AccessAbility

by Maria Dibble

As I stood before a rally crowd of advocates and people with disabilities at the NYS Most Integrated Setting Coordinating Council (MISCC)'s Syracuse public forum and led chants of "What do we want?!" "Freedom!" "When do we want it?!" "Now!", I was struck by the power and meaning of that one word: "freedom".

America's history is filled with examples of wars fought to defend or preserve our freedom as well as to champion the freedom of people all over the world. Yet we seem unable to muster the same energy or commitment to demand freedom for our own citizens, who are chained by institutionally-biased laws and regulations to segregated settings all over this great land.

The Supreme Court issued the Olmstead decision five years ago, stating that people with disabilities had the right to receive services in the most integrated setting possible, yet it took three more years for New York State to pass a law requiring a comprehensive plan to achieve this. The law, passed in 2002, created the MISCC and specified several tasks for it to carry out, culminating in a plan to ensure compliance with the principles of Olmstead by all state agencies that serve people with disabilities. That plan was to have been in place by December of 2003, but the Council had barely held its first meeting by that time, and no one but advocates and people with disabilities seemed to care. Apparently, when laws apply to people with disabilities, we can just ignore them; apparently the concept of "freedom" is less urgent when applied to us.

The current, and so far, only, chairperson of the MISCC is OMRDD Commissioner Tom Maul. One of the provisions of the MISCC law is that the chairpersonship of the Council must rotate every three months among the various Commissioners of state agencies that provide disability-related services. In violation of the law, Maul has presided over the MISCC for over a year.

When asked at the rally by a reporter from the Syracuse Post-Standard about the plan deadline, the Commissioner said, "As far as the actual law itself, I won't stand here and pretend I know it."

Am I alone in my consternation at this? I'm familiar with the law and I'm not even on the MISCC. The law contains less than 3 pages of plain language. It is easy to read and understand, and I would expect every MISCC member to have done so long ago--wouldn't you?

But this quote is from the same person who, at the last MISCC meeting, after a presentation about the efforts of Centers for Independent Living to divert and transition people from institutional placement, said that the work could probably be done by trained volunteers. When asked why the OMRDD Waiver didn't use volunteers in its similar efforts to divert or transition people with developmental disabilities, he had no answer.

The MISCC memo announcing the public forums asked people to speak on four themes: "Best Practices", "Building Community", "Improving Quality" and "Looking to the Future". While there is nothing wrong with these themes in and of themselves, there are some glaring omissions.

It is clear that the MISCC is more interested in gathering input on what is working than it is in trying to find out what isn't. None of the four themes for the forum asked about gaps in services or impediments to moving people from institutional to community settings. None of the themes focused on the crucially important concept of reversing the institutional bias in all of our long-term care services. And not once was one of the most serious barriers to community integration mentioned in the forum invitation: the lack of affordable accessible housing across the state.

The Governor has an interagency task force to study housing issues. This task force has no consumers or advocates on it, so it is unlikely to be exposed to the real issues faced by people with disabilities. Nor has any information about the task force's activities been provided to the Council. Commissioner Maul has refused to create a Housing Committee on the MISCC, which does have consumer representation.

The MISCC law requires the Council to come up with a unified assessment process for people with all disabilities of all ages to be carried out by a single point of entry in each county. As far as I've been able to determine, the MISCC has done little meaningful work on this, but the NYS Department of Health and Office for Aging are working very hard on a similar concept that seems to be related to the Governor's troubling Medicaid "Mega Waiver" proposal.

By seeking input on only half of the pie, the resulting plan is sure to be only half-baked. The word "comprehensive" comes right before "statewide plan" in the part of the law that describes what the MISCC is supposed to produce. "Comprehensive" means complete, global, thorough, all-encompassing, inclusive--taking both the bad and the good into consideration in order to develop a centralized, unified approach to this very pressing issue. Without data on service gaps and deficiencies to show where the "best practices" need to be applied, we can never hope to achieve a successful plan. It'll just be business as usual, a fragmented, disorganized approach to disability services with a not-so-hidden agenda to preserve the status quo.

Let's cut to the heart of the matter. Tom Maul is part of the problem with the MISCC, but he's not the whole ball of wax. He was appointed to do what the Governor wants because he agrees with the Governor; he has publicly opposed full integration for people with all disabilities and the very idea of a state Olmstead plan. He has been seen at Council meetings arguing with, overruling, or ignoring the members who are trying hardest to carry out the Council's legally mandated tasks. But if he were gone, the Governor would look for other ways to control the MISCC, and probably find them.

