25 Years Remembered

by Maria Dibble

As I contemplate the passage of the last 25 years, there are some things that I remember as clearly as if they happened yesterday, while others have quietly faded into the background noise of time.

I began work on June 27, 1983, an inexperienced administrator with strong principles, high ideals and a vision of what could be.

At that time, we had a promise of a contract, with no money, no credit history, no bank and no ability to pay bills let alone my salary. After a couple of months, we managed to secure a line of credit of $10,000 to cover our most dire expenses.

Meanwhile, we got a donation of four desks from G.E., and those, along with one telephone and six folding chairs (that I brought in from home) comprised our furnishings for the first five months. What we lacked in resources we more than made up for with enthusiasm and dreams.

We couldn’t actually start serving consumers because we needed to make our bathroom accessible, and that we couldn’t do until we had money. So it wasn’t until December 16, 1983 that we were able to hold our grand opening, announcing a brand new agency with a very idealistic philosophy that was unique in our community. And so STIC was born.

Of all the things that set us apart from other agencies, philosophy, peer approach, services, consumer control, etc. I think the thing that most took the community by surprise (and sometimes by storm) was our willingness to challenge the powers that be, whether that be politicians or other public officials, local and state agency bureaucrats, and the like. I’m very proud to say that we still do that, occasionally publicly, more often behind the scenes, but it remains a key component of who we are.

Many of our colleagues across the state warned us that if we challenged, defied or in any way took on the "establishment" that we would pay the price, that there would be reprisals. And, they were right. We were audited (once it was multiple times in one year by the same agency), our funding was threatened, and once one state agency even tried to dig up a bit of dirt on me. They called people around the state to find out about my “integrity and character”, and I guess were rather disappointed to discover that I was what I seemed to be, and that I was clean. How did I know all of this? Well, the people they questioned immediately called to tell me about it. To this day I don’t know why they wouldn’t have expected that to happen. When I confronted the perpetrators about it, they denied it. The whole thing still gives me a chuckle now and then.

From the beginning we were advocates and we still continue to be sought out by people with disabilities, and recognized by others, for our strong unwavering commitment to systems change (see On Being Frank).

There are so many things to remember and so much to celebrate as we reflect upon our history, far too many to list here, but below are a few highlights:

In the mid 1980s, the "Barrier Busters" (STIC staff and consumers dressed like Ghost Busters) hit the streets to bring attention to the lack of accessible curb cuts in the city. We drew the access symbol with a line through it at crossings without curb cuts in downtown Binghamton, and marched singing the Ghost Busters theme but inserting "Barrier Busters" instead. The police weren’t happy with us chalking the sidewalks but we cleaned it up afterwards. It got a great deal of media attention. It was lots of fun and very effective. Downtown is much more accessible today.

Another time, we invited various public officials to assume a disability for a day, to experience barriers faced by people with disabilities. The then Broome County Commissioner of Transportation agreed to use a wheelchair for the day and ride around for a while on the BC Lift. At that time, the lifts broke down on a regular basis, and there were no other transportation options for people with disabilities. This was long before the ADA and accessible public transit buses. Well folks, we could not have planned what happened that day if we tried, but it was truly awesome. As the Commissioner was attempting to disembark from the bus, the lift broke with its platform halfway down, with lots of media there to film the event. I swear, we didn’t sabotage it. It broke, like it did many times for riders, and the Commissioner got to experience the frustration firsthand of waiting for help to repair it. While he could have just stood up and exited on his own, he didn’t. He waited the whole situation out like any rider with a disability would have to, and he subsequently became even more sympathetic to our issues than before.

In 1991, STIC entered a "Search for Excellence in Independent Living" contest conducted by the J.M. Foundation. We were one of three projects in the country recognized with an award, and it was truly a great honor. The recognition was given for our innovative approach to bringing traumatic brain injury services to our community, establishing a diverse task force of consumers and providers to identify needs and develop ways to meet them. This resulted in UHS beginning to provide outpatient TBI rehabilitation services. Our success then catapulted us into an aggressive statewide advocacy campaign to address the needs of people with TBI, which later culminated in legislation to establish the now flourishing TBI Medicaid waiver program.

We began with 1,000 square feet of space on Clinton St. in 1983 and by 1987, despite remodeling a few times, we’d outgrown the space. We then found 4,500 sq. ft. next door to (actually attached to) the Little Venice restaurant on Chenango St., and we took on the daunting task of doing all of the renovations ourselves. We have a charming picture of me holding a toilet brush as I cleaned the place in preparation for moving. I also accepted the task of hanging insulation, not knowing that I would itch from the stuff for days. We rented trucks and moved most of our equipment, supplies, etc. ourselves. The lesson we learned from that experience? Never again—at least to the do-it-ourselves approach.

In 1996 we were doing it again! 24 Prospect Avenue was renovated by those more skilled at the work, and we packed everything up in about a week. We hired movers and they achieved the task in one 14 hour day. When we moved into the 32,000 sq. ft. five-story building and were all settled I remember saying, "This space should last us for a very long time."

Wrong again! Here we are, 12 years later, preparing for yet another move. Packing will take much longer and the movers say they need five or six days to finish. The new space is 62,000 sq. ft. and will be much nicer. All staff will be on one floor and there is room to grow. There will even be a "green space" with potted plants and trees. Good thing I like change!

June 2008


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News and Analysis

State Budget Update: Picking up the Pieces

In the wake of Governor Spitzer’s abrupt departure, confusion reigned in Albany concerning the disability community’s budget priorities. Perhaps understandably due to the emergency nature of the situation, incoming Governor David Paterson did not spell out any sweeping policy initiatives like those of Spitzer that had given disability advocates such high hopes. Instead, as the stock market tanked, oil prices rose, and predictions of recession multiplied, the focus quickly moved to cutting back on spending.

At this time we are not sure that we have all the details on the 2008-09 budget, which is now in effect. The open budget process that had been fostered under Spitzer evaporated; all budget negotiations were moved behind closed doors. It was reported that the legislature rejected $500 million out of $800 million in additional cuts that Paterson proposed the day after he took office. Soon afterward, though, a 2% across-the-board cut on non-Medicaid spending was agreed to by all parties. Here is what we do know:

Spitzer’s $400 million proposal to beef up affordable housing, including accessible housing for people with disabilities, was dropped. About $6.5 million worth of residential support programs for people served by OMH were cut as a result of the 2% reduction mentioned above, and that 2% cut was also applied to the funds available for housing subsidies for participants in the state’s TBI and Nursing Home Transition and Diversion Medicaid waiver programs.

Spitzer’s proposal to use 100% state funds to enable Child Health Plus to serve children with family incomes up to 400% of the poverty level was adopted. Healthy New York, a bare-bones public insurance program that excludes people with pre-existing conditions, also got a funding increase.

Under major pressure from hospital and healthcare provider lobbyists, both houses of the legislature had balked at some of Spitzer’s true Medicaid reform proposals to shift funding away from institutionalized settings toward community-based services. Paterson does not appear to have fought hard to defend them—possibly one reason why Senate Majority Leader Bruno feels he can “get along” a lot better with Paterson than he did with Spitzer. Some relatively small changes in this area were approved to take place over the next year. Some Medicaid advocates were claiming victory on this front but, as far as we can tell, there is little to celebrate.

An EPIC prescription drug discount card for low-income New Yorkers was created. The card is available to people with disabilities (though we don’t know what definition of “disability” is being used) and to nondisabled people between the ages of 55 and 64, who meet EPIC income guidelines. For individuals, that’s annual income under $35,000; for married couples, it’s under $50,000. The card provides a discount of 30% on brand-name drugs and 50% on generic drugs.

Anti-depressants that were slated for restriction for Medicaid beneficiaries will continue to be exempt from the preferred drug list.

The prescription drug “carve-out” for Family Health Plus was approved and is expected to take effect in October. This is a cost-savings measure that will let people in Family Health Plus get drugs paid for by the Medicaid State Plan at a lower cost; it won’t affect medication availability.

