AccessAbility

by Maria Dibble

I had almost convinced myself that passage of the Medicaid Buy-In in the Work & Wellness Act early next year would not be too detrimental a delay. After all, how much difference could a few months make? Besides, it wouldn't have gone into effect until April 2001 anyway, so no harm done, right?

Wrong! And here's why:

I now stand to lose yet another qualified and excellent employee due to the delays and the uncertainty of its passage. While promises have been made (see Buy-In Blues), until those promises become a reality, people with disabilities are left in limbo.

In the case of this one employee, her income status will soon change (due to her frivolous and irresponsible acts of falling in love and getting married), thus putting her over the threshold limit, causing her to lose her Medicaid and her essential homecare services. Her care costs around $400 a week, which the "higher income" can't cover, and the resulting potential spend-down is also too high for the newlyweds to afford. Her husband is in the military, serving his country, but his insurance won't cover her needs, leaving them very few options.

Her choices include:

Option 1: Quitting her job at STIC, thus staying below the income threshold and keeping her Medicaid and homecare services. She'd be leaving a job she loves and would no longer be paying taxes and helping to support herself, but she could get out of bed in the morning, use the bathroom, be assisted with bathing and dressing...In other words, live!

Option 2: Staying at STIC, losing Medicaid and therefore homecare, then accruing a significant debt to cover her care out-of-pocket. Meanwhile, she waits and hopes that the promises will indeed be kept and that they won't change the implementation date because a whole year will have passed since the legislation was introduced.

Option 3: Cutting her hours at STIC, going back to college full-time, and having VESID pick up the tab for her homecare. While she probably wouldn't get the same level of service she is receiving now, she could still function (though in a limited capacity). So what if her quality of life and her independence are somewhat sacrificed in the process? She is on the "public dole", we need to cut expenses, Medicaid Buy-In might cost too much...While she knows this option will probably compromise her health, she is feeling drawn to this choice, since at least she can still work a bit and have homecare, even if it is minimal.

If I sound somewhat angry and cynical, perhaps it is because that is how I'm feeling. The last option will surely cost government a lot more money than allowing her to keep her Medicaid, since in addition to her care they'll be paying for a full semester of school and maybe more if the legislation doesn't go through as is. STIC loses the valued services of an excellent worker, at least in part, in a time when good employees are very hard to come by and keep. She endangers her health so that she can live what approximates a typical life, while she and her husband begin their marriage with this huge life-threatening issue hanging over their heads.

I know that even if the Buy-In had passed this year she couldn't benefit from it until April, but she may have been able to make other arrangements if she'd known the time would be short. However, no legislation exists, there is no guarantee that it will pass, and if it does, no guarantee that she'll be able to access it immediately on April 1. In fact, the way government operates, that seems very unlikely.

So while politicians quibble about costs, phrasing, timing, need, etc., real people have their lives turned upside down, their independence jeopardized and their quality of life reduced. All the talk about getting people back to work is apparently only good for those without disabilities. If you're disabled, well, be patient, wait a bit longer, hope or pray, beg for more hand-outs, and maybe, if you're lucky, this bill will pass and you can join the rest of society in a real job and earn real money at last.

We have waited for years for government to do something about the many disincentives and obstacles that prevent people with disabilities from working. Finally, Congress and the President take action, but our joy is short-lived since the NYS Senate and Governor couldn't see fit to make it a priority this year. Over the last two years, I've had several employees turn down more hours due to their need for Medicaid, while others have asked me not to give them a raise. I wonder how long it has been since one of our public officials had to refuse a salary increase or request a cut in pay? People with disabilities have to do this regularly. While others are recognized for their hard work by getting promotions, raises, bonuses, etc., disabled workers must continually devise new strategies so they can keep their income low and stay qualified for their Medicaid benefits.

I, for one, am tired of waiting, losing capable people, paying people less than they are worth. Join me this next year to ensure that promises are kept and this law becomes a reality. People with disabilities are a force to be reckoned with, let's make sure that no one forgets it.

