questions, and it seemed that the fact that they simply asked what will and won't be paid for was enough to get OMRDD imposing restrictions that were neither necessary nor expected.

The budget office says that a lot of what people in Self Determination want can already be done with existing programs and funding. But that's not always true. One-person IRAs (Individual Residential Alternatives, a form of supported housing), for example, rarely happen in smaller communities because OMRDD won't pay enough to cover costs. Renovating small houses and rural apartments for access can be expensive, and landlords don't have to permit it in buildings with fewer than four units. IRA staff have to be fairly highly-paid trained workers, whether the consumer really needs that expertise or not; it's hard to recruit new ones in small towns and can't always be done for what OMRDD pays. If you don't live in an IRA, there's a $26,000 annual limit on "res hab"--in home attendant services--paid for by OMRDD. That would go a long way if you could hire and train your own attendants, but it doesn't buy much when attendants work for "approved provider" agencies with high overhead costs. The limit can be exceeded, but getting approval is difficult and how to do it is not generally known. Across the state, most service coordinators are undertrained and/or unimaginative--and often overworked--and don't know how to put individualized services together or don't have the time to do so. Many service coordinators are forbidden to refer people to other agencies for services that their agency doesn't provide. The PRA will let consumers do things that can't be done now at all, and make it easier to do things that are very difficult to do now. And, it will cost a lot less than current programs.

So where do we stand? PRA approval will be delayed at least until January. Meanwhile, it's been suggested that DDSOs help consumers do Self Determination using existing programs. At the very least OMRDD would have to conduct a massive and rapid retraining of service coordinators, both its own and those at contract agencies. Even then there would still be limits on what can be done. STIC's service coordinators are highly responsive and creative. We'll be able to stretch existing programs and funds a long way, but it's far from an ideal solution.

We're still waiting to see what OMRDD does with our input and what kind of report the budget people send to their bosses. STIC learned that a much-improved rewrite of the Circles paper may be coming, but we hadn't seen it at press time. Watch our website at www.stic-cil.org for announcements.

This summer the federal Rehabilitation Services Administration (RSA) proposed a new regulation that could eventually close sheltered workshops. RSA wants to make segregated work for less than the minimum wage an unacceptable employment outcome for state vocational rehabilitation agencies. Voc rehab agencies are evaluated on how many successful "case closures" they have. A successful closure requires an acceptable employment outcome. If only integrated employment for at least minimum wage or self employment are accepted, then VR agencies won't be able to run up high closure numbers by dumping people into sheltered workshops. They'll be forced to divert virtually all of their job placement resources to supported work and assisted placement services. Does this mean workshops will suddenly be closed and people dumped into the street? NO IT DOES NOT!

Nobody is going to deem previously closed cases "unacceptable" and require people to move. What would happen fairly quickly is that VESID and CBVH would stop making referrals to workshops. VESID has slowly been reducing its referral rate, but CBVH has resisted calls to do so. If RSA gets its way, neither agency would get any credit for workshop referrals. To avoid loss of federal funds, they'd have to stop all referrals within a time limit. People now in workshops could stay if they liked, but no more new people would come in. Eventually the number of workshop inmates would dwindle to zero. Long before then, but still not for several years, workshops would pass the break-even point, where they can't generate enough money to cover costs. RSA's rule would force workshops to look down the road to that reality and start beefing up their supported work programs. At that point, the remaining workers would have two options-either take a real job with better wages and benefits, or forego sitting around with nothing to do half the time and earning 40 cents an hour the other half, and go to a "day program". NY has a very comprehensive "day program" system; Workshops have been able to foist off all but the most productive assembly-line workers on those programs. So there is no such thing as a sheltered workshop inmate in NY who could not get a real job with supports without much effort.

Naturally, there is opposition to RSA's plan among workshop operators. At the end of August, the state Independent Living Council was organizing CILs like STIC, and consumers, to send comments in support of the proposed regulation to RSA, to counteract the expected raft of provider complaints. It will take RSA a few months to process the input and decide what to do. We'll keep our fingers crossed, and you informed.