The Assembly passed a MISCC bill several years in a row and worked with advocates on bill language. While some Senators were very supportive, the Senate Majority Leader was not enthused about this law and Governor Pataki absolutely did not want it. The Senate was forced to pass it by protesters who brought to light the strength of public opinion in favor of integration for people with disabilities. The Governor then tried to add "technical" amendments to remove the requirements that the chairperson be rotated, that concrete data be collected on service gaps, and that all state agencies be bound to implement the plan once it is completed. More protests got Pataki to drop these amendments and sign the law, but he didn't give up. The next year he tried to sneak them back in with his budget proposal but was stopped by the Legislature. So, having failed to weaken the law by legal means, our Governor resorted to subterfuge: He appointed as Chair the person most likely to obstruct the MISCC's progress, and looked the other way as the chairpersonship failed to rotate. Meanwhile, the leaders of both houses delayed appointments of Council members for months, preventing the Council from conducting business.

The MISCC is an open book that by law must involve members of the disability community in achieving specific and wide-reaching reforms in disability policies and services with the goal of maximizing community integration. It should have center stage in any changes to Medicaid-funded long-term care in our state. Call me cynical, but it looks to me like most of the parties involved would much rather continue their own back-room efforts to cut Medicaid spending on services that improve the lives of people with disabilities while keeping the institutional bias in our system strong and healthy. I don't think these people ever intended for the MISCC to accomplish anything. I think they just wanted to get the public and the media off their backs.

If that's what they wanted, they made a mistake. They enacted a law that has specific provisions. It can be enforced through legal action. The only answer to Olmstead compliance, as well as to rising long-term care costs, is to consolidate disability services into a single system that maximizes low-cost community-based supports and gradually reduces use of expensive segregated services over time. We need leadership from the top down to make this happen. We need commitment from the top down to ensure success, we need courage from the top down to challenge prejudice, misplaced beliefs and an antiquated system to do what is right, to promote freedom for all New Yorkers. And, I guess, we need to either firmly grip the necks of the top leaders and force them to abide by court orders telling them to do these things, or we need new leaders.

So once again, in the words of ADAPT, we demand of the MISCC, of our state and of our nation: "Free our brothers!" "Free our sisters!" "Free our people now!"

According to detailed notes provided by ADAPT observers at the Council's July 12, 2004 meeting, the Data Committee is working on gathering the information the law requires. Yet, despite the law's many specific requirements to collect data to be used to develop and monitor implementation of the plan, OMRDD Commissioner Tom Maul, now in his illegal 13th. straight month as Chairperson, responded to the Committee report by repeating in several ways that he was less concerned with numerical data than with "customer satisfaction".

"Customer" and "satisfaction" have different meanings for different people. OMRDD officially considers family members, not people with developmental disabilities, to be its primary "customers". OMRDD's "customer satisfaction" assessment system does not track how many residential supports recipients are in the most integrated setting possible. Instead, it simply defines any group home as "community-based", and records anyone who gets any type of residential service, no matter how segregated, as having their needs met. If someone requests a more integrated option, it may or may not be recorded in their "chart", but such requests are not routinely forwarded up the chain of command, nor is any waiting list of such requests created. OMRDD does not effectively ensure that residential service providers don't coerce or intimidate people under their control into saying they are "satisfied", and it doesn't effectively ensure that residential service providers make substantive changes to their programs when customers are not satisfied. OMRDD's approach to assessing and responding to levels of "customer satisfaction" with residential supports is not an acceptable model for the state.

In any case, the Olmstead decision made it clear that keeping people with disabilities more segregated than they need to be is unlawful. The fact that some people with disabilities (or much more likely, family members) may be "satisfied" with segregated settings is no more significant than the fact that some black students or their parents were "satisfied" with segregated schools when Brown v Board of Education was issued. Segregation is harmful, illegal, and must end.

The MISCC Assessment Committee does not seem to understand its obligations under the law. There has been much discussion of "best practices" and ways to disseminate them at MISCC meetings, but no clear evidence of efforts to create a uniform system. During the July discussion of assessments, Maul put his finger on the biggest problem the state faces in reforming services; the belief that providers must be allowed to drive the system. He made remarks to the effect that we can't create change unless we create incentives for providers to change.

STIC believes that we can create change by making new rules and only giving money to providers who follow them. Systemic change will never occur if providers of segregated services, or their lobbyists, are allowed to decide what services will be available. While the MISCC law limits the plan to what can be done within "all otherwise applicable law", some of the applicable law lets states legislate program changes, and the requirement to analyze how existing funding streams can be consolidated and redirected to support integrated services provides plenty of authority to recommend new legislation to remove obstacles to change.

The Transportation Committee also seems focused on best practices and "motivating the provider".

There are laws mandating access for people with disabilities to existing public transportation systems, and STIC believes that enforcing them would help motivate providers. But public transportation can't be provided efficiently in rural areas, and it's unrealistic for rural people with disabilities to expect that to change. Rural public transit systems will never reliably get people to and from work every day, and rural communities will never provide a full array of nearby public services, accommodations, or jobs. We see only two realistic options here: people who need frequent transportation assistance can be assisted to move to cities or suburbs with better mass transit, or they can be given vouchers to buy accessible vehicles and/or hire drivers.