The proposed statewide enrollment portal for public health programs was approved and got some startup funds.

The OMRDD Care at Home waiver, which assists children with significant medical issues living at home, has eliminated the requirement that one must be institutionalized more than 30 days, eliminated the cap on the number of children who can be served, added hospice and palliative care, and extended its enhanced nursing rate and expanded case management. (In May, Governor Paterson proposed new legislation that would change cost-eligibility determination for Care at Home from individual to aggregate, in line with the state’s other Medicaid waivers; that is, a child would not be denied service because his/her individual costs for home-based services would be higher than those in an institution, because overall, the total cost of providing waiver services to all recipients is always lower than that for institutional services. Also included in his May proposals were measures to expand availability of long-term care insurance, and unspecified “modernizations” to the Long Term Home Health Care Program (LTHHCP, or “Lombardi”) Medicaid waiver.)

The alleged Personal Care services “data-collection” project in New York City that would have saved the state money, presumably by cutting services, was not approved. In fact, $8 million in new funding for rural homecare was added.

Some Medicaid enrollment requirements were eased, though not all of those originally proposed. Most significant, limits on personal assets for some categories of Medicaid recipients were tripled. The Assembly didn’t want to let DOH access people’s state income tax returns to check income eligibility, and proposals to eliminate the assets test and fingerprint imaging were dropped. We would expect that the elimination of the reapplication requirement when Medicaid recipients move from one county to another, already mandated by a court decision, would have been enshrined in law.

Organizations that help people enroll in public insurance programs (facilitated enrollers) got more money.

Three “new” Centers for Independent Living (CILs) (the satellite offices operated by existing CILs that we reported on last summer) were established in Putnam, Sullivan, and Herkimer Counties. The $1.5 million that Spitzer had proposed to cut from CILs was restored, but CIL funding then received the same 2% cut that other state programs did.

In April some lawmakers predicted the budget wouldn’t hold due to the worsening economic situation, and a budget deficit of up to $5 billion was projected for 2009-10. Paterson ordered all state agencies to come up with a plan to cut spending by 3.35 percent by May 16. He said this cut was part of “the enacted budget” and would save $800 million. Without dictating details, he urged agency heads to review hiring practices especially. He said that if agencies didn’t meet the targets, he was prepared to withhold already-budgeted funds or implement a “hard hiring freeze”. He also asked the state court system, the Comptroller’s Office, and the Attorney General’s office to make cuts of 3.35 percent. He also said agencies should immediately begin looking at cuts for the 2009-10 budget, predicting that the economic situation would be even worse in that fiscal year.

If we get additional details over the summer, we’ll let you know.

CMS Faces the Music

In March, a bill was introduced in the US House of Representatives to delay several ugly regulatory changes that the Bush Administration’s Centers for Medicare and Medicaid Services (CMS) has tried to impose on Medicaid programs, until the new federal administration comes in next year. The Senate followed suit with a similar "CMS moratorium" bill in April. AccessAbility has reported on two of the worst changes previously.

One would tighten restrictions on the State Children’s Health Insurance Program (SCHIP, which in New York is called Child Health Plus) so much that states could not expand its availability. As we reported, states are not to be allowed to enroll children with incomes above 250% of poverty until they have enrolled 95% of children in the state who are eligible at the 200% level, and only children who have gone without insurance coverage for at least a year will be allowed to enroll. A family’s premium/co-pay costs for SCHIP are calculated at a percentage of the family’s income. Under the new rules, for families above 250% of poverty, that percentage can be no more than 1% lower than what they would pay for comparable private insurance. The 95% requirement is unrealistic; no state can meet it. The other changes would make the program not worth offering for higher income levels.

Another change would severely limit the availability of case management services for people transitioning from nursing facilities to the community under federal "Money Follows the Person" grants. CMS would reduce the amount of case management service this program would pay for from 180 days to only 60 days if the person was institutionalized for six months or more, and 14 days for people institutionalized for less than six months. Assisting people to return to the community from institutions is labor intensive, especially to locate and prepare accessible housing, and to provide skills training/retraining to enable the person to live on their own. This change would threaten the success of the pilot programs being set up by states using these grants. We understand that other limitations on case management services were also enacted by CMS but we don’t know what they are.

Other CMS actions that would be put off by one or both of the bills include reducing Medicaid coverage for some rehabilitation programs for children, and disallowing use of Medicaid funds by states to provide medical education. The Senate bill also included $12 billion in new funds for states, both for Medicaid and general revenue-sharing purposes, to help address fiscal shortfalls caused by the faltering economy.

One important piece missing from both bills was a reversal of CMS’s sudden change to spousal impoverishment rules that created a financial incentive for families to place spouses with disabilities in institutional settings instead of in community-based Medicaid waiver programs.

The changes to SCHIP, spousal impoverishment, and case management services were all enacted unilaterally by CMS without following legal requirements to obtain public comment first. Lawsuits have been filed by states and private individuals against CMS to block the changes to SCHIP and case management. In April Governor Paterson announced that New York would join the state lawsuit concerning case management changes.

Also in April, the non-partisan Government Accounting Office (GAO) issued a report stating that CMS’s SCHIP changes exceeded CMS’s authority for independent action, and that the changes must be submitted to Congress for approval. However, a CMS spokesperson initially stated that MS would ignore the report.

Then, on April 28, 500 ADAPT disability activists surrounded the federal Department of Health and Human Services (HHS) headquarters in Washington, DC, and 75 people went inside and staged a sit-in in HHS Secretary Michael Leavitt’s office. Among other things, they demanded that HHS immediately eliminate rules that cause undue burdens regarding case management, eliminate any regulations and interpretations of spousal impoverishment and risk that promote institutionalization of persons with disabilities, and meet with leaders of ADAPT within thirty days to follow up. Leavitt agreed to a meeting, and, according to an ADAPT press release, his spokesperson, Philo Hall, "admitted that Department of Health and Human Services has fallen behind in its former regular communication with ADAPT, and acknowledged that the lack of communication has contributed to HHS making some not-well thought-out decisions that have hurt the disability community." Another meeting with HHS was scheduled for April 30.

On May 7, CMS issued a letter to states “clarifying” its earlier letter regarding SCHIP. CMS claims that it is easing requirements on what states have to do to meet the 95% enrollment requirement before they can expand the program to higher income levels, and also claims that its original letter was only “guidance” that would be implemented on a state-by-state basis, not a rules change. This appears to be an effort to counter the legal claims made by the GAO and the states that CMS’s action was an illegal rules change that requires both public comment and Congressional approval.

Toward the end of May, both houses of Congress attached their CMS moratorium bill provisions as amendments to an Iraq War funding bill which they then passed. All sources agreed that the Senate version (which includes other domestic spending increases but does not appear to contain the additional Medicaid money for states that was in their original bill) passed by a veto-proof 75-22 majority. Advocates claimed that the House’s version also passed with a veto-proof majority but at least one national news outlet reported that it did not. The bills are different and will have to be reconciled before being sent to the President.

We have heard no results from the lawsuits concerning SCHIP, but it seems likely that the GAO finding would increase the chances that an injunction against those changes will be issued.

We will continue to follow this issue.

Election Perfection Moves in New Direction

Over the last few years we’ve covered New York State’s painful meanderings along the road to full compliance with the federal Help America Vote Act (HAVA). As it stands now, the state Board of Elections, under a threat of jail time from a federal judge, and facing more or less credible threats from voting machine vendors, has “certified” for use a handful of different voting machines, none of which is fully accessible to people with disabilities (though some are much better than others), by county Boards of Election. However, only one of these machines, and not a good one, had been certified at the time when most counties, facing a deadline, acted to order machines. This is likely to mean a new spate of lawsuits when those counties roll out inaccessible machines. Though this is not the counties’ fault, because the state Board should have authorized only the one best machine, they are likely to be caught in the crossfire.