The Smithsonian Institution in Washington, DC has put together an exhibit on the history of the Disability Rights Movement. The exhibit has four showcases that are described as "innovative in design and aimed for maximum accessibility". There are also web-based kiosks to show the exhibit in alternative formats. An example of them is on the Web at:

www.americanhistory.si.edu/disabilityrights/welcome.html

A couple months ago, we stirred up a minor controversy in the Binghamton Press & Sun-Bulletin concerning group homes. Broome Developmental Services was developing a new home and some people in the neighborhood wrote to the paper to express concerns. We sent this Letter to the Editor in response:

Regarding the new group home proposed for Endwell: STIC strongly supports people with disabilities living and working in our communities. But this only really works when it's done individually. People who live in group homes tend to go around in a group, spend time only with people who are paid to be with them, and must live with people they can't choose under "house rules" that don't meet their needs. This makes it very hard for them to truly be part of the community. People with developmental disabilities can live in their own homes or apartments, by themselves, or with spouses or a chosen friend, with help from the same state agency (OMRDD) that will fund this "home", for less cost. On average in Broome County, the support these "homes" provide costs almost $59,000 per person per year. Most of you, given the option, would do a great job of setting up all the support and security your disabled family member needs, in a home that is truly theirs, for much less. This option is available, but the word is not getting out. Concerns about who might move into this "home" in the future are valid. The future trend is away from such facilities and toward individual supports. At some point (we estimate in less than 10 years) many of these "homes" will be vacant. They'll either be used by some other program or sold at a big loss to the taxpayers (since they can cost up to 6 times as much to set up as a private home of similar size in a similar neighborhood).

After the letter appeared we got several calls from people who thanked us profusely and said that none of the other agencies they contacted told them that anything other than a group home was possible. These people now get service coordination from STIC and are planning integrated lives in the community. Not long afterwards, BDS abandoned its attempt to develop that home, perhaps by coincidence, perhaps not. Meanwhile, several people wrote to the paper to criticize us. They said individualized supports might be good for some people, but not for their children. As this article was being written, we were planning to submit the following as a "Guest Editorial" to the paper; just in case it didn't get printed or you missed it, here it is:

We are very happy to see all the discussion about group homes. The amount of money being spent and the impact on the quality of life of tens of thousands of New Yorkers, and on how the average person views people with developmental disabilities, make it extremely important that our community have accurate information about this issue.

I'd like to clear up an apparent misunderstanding among some of the correspondents. OMRDD has programs, and funding, to ensure that individuals living alone, or with a chosen friend or roommate in their own home or apartment, can have all of the supervision and support they need. This is as true for people with the most severe multiple disabilities as it is for those with few limitations. Having a real home of your own, a real job at competitive wages, and taking part in the same social, religious, and recreational activities that nondisabled people enjoy, can all be achieved with absolutely no loss of support or security.

Today, for example, a young man with severe autism who is unable to communicate clearly without assistance and who needs supervision to see that he gets his daily routine done lives in his own home with the assistance of college students who provide supervision, support and socialization opportunities in exchange for free rent. Two people who use wheelchairs and need help to get in and out of bed, eat and use the bathroom can be housemates and share resources to get all the help they need while living in a home that is theirs, where they make the rules and hire and supervise their own attendants. Any number of creative solutions is possible, and can be funded.

Yes, people are being told they can't get comprehensive services unless they live in a group home. Sadly, the level of knowledge of available options, and creativity in putting them together, is not consistent across all providers of services to people with developmental disabilities. However, the fact that a particular service coordinator doesn't know how to do something or doesn't believe it can be done doesn't make it impossible. The fact that tired, frustrated families sometimes feel driven to accept a group home because they weren't told about other options doesn't mean these families are happy with the "choice" forced upon them. We strongly encourage people seeking services to shop around.

There are also more intangible issues. One correspondent referred to guilt, fatigue, and agonizing decisions when deciding how family members with developmental disabilities will be treated. Many of these decisions were made 10, 20 or 30 years ago, when medical and rehabilitation knowledge were very limited and the kind of programmatic flexibility we have today didn't exist. For many families, that was a terrible time, one they would rather not revisit. But the fact remains that yesterday's best solution is not the best solution today. Individuals with developmental disabilities can live longer, learn more effectively, accomplish more and contribute more to society now, and they can do so safely while living in real homes and participating in the real community. And we have to point out that the happiness or sense of security of family members is not the biggest consideration. People with disabilities have the same right to pursue happiness as other citizens, and to be free from fears and prejudices induced by guilt, fatigue, and emotional agony while they do so.