The Quality Assurance and Community Services committees also reported, but we don't have enough information to assess their progress. Commissioner Maul made an important point--that any Quality Assurance guidelines must be simple to understand and available to the public. The Community Services Committee has a draft section of a plan but its contents weren't available.

The Council viewed a presentation on nursing home transition programs being carried out by Centers for Independent Living working with the NYS Office for Aging, Department of Health, Developmental Disabilities Planning Council and the State Education Department. As a result of this project 66 people have left nursing homes and 73 were kept from entering them. 166 more were identified and assessed for transition, and 720 people have been trained. Chairperson Maul suggested that such transitions are best supported by people who have a personal relationship with the person with a disability, and that volunteers would be more effective than paid staff.

In fact, this work requires thorough knowledge of service systems and funding sources, creativity in connecting people with supports, and the ability to advise the person making the transition. It is very much like Service Coordination, a job for which OMRDD pays well. Maul's remarks were perceived as insulting by Independent Living representatives, and Bruce Darling, Executive Director of a Rochester CIL, asked Maul if he was willing to let volunteers do Service Coordination. Maul apparently didn't respond.

The now-completed public forums were discussed in July. Maul opposed having a stenographer present to document testimony, claiming it might "intimidate" people. Other members of the Council insisted that a stenographer must be there to ensure a permanent record of what was said and to indicate that the Council will actually take public testimony seriously.

The housing issue was also raised. The Governor created a housing "workgroup" whose activities are not open for public examination. Maul said he'd try to find out what they are doing. Council members have asked Maul more than once to create a Most Integrated Setting Coordinating Council Housing committee to address this important issue, with no result. This is highly disturbing for the following reasons: OMRDD has a long history of promoting group homes over integrated generic housing; Pataki's Medicaid "reform" task force has suggested "downsizing" nursing homes by moving their inmates into group homes; and the DOH has supported a demonstration to do so in New York City.

by Amber George

(Editor's note: Over 100 people turned out for the MISCC's August 10 public forum in Syracuse. People with disabilities from across central New York not only presented testimony, they staged a colorful rally to express their outrage that the Council's work has been delayed for over a year and that the Council does not seem to take seriously most of the legal mandates it is required to fulfill. Asked about the delays, Chairperson Maul told a Syracuse Post-Standard reporter that he didn't know what was in the MISCC law.)

Sixteen STICsters were present to rally outside the hearing building and listen to the testimony inside. STIC provided an accessible bus which made participation possible for many people who would otherwise not have been able to attend.

The day before the hearing we organized a get-together at STIC to make the props for the rally. The theme was "Unlocking the Chains for Independence". Consumers and staff participated in making paper chains, cutting out keys for independence with phrases such as "Freedom" and "Independence" outlined in black on them, and constructing a large padlock which signified unlocking the institutional bias that many people with disabilities confront. We spent two hours working together on this project. Many of the folks who helped were unable to attend the rally but felt very strongly about the issue and wanted to help in any way that they could.

The hearing united advocates from Watertown, Syracuse, Rochester, Utica and Binghamton. Together we comprised a powerful body of advocates able to support each other as we gave our testimony. Our crowd was large and spilled into the hallway, causing the officials to decide at the last minute to bring themselves out to us! We assembled in the hallway, which was very hot and crowded but we didn't care because we were already heated up!

The crew from STIC thought this hearing was energizing and they all enjoyed the opportunity to meet with other advocates from across New York State. At times some of the advocates for independent living were hard to hear, but we all knew the message they brought. They want to live in the community and receive their services in the most integrated setting.

by Darlene Dickenson

The following is a re-creation of the testimony I gave before the MISCC in Syracuse. I had no idea what I was going to say, but after straining my ears to hear each speaker for more than an hour, I stepped up to the microphone and began my presentation by asking in a somewhat loud...okay, VERY LOUD voice, "Can everybody hear me?" In an instant the hall was quiet. The continuous murmur of voices evaporated. It was as if every person in the crowded hallway had simultaneously taken a breath. I was holding mine, waiting for some sign that the audience was paying attention. Finally, there was a chorus of "yeah"s and I started breathing again. I opened my mouth and words started coming out almost without thought.

I am one of two Community Integration Advocates at the Southern Tier Independence Center in Binghamton. My job is to assist people of all ages with disabilities who want to leave institutions with planning and putting the services in place that they will need to live in their own homes. I've heard through the grapevine that a certain member of the MISCC has suggested that the kind of work that my co-worker, Amber George, and I do could be done by volunteers. [I laughed.] Well, I don't know about that. I work 35 hours a week and Amber works 40. In the last 18 months, we've gotten two people out of long-term care skilled nursing facilities, one individual out of a psychiatric center and assisted several people who were at high risk of being placed in institutions to remain in the community. I don't believe that the MISCC members have any real idea how long, hard and intensively we work with every person we get out.