But that’s not the only local issue here. The physical accessibility of polling places varies across the state. A few counties have 100% of their polling places accessible. Many counties are working in good faith to achieve 100% access. Some counties, however, take advantage of a loophole in existing New York State election law to grant waivers to some inaccessible polling places. Why this happens also varies. Sometimes there’s a cozy relationship between the owner of an inaccessible polling place and somebody in the county’s election administration. Sometimes the responsible county officials are lazy or incompetent. Sometimes those officials just don’t know how to resolve the problem and need technical support.

To address these issues, disability advocates have worked with the state legislature to craft a new law. Their bill (S.6311/A.244) greatly simplifies polling place access requirements by replacing several paragraphs of specific language with the statement that all polling places must comply with the published federal Americans with Disabilities Act Accessibility Guidelines (ADAAG) and the state’s Uniform Fire Prevention and Building Code (which complements ADAAG). The state Board of Elections would have to prepare a guidebook with specific instructions for how polling places must meet this requirement. All polling places would have to complete a standard accessibility survey once every three years, and file it with the state Board of Elections. Qualified disability organizations, such as Centers for Independent Living like STIC, would have to be involved in the preparation of the survey instrument and guidebook. The bill also says that any polling place that doesn’t meet these requirements must either be modified to meet them, or moved to an accessible site, within 6 months. In other words, no more waivers will be granted, and those in effect will be canceled.

As we went to press the Assembly had passed this bill. In the Senate the bill had been approved by the Elections Committee and advocates were urging Senate Majority Leader Joe Bruno to schedule a floor vote. We’ll let you know what happens.

Home Schoolers Learn Advocacy Lessons

As we reported last time, parents of children with disabilities in New York who home-school those children were shocked to learn in January that school districts had been ordered by the State Education Department (SED) to stop providing special education support services, such as speech therapy, to those children. The latest version of the Individuals with Disabilities Education Act (IDEA) had been changed to require that such services can only be provided if the state education law “recognizes” home school situations as “private schools”.

In the wake of SED’s directive, home-schooling families scrambled to try to get their children into school programs and advocates took up the issue with the state.

Up to now at least, progress with the state has been exceptionally rapid. Advocates organized concerned parents to attend a meeting of the State Board of Regents, the body that governs SED, where the issue was to be discussed, in March. The Albany Law School’s Civil Rights and Disabilities Clinic, an organization called the Home School Legal Defense Association, and other groups teamed up to work on a legislative proposal. After some discussion advocates decided to propose that only home-schooled children with disabilities who need and want special services should be deemed “non-public school students”. This language, known as “Proposal 2”, would ensure that families that want no involvement with public school special education services would have their wishes respected. There followed some negotiations with VESID on bill language. At issue was whether children would have to go to a district facility to receive services, and whether the district administrators or the Committee on Special Education (CSE), which includes the parent, would have decision-making authority.

In early April, Republican State Senator George Winner introduced a bill in the Senate, S.7490. This bill does not seem to go as far as Proposal 2 in limiting applicability only to children with disabilities who need and want special education services. It is specifically limited to children with disabilities, however. The bill says that home-schooled children are “not entitled” to receive special ed. services in the home, but that districts may, at their discretion, provide them there. If the child must go to a district facility to receive the services, the district must provide transportation. As with any home-schooled student in New York State, the family must have an approved education plan for the child.

As of this writing, the Senate Education Committee had approved the bill and it had gone to the Senate Finance Committee. There was no companion bill in the State Assembly, but advocates believed this would happen shortly.

Guerillas in the MISCC

New York State’s Most Integrated Setting Coordinating Council (MISCC) was established to carry out an exhaustive review of the state’s policies and programs for people with disabilities, and develop a plan to ensure that all people with disabilities who need support services from the state can receive them in the most integrated settings possible. The MISCC meets quarterly, and its meetings have been webcast live since the new Governor took office. AccessAbility has been following the MISCC’s progress since it was created all the way back in 2002.

As we went to press, we couldn’t get access to the April 9 MISCC webcast or any information on the Inter Office Coordinating Council (IOCC) meeting that should have taken place around the same date. What we have are several PowerPoint presentations from the MISCC meeting. Most of these documents, though rather dry, nevertheless manage to show that some important truths are being spoken to the state’s most powerful policy makers, by some of New York’s most dedicated and effective disability rights activists. We’ve summarized them below:
VESID presented on its stakeholder committee and its efforts to collaborate with other agencies and the community. “Stakeholder” committees are supposed to be advisory committees of people to whom the mission of a particular state agency is important; the committees are supposed to oversee and provide input on each agency’s activities related to the MISCC. As we had suspected, the VESID Stakeholder Committee mostly consists of members of its pre-existing advisory groups. The group appears to include individual parent representatives, as well as members of VESID’s State Rehabilitation Council, and the State Independent Living Council, which is a not-for-profit corporation jointly controlled by VESID and Centers for Independent Living like STIC. “Stakeholders” from those groups may or may not be people with disabilities.

The focus of the presentation was on identifying some service gaps and addressing them via “community collaboration”. The most notable point made in the slides was, “Service systems need to be fully available throughout the school experience, particularly as students with disabilities transition from school to adult life.” Unfortunately, the slides don’t indicate any awareness of the most important reasons why those systems aren’t available now: School districts do not carry out their legal responsibilities under the federal Individuals with Disabilities Education Act (IDEA), or New York State Education Law, to provide meaningful and effective transition services, and VESID does not carry out its legal responsibility to provide meaningful enforcement of those laws. In particular, opportunities for kids with disabilities to gain work experience through part-time jobs the way nondisabled kids do are lacking because neither the schools nor VESID offer much in that area. Instead, VESID seems to be focusing on providing tuition assistance to college-bound students with disabilities who don’t need a lot of help, and on beefing up referral mechanisms to OMRDD for the rest of the kids. Depending on what part of the state you’re in, a referral to OMRDD for residential and other supports may or may not land you in a group home and a segregated day program. Based only on the slides, of course, this plan lacks vision, at the very least. One bright point is that school districts seem to be doing a better job of keeping kids with disabilities within their own boundaries. In 2004-05 1,275 kids were placed out of their districts or even out of the state for education. In 2007-08 that number had dropped to 690.
There were two transportation-related presentations. The MISCC Transportation Workgroup has good representation from advocates, including the NYS Association of Psychiatric Rehabilitation Services’ Harvey Rosenthal, Cliff Perez from the CIL in Troy, and staff from the New York Association on Independent Living (NYAIL, of which STIC Executive Director Maria Dibble has just been elected Chairperson). The workgroup’s slides noted that the state’s policies and practices with regard to supporting and regulating transportation need to be more flexible, and that this is likely to require legislation. The workgroup seems to be focusing on collecting best-practice information to disseminate to local communities on how to coordinate various accessible transportation options for maximum impact. One example was highlighted with its own presentation: the Center for Transportation Excellence in Erie County (Buffalo). This is a not-for-profit corporation that has been given real authority by Erie County and DOH to coordinate all “medical” transportation in the area, including public transit, paratransit, and taxis. The have a centralized dispatching and billing system that uses software to make the best use of all available vehicles operated by 18 different organizations. They provide a 24-hour vehicle maintenance facility for all vehicles to keep them on the road, including those operated by small not-for-profits. We don’t have any independent information on how well this is actually working, but it looks like a great idea.
The Employment Work Group also reported. This group has good representation by committed disability advocates, including Harvey Rosenthal, the Association of Persons in Supported Employment (APSE), and STIC’s own award-winning advocate, Frank Pennisi (see On Being Frank). The group is just getting started though; the slides indicate they’ve identified objectives and issues to address, but haven’t done much with them.