Nobody is going to throw anyone out of the place where they live if they don't want to leave. But there are a lot of people now in group homes who would like to leave and they aren't being told that they can. And a growing number of young adults looking for their own place simply don't want to live in group homes. Group homes are tremendously expensive to develop, and when money is sunk into them, it's no longer available to fund the integrated, flexible supports that a growing number of developmentally disabled consumers prefer. If everyone who wants to leave a group home was given the opportunity to do so, there would be more than enough room in our community's existing group homes for the small number of people still seeking them. We don't need to build new ones.

Everyone wants to "help the handicapped," so people aren't accustomed to looking hard at the cost effectiveness of these programs. But we as taxpayers need to look at how much we want to spend to make a few people FEEL safe, when we can keep more people just as safe, and give them a much higher quality of life, for less cost, in their own homes.

By law, STIC cannot and does not endorse political candidates. Even if we could, we wouldn't, because few politicians are willing to take a full-integration stand. Imagine the dilemma faced by a hypothetical black voter who must choose between David Duke and the pre-1972 George Wallace, and you've caught the flavor of the disability experience in virtually any local, state or national race. But this is a presidential election year, and mainstream media coverage of candidates' disability positions is scarce. So we've stripped the official statements of Candidates Bush and Gore of self-serving rhetoric and offer their "meat" here, with a bit of analysis. We've tried to be fair by heaping equal amounts of scorn on both sides. But please don't get the idea that it doesn't matter and you shouldn't vote. The candidates are not the same, and if they keep their word, it will make a difference which one wins. We strongly encourage you to decide whether Bush's or Gore's plan suits you better, and then get out and vote.

Spending

Gore's plan will spend $2.7 billion over 10 years in addition to proposals for special education, Medicare prescription drugs, long-term care, mental health, and other undefined projects. Bush would spend $880 million over 5 years on several initiatives in 3 broad categories; over 10 years, his total would be $1.76 billion. Gore, who is able to call on the federal bureaucracy for information, seems to have costed out most of his proposals, many of which involve continuing or increasing funding for existing programs. Bush mentions some things without giving a pricetag, so it's likely that his total would be higher than he projects. All these amounts are piddly sums in comparison to the federal budget. In fact, they're piddly compared to the New York State budget.

Role of Government

Neither candidate calls for sweeping new government-funded initiatives. Again, Gore has the federal bureaucracy feeding him information and position papers, and he proposes to continue various existing programs, in some cases increasing their funding. Bush doesn't provide this level of detail, but there's no reason to assume that because Bush doesn't mention some obscure little office that makes research grants whose results will never be used, he won't fund it. Bush, after all, got the Republican Party to drop its decades-old pledge to eliminate the federal Department of Education. For better or worse, he is no enemy of bureaucracy.

Independence and Integration

Both candidates say they support the Supreme Court Olmstead ruling and would enforce it. Bush, however, is Governor of one of the few states that refused to back off from an amicus brief that opposed the ADA requirement that states integrate people with disabilities. Gore was a Senator from Tennessee, a state whose record on integration is so bad that people with developmental disabilities had to sue a few years back to get the state moving on releasing thousands of people from institutions. Gore also likes to take credit for the activities of the Clinton Administration, so we'll point out that the nursing home industry has been a big funder of Clinton's political campaigns. Gore offers a vague "public-private" partnership that would somehow raise money to help people with disabilities and families purchase attendant services, and he endorses Clinton's proposed $3,000 tax credit for "caretakers" of people with disabilities. He also proposes "allowing" states to spend as much Medicaid money on attendant services as they do on nursing homes. This is a far cry from endorsing the disability community's view that Medicaid's bias toward institutions has been bought by nursing home industry lobbyists, and that ending this bias should be mandated by laws such as MiCASSA, not just "allowed". Bush's plan doesn't mention attendants. He observes that lack of access to assistive technology keeps a lot of people from being independent, and proposes some funding increases for technology research and information outreach, and for the federal low-interest technology loan program. Gore also wants to increase funding for the loan program. Bush proposes an innovative plan to let people who are eligible for Section 8 housing assistance apply up to a year's worth of Section 8 vouchers to a down payment on a home, and thereafter use the vouchers to make mortgage payments. Gore makes vague statements about ensuring that HUD pays more attention to the housing needs of people with disabilities.