People who have been institutionalized for several years have lost even the most basic belongings; furniture, dishes, household items; even personal mementos that define who they are have been stripped away. These personal items get lost, divided up among family members, put into storage and are often forgotten. Thus, many people that Amber and I work with must rebuild their lives and furnish their homes from the ground up. If you remember your first apartment you know how expensive buying all of the supplies to outfit a home can be. Most people with disabilities living in institutional settings get very little of their benefits checks, so they have virtually no money to purchase basic items for cooking and cleaning, much less furnishing their homes.

I'm not here today to scold this Council or to chastise anyone. You've heard recommendations from several advocates on what needs to be done to make it possible for people with disabilities to live in the most integrated setting. I'm going to share with you a couple of stories from people who have gotten out and are living in the community. I'll start with an elderly gentleman and his wife. In his day, this man was a very prominent and respected politician. He was the mayor of a local municipality. He and his wife did a lot of very good things for the community. They also had 12 children. Unfortunately, when this couple needed the help of their community, the community failed them! They both ended up in the county nursing home. What's more, husband and wife were housed in separate rooms on separate floors! The nursing home was unwilling to move other residents to allow the couple to stay together.

THAT IS NOT RIGHT!

Two years ago, a prominent state Senator looked me in the eye and said, "The only people still living in nursing homes are frail elderly and terminally ill." I don't know what nursing homes the Senator had been in, but he hadn't been walking the same halls that I have.

Another person we've helped back into the community is a 29-year-old woman with severe MS. I want everyone here who is over the hill, which includes myself, to think back to when you were 29. You were probably busy building your career, getting married, raising a family and/or socializing with your friends. This young woman was stuck in a bed wearing diapers in a nursing home that is known for poor quality of care. In spite of multiple disabilities, she was determined to go back to the community. She took charge of setting up her utilities, signing her lease and setting up her new apartment. She learned how to hire and manage personal care aides. She has truly blossomed in the community.

Unfortunately, she had to take an apartment without a roll-in shower because of the shortage of fully accessible housing in our area.

[At this point, the moderator stepped forward, touched my elbow, and whispered, "Your time is up." I nodded to her, then turned back to the mike and continued.]

In order to get out, she made a compromise. She has been taking bed baths for four months while waiting for a shower chair that would enable her to transfer into her tub so she can shower. As a result, she continues to struggle with urinary tract infections and skin breakdown. She needs to shower to maintain her physical health. There is a piece of equipment that would allow this person to be Hoyer-lifted into a seat that locks into a system which then slides the seat across a rail and into the tub. Medicaid won't buy it! The request for this tub seat system was turned down by Medicaid because it was "too expensive"! What they did approve was an inflatable bed tub, which means the person must be lifted out of bed with a Hoyer while the tub is filled, then lowered into it where she will lie in dirty water as she is washed. When this woman's health deteriorates due to chronic infections and skin breakdown, Medicaid will pay to put her BACK INTO THE NURSING HOME, which is much more expensive, without batting an eye!

THAT IS NOT RIGHT!

When I finished, there was a startling round of applause and cheers from the audience. As I made my way back to my place at the back of the hall, several people touched my arm and told me how much they appreciated my testimony. When I rejoined my co-workers, I was told that I had spoken for ten minutes instead of the allotted five. I learned later that the appointed minions of the MISCC had been holding up signs throughout my testimony that said "ONE MINUTE", "30 SECONDS" and "TIME IS UP". I wish I could've been a fly on the wall to see that! Did these people really think that my guide dog was going to read those signs and sneeze at the one minute mark, growl when I had 30 seconds left and start barking when my time was up? Maybe they just didn't make the connection that a person using a guide dog and carrying no written material to read from would not be able to read printed signs! While I still smile whenever I think about this, I do hope that the members of the MISCC are better able to "connect the dots" between the huge number of people with disabilities who want to leave institutions to live in the community, and the gaps in existing services and supports that must be filled in order for them to do so.

by Sharon Ross

I was hit by a car at age 11 and was in the hospital close to 6 months. I went to school in regular classes until tenth grade. I never did finish school because when I was in the eleventh grade I was kicked out by the principal of BOCES. At age 21 I put myself into ARC (Association for Retarded Citizens). I had some problems there, but also had some personal successes. Like when I was 25 years old I fought with ARC to get married. I won and was able to be married. This is amazing because we were the first disabled couple in Broome County they let marry. They would not allow people who lived in the group homes to marry or even allow me to date someone.

I was fed up with the way ARC was dealing with me. I was shuffled around from group homes to apartments and back and forth. I could leave the home but I had to tell them where I was going and why and when I'd be back. I had to be home no later than 9 pm. The staff in the group homes always called my mom, about once a week, to tell her about bad things I was supposedly doing. My mom didn't ask to be called and didn't want to be called, but they did it anyway. And, the money I got from SSDI, I was not allowed to have, so I fought to get out of ARC and into getting services from STIC. I won at that too. But I had to fight for it.