Notable among the objectives is a commitment to include legislative proposals. Among the issues identified is the one we hear the most-lack of collaboration among state agencies. That’s an understatement; most of the state agencies that work with people with disabilities have their own employment-related services, usually limited to people with certain diagnoses, and having different, and sometimes conflicting, eligibility requirements, regulations, and procedures, as well as multiple redundant administrations. Also noted was the slowness of the vocational rehabilitation process, an overemphasis on segregated employment programs like sheltered workshops, and the lack of information on work incentive programs to help people with disabilities transition from public benefits to self-support. Not evident from the slides was awareness that an economic recession in already-declining upstate New York makes it difficult for anyone to get a job. Also not mentioned is the fact that changing hiring practices, increasingly involving online applications, testing, and screening, make it harder for people with the most significant disabilities to get a foot in the door.
TBI Waiver
Dr. Tim Feeney, Director of the NYS TBI Neurobehavioral Project, made a very interesting presentation on the effectiveness of the state’s TBI Medicaid Home and Community-Based Services waiver program on assisting people with multiple disabilities to live in the most integrated settings. This program provides a broad range of support services, including service coordination; independent living skills training; home modifications; assistive technology; and attendants who assist with daily activities, including work and play, and/or provide supervision and guidance to people who have memory or motivation issues. The TBI Neurobehavioral Project operates statewide and is administered by STIC. The project staff provide individual consultations on behavioral issues for people with brain injuries, as well as training and technical assistance to the service providers that work with them. Feeney is an internationally renowned expert on traumatic brain injury.

As in other cases where people’s diagnoses cross state agency lines in New York, before creation of the TBI waiver program, when people with brain injuries also had substance abuse or psychiatric disabilities, they often could not get the full array of supports they needed.

The good news is that the TBI waiver program has had great success in bringing together resources to focus on this group of people. Not only do they live happily and productively in their own homes in the community, but the program clearly and substantially cuts state Medicaid spending over time. Good statistical data was provided: For a group of 22 people with co-occurring disabilities, the aggregate cost of services decreased by 65% between 1996 and 2005. During this period there were two years in which costs increased (though only over the previous year, never reaching the original pre-waiver cost) despite the departure of two people from the program because they died or moved out of state, indicating the importance of taking a multi-year view. 82% of participants were in true community-based residential situations (alone or with one roommate in their own homes or apartments with varying levels of ongoing support and/or supervision) as of 2005 (9% stopped participating). A second group of 29 people followed between 1997 and 2005 had a total decrease in costs of 74%, with decreases each year (3 participants were lost in the same year). 90% were living in community-based situations in 2005 (5% stopped participating). The federal Centers for Medicare and Medicaid Services (CMS) issued a report that “documents savings of $28 million for the most recent reporting period, 4/1/05 – 3/31/06. The average nursing home cost for patients with TBI was $195 per day. The aggregate average waiver participant daily cost was $154.”

Feeney’s slides provide a good description of what has been learned from the TBI waiver:

"The person is the core of all intervention and support efforts. Interventions and supports that are organized around personally meaningful activities increase the likelihood of long-term success. Contextual and collaborative supports are necessary over the long and short term. Planning for the reduction of supports is done from the beginning of any intervention. Feedback is context-sensitive and meaningful. Positive everyday routines are the context for pursuit of meaningful goals. Components of life must be integrated; meaning that services must be integrated. Assessment is ongoing and context-sensitive. Behavioral concerns are addressed via positive behavior supports."

The slides also summarize what the MISCC needs to do to ensure that the best practices and good results that the TBI waiver program achieves will continue, and can be spread to other disability service support programs. Most importantly, there needs to be top-down administrative support from all of the state agencies to make these best practices the standard across the state. Research shows that “bottom-up program development is necessary but not sufficient to create sustainable changes.” To make this happen, the MISCC needs to ensure that all of the state agency decision makers that are its members make real use of what has been learned from this major success story to “develop a comprehensive and integrated approach to supporting this complicated population.” This approach should produce a new “system of support that includes the input of clinical staff across service systems and cross training initiatives, and is not dependent upon ‘primary diagnosis’, rather, on the needs of the individuals.”
Openness Faltering?
Once again, all we have from the April MISCC meeting is PowerPoint slides. We would have liked to provide a detailed description and analysis of the actual meeting, but were unable to do so because of OMRDD’s policy of only archiving webcasts of these meetings for 30 days. The meetings last about 21/2 hours, and it takes most of a day to watch and analyze them, including stopping and starting, backing up and fast forwarding, and taking notes. We don’t have time to do that within 30 days of the meeting, and we’re sure many others don’t also. Each of the many New York State agencies produces dozens of webcasts of various public meetings every month. Most of these are archived for much longer than 30 days. OMRDD should stop limiting availability of these webcasts to 30 days. We are pleased to note that meeting minutes have finally begun appearing on the MISCC website. However, as of late May, minutes for the April meeting were not yet available more than a month later. OMRDD should be able to get those minutes up much faster than that.

We are also wondering what happened to the quarterly meeting of the state’s Inter Office Coordinating Council (IOCC) which should have also taken place in April. These meetings—where the real nitty gritty of the most important issues facing the MISCC, those surrounding the need to bring the state’s fragmented, redundant, and conflicting separate disability programs into a single unified seamless system, are addressed—were also promised to be public. There is no evidence that an IOCC meeting even took place, let alone that it was webcast. The next IOCC meeting is scheduled for September.

Courts Watch

EEOC v Fedex
Ronald Lockhart, a deaf man working for Fedex as a package handler at Baltimore-Washington International Airport, was repeatedly denied a sign language interpreter so he could understand what was going on at required meetings and trainings, for nearly three years. As part of his training, Lockhart, whose English skills were poor, was required to pass written tests; because he had not understood the training and did not have an interpreter to translate the tests, other Fedex employees took the tests for him so he would pass. After about a year and a half of this, the events of 9/11 made it necessary for Lockhart to receive training on important security issues such as anthrax exposure and suspicious packages, and to obtain a security clearance. Lockhart did not get the training and he became quite frightened. He then filed a complaint with the federal Equal Employment Opportunity Commission (EEOC) alleging ADA violations. He was later fired due to “poor attendance”.

Fedex had had a written ADA compliance policy and grievance procedure in its personnel manual since 1991. During his employment, Lockhart had two supervisors, Ronald Thompson and Victor Cofield. Both of these men reported to a local Senior Operations Manager named Pat Hanratty, who was the top Fedex personnel officer at the airport. When Thompson told Hanratty that he had hired a deaf worker, Hanratty asked him why he had done so. No effort was made by Thompson to accommodate Lockhart despite repeated requests for interpreters, written meeting notes, and closed-captioned training videos. Cofield, who replaced Thompson, tried to find out what he should do to comply with the ADA, but Hanratty refused to provide help or training to him. Cofield had to go over Hanratty’s head to senior Fedex officials at corporate headquarters to find out what he should be doing, and eventually learned from Lockhart, the deaf employee, that Fedex was providing an interpreter to a deaf worker in Ohio. Cofield then arranged for that interpreter to come to some, but not all, required meetings and trainings, and also provided notes for some, but not all, meetings.

The EEOC took Fedex to federal district court, charging Fedex with “malice and reckless indifference” in violating Lockhart’s rights, failure to act in good faith, and wrongfully firing him in retaliation for filing a complaint. The jury did not find that Lockhart had been improperly fired, but did find Fedex guilty of bad faith and recklessness in violating the ADA’s Title I requirement to provide reasonable accommodations to employees with disabilities, and awarded compensatory damages of $8,000 and punitive damages of $100,000. Under the law, it is the findings of recklessness and bad faith that justify the punitive damages award.