Make sure your local representatives know that you will tolerate no more delays, that your patience has run out, and that you are not asking for a hand-out or special privilege, but instead are demanding your right to live in your community, with self-reliance and a good quality of life. Together, we have the power to make sure that the Work & Wellness Act doesn't become the Wait and Wasteful Act, getting bogged down in another political quagmire. This is one promise they are going to keep!

by Julie Epply

self-control: noun; will, discipline, self-command, self-discipline, self-government, self-mastery, self-restraint, willpower
Related Words reserve, self-contained-ness, balance, stability, dignity
Idioms presence of mind

control: noun; power, authority, command, domination, jurisdiction, mastery, might, strings, sway

control: verb; compose, collect, contain, rein, repress, restrain, simmer down, smother Related Words adjust, regulate, curb, master, quell, subdue, govern, direct, dominate, handle, manage, supervise, discipline Idioms put through the mill, take in hand

This is an editorial piece about what it means to be a person with a disability and how the concept of control affects our lives. Does it matter if a person has a cognitive impairment or a physical disability or a combination of both? What about a person who is born "handicapped" versus a person who has acquired their disability later on? Is there a special circumstance that distinguishes the amount of control we have over our own life and does this apply to all, or just specific cases? Does it matter how old we are? Is the level of control different, as each disability is different? Does it change periodically as we change into different stages of growth, maturity, development or level of impairment?

Growing up as a person without a disability I had the usual amount of stubbornness about being controlled by my parents and teachers. For example: bedtime, doing homework, chores, clothing choices, boyfriend choices, curfew etc. However, I was pretty fortunate to have some of the decisions left up to me. So if I made an error in judgement I was sure to reap the consequences of my decision/actions almost immediately! But, through the rare moments when I lacked self-control I learned many valuable life lessons.

Because I acquired my disability in my 30s, I was (and am) very ungracious about losing my own personal control physically, mentally, and socially. You see, my disability has its own way of controlling me. There are definitely things I cannot do for myself that I have no control over and need help with, but why is it improper for someone to ask if I need help before jumping in to do it for me? I can ask for help. I do frequently. There is a certain amount of personal pride that leaves me each time I have to ask for assistance with simple things that I used to be able to do without even thinking. I have yet to understand what the reward is to those well-meaning friends, family members, and strangers who "just want to help". I guess the only answer is impatience. I get impatient when I cannot do it for myself, and the people I deal with get impatient because they "hate to see me struggle" and/or are in a hurry.

I am a parent of a young man who is autistic. As parents we are expected to control our children's lives and environments to keep them safe, healthy, and happy. If we (parents/caregivers) do not perform this job up to society's expectation we are at risk of losing custody of them. However, when and where is the magic cut-off point when our children are allowed to make their own decisions and learn to live with the consequences? Who can tell if a person is capable of making decisions if they are never allowed to choose between what they want to eat, wear, what time they go to bed and an innumerable amount of day-to-day decisions we unconsciously make for them? Who will be there to control it for them when we are gone?

Recently I have visited two other adults who have the same disability as myself, who are in a nursing home due to the fact that they have extensive physical needs and they are unable to do and live by themselves. At this time both people wish to leave this facility but cannot because they do not have the "natural supports" (e.g. family, spouses, friends, neighbors etc.) necessary for them to be safe and healthy outside of that institution. Both of these individuals are in their 40s. They have been stripped of the right to control their own lives due to the fact that our community, state, and society have not established a way for people to live outside of institutional settings.

My questions are these: How can we dictate and control people's lives and then just drop the ball when they need more or different support than we are willing to give? Why can't people choose situations and take personal risks if they wish to control their own lives? Why is our state and our country blind and deaf to those who require the financial and physical help to become truly independent and happy on their own terms?

Development Assistant
20 hours per week

• Must have excellent writing and communication skills (enclose a sample of writing with resume).
• Experience with fundraising, grant writing and public relations preferred.
• Windows computer fluency and experience in desktop publishing essential. Applicants' computer skills will be evaluated.
• Experience with Page Maker 6.5 preferred.

The Development Assistant will assist STIC's Executive Director
and Development Coordinator with:

• fundraising events
• grant writing
• prize and corporate sponsorship solicitations
• annual report
• public relations
• public speaking
• desktop publishing of flyers, brochures, manuals

Send resumes to Maria Dibble at:

STIC
24 Prospect Avenue
Binghamton, NY 13901
(607) 722-5646 (fax)
No application is required, only a resume and writing sample. Applicants who do not submit a writing sample will not be considered.

It was a very busy fall for Buy-In battlers and Work & Wellness wonks. Early indications were that the battle may be won, but we won't count our chickens before they're fried.

The Medicaid Buy-In will let people with disabilities pay a premium on a sliding scale for Medicaid coverage if they take jobs that bring their income above the current eligibility threshold. This means they can retain lifelong coverage for personal attendants, prescription drugs, and medical equipment and supplies that they would otherwise lose, and which cannot be replaced by employer-provided health insurance. Under the recently passed federal Work Incentives Improvement Act, states have the choice to "opt" into the Buy-In. New York's proposed Work & Wellness Act would exercise that option and let workers with disabilities participate with incomes up to 400% of the federal poverty level and up to $40,000 in assets.