When I did leave ARC, ARC said that I would not be able to pay rent, pay bills, or live independently. I proved to them that I could and I have been doing all of this for 6 years. I am happier on my own taking care of my two kitties and have no one to answer to. In ARC they wouldn't allow me to have any pets.

I was at the MISCC hearing in Syracuse and listened when two women, one from Saint Mary's and one from another organization said that they wanted to build more group homes. This made me angry because I don't agree with adding more group homes, because when you are in them you have a hard time getting out. You can't make any decisions in a group home because they are all made for you.

I also was in on getting the ADA bill passed and as long as there is something out there to fight for to help myself and others be independent I will be there to contribute and put my two cents in.

I live independently and I think others should have the freedom and same rights as I do.

Following a public spat between members of its joint conference committee on election reform, the state Legislature passed a bill that leaves out most of the issues that the federal Help America Vote Act (HAVA) requires states to resolve. It therefore looks like the state won't get $230 million in federal election reform funds--at least, not this year. v The most important election issue to the disability community (besides who wins, of course), is physical access to the voting process, including polling places and voting machines. Different experts have provided differing descriptions of the status of New York's compliance with HAVA access requirements, and it's hard to know what full compliance really means.

New York State is not now in compliance with federal, or even its own, standards for access to polling places or voting machines, and it is clearly impossible for the state to be compliant by November because at present no fully accessible voting machine exists that works with the state's full-face ballot.

Nevertheless, the State Board of Elections produced a HAVA implementation plan that claims the state will provide fully or partially accessible voting machines in time for the November elections--but it assigns actual responsibility for doing it to the counties. Some members of the official NYS HAVA Implementation Task Force contend that the Deputy Director of the State Board of Elections, Peter Kosinksi, illegally submitted this plan to the federal government as the state's official HAVA plan without approval by the Board. It is not clear whether the Legislature approved this plan as part of the bill passed this summer, or needed to.

The plan may meet minimum federal standards for a HAVA plan, but in August it was not known if the feds would accept it. One requirement mandates that the state "certify" that it complies with federal polling place access laws. However, the state doesn't seem to be required to actually prove that it is complying, and it is not clear that the feds will ever conduct an inspection to check on the state's claims. The State Board of Elections has made false claims about polling place accessibility with impunity more than once over the past two decades.

The Legislature's bill also resolved at least some differences on voter identification, though we don't know what those are.

The Democratic-controlled State Assembly's HAVA bill would have created an advisory panel to establish uniform voting machine access specifications and required the Board of Elections to get bids on them and award a single contract for machines to be used across the state. It is not clear why the Republicans who control the State Senate were so strongly opposed to this concept, but they were, and these provisions did not pass. During the contentious public debate observers noted that the Republican Governor was being mighty quiet but that Pataki was the real pachyderm in the parlor that nobody wanted to talk about.

HAVA offers grant funds to states for various election reform activities. The NYS Office of Advocate for People with Disabilities, under the auspices of the state Board of Elections, applied for a grant and requested funds for Centers for Independent Living (CILs) to conduct access surveys of all of the state's polling places. Then two CILs filed a federal lawsuit against Pataki's home Westchester County for failure to make polling places accessible (see below), a suit that also named the state as a defendant. As the HAVA grant start date drew near, advocates contacted the Governor's Office to discuss the details. They were brushed off, in apparent direct retaliation for the lawsuit. A Freedom of Information Act request was filed in August to find out the exact terms of the grant proposal, in order to determine what further steps may be taken.

It's certain that we won't have many accessible polling places, or any fully accessible voting machines, in New York State this year (though, thanks to a lot of work done by STIC and conscientious County officials long ago, we believe that virtually all polling places in Broome County and many in Tioga County will be physically accessible). What is less certain is whether our state will even have accessible voting by HAVA's final deadline of November 2006.

New York's disability community is up in arms about this. The sit-in at the Legislature's May conference committee meeting and the Westchester lawsuit were only the beginning. There will be a major effort this fall to encourage voters with disabilities to file legal complaints whenever they encounter an inaccessible polling place or voting machine. Some politicians apparently feel they have been unjustly embarrassed over this issue. They are, however, quite able to realize on whose feet the shoes fit. Election reform is a collaborative process and all the collaborators will be under equal and growing pressure until they do the right thing.

The two Centers for Independent Living in Westchester County, the Westchester Council of the Blind, and several individuals have brought suit in federal district court against the Westchester County Board of Elections for willful failure to make polling places in the county accessible.