Although Fedex did not dispute the finding of a violation, the company appealed the punitive damages award to the Fourth Circuit Court of Appeals, claiming, among other things, that its employees had not been reckless and that the company’s ADA compliance policy and grievance procedure indicated the company had made a good-faith effort to comply. The Circuit Court issued its decision this past January, denying Fedex’s appeal. The Court’s ruling made two notable points. It said that while the EEOC had not proven “malice”, the fact that Thompson, Cofield and Hanratty all understood that Lockhart needed accommodations and was probably entitled to them under the ADA, that only Cofield had tried to do anything about it and had not done so consistently, and that senior corporate officials knew there was a compliance problem in this case and had not acted to correct it, proved that Fedex management had knowingly and recklessly risked violating Lockhart’s rights. Citing numerous precedents, the Court also said that having ADA policies and procedures on paper is not enough to prove good faith; the company must also take “affirmative steps to ensure” that the policies and procedures are implemented.
American Council of the Blind v Paulson
In 2002 the American Council of the Blind (ACB) and two of its blind members sued the federal Treasury Department (Paulson is the Treasury Secretary) under Section 504 of the Rehabilitation Act for failing to make paper currency accessible to people with visual disabilities. The plaintiffs argued that not only do blind people risk being ripped off when having to depend on others to tell them what money they are handling, the inaccessibility of paper money makes it harder for them to get a variety of jobs that require money handling. They also noted that there are readily-available solutions to the problem, including varying the size, shape, and color of different denominations of bills, adding raised printing, and embedding features that would work with an inexpensive currency reading device. ACB also pointed out that several other countries are providing accessible currency to their citizens.

The federal district court agreed with ACB, so the Treasury Secretary appealed to the US Court of Appeals for the District of Columbia. The appeals court handed down its decision this May.

The Treasury Dept. had done quite a bit of research on currency access options and the Secretary argued that they would be just too expensive. He also claimed that existing “coping mechanisms” that blind people use—such as folding the corners of bills or using a commercially available currency reading machine—provide sufficient access.

The Court of Appeals didn’t buy these arguments and ruled in favor of ACB. In its ruling, the Court noted that the Treasury cost estimates included converting the one-dollar bill. ACB specifically stated that they aren’t requesting changes to that bill. If the other bills are changed, then the dollar bill will be unique in its lack of changes and easily distinguishable. Since this is the most common bill, not changing it would cut the estimated costs by about 50%. Most of the “coping mechanisms” the Secretary referred to involved getting sighted people to help. As the Court said, due to improvements both in our understanding of what constitutes basic human dignity, as well as in technology, the time has passed when relying on the kindness of others can be considered an acceptable “coping mechanism” to enable access for people with disabilities. Not to mention the fact that relying on others doesn’t solve the problem of getting robbed, or of people with visual disabilities being kept out of money-handling jobs. As for the electronic money reader, it costs almost $300 and is therefore unaffordable by large numbers of people with visual impairments, most of whom are unemployed and on fixed incomes, and it is not completely reliable in the absence of embedded features in the bills themselves.

Mandatory Managed Care Steamrollers On

from Medicaid Matters–NY (MMNY)

Mandatory enrollment of SSI and SSI-related Medicaid enrollees, including those with serious mental illness, has been implemented and is being phased in geographically throughout the State. Mandatory enrollment of SSI individuals has already begun in New York City, and in Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Nassau, Niagara, Onondaga, Orleans, Oswego, Rockland, Suffolk and Westchester Counties. Roll-out will continue to the following counties in May and June: Livingston, Monroe, Ontario, Seneca and Yates
How will SSI and SSI-Related Medicaid enrollees enroll in managed care?
SSI beneficiaries in mandatory areas must choose a plan within 90 days of receiving a mailing that includes information about the Medicaid Managed Care program. Those who do not choose a health plan within the 90 day period will automatically be assigned to a health plan.

Large numbers of people with disabilities can be exempted or excluded from mandatory Medicaid managed care. See AccessAbility issues Winter 2007-08 and Winter 2006-07 for details. To be exempted or excluded, you must apply; it won’t happen automatically. Medicaid enrollees located in New York City, Nassau, Suffolk and Westchester counties can request an exemption by calling (800) 505-5678. Enrollees in all other counties listed should call their local Department of Social Services.
How will this change the way enrollees with SSI get their Medicaid benefits?
Once enrolled in a health plan, the individual will keep his/her Medicaid benefits but will get most of his/her care from the health plan’s network of providers, hospitals, physicians, and clinics.

Enrollees with SSI will continue to receive their Medicaid pharmacy benefits and most of their behavioral health benefits (mental health and substance abuse services) from the providers they currently see on a fee-for-service basis. Plan enrollees will receive a health plan identification card but will access carved out benefits, including behavioral health services using their regular Medicaid card.
What services are included in the Managed Care benefit package for SSI and SSI-related Medicaid enrollees?
The benefit package for SSI enrollees is a “health only” package and includes:
  • All medically necessary physical health care, including primary care physician visits associated with a behavioral health diagnosis;
  • All laboratory services, emergency room visits and transportation, including those associated with behavioral health services or diagnoses;
  • Inpatient hospital admissions when the stay covers a combination of medical and behavioral health services but the DRG or rate code is not classified as behavioral health;
  • Drugs obtained and administered by a medical practitioner or facility, except for Risperdal Consta (J2794) which is reimbursed under Medicaid fee-for-service for all managed care enrollees;
  • Chemical dependence detoxification services, including medically managed detoxification and medically supervised inpatient and outpatient withdrawal.
  • All benefit package services must be provided by network providers or by referral and may require prior authorization.
The benefit package for SSI enrollees does not include the following behavioral health services, which are billable directly to Medicaid fee-for-service:
  • Mental health inpatient and outpatient services;
  • Mental health services certified by the New York State Office of Mental Health for individuals with serious mental illness;
  • Chemical dependence inpatient rehabilitation services;
  • All chemical dependence outpatient services, including methadone maintenance treatment programs.

Will Blackberries Talk?

Congress is considering a bill to update accessibility requirements for telecommunications to address the constant rapid changes in technology. Here is a summary of the bill’s features:
Title I – Communications Access
The bill defines “internet-enabled communication services” to include voice-over-IP (VoIP, sometimes called “digital telephone service”), which refers to transmission services that carry voice, text, or video conversations, interactive voice response systems, and similar services.

Current federal law requires newly manufactured or imported phones to be compatible with hearing aids. The new law would extend this requirement to comparable equipment used for internet-enabled communication services and cell phones.

The bill would clarify that telecommunication relay services, whose availability is mandated by federal law, includes services that enable people with disabilities to communicate with each other, not just with nondisabled people.

The new law would extend current law that requires telecommunications service providers to make their services and equipment accessible, to apply to internet-based communication technologies, unless there is an undue burden. If there is an undue burden, then the equipment and services must be made compatible with specialized devices and services that people with disabilities typically use to gain access, such as screen reading and enlargement software. The devices and services must also accommodate real-time text support for people who would typically use a TTY for ordinary telephone communication.

The FCC would receive new authority to make people with disabilities eligible for “universal service support”—that is, emergency telecommunications access through programs like Lifeline and Linkup. For deaf people, this would mean making such programs available through VoIP telephone services. The FCC could also make programs that provide telecommunications and internet-enabled communication services accessible to people who are deaf/blind eligible for universal service support funding.
Title II – Video Programming
The law would apply the current requirement for closed-captioning ability for TVs to any device that handles video/audio programs, including those that deliver programming over the internet. These devices would also have to be able to deliver video descriptions. It would also reinstate FCC regulations for video description that were struck down by a federal appeals court, and give the FCC authority to add new rules to enable video description over digital TV services and equipment, require non-visual access to on-screen emergency warnings, and increase the amount of video description required.

Devices that receive and display video programming, including programming over the internet, would have to have interfaces accessible to people with all disabilities. This would mean that devices operated by onscreen menus would have to have voice output, and that access to closed captioning and video description would have to be easily found via separate buttons on remote controls or top-level menu access.

Finally, cable and direct-broadcast video providers would have to make their onscreen programming guides accessible to people who can’t see the screen.