The Work & Wellness Act was passed by the Assembly in June but stalled in the Senate, apparently on the instructions of the governor, who called it a "budget buster" during the 2000-01 budget debate, even though the bill wouldn't take effect until the 01-02 budget year. In fact, Pataki's Division of the Budget (DOB) had developed inflated estimates of the program's potential costs, but was forced to back down when figures from other states that already have the Buy-In showed that between 90% and 98% of people who take part in the program are already on Medicaid, for whom there is NO additional cost.

As summer ended, activists kept up the pressure, dogging Senate Majority Leader Bruno and Governor Pataki at election campaign appearances and other events across the state. Independent Living activists confronted Pataki in Westchester County and Watertown; both times Pataki said the bill would pass with the 2001-02 budget. Bruno was snagged in Utica and also said he supported passage.

Pressure, and publicity, increased when Republican Senate candidate Rick Lazio, who was a principle supporter of the Work Incentives Act in the House, ran a TV campaign ad that strongly implied that New York already has a Medicaid Buy-In program and that Lazio was responsible for it. Angry advocates gained prime media coverage for their response, including in the New York Times.

In October, the Medicaid Buy-In Coalition of statewide groups representing Centers for Independent Living, people with mental disabilities, and people with HIV/AIDS, held a rally on the Capitol steps in Albany. Some 250 people with disabilities and others chanted, "Work and Wellness! Pass it now!" and heard from speakers, including STIC Executive Director Maria Dibble, on the importance of the Buy-In. Several people took the microphone to speak simply of how their inability to secure Medicaid coverage has kept them from becoming fully productive taxpayers. After the rally, several dozen people trooped off to continue their chants in the hallway outside Bruno's offices. Before the rally, organizers held a press conference to clarify that despite all the publicity surrounding the Lazio ad, and the need to be accurate about the absence of a Buy-In program in New York, this was not a partisan political effort. Lazio was given credit for supporting the Work Incentives Act, and speakers said that they didn't care who won the Senate seat; they just wanted the Buy-In passed.

The rally and press conference generated front-page coverage in the Albany press and Dibble's remarks at the press conference were heard around the state on public radio (except in Binghamton, where the local station had a problem with the tape). Binghamton area TV stations also interviewed STIC staff about the issue. Asked for comment on the rally, both Pataki and Bruno repeated the falsehood that the bill, which had always been scheduled to take effect on April 1, 2001, the first day of the 01-02 fiscal year, had not passed with the 2000-01 budget because the Democratic Assembly had not appropriated funds to pay for it in that budget. Despite their definite statements at earlier public events, neither Bruno nor Pataki told reporters that the Buy-In would be approved. Both said simply that they expected it to receive serious consideration during the 01-02 budget process. Assembly Speaker Silver said the bill would be a top priority for his chamber.

In the wake of these promising but still uncertain events, CIL advocates made the Buy-In a top issue in their 2001 Disability Action Agenda, and the Buy-In Coalition continued its plans for a full-court press beginning in January. If you're interested in getting the Medicaid Buy-In passed, your help will definitely be needed this winter. Watch our website at www.stic-cil.org for details.

On October 11, 2000, the Supreme Court heard oral arguments in the University of Alabama v Garrett case. As we've reported (AccessAbility Summer 2000), this case may be the deal-breaker for the ADA's Title II provisions that regulate how government bodies treat people with disabilities, including the justification for the Olmstead decision that requires states to serve people in the most integrated setting.

The case is similar to others that have been decided in different ways by different federal Circuit Courts of Appeals. Broadly, the problem is this: Over time, the 11th. Amendment to the Constitution has been interpreted to mean that citizens cannot sue state governments for damages without their permission. Individuals can get "injunctive relief"--an unenforceable court order that the state must not do whatever it did wrong again--but they cannot get either monetary damages or other compensation, such as reinstatement for an unlawful firing, from the state. After the Civil War the 14th. Amendment was adopted, which allowed Congress to ignore ("abrogate") the 11th. Amendment if necessary to ensure equal protection of the law for all citizens. Arguments about the constitutionality of Title II have centered around whether Congress was justified in its stated intent to abrogate the 11th. Amendment on those grounds. The federal appeals court ruled that Alabama had violated the ADA in Patricia Garrett's employment discrimination claim, and Alabama appealed to the Supreme Court.

Alabama claimed that Title II was so broad in its effects that not only did Congress not justify it, but that it amounted to a Constitutional amendment by other means. In the oral arguments, Alabama's lawyer voiced a defense that a Circuit court, in the Alsbrook v Arkansas case that nearly went to the Supremes last spring (see AccessAbility Spring 2000), had approved: that if states have enacted laws against disability discrimination (and all of them had before the ADA was enacted), that is evidence that discrimination on the part of state governments is not widespread or deliberate enough to justify Congress abrogating the 11th. Amendment.