Oral arguments were heard on June 14 before a crowd of supporters. Disability advocates have repeatedly surveyed polling places in the county over a period of four years, noted widespread inaccessibility in all surveys, and reported the results to the County Board of Elections, but the Board has done virtually nothing about it. In some cases, the County issued waivers exempting polling places from access requirements. However, waivers may only be issued for good reason and must be renewed each year. The plaintiffs argued that the Board of Elections has improperly granted waivers without adequate reason and has failed to revisit the waivers on an annual basis.

Not only did the surveys find many architectural and procedural access violations, they found that the mechanical lever-type voting machines used in the County (and throughout the state) violate access rules for people with visual disabilities because they require them to read printed text. The complaint notes that the technology for creating accessible electronic voting machines has been available for many years, as have such machines. This is especially interesting because it strikes at New York State's peculiar full-face ballot requirement: while accessible voting machines do exist, none that are fully accessible work with a full-face ballot. This antique ballot design is only used outside NY by some counties in Delaware. The state's top politicians prefer it because it makes it easy for voters to vote a straight-party ticket. If this suit succeeds, it could force them to do away with it.

The plaintiffs charged that inaccessible polling places are illegal under Title II of the ADA, as well as under the New York State Human Rights and Election Laws, and under the federal Voting Accessibility for the Elderly and Handicapped Act of 1973. They asked for a jury trial and requested that the Board of Elections be ordered to make polling places accessible in time for the 2004 elections. At this point no ruling has been issued and it doesn't appear that one will come in time to affect this fall's voting, but we'll keep you posted.

by Maria Dibble

The Children's Mental Health Task Force continues to meet regularly and make excellent progress. We have recruited more parents and agency representatives and we are still looking to expand. If you are interested in joining, call Maria Dibble at 724-2111 (voice/TTY).

This summer, at the request of the Task Force, Don Pryor of the Center for Government Research submitted a very comprehensive proposal to conduct a needs assessment in Broome County. It would explore existing services and service gaps, barriers to offering services, and best practices to reach our goal of adequate mental health services for children with developmental disabilities. Considering the scope and depth of the proposal, the $35,000 fee seemed reasonable to the Task Force. Unfortunately, due to expected budget cuts, Broome County Mental Health Commissioner Art Johnson said the county could not fund our project.

So we are in the process of seeking funds from a variety of potential sources and I hope to report that the assessment is underway in the next newsletter.

The NYS Education Department (SED) held public forums on special education issues across the state in May. STIC staff rallied over 30 parents and people with disabilities to attend the one held at Broome-Tioga BOCES on May 27--by far the largest turn-out in the state for these forums. The crowd filled two rooms, each with its own facilitator. This reporter only saw what occurred in one room but STIC staff reported similar experiences in the other room.

SED had a specific agenda for the forums and it didn't involve letting parents and students speak freely about their needs and experiences. Instead, the forum's facilitator focused mostly on incremental "reform" topics, some of which were only relevant to proposed--but far-from-certain--changes to the federal Individuals with Disabilities Education Act.

One such topic concerned ways in which BOCES could foster integration. Since BOCES districts have millions of dollars invested in segregated "bricks and mortar" facilities, they are not likely ever to strongly support full home-school integration, but some do offer services in local schools--though often in segregated classrooms. Inadequate services for children with autism are an important issue locally, and it was suggested that BOCES could provide a "swat team" to train and support teachers in local schools who have children with autism in their classes, as a way to keep them integrated. The facilitator enthusiastically agreed, pointing out this has been successfully done elsewhere with children with brain injuries.

As we have reported, most school districts in our region engage in ongoing willful noncompliance with special education regulations, including deliberate efforts to mislead and intimidate parents of students with disabilities, because they know that SED will not punish them for it. The topic of enforcement was on the agenda, but the facilitator directed the discussion toward positive incentives for compliance that are unlikely to put a dent in the problem, which is largely an attitude issue, not one of scarcity of resources.

The facilitator, who works in SED's program research office, far removed from real schools and students, appeared to be genuinely unaware of the extent of noncompliance, but also, at least at first, appeared not to fully believe what parents told her. Toward the end, she warmed up a bit and seemed impressed by the size of the turnout and the earnestness of those who spoke.

Not long before the forum was held, State Education Commissioner Richard Mills told the media that he understood that New York's special education system was failing but that he favored a "supportive" approach to correcting it. The forum provided further evidence that the state is not serious about enforcing special education rules. STIC Executive Director Maria Dibble asked the facilitator if she or someone else could return and hold a forum where parents and students could talk about the real problems. The facilitator seemed to think that was a good idea, but expressed no view on whether it would happen.

Although many parents were disappointed about not being able to make SED fully aware of real and serious problems with special education compliance in our region, their effort to attend and speak out was an important step toward effective systems advocacy in the education arena.

New Yorkers with disabilities won an important victory this summer when the Legislature passed a bill to create a new Medicaid Home & Community-Based Services waiver for people with physical and cognitive disabilities who are not eligible for other such waivers.