A hearing on the bill took place in the House of Representatives in May. As a press release from the American Federation of the Blind reported, “The hearing featured a wonderful exchange about the accessibility of new technologies like the BlackBerry. Sergeant Major Jesse Acosta, one of our nation’s military heroes who lost his sight during combat in Iraq, described in blunt terms his frustration with communications technologies that he cannot use. In response, a Congressman demonstrated how to use the BlackBerry’s voice call feature, but Mr. Acosta pointed out that without being able to see the screen, he couldn’t set up the feature. And, in a priceless exchange, Congressman Edward Markey, a Democrat from Massachusetts who chairs the Subcommittee, also pointed out that a blind person would need assistance from someone who could see to enter names and numbers in the contact list. Chairman Markey has been a long-time friend of the disability community, and as the force behind this new legislation, he clearly ‘gets it’.”

We don’t know what the bill’s chances are for passage or enactment.

Legislative Briefs

(taken from various alert messages)
Prenatally Diagnosed Condition Awareness Act
Rep. James Sensenbrenner (R-WI), along with Reps. McMorris-Rodgers (R-WA) and Pete Sessions (R-TX) in the House, and Sens. Kennedy and Sam Brownback, introduced the Prenatally Diagnosed Condition Awareness Act of 2007 (HR.3112/S.1810). The bill increases the amount of scientifically sound information and support services to people receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.

In addition, the bill would fund grants, contracts and cooperative agreements to collect, synthesize, and disseminate current scientific information. Further, the bill would coordinate and provide access to supportive services including:
  • Telephone hotline
  • Information clearinghouse
  • Peer support programs
  • Registries of families willing to adopt children affected by such conditions
Financial Security Accounts for Individuals with Disabilities (FSAID)
Rep. Ander Crenshaw (R-FL) introduced the Financial Security Accounts for Individuals with Disabilities Act of 2007 (HR.2370) in the House and Sens. Bob Casey (D-PA) and Orrin Hatch (R-UT) introduced the companion bill, S.2743, in the Senate. Both of these bills would establish tax-exempt financial security accounts for individuals with intellectual disabilities and not jeopardize benefits. Funds in the accounts will pay for important expenses such as:
  • Education
  • Medical care and dental care
  • Transportation
  • Moving
  • Assistive technology
  • Housing and transportation, after the age of 18
  • Employment coaching and training
The purpose of these accounts is to establish a savings instrument for individuals with disabilities and their families to provide them with the same flexibility, portability, and tax advantages that are available to all other Americans and their families. These accounts are not intended to meet the long-term support needs of individuals with intellectual disabilities. The legislation is built on the premise that persons with disabilities should be encouraged and supported in their efforts to save in order to create an independent and meaningful life just as other Americans strive to do.
IDEA Fairness Restoration Act
On November 13, 2007, Congressman Pete Sessions (R-TX) and Congressman Chris Van Hollen (D-MD) introduced the IDEA Fairness Restoration Act, which would allow prevailing (winning party) parents to recoup expert fees and related costs in due process and litigation under the Individuals with Disabilities Education Act (IDEA).

Congress intended for parents to recover their expert witness fees when they passed the Handicapped Children’s Protection Act of 1986. The statute explicitly stated that attorneys’ fees could be recovered by prevailing parents. In the conference report accompanying that bill, Congress also stated that they intended for parents to be able to recover expert fees and costs related to bringing the action.

However, in 2006 an award of expert fees and costs to parents was challenged in a case that went to the Supreme Court called Arlington Central School District v Murphy. At that time, the Supreme Court ruled that parents cannot recover expert witness fees and related costs since it was not explicitly stated in the law. As a result, parents who are prevailing parties can no longer recover their expert witness and related costs.

School districts use tax dollars to pay psychologists, therapists, and other experts. Parents have fewer resources and yet must bear a greater financial burden. Few parents can afford the thousands of dollars needed to pay for qualified medical, technical, and other expert witnesses. If due process is not affordable, the IEP process becomes much less fair and more one-sided. Most parents turn to due process and litigation only as a last resort. In 2003, the GAO reported that there were only five hearings per ten thousand special education students.

Self Help Issues & Answers

Why Should I Vote?

by Sue Ruff

And the winners are.....

Who wins in an election? One of the people running for a particular office and the people who supported him or her? Yes, but what about the rest of us? With the huge media focus this past year on the Presidential campaign and the very large numbers of people registering to vote around the country, this basic American right has suddenly taken a front row seat.

When people come to STIC for services, they fill out an intake form. It asks for name, address, phone number, disabilities, education and employment information, whether you want to receive the newsletter, and whether you want to register to vote. A lot of people say, “No thanks, I’m already registered.” A few say, “Yes,” and we send them registration materials. Some, however, state that they don’t want to vote because it wouldn’t do any good anyway. We may have heard in school that it takes all of us to make a democracy work, but some people have lost faith in participation in that democracy. The loss of jobs, price of gas, lack of affordable housing, cost of medical care, deterioration of the environment, increase in taxes, and resolution of the war in Iraq are issues that are screaming for our attention. It is hard to feel hopeful some days. But this year a lot of people have said, “Enough! At least I can vote!” First, though, you have to register.

I called the Broome County Board of Elections recently. The person who answered the phone said that registration numbers are up and people seem more excited about wanting to vote this year. Perhaps people sense that they will partake in something historic, perhaps frustration has finally become a motivator to create some action. The percentage of registered voters who cast ballots is always higher during presidential election years. Here’s a brief look back at Broome County’s voting history since the early 70s:

  • 1972 – Nixon vs. McGovern vs. Schmitz – 90.84% of local registered voters voted.
  • 1976 – Carter vs. Ford vs. McCarthy – 89.77% of local registered voters cast ballots.
  • 1980 – Reagan vs. Carter vs. Anderson – 90.84% went to the polls.
  • 1984 – Reagan vs. Mondale – 95.08% of your registered neighbors voted.
  • 1988 – Bush vs. Dukakis – 86.98% saw this as a year to vote.
  • 1992 – Clinton vs. Bush vs. Perot – 88.37% went.
  • 1996 – Clinton vs. Dole vs. Perot – 72.46% voted.
  • 2000 – Bush vs. Gore vs. Nader – 73.69%
  • 2004 – Bush vs. Kerry – 79.11%

The above information can be found at a link at the Broome County Board of Elections’ website. In the years between the above listed Presidential campaigns, local voters’ participation has ranged anywhere from 31.39% (in 2003) to 81.42% (in 1974). Sometimes local issues and local races prompt more people to come to the polls.

Nationally, popular vote determines electors, who then cast votes for final determination of who will be the next President. In 2000, Gore had about a half million more votes overall in the popular contest. But Bush had five more electoral votes than Gore. That year one elector in the District of Columbia cast a blank ballot as a protest of the lack of representation for DC in the Congress. Past problems with voting access and counts in Florida, Ohio, and other spots are another part of our history. What will future generations study about this year? What will you tell your children?

The office of President is not the only contest this year. Our members of the House of Representatives (currently Maurice Hinchey and Michael Arcuri) will be on the ballot. The people who represent us in Albany (Senator Thomas Libous and Assembly members Clifford Crouch, Gary Finch, and Donna Lupardo) will also have to face the voters if they want to keep their jobs. The Broome County Executive, all the county legislators, town supervisors, clerks, justices, council-people, highway superintendents, assessors, trustees, etc. will also have to run again. For voters, asking questions, researching positions, attending debates, and making decisions have become crucial responsibilities.

If you haven’t registered or have to re-register because you have moved since the last time you voted, you have until August 15 (if you are mailing in a registration card), if you are joining a political party, and if you want to vote in a local primary. The Board of Elections must receive all registrations by August 20. Primaries happen when more than one person in a specific party wants to run for the same office. The Broome County Primary Day is September 9. Winners of the local primaries go on to run in the general election in November.