It's not clear from the oral argument transcript which way the Justices might have been leaning, but the central issue debated--one that we haven't discussed here so far--was whether Congress found that historical discrimination by state governments specifically rose to the level of a violation of the Constitution. An example would be violation of voting rights. In the 1960s, several southern states did not permit black people to vote, whether through poll taxes that poor black voters could not pay, or simply by not intervening when they were kept from voting. The right of a citizen to vote is clearly protected by the Constitution. Alabama pointed out that southern states had voting rights laws, but they were shams that were never enforced, and that this led to passage of the federal Voting Rights Act. Alabama argued that the only way for Congress to justify Title II of the ADA would have been for it to find that the existing state laws against disability discrimination were similar shams. Some Justices, though, appeared to believe that one could demonstrate a 14th. Amendment equal protection violation simply by showing that discrimination is both intentional and has no rational basis. That would certainly fit the facts of the case of Pat Garrett, who was jerked around by her supervisor simply because she had cancer, even though her job performance was not affected, and it would also describe Congress's findings when it enacted the ADA. Other Justices seemed to believe that Congress should have explicitly stated that it saw Constitutional violations in those findings.

The argument transcript reveals other interesting tidbits. At least one Justice seemed to be considering ruling that this case was purely an employment discrimination case and ought to be considered only under ADA Title I. This would protect Title II from being weakened or destroyed, and would also finally resolve the years-long confusion over how to address employment discrimination by government entities, but Garrett's lawyer argued that the Court couldn't consider that issue since it had not been raised by either side in the case. One also wonders what Alabama's lawyer was thinking when he claimed that the ADA wouldn't be constitutional even as applied directly to access to voting rights, because it exempts courthouses and voting booths from accessibility requirements. Most people don't vote in courthouses, and in any case the ADA contains no such exemption. It also seemed clear that Alabama's lawyer knew he wasn't just arguing to get his state off the hook for how it had treated Garrett; at several points he tried to direct the Justices away from a narrow consideration of the issues by insisting that the entire ADA is unconstitutional as applied to state governments.

It's far from clear from the transcript how the Justices will rule, but we should know the answer to that question in the next two or three months.

Self Determination is a learning process and a systems change process. The biggest thing we've learned so far is how much change is really needed.

In October, members of the Statewide Self Determination Task Force met in Albany to talk about how Self Determination is going. People with disabilities, family members, and advocates spoke openly and honestly about their frustrations with delays and how some basic principles seemed to have been forgotten. OMRDD officials listened carefully. Here's what we told them:

SERVICE COORDINATION

Problem: Self Determination service coordinators have a lot more work than we expected.

Helping someone set up a household or a job without using existing systems like IRAs and workshops takes more time. So does helping people create circles of support and do planning and budgeting. The organizations that offer service coordination aren't getting paid enough to let service coordinators spend more time working with fewer people. Service coordinators can't get enough training in these new methods.

Solutions: OMRDD needs to do a lot more training, with service coordinators watching more experienced service coordinators actually solving real problems in creative ways. OMRDD also needs to pay more for Self Determination service coordination.

SAFETY

Problem: People with developmental disabilities need their rights to life, liberty and pursuit of happiness protected while being as safe as possible as they live, work, and play in the real world.

The system does a good job with safety, but often doesn't protect people's rights to be free. Most people with disabilities, like most Americans, are willing to trade absolute safety for greater freedom, and with cases like LC v Olmstead, they are taking their views to court. Folks at OMRDD who are used to "safety first" have trouble figuring out how to put freedom first instead. Their first try put too much responsibility on circles of support, making it hard to get people to join circles.

Solutions: Self Determination participants and their circles need to do a better job of explaining in their plans how they will deal with health and safety issues. OMRDD needs to understand how existing safeguards like service coordinators and DDSO oversight can support Self Determination without holding volunteers liable or violating freedom and privacy. It might help for OMRDD officials to meet people in the pilot and see for themselves that they are safe.

MONEY

Problem: There isn't enough money, and it doesn't flow easily.

New York State's Division of Budget (DOB) is taking a long time to approve the Personal Resource Account (PRA)-the individual, portable budget based on your needs. Without the PRA, a lot of rules get in the way when we try to do new and creative things. This makes people lose faith in Self Determination. Right now, people in Self Determination are using "new money" from the NYS CARES plan. Later, though, people in institutions and group homes who want to move out will have to use the money that's already being spent on them. OMRDD needs to think about how to do that.