Education

Both candidates say that the federal government should pay "its fair share" of special education costs under IDEA; Gore endorses the goal of eventually increasing the federal share of these costs to the 40% envisioned by the original law. Bush does not say this.

Employment

Gore makes lots of "proposals" to increase employment of people with disabilities. Almost all of them, however, are not-very-effective already-existing federal programs, including more "public-private partnerships", programs under the federal Work Incentives Improvement Act (WIIA, which Bush also endorses), and school-to-work transition. For what it's worth, Gore does plan to double the number of federal employees with disabilities. Bush, on the other hand, doesn't appear to know federal disability employment programs besides WIIA exist. His big idea is that people with disabilities are naturals for working at home, or, as high-tech parlance puts it, "telecommuting", and he proposes giving money to employers to buy computers and modems so more disabled workers can be "homebound" while earning money and paying taxes.

Civil Rights

Both candidates say they support the ADA and IDEA. Gore says he supports strong enforcement of the ADA, IDEA, and Fair Housing Act and would increase funding to the federal agencies that enforce these laws, apparently assuming that Clinton's sorry record on this was only a matter of money. Bush says he is for enforcement but doesn't promises any money for it. He wants to fund more technical assistance programs to help small businesses comply with the ADA, although such programs have existed for 10 years and have not kept business lobbyists from yelping like scalded dogs every time somebody files a lawsuit to make a business obey the law. Gore supports a largely symbolic federal hate crimes bill that would include disability as a covered category.

Health Care

Both candidates' positions on Social Security and Medicare reform would have impact on people with disabilities. Details on that are beyond the scope of this article. However, Gore joined Clinton in opposing the Republicans' recent extremely weak bill to provide Medicare prescription coverage via subsidies for insurers that offer benefits, and Bush was for the bill. Gore's Medicare prescription plan would provide almost as meager a benefit, forcing people who use a lot of medicine to spend up to $4000 a year on prescriptions. Gore says he is for a strong Patients' Bill of Rights, but doesn't go so far as to endorse letting people sue HMOs for malpractice. Bush supports the weak Republican position on this. NY already has a very strong law on the books and the federal debate on this issue is not likely to affect us.

Mental Disabilities

Gore's wife Tipper is a sort of mental health activist, and she has persuaded her husband to include some points. Most of them concern children with mental disabilities, and it's mostly just more funding for conventional services. He's on the family-oriented right wing of the mental health spectrum; he doesn't oppose shock therapy or forced outpatient treatment. He favors more funding for "community based services" but doesn't say they should be peer-operated. He does say they should be required to "use quality, evidence-based treatment," a code-phrase for the drugs and behavior modification that so many families and professionals like, and so many disability activists hate. Bush is silent on people with mental disabilities.

Community Access

Bush wants to do something unspecified to improve polling place access, and he would give a truly tiny $10 million a year nationwide to religious and civic organizations so they can make themselves accessible. Gore has no similar proposals.

Commitment

Gore was the first candidate to offer a disability policy, without being asked. This could be because he's the VP of a government with a huge disability bureaucracy feeding him information. Bush refused to respond to questions from the disability community for months, scheduled interviews and then cancelled them, and finally released a plan only after activists made an issue of it in the media. This could just be because he doesn't want to appear too responsive to "special interests". Anyway, this is pretty much how Bill Clinton behaved in 1992, only it took a sit-in at the AK Governor's mansion to get him to bust a move. What we said back then holds true today: "There are only traditional liberals and conservatives out there, and all the new ideas you can collect from them wouldn't fill your leg bag. ... neither side truly understands disability issues, or wants to." We do believe there's more than a dime's worth of difference between the candidates, though, and the next 4 years will look different depending on who wins. That's why we strongly urge you to pick one or the other, go to the polls and vote.