If you don’t want to affiliate with a political party, but you want to vote in the general election that will choose a new President (and other local officials), you have until October 10 (for postmark) or October 15 for change of address or receipt of registration. That gives the Board of Elections time to enter your name onto the list of eligible voters who can vote in your locale. They send you a postcard with the site of your polling place. If you have trouble reading and processing information, you can ask for help. And you can take someone into the election booth with you when you vote, if you choose. If you want to register online, you can go to:


Some people want to use absentee ballots for a range of reasons and one can request an absentee ballot at the same site listed above or call 778-2172 for information. Many people, though, want to go to their local polling site and vote on a machine that is accessible.

Live in Tioga County? Here is the contact information for their Board of Elections:

56 Main Street
Owego, NY 13827
Toll Free: 877-882-8313
Voice: (607) 687-8261
Fax: (607) 687-6348

Chenango County your home?


Lower Level, Chenango County Office Bldg.
5 Court Street
Norwich, NY 13815
(607) 337-1760

People with disabilities have been fighting for years to make polling sites accessible and to make sure there will be accessible voting machines once people get into the polls. Being able to vote independently and privately are part of our federal or state voting rights. Last year Broome and Tioga Counties worked hard to fix access problems at a number of sites. Each site will have an accessible voting machine and hopefully, you’ll have a chance to see these machines before Election Day so you can try them out.

The history of our nation records how hard and how long African-Americans, women and poor people had to fight to earn the right to vote. My father was a veteran who spent 1940-45 in the Pacific. He didn’t trust national politicians, but he voted every year. He said it was one of the rights for which he had fought and he instructed all his children to vote. I can remember my parents discussing local elections and issues as we sat at the dinner table. We lived in a small upstate, rural town and they personally knew many people who were running for local offices. While the majority of the town’s elected officials were from one party, the Town Supervisor for a long time was from a different party. He was well liked and well respected because people felt they could call him to discuss community problems. He was a good listener, a good neighbor, and a good administrator. My parents always crossed party lines to vote for him and were proud to tell us about it. “You have to be independent,” they would say, “and consider each race and each candidate with care. If they don’t do their job, don’t vote for them next time.”

Elected officials will be making decisions about our children’s education, our jobs, our health care, our housing opportunities, our safety, our money, our roads, our Social Security, our neighborhoods, our future. If you disagree with a friend or family member politically, your vote can counter theirs. Communities with higher numbers of voters get more attention. As a voter you become part of several possible voting blocks that share your interests and concerns.

Voting is a great way to break a stereotype, meet your neighbors, and have an equal voice. Yes, there is no free food at the polls, but many sites have bake sales going on until the cookies and cakes are gone. Get involved, people!

An Equal Education for Deaf Children?

by Jonathan Dollhopf

I have been working at STIC for four months as Deaf Services Coordinator. I would like to do two things in this article. First I would like to let everyone know a little bit about me, and second talk about a subject that is very close to my heart, the education of deaf children.

I was born Deaf and I have a biological Deaf sister. We were both born in South Korea. Thank God, not in North Korea. If we were born in the North, we would have been left for dead on the side of the road. A hearing family in Michigan adopted us.

When I was very young, I was enrolled in a hearing school that had a good number of deaf students and a Total Communication policy. The first time I was exposed to sign language it was like the lights all went on, because I understood everything through sign language. Everything was going well until I was forced into speech therapy; things started going badly at that point. I missed a lot of the classes because I spent so much time in speech therapy. Naturally, I fell behind in school. By the time I reached middle school, I was two grades behind the kids my age.

I was being denied an equal education. Instead of the normal things kids learned in school I had to learn speech? I wasn’t meeting the expectations they had for me in speech and I was spending so much time in speech that I was unable to meet the academic expectations they had for me. To succeed in school, I needed to succeed in English and to succeed in English, I needed to succeed in speech. It was a catch-22 situation created by a system that had labeled me as defective. The goal was not to educate me, the goal was to make me as much like a hearing person as possible. The focus was learning speech rather than academics.

One day I was looking through my mother’s papers and found something she had written to the school, and in it one thing hit me. It reads, “My son, Jonathan is mildly retarded.” Of course I can read and understood what that meant. Those words cut me deeply and changed the way I looked at my world forever. It is a memory that has haunted me ever since and made me a very angry young man. In spite of my mother’s judgment of my intellectual ability, I was the first person in that whole family who ever graduated college; my deaf sister was the second. Retarded? I think not.

In 1828, Victor Hugo, after seeing a demonstration of students from the Institute for the Deaf in Paris, wrote, “What matters deafness of the ear when the mind can hear?” These words written so many years ago are still true today. The focus of education should be the intellectual and social development of children. Speech therapy is fine but it is not more important than the curriculum. We need to support the natural language acquisition of deaf children and that means American Sign Language (ASL). There are many people today, both deaf and hearing, who have come together in support of this goal. They have formed an organization, the DBC (Deaf Bilingual Coalition).

The DBC is a new organization and we are hoping to set up a chapter here in the Southern Tier. I will be attending the first conference in Milwaukee. When I return from the conference I will write again and share with everyone the insights I have gained.


On Being Frank

by Maria Dibble

It is with the greatest pleasure that I announce that Frank Pennisi, STIC’s Program and Services Coordinator for almost 25 years—and one of STIC’s founders—has received the New York State Assembly’s Dr. Henry Viscardi, Jr. Statewide Advocacy Award. Viscardi, who was born with a disability, was a pioneering disability activist in New York and served as an advisor to every US president from Franklin Roosevelt to Jimmy Carter. The award was presented, with many complimentary remarks, by Assemblywoman Michele Titus of Queens, who chairs the Assembly Task Force on People with Disabilities.

One of the state’s foremost experts on the Americans with Disabilities Act (ADA), Frank founded the Americans Demanding Access Committee (ADAC), a statewide coalition of advocates fighting for ADA-related issues. He continues to lead the effort to have several provisions of the ADA put into state law, with the most recent success being adoption of Title III public accommodations provisions by the NY Legislature and signed by the Governor.

A champion of disability rights, Frank is unfaltering in his willingness to challenge injustices and in his fervor to correct them.

Among his many efforts, he fought for passage of the Medicaid Buy-In, demonstrated in support of a Deaf President at Gallaudet University, pushed for adoption of the Nursing Home Transition and Diversion Waiver, advocated for the best accessibility regulations possible in the NYS building code, and is still in hot pursuit of adoption of Help America Vote Act (HAVA) and election reform legislation in NY, as well as the elimination of sheltered workshops and other segregated programs.

Being the modest individual that he is, he deliberately withheld the fact that he was receiving this award from our staff, colleagues and me, so we were not present for the event on the Assembly’s Disabilities Awareness Day.

As those of you who know him will agree, he is well-deserving of this recognition. If you wish to congratulate Frank you can call (607) 724-2111, ext. 320, or email frank@stic-cil.org, or fax (607) 772-3600. I’m sure he’d love to hear from you. As I told him, “Frank, your modesty will not go unpunished”.

Frank is an outstanding advocate and we are proud of and applaud his many achievements both publicly and behind the scenes. We’ve attended and organized many rallies together, took over a legislator’s office, negotiated with legislators on bills, written letters, made phone calls and done everything we could to push for reforms and laws that recognize the potential, respect the abilities, and allow for the total integration of people with all disabilities into all aspects of community life. Keep up the good work. I know someday we’ll achieve our dream of abolishing antiquated laws and regulations that deny people with disabilities access to and participation in a fully inclusive world. Congratulations Frank!

Shoveling It Again

by Maria Dibble

STIC is very proud to announce that we held the official groundbreaking for our new building at 135 East Frederick Street in Binghamton on May 16. Yes, renovations began in March, but we put off the event in anticipation of better weather.

Were we ever wrong! It rained and was quite chilly on the 16th., but it didn’t stop staff, well-wishers and dignitaries from joining us to celebrate the happy occasion.

With the sound of power tools, hammers and the like in the background, I opened my comments by remarking on the “liquid sunshine” that was falling from the sky, and after some soggy chuckles we proceeded.