Solutions: DOB could let people in the pilot use money the way they would if the PRA were approved-in other words, pilot the funding as well as the services-so they can see how well the PRA will work. OMRDD needs to plan for the future when most people with developmental disabilities will not live in group homes. It needs to help agencies close houses that people don't want and put the money into services that they do want.

CIRCLES OF SUPPORT

Problem: A good circle is hard to get. Circles aren't for everyone.

We all know people who are happy and good at what they do, but don't spend much time with friends or neighbors. Many people who grew up in segregated settings don't have real friends or experience in making choices. It's not fair or realistic to expect every person with a disability to be a "social butterfly" to qualify for Self Determination. The principles of Self Determination-freedom, authority, supports, and responsibility-can all be achieved by individuals working with one or two trusted friends, relatives or even just a service coordinator. People who do want circles have trouble finding people who have time and dedication for the task, and circle members aren't always getting enough training or information.

Solutions: Stop requiring participants to have strong circles. When we settle things like the PRA and what the money can be used for and what circles need to do about safety, circle members will understand their roles better and be more confident about what they can do. Over time, we need to make sure everybody served by the system does real person-centered planning and has opportunities to make friends in the community.

LEADERSHIP AND PLANNING

Problem: Self Determination requires big changes to the "system", but there's no clear plan.

Self Determination planning has been done by an enthusiastic, but very small, group of people in OMRDD who aren't top decision-makers and who have other jobs to do. This slows things down. The committees of consumers and professionals that work on different issues and the Advisory Committee that watches everything haven't been meeting and providing input from consumers to keep things on track.

Solutions: We need a written plan that shows how Self Determination will be expanded to everyone who wants it by 2005. It needs to show how each DDSO will have enough money and support staff to handle hundreds of participants, how service coordinators will get in-depth training and time to do their jobs, and how OMRDD will move money out of segregated settings to support people in integrated living. This plan needs to be shown to everyone in state-run and voluntary agencies, and top OMRDD officials need to tell everyone that this is the new direction for the entire system and it has their full support.

WHAT NOW?

OMRDD's Self Determination team put our concerns and ideas in a report for OMRDD's top executives, and promised that they would study them and decide what to do. They also promised that the committees would begin meeting regularly again to make sure things are done right and on time. As of this writing, there hasn't been much response from OMRDD executives, and the committees did not begin meeting until December.

We know how hard learning new ideas and making changes is. We are lucky to have so many people on task forces in and out of OMRDD who truly believe in Self Determination and want to make it happen for all New Yorkers with developmental disabilities. We are beginning to wonder, though, if that's going to be enough. It may be time for consumers and families to get together and start speaking up.

by Ken Dibble

The Northeast Center for Special Care (NCSC) narrowly evaded closure in October under questionable circumstances that left advocates and federal officials searching for ways to cut through the tangle of political dealmaking and economic boosterism that seemed to be keeping it alive against all odds.

As we reported last issue, the NCSC occupies a former IBM building in the Hudson Valley that Governor Pataki pledged to find a use for in return for IBM's promise not to pull all of its operations out of the state. The 270-bed facility, an alleged "specialty treatment center" for people with traumatic brain and other injuries that functions, and is licensed as, a nursing home, is operated by a Pataki campaign contributor as part of a for-profit corporation that owns several former NewMedico facilities and employs several former NewMedico executives. NewMedico was driven out of business several years ago amid widespread allegations of Medicaid fraud and abuse and neglect of patients.

The facility was allowed to open over the objections of several NYS Department of Health (DOH) officials whose review deemed it both unnecessary and counter to state law and policy on services for head injury survivors. Sources told STIC at the time that those officials were ordered point-blank by top DOH administrators to "shut up" about their concerns, on instructions from the highest levels of the Pataki administration.

Last March and April, DOH inspectors visited the facility and found pervasive patterns of serious neglect and abuse of patients, including starvation, uncontrolled infections, unjustified physical restraint of patients, lack of medical or rehabilitative treatment, and retaliation against patients who complained. Based on that report, the facility was forbidden to accept Medicaid or Medicare and was facing potential closure unless major corrective actions were taken immediately. Then, over the summer, it emerged that drug-resistant bacteria generated by unsanitary conditions in the facility had migrated to local hospitals and were infecting the patients there.

Since our last report, STIC has learned that the facility underwent three more inspections after allegedly completing corrective actions, and that three more unfavorable reports were issued. With a cut-off date set for October 9, 2000, the decision to close the facility was suddenly and inexplicably reversed, and the NCSC remains open as of this writing.