by Carrie Watkins-Smith

I would like to pass along that we now have a pager system to better serve the Deaf community! If you have an emergency at any time and cannot get in contact with Carrie Watkins-Smith, the Interpreter Services Coordinator, please dial (607) 774-4780. You will hear an operator ask for the phone number that you would like us to call. You type in the phone number then hang up. Within a few minutes we will be in contact with you to discuss the situation. If you are Deaf and need to contact the Interpreter Services, you will have to use the relay system. We have two pagers. Carrie always carries one and the other will be passed around among some of the interpreters who were willing to hold onto the pager. Having two pagers on hand allows us to better respond to the calls that we receive. I am very excited that we were able to purchase the pager services so we will have a better response time for emergencies and are also more accessible for those who have emergencies. The pagers are on 24 hours a day 7 days a week.

I also want to let you know that we have purchased new books and videos for our library. We now have the new 1,001 Encounters with Reality book that discusses different interpreting situations. We also have videotapes and books that help prepare for the RID certification test, written and expressive. If you would like to borrow any of the books that we have you may come into STIC and fill out a card with your name, address, phone number, and what you are borrowing. We ask that you borrow our books for 2 weeks and then please return them for other people who would be interested in borrowing from our library.

"The Nutty Professor"
Sept 19

"Titan AE"
Sept 25

Please help make the September showings a success
Go to open-captioned showings and give us your opinions

Already shown by the time you read this were:
"Big Momma's House"
"Rocky and Bullwinkle"
"Me, Myself and Irene"

FOR SHOWTIMES:
Call Hoyts Theater the week they are scheduled to show. They said they will list open-captioned showtimes on the prerecorded message.

724-1230 (voice)
Deafies call through Relay 711 first

Also watch for advertisements in the movie section of the newspaper.

by Pat Charma

Hi Everyone! This summer is so short and the time goes by so fast for us! Hope all of you had a great summer! Welcome back to schools and colleges for students!!

Between April and August there were many Deaf events. Easter party at Knights of Columbus, Deaf meeting at STIC, picnic at Jody's house, Deaf bowling hosted by STDC, camping at different sites, Deaf picnics at Oswego and Dorney Park. I am sure everyone enjoyed getting out and socializing!

We also had D.E.A.F. meetings. D.E.A.F. is an advocacy group that helps and supports our needs in our Deaf community. I would like to share some exciting and wonderful news for you. As a result of D.E.A.F. advocacy, we now have TTY phones at the Town Square Mall in Vestal and the Oakdale Mall in Johnson City. We also have TTY phones at Wegmans in Johnson City. We also have open-captioned movies at Hoyts Theatre. Remember, Loewes Theatre has open-captioned movies too. If you want to know when they will be having open-captioned movies please check email or ask Deaf friends.

Congratulations: The family and Deafies congratulated Stacy Allen-Cross and her husband Jay on their new home at her housewarming party and also their baby Kya's first birthday. The house is pretty and the creek is beautiful. They had delicious food and a nice visit. To Heather (Interpreter) and Bryce Honken on the birth of their baby girl Natalie Rose on May 29, 2000. To Katrina (Wilson) and Tom Lipyanc on their wedding August 5, 2000.

Condolences: Edith Cobb passed away at the age of 80 on July 11, 2000. Our most sincere sympathies to Ken Cobb and the rest of his family.

Reminders: There will be D.E.A.F. meetings once a month starting in September. NOTICE: D.E.A.F. meetings are changed to every third Thursday instead of Tuesday. We also will have Christmas Choir practice. I am not sure of the dates yet but you can call STIC at 724-2111 to ask when the D.E.A.F. meetings start and also Choir practice.

IMPORTANT REMINDER: Deaf please pay attention! If you have a doctor appointment but you do not show up, the doctor gets angry because he still must pay for the interpreter for no reason. You must call STIC 48 hours (2 days) before your appointment to cancel so that STIC does not lose money. Thank you for your cooperation.