The new waiver is intended to enable "nursing facility transition and diversion". It could allow the following services: service coordination, personal assistance, independent living skills training, environmental modifications, community transition services, assistive technology, adult day health, staff for safety assurance, non-medical support services to maintain independence, and respite services. The community transition and non-medical support services, and the staff for safety assurance option, are especially welcome. The first two might be used for subsidies or stipends to enable people coming out of nursing homes to set up households. "Safety assurance" means monitoring and supervision for people with cognitive disabilities such as Alzheimer's disease. And the bill requires the NYS Department of Health (DOH) to consult with Centers for Independent Living when preparing the waiver application for the federal government.

The bill envisions a system like that used for the state's highly successful Traumatic Brain Injury (TBI) waiver, which exclusively supports integrated community-based services and saves NY between $10,000 and $30,000 in annual Medicaid costs per person. As with the TBI waiver, regional centers would do outreach, assess eligibility, and approve service plans, for waiver participants. Also like the TBI waiver, cost savings would be determined in the aggregate--that is, services for some individuals may cost more in the community than in a nursing facility as long as the total cost for everyone served on the waiver remains lower than it would have been in nursing facilities. The bill does lack an important feature that STIC has called for--an option for waiver participants to stop service coordination after they fully transition to the community. This feature would minimize interference in the lives of people who basically just need ongoing attendant services and accessible housing, as well as reduce overall costs.

This bill is not out of the woods yet. While some observers expected the Governor to sign it, reliable sources report that Pataki is very angry with the disability community's growing advocacy efforts. The bill only directs DOH to apply to the feds for a waiver, and it does not require any of the listed services actually to be offered. Insiders say that DOH officials, who are working on plans for Pataki's proposed Medicaid "mega-waiver" without legislative approval, strongly opposed this bill. So Pataki may not sign it, or he may "encourage" DOH to delay the application and/or not include important services.

In our last issue we reported that the Northeast Center for Special Care (NCSC), a for-profit nursing home in the Hudson Valley region operated by a Pataki political crony, had its Medicare funding cut off by the federal Centers for Medicare and Medicaid Services (CMS) due to ongoing major deficiencies, but that Medicaid funding for the facility was continuing due to intervention by Pataki Administration officials.

This summer we learned more details about this troubling arrangement. It turns out that, at least through July 30, 2004, CMS had cut off both Medicare and Medicaid funding to the facility. It appeared that local and New York State taxpayers may have temporarily financed 100% of Medicaid payments to the NCSC, instead of the usual 50% share, for several months.

In other words, despite the fact that the conservative, pro-business Bush Administration had found that the NCSC, due to its ongoing pattern of defrauding, neglecting, and abusing its inmates, could not be trusted with any federal funds, the Pataki Administration remained determined to keep this dangerously incompetent institution open, using your money. Meanwhile overwhelming evidence continued to show that everybody in the place could be more humanely and effectively served in their own homes for about 1/5 the cost, on average.

Just before we went to press we learned that the NCSC had once again passed inspection and gotten some level of federal funding approval restored. Details were not immediately available.

Both houses of the state Legislature reached agreement on a 2004-05 budget in August, and shortly thereafter Governor Pataki vetoed parts of it. The Assembly Speaker had previously said that his house would override all vetoes. At press time the Senate was not planning to return until sometime in the fall and appeared unlikely to override any of them.

Some important cuts in Medicaid services for people with disabilities were approved by the Legislature. Children in families with incomes between 100% and 133% of the federal poverty level will be removed from the Medicaid program and covered under Child Health Plus, which does not provide important ongoing services, such as personal care, to children with disabilities. Co-pays were increased for non-generic prescription drugs.

The Legislature did reject several of Pataki's proposed cuts to Medicaid-funded disability supports and services. These included the proposal to end State Medicaid Plan coverage for podiatry, dentistry, nursing, and other services; the limited "preferred drug" list (though it appears that we have the pharmaceutical industry lobby, rather than any great concern for people with disabilities, to thank for the latter); and the plan to eliminate the "spousal refusal" option for people seeking Medicaid homecare services. As best we could tell in August, the vetoes did not reinstate these cuts.

All parties, including the Governor, had said they agreed on the "education parts" of the budget. However, the Governor vetoed several "Aid to Education" items, including legislative restorations to VESID-funded programs, such as Centers for Independent Living like STIC, case services, and supported employment, that the Governor customarily tries to cut each January.

Also vetoed were a $4.5 million restoration to community mental health programs and a $3 million increase in SSI payments, as well as smaller but still much-needed programs such as respite services for families of people with disabilities and in-home services for elderly people.

Pataki's plan to take money for basic necessities away from the poorest families of children with disabilities, by reducing TANF (welfare) payments by nearly the full amount of SSI payments their kids get to cover additional medical and support costs, was carried out by Executive Order without legislative approval. Advocates were considering a lawsuit over this issue.