As these events unfolded, disability advocates who had opposed the facility since it was first proposed over two years ago once again got media coverage and sent copies of the first inspection report to some 30 state and federal officials, including Governor Pataki, calling for the facility's closure. Disability Advocates, Inc. staff attorney Simeon Goldman was quoted as saying, "Clearly, good and sound policy played second-fiddle to the politics and economic interests of both state and local government officials, and as a result, we now have a disaster."

On September 29, 2000, Anthony Salerno, President of both NCSC and its sister facility, the Cortland Community Re-entry Program, sent Pataki an 8-page response to the advocates' letter attempting to refute their allegations. Several statements in Salerno's letter were patently false:

"The [inspection] 'report' the committee is referring to is the New York State Department of Health/HCFA survey of NCSC dated April 6, 2000. Since that date and three months prior to the writing of this letter, the NCSC had implemented and the Department of Health had approved the Center's Plan of Correction." "All survey issues have been addressed and corrected..."

In fact, DOH had documented that the facility had not implemented the plan of correction in three additional reports, and the facility was still scheduled for closure the day this letter was written, and for several days thereafter, due to noncompliance.

"No monitor has ever been placed at the Center."

A source inside the facility told STIC that DOH officials "are camping out here."

"...subsequent to the initial Times Herald Record article referring to the drug-resistant bacteria...Hospital spokespersons and infectious disease physicians are quoted [in other articles] as clearly stating the reports to the press were false and in fact the hospitals experienced no specific problems with regard to drug-resistant bacteria specifically related to the Northeast Center for Special Care."

STIC staff and other advocates conducted a thorough search of Hudson Valley media back issues for articles documenting Salerno's claim but could find none.

"Oddly, it was a supporter of ADAC [the Americans Demanding Access Committee, one of the organizations that sent the letter to Pataki and other officials] who originated the phone calls to the area hospitals, inferring that a drug-resistant bacteria problem existed; somehow this mis-information was leaked to the newspapers."

No member of ADAC made any such call, and the local papers clearly reported the concern about bacteria as originating with community hospital officials, not advocates.

STIC has learned that job announcements were published for most of the facility's positions, and some sources say several new administrators were hired. However, as of early November it seemed that not much had changed. Salerno concluded his letter by inviting ADAC members to tour the facility, and a tour was scheduled. However, the afternoon before it was to take place, the head of NCSC's Spinal Cord Injury Unit canceled it, citing "staff absences." STIC learned that on the day in question, only two aides were present to serve an entire floor of patients.

In early November, an official of the Cortland Community Re-Entry Program called STIC and said he had been instructed by his superiors to inquire about becoming a member of Southern Tier Independence Center. Cortland is not part of STIC's primary service area, and STIC staff responded that our bylaws permit only individuals, not organizations, to be members. STIC's bylaws also require that all members support our corporation's aims and purposes. STIC's Program Services Coordinator is an active member of ADAC. This event raised questions as to what sort of strategy NCSC may now be contemplating.

After looking into the situation, the federal official charged with enforcing the Supreme Court's Olmstead decision for the Health & Human Services Department Region II Civil Rights Office said the "very existence" of the NCSC facility violates the ADA. At this writing, both this official and Disability Advocates, Inc. were pursuing further measures.

In October, at meetings in Syracuse and Utica, a statewide Coalition to Implement Olmstead was formed. So far it includes representatives of Centers for Independent Living, Syracuse University's Center on Human Policy, and disability advocacy organizations in Rochester and New York City. Its goal is to see that NY State complies with the Supreme Court ruling and federal Medicaid requirements that people with disabilities be served in the most integrated setting appropriate to their needs and that an effectively functioning plan exists to assist people to move from segregated to integrated settings at a reasonable rate. One of the attorneys that represented the plaintiffs in the Olmstead case was on hand in Utica to provide information and advice.

Since then, coalition members have been seeking to involve additional groups and moving forward on several fronts:

A new position paper was developed to include in the CILs' 2001 Disability Action Agenda.

Members will work with the legislature to draft a new bill to require all state agencies that serve people with disabilities to have a coordinated Olmstead plan. (Last year a bill proposed in the Assembly went nowhere.) A search is on for Senate sponsors as well.

Other members have met with Department of Health officials and are planning further meetings with representation from both upstate and downstate.

Some members have published announcements that they are looking for potential plaintiffs for a lawsuit to get Olmstead enforced; they are beginning to receive responses from interested people.

The Coalition is just in the beginning stages of its efforts; we'll keep you informed on its progress.

In September, representatives of most of the 37 Centers for Independent Living (CILs) in NY State met in Albany to talk about creating a statewide advocacy network. Out of that meeting came a proposal that is being considered by the NYS Independent Living Council (NYSILC) during its 3-year-plan development process.