September 16, 2000
Social 6 pm
Meeting 7 pm

October 14, 2000
Halloween Party
6 pm

November 11, 2000
Thanksgiving Party
6 pm

December 2, 2000
Christmas Party
6 pm

by Linda Greeno

Open captioning is just like going to see a foreign film. Since a language other than English is being spoken by the actors of a foreign film the production company provides subtitles. These subtitles show up in white letters at the bottom of the screen so English-users can understand and enjoy the movie.

In the old days when moving pictures were first made, there was no sound. These were called "silent films," but occasionally words would be printed on the screen between the acts. Everyone loved going to the moving picture shows, including Deaf and hard-of-hearing people. Everyone was on equal footing for enjoying the show. Then technology improved and Hollywood learned how to add sound to the moving pictures. These were called the "talkies." Ever since talking pictures were developed Deaf and hard-of-hearing people could no longer enjoy going to the movies since Hollywood shifted their focus from using action to tell the story to relying on dialogue.

After a period of time where movies were not accessible to Deaf and hard-of-hearing people, we got a reprieve. The American public became interested in foreign films. Deaf and hard-of-hearing people were thrilled: since these films were not in English they had to be open-captioned with subtitles so that hearing people could enjoy them. Which meant that Deaf and hard-of-hearing people could also go back to enjoying motion pictures. However, our equal access was short-lived. Many foreign films changed their format from subtitles to turning off the foreign speech vocals and overdubbing English vocals, making subtitles "unnecessary." Once again we Deaf and hard-of-hearing people were excluded from being able to enjoy motion pictures.

Since 1990, when President Bush signed it into law, we have had the Americans with Disabilities Act (ADA). However, the ADA does not include movie theaters, because just prior to the signing of the ADA, when we were all sleeping in the middle of the night, some senators in Congress, at the urging of lobbyists for the entertainment industry, deleted the requirement for movie studios and producers to provide equal-access open captioning on all their movies. Currently in Portland, OR there's a court battle going on where a group of Deaf people are suing for the right to accessibility of attending a movie theater to enjoy first-run movies with open captioning. We are anxiously awaiting the results of this suit.

For a very long time lots of Deaf and hard-of-hearing people haven't gone or very rarely go to movie theaters, because we are unable to enjoy the movie or understand what the movie is all about without the dialogue shown through captioning. Just imagine yourself going to a foreign film where all the actors speak a language that you do not understand and the film is not subtitled. How often would you find that experience enjoyable? Right! It's worthless.

Occasionally some of us will go to a movie even if it is not captioned because our hearing children, hearing friends or hearing family members want to go see a movie and we just want to share in the experience of being with them so we go ahead and go. But, do we enjoy the movie? No, not really. We are usually bored, frustrated and uncomfortable. Our discomfort tends to cause our hearing family and friends discomfort and frustration too because we keep bugging them to tell us what is being said. Often as not they don't tell us everything because they're glued to the movie and don't want to be bothered or miss anything. So why do we ever bother going?! Because, we really want to go! This is the problem! All the commercials and ads make the movies sound so exciting and so good, but we know we are left out.

Most VCR tapes have closed captioning. Years ago the only way Deaf and hard-of-hearing people could see a movie and follow the story line was to wait for the movie to come out on video. That usually meant waiting more than a year before we could see popular movies. Now the wait is down to about 6 months. A major problem of waiting so long to see the popular movie is that Deaf people are unable to join in popular discussions or feel a part of the general populace sharing in the excitement of the Academy Awards or understanding the origins of current jokes and puns. Once the movie is out on video, Deaf and hard-of-hearing people appear stupid to the "hearing world" by wanting to talk about entertainment that is old news. While waiting for a movie to come out on video it sometimes becomes hard to remember which movies you had wanted to see unless you put a lot of energy into going to video stores and keeping up.Why should we have to wait to see first run movies? Why can't we join in the excitement together with hearing people and share all the entertainment together? We Deaf and hard-of-hearing would love to go to movies.

The biggest obstacle seems to be that the studios and production companies say people who can hear complain that they don't want open captioning with the words shown at the bottom of the screen, because they find it annoying. What I find hard to understand is that very few cities and towns have ever shown an open-captioned film, so how do these people who complain know that they would find open captioning annoying?

NEXT TIME:
Open vs. Closed Captions in Theaters &
The Local Theater Experience