. . . but if we don't, you'll have to park at Boscov's, walk three blocks, and wait ten minutes for the elevator.

That's about the size of it. We have a new, much larger, much flatter building, with lots of parking, over on the East Side. But we need your help to renovate it and make it useable.

This spring we sent out letters asking for your support for our building campaign, and we've set a goal of $6,000. Many of you have responded, many more have not. Please remember that your gift will be partially matched by the Decker Foundation, increasing the power of your donation. If you give where you work (as long as it's not the federal government), you can make STIC your "donor choice" so that your gift comes directly to us. This is usually pretty easy, but if you work for IBM you may need to get your supervisor to help you. If you work for the Postal Service or some other federal agency, you can't designate STIC to receive your donation, so please consider sending a contribution to us.

If you've still got 'em, please use the form and return envelope we sent you; it makes tracking progress toward our goal easier. If you don't, not to worry; please just put "annual campaign" on your check.

If you give us permission, we'll print your name right here along with these other good folks.

THANK YOU!

Kavasseri & Lolita Agneshwar

Blanding Electric, Inc.

Jeanne D. Cordick
(in memory of Richard Cordick)

William & Rebecca Dupree

Richard Farruggio

Patricia Grays

Nellie Holmes
(in memory of Susan)

Carol Kashmer

Phyllis B. Koepke

Sam Liberto, Jr.
(in memory of Saverio Liberto)

James A. Matteo
(in memory of Amelia Matteo)

Sara Murray

Marjorie R. Norcross

Robin S. Oggins

Janet Ottman

Dan Phillips Family

Carol Pothier

John W. Sharpless

Sue Shimalla

Vail-Ballou Press, Inc.

Pamela & James Vincens

Leon, Gloria & Chris Witteman

STIC welcomes two new Service Coordinators to our growing family. They kindly agreed to furnish the following bios with very little arm-twisting and almost no whining. They also alleged that their colleague, Crista Zirgulis, has never had to do this. So in lieu of a bio from Crista, we're providing a picture of her instead.

Kami Thurston

I have an Associate's degree in early childhood education and a Bachelor's degree in human development. I'm thrilled to join the ranks of Medicaid Service Coordination after spending 2 1/2 years managing/coordinating an adult residential program for another agency. Coming from that background, I am excited to work on this end to prevent individuals from entering the residential/institutional system. I have also been given the opportunity here at STIC to work with kids, and I am really enjoying the change. On a personal note, I am engaged to be married, and am spending any spare time I have wedding planning!

Marci Germond

I am extremely proud to be joining such a well-respected and ever-growing organization. I come to STIC with approximately four years of experience in human services. I obtained my Bachelor's degree in speech communications and have worked as a direct care and a special education aide, as well as being a service coordinator for the last two years. My husband and I enjoy the company of our two small children, ages three and six months. Together we enjoy going for walks and experiencing the peacefulness of our backwoods country home! I look forward to the many experiences that lie ahead with STIC and I am grateful for the opportunity.

by Linda Greeno

As you all know, I'm leaving STIC. I am happy and excited to be on my way and chasing my dreams. Gallaudet University is the center of the Deaf World and I am looking forward to it. Standing on the edge of a new horizon is exciting, but it is also a bit scary. Leaving what we know for something we don't is always a little scary, but I am excited and looking forward to new experiences and challenges. I have loved working at STIC. It has been a very challenging job and I will miss it very much. I will always be around the Triple Cities; it has been my home and all my family and friends are still here. I have enjoyed working with everyone on the team at STIC and I hope we all learned a lot together.

Please do not hesitate to ask any questions to whoever replaces me just as you did with me. Keep me always in your hearts as I will you. The Triple Cities is the place that I grew up and it is a place that in many ways has made me who I am. So I may be leaving but I will be bringing a piece of the Triple Cities, and all the people I know and love with me.

Southern Tier Independence Center is pleased to announce that Stacey Wintersteen has joined the ranks as the new provider of Deaf Services.

Stacey bundles a wealth of local experience and education to assist people with their Deaf Services needs here at STIC. She acquired her high school Regents diploma at Union Endicott and furthered her education at Broome Community College, majoring in Human Services. Stacey is a familiar face here at STIC as she completed an internship with the Deaf Services department in 2003.

Prior to her employment at STIC, she served as a teacher's aide at the Broome/Tioga BOCES Summer Program assisting the teacher with deaf students by utilizing her American Sign Language (ASL) skills, and she worked at CVS in Endicott. Stacey is also a member of the Deacons, First Presbyterian Church in Endicott where she holds a Communications position. There she helps provide outreach and support for church members and their families.

Stacey looks forward to parlaying her education and real-life experience to assist people with communications needs, advocacy and counseling.

Welcome aboard Stacey!