That might sound like typical bureaucratic gobbledygook, so here's what it really means:

Over the past few years, CILs like STIC have had some success in getting things changed on the local and statewide levels. Locally, we get more curb cuts and accessible stores and offices; sometimes we get a program to be more inclusive of people with disabilities or more employers to hire workers with disabilities. Statewide, we got the Consumer Directed Personal Attendant (CDPA) program, the Reasonable Accommodations Act, and more funding for CILs, among other things.

Meanwhile, many big problems remain, or keep coming back. Almost every year, the governor tries to cut homecare. Most school systems refuse to integrate students with disabilities into regular classes, and the State Education Department refuses to enforce integration law. Our leaders' left hands don't know what their right hands are doing, and their more powerful right hands dwarf the piddly stuff their wimpy left hands do. OMRDD gets millions of dollars to build group homes and give pay raises to institutional workers, but puts only a few thousand dollars into developing Self Determination and no new money into providing the most integrated individualized community services for more people. OMH gets millions of dollars for forced outpatient treatment but only tiny sums to expand consumer-controlled programs that prevent the need for such treatment. OMRDD gets more money to assist people already in supported work, but VESID gets no new money to start new people out in supported work. A law is passed that says it is state policy to serve people with traumatic brain injuries in integrated programs in their own communities, and then the governor railroads a huge TBI nursing home into existence over the objections of officials who try to enforce that law. VESID is pushing integrated employment, but CBVH is actively resisting it. Overall, despite pretty rhetoric, our state is still largely committed to a disability service system that relies on restrictive, artificial, segregated institutional residences and programs and is not moving forward fast enough to free our people or help them become more productive.

So, while CILs have shown that they are pretty good at advocacy, clearly, we need to do a lot more of it. We need to work toward a unified disability policy in NY that defines integration and independence as the future we're all heading for, a policy that will keep politicians from passing pork to segregated programs and stick-in-the-mud bureaucrats from sabotaging reforms. The best way to do that is to combine our resources and work together. This is what the Advocacy Network can do.

Here's where NYSILC comes in. NYSILC is a not-for-profit corporation created by the 1992 amendments to the federal Rehabilitation Act. Its purpose is to plan for, and support, the development of CILs in our state, and its governing board consists mostly of CIL representatives and representatives of other disability groups. It shares joint responsibility with VESID and CBVH for making and monitoring 3-year plans for the administration of federal CIL funds in NY. NYSILC uses some of those funds for its own costs, and gets to decide how to spend another $880,000 each year. Right now nearly all of that money is used by CILs for individual projects. STIC, for example, used some for our new computer network, and to purchase consultant services for our golf tournament.

Over the last year or so, major changes in the Board of Directors and staff of NYSILC have dramatically increased its visibility and effectiveness as an advocacy tool. They led the successful fight to keep New York from opposing the ADA's ability to regulate state governments in the Olmstead case and to get Attorney General Spitzer to adopt a pro-ADA stance in the Garrett case. They've also been instrumental in the coalition to pass the Medicaid Buy-In and in the voter registration drive just ended. STIC makes no bones about the fact that we were pessimistic about SILCs in general and NYSILC in particular (and we had good reason for it at the time), but now we can see real potential in the organization.

If the proposed Advocacy Network becomes part of the next 3-year plan, NYSILC will use virtually all the money it controls to support it. Each CIL would get enough to create a half-time Systems Advocate position, and would be expected to kick in as much of its own resources as possible to bring the position up to full-time. The Advocate would work directly for the CIL, and would spend about half the time on local systems advocacy issues, but would spend the other half on statewide or national issues that are determined through the CILs' Disability Action Agenda process. These Advocates would only be permitted to do systems advocacy, not direct services, to keep them from getting bogged down and taking their eyes off the prize. NYSILC would create a full-time position to coordinate the Network, increasing its ability to keep people informed and on-track about emerging issues and to assemble and work with coalitions of disability advocates. NYSILC would also provide training for Advocates and volunteers, conduct statewide public relations campaigns on selected issues, and maintain a website that will offer both information and news to the general public and private communication networking for CILs. The two CIL trade organizations, the Association of Independent Living Centers in NY (AILCNY, to which STIC belongs) and COIL (Coalition on Independent Living), would still conduct their annual joint Disability Action Agenda and legislative awareness activities, including maintaining a paid lobbyist. Finally, the possibility of spinning off an Independent Living Political Action Committee (PAC) would be explored, to put disability rights activists on a level playing field with the nursing home and sheltered workshop lobbyists, and public employee unions, that control most disability policy in NY today.

This plan is only a proposal right now; NYSILC needs to approve it, and persuade its co-equals in VESID and CBVH to support it, before it can become reality. That process will take place over the next several months. If it is successful, New Yorkers with disabilities can look forward to more influence and power over disability policy and law in this state than ever before. Perhaps they can even look forward to--freedom.

by Linda Greeno

I hope many of you would welcome open captioning. Remember many elderly people such as your parents and grandparents often develop some hearing loss as they age. And I hate to be the bearer of bad news, but someday you will be the senior citizens of our community. Wouldn't you like to continue to go to the movies and have them accessible to you? It is also important for you to keep in mind that some of you may have children of your own who have a hearing loss or your children's friends may have a hearing loss. Deaf teenagers want to be able to attend the movies with their hearing friends. Wouldn't it be nice if your Deaf or hard-of-hearing children or your children's friends could join in family entertainment as equal members?

Deaf and hard-of-hearing prefer open-captioned films!

However, there is another option. It is called Rear Window Captioning (RWC). The way it works is that a theater would provide a special pair of glasses, or an acrylic panel that attaches to the seat cup-holders, for Deaf or hard-of-hearing persons to use, which reflects hidden captions projected from a light-emitting diode (LED) text display installed in the back of the theater. The idea behind this is that those people who are able to hear the dialogue would not feel they are being distracted by open captioning displayed on the screen. It would be a great idea if it worked well, but it doesn't.

Here's the problem: First, the print on the glasses or acrylic panel is very small and hard to read. Second, the person wearing the special glasses or using the acrylic panel has to shift their eyes down to read the captions and look up to see the action on the screen. Needless to say this means the viewer sees the action out of sync with the dialogue, making RWC awkward to use. Another problem is for those people who already wear corrective lenses. Can you imagine having to put on a second pair of glasses at the same time? Uncomfortable! Also, think about it: would you want to wear glasses some other stranger has been wearing before you? I wouldn't, yuck!

But, in my opinion, the good news is that RWC glasses are very expensive and fragile and a theater would need to have a large number of them available. Rear window systems are also costly to caption, about $11,000 per film. The reason for this is because the captions have to be programmed onto a floppy disk or CD and synchronized with the film. Open captions are burnt into the original print by a laser. This needs to be done only once at the time the film is produced, making open captioning less expensive to each theater than RWC. Another point to keep in mind is that the cost of open captioning would fall on the studios and production companies, who seem to be much wealthier than the theaters, whereas the cost of RWC glasses would fall on each individual theater.

There is good and bad news with my experience with our local theaters. I will start with bad news. A year ago in June, Loewes in the Town Square Mall showed four open-captioned movies. I'll bet none of you knew that? Of course you didn't! That is because Loewes Town Square didn't do any advertising of the open-captioned films. Those of us who knew of the opportunity got information through the internet. We had very short notice, less than a few days. Even once we got the dates we didn't have the show times. We had a very hard time getting an answer to "What times will the open-captioned film show?" Loewes did not put any information about the open-captioned films on their prerecorded telephone information line. We tried asking the theater employees and most of them had no idea what we were talking about. Finally a friend of mine was persistent and got the answer. We tried our best to spread the news as quickly as possible. But without advertising to refer to it was not easy to provide accurate details to a large number of people. Unfortunately Loewes did not have a very good turnout for the open-captioned films. The largest crowd at one time was about 20. Another problem was that the movies Loewes showed were not first-run movies. Several were already out on video and the others were being shown at the $1.50 theater (albeit without captions). But, some of us went anyway and paid more than $7.00 a ticket just because it was so very exciting to see a movie on the big screen! It was great! Many more of the Deaf and hard-of-hearing community would have come to the showings except that Loewes chose to run the open-captioned films at very inconvenient times. They ran midweek in the early afternoon when many of us were at work. The awkward timing of the showings combined with the lack of advertising and short notice made it harder for any of us to request time off from work to be able to attend the movie.

Now the good news! Hoyts Theater on Front St. in Binghamton showed five open-captioned films in August and September! They were not quite first-run movies, but at least they were not yet on video. The movies were "Big Momma's House", "Rocky and Bullwinkle", "Me, Myself and Irene", "Nutty Professor" and "Titan AE".

For future show times of open-captioned movies you will have to call Hoyts Theater the week they are scheduled to show. They said they will list the show times of the open-captioned films on their prerecorded message. Hoyts' prerecorded information number for hearing people is 724-1230. Deafies must call through Relay 711 and then 607-724-1230. Also keep an eye out for advertisements of the open-captioned films in the movie section of the newspaper!

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