County Executive Barbara Fiala, Binghamton Mayor Matthew Ryan, Assemblywoman Donna Lupardo and Ken Elsworth, representing our architectural and project management firm, Keystone Associates, braved the elements to congratulate us on our project and soon-to-happen move, and praised our many successes and achievements over the last 25 years.

Then, we gathered around with gold shovels in hand, to turn some dirt as a symbolic representation of the groundbreaking. All watched with bated breath to see if I would, as I did at a similar event 12 years ago, throw my shovel-full of dirt on the Mayor’s foot. Having been forewarned by my staff, they were alert to my little mishap last time, and the dirt, or should I say mud, was turned over without a hitch.

Afterward, attendees enjoyed some refreshments and toured the premises with hard hats and safety glasses in place.

We didn’t let the weather dampen our enthusiasm and enjoyment for the day that we’ve been awaiting for more than five years. My thanks to all who participated and attended, as well as to the staff who set up tables and chairs, erected canvas tents and valiantly tried to keep everything dry. Next stop: our grand opening at our new homecoming this fall. Keep watching these pages for updates.

Behavioral Consulting and Program Design Services Expand

by Rachel Schwartz

I am pleased to announce that in July 2008 the new Behavioral Consulting and Program Design services at STIC will become a full-time program! This program began part-time in January 2008, and served people with a wide range of disabilities and their families. Now, with the addition of a Family Support Services (FSS) grant from Broome Developmental Services, the local OMRDD office, the program has expanded. The FSS grant provides for 20 hours a week of service to children aged 3 to 21 with developmental disabilities, and their families. The program will continue to serve adults and children with other disabilities as well.

As a Behavior/Program Design Specialist I work closely with families to develop individualized programs that will increase independence, promote inclusion and community integration, and improve the quality of life for the individual with a disability and their family as a whole. The program may address any number of areas of a person’s life, including behavioral issues, social skills, communication skills, community integration, and independent living skills.

I created this program based on 10 years of experience working with children with autism and other developmental disabilities in a number of different roles. In that time I have learned that people with disabilities and their families are more satisfied and more successful when they have services that are individually tailored to best fit their unique needs. This program allows the person and family to determine their own area of focus—behavioral concerns may be important to some people, while developing life skills is more important to others. The program also attempts to fill gaps that sometimes occur outside of traditional learning environments. A child may receive all the support they need in school, but areas of life at home or in the community can be overwhelming for parents and family members to address. The Behavior/Program Design Specialist can coordinate across settings and people (school, home, support staff, etc.), and provide information, training, and support to everyone involved to help enrich the life of the person.

This program serves people in Broome, Tioga, and Chenango counties. Please call 724-2111(voice/TTY) for more information.

STIC’s Architectural Barriers Consultation Service

by Bob Bennett

Southern Tier Independence Center can help make your home or business accessible to anyone, regardless of disability! STIC’s Architectural Barrier Consultants can offer on-site evaluations of existing and/or planned structures, in order to assist in ensuring the project meets all Americans with Disabilities Act accessibility guidelines. STIC consultants will meet with the home/business owner, contractors, architects, codes officers, etc. to provide information and answer questions concerning accessibility. Measurements and pictures are taken to assist in determining the best way to achieve success. A written report with a drawing of the proposed project will be developed, discussing the specific accessibility issues that apply to the site. Although STIC does not finance or pay for the alterations and/or construction, a copy of the final report can be forwarded to whoever is responsible for completing the modifications. There is no fee for individual/residential consultations, but fees are required for business/not-for-profit organization consultations. STIC can offer a variety of ideas and approaches to make a living space or place of business accessible, comfortable and safe!

For further information contact:

Robert Bennett
Architectural Barriers Consultant
(607) 724-2111 (voice/TTY) ex. 352

New Faces

Daena Archer
I recently joined the staff of STIC working as Administrative Assistant for the NHTD Waiver RRDC Binghamton/Syracuse Regions. I was born and raised in Binghamton and I received my Bachelors of Political Science from Binghamton University. I look forward working with STIC and hope to add to this wonderful team.

Community Programs


The Mental Retardation & Developmental Disabilities (MRDD) Subcommittee of the Broome County Community Services Board is looking for 2 new members.

Membership includes individuals with developmental disabilities and/or their family members. Meetings are open to all interested members of the community and serve as a forum to present needs, concerns and ideas pertaining to MRDD services in the local community. The meetings are attended by advocates and representatives from local, state and not-for-profit organizations who share a common concern for the quality of MRDD services. The committee meets monthly (except during July and August) on the third floor of the Broome County Mental Health Department, One Hawley Street, Binghamton, from noon until 1:30 pm. Most of the meetings are held the first Tuesday of the month but there are a couple of exceptions.

If you are interested in being a part of this dynamic group, please contact Nicki French, Committee Chair, at 729-2592 or email afrench1@stny.rr.com.

State of New York Office of Mental Retardation and Developmental Disabilities Announces a series of Public Forums for the Five Year Comprehensive Plan: 2008 – 2012

OMRDD urges self-advocates, parents of people with developmental disabilities, other family members, non-profit providers, professionals, advocates, and other interested parties to participate. OMRDD is particularly interested in hearing about the following themes, but commentary is not limited solely to these themes.
1. OMRDD Vision Statement
“People with developmental disabilities: enjoy meaningful relationships with friends, family and others in their lives, experience personal health and growth, live in the home of their choice, and fully participate in their communities.”
  • What issues most impact on OMRDD’s ability to deliver the Vision Statement outcomes for the people we serve?
  • How can OMRDD and its partners (self-advocates, families, providers and other agencies) improve services to deliver these outcomes for the people we serve?
2. Quality of Services and Customer Satisfaction
  • How can we better involve self-advocates and families as productive partners?
  • What are the key indicators of quality for the people we serve?
  • What are the national and local best and promising practices New York State should consider implementing or replicating?
3. Building Community
  • How can we promote full community participation and contribution?
  • How can we encourage communities to become more responsive and inclusive?
4. Equity and Access to Services
  • How can OMRDD as a system better support people to truly make informed choices about their supports and services?
  • How do we ensure all individuals, including those with autism spectrum disorders, the aging, people with medical frailties, children, and others, are provided fair and equitable access to person centered services?
  • How do we better facilitate access to supports and services across service systems for people with multiple disability needs?
5. Workforce Capacity into the Future
  • How do we sustain quality and stability in both direct support and clinical workforce areas in an era of changing workforce demographics?
  • How do we develop the next generation of leaders throughout the system to meet the challenges of tomorrow?
Speakers will be asked to register in advance of the forum, limit their comments to five (5) minutes, and bring three (3) copies of the testimony. Written testimony can also be submitted to Cynthia Redshaw at OMRDD, 44 Holland Avenue, Albany, NY 12229.

For general information about the Public Forums, please contact
OMRDD’s Bureau of Planning
Phone: (518) 474-4904 Fax: (518) 473-0054
E-mail: cynthia.redshaw@omr.state.ny.us
Public Forum Schedule

To register, obtain more information or directions to the hearing location, or to arrange for a special accommodation, please call the contact person for that forum at the number listed below.

Tuesday, June 17, 2008 – 2 pm to 5 pm
Location to be Announced
Debby McElwain (716) 517-3831)
Monday, June 23, 2008 – 4 pm to 7 pm
Location to be Announced.
Joseph Mahon (607) 770-0255)
New York City:
Thursday, June 26, 2008 – 3:30 pm to 5:30 pm and 6 pm to 8:30 pm
75 Morton St., Manhattan, NY
Yvonne Anglero (212) 229-3081)


Rascal 600c scooter like new, with 2 baskets, cane holder, cup holder & other accessories plus cover. Asking $1,000. New $4,000. Doris Cross: (607)699-3649
Hydraulic sit-to-stand assist device. Good for moving from bed to toilet or chair for someone who can still bear some weight and has some arm strength. Comes with harness, battery pack and charger. Works best on hardwood or tile floors (more difficult on carpeting). Purchased new for $3,000; used only 3 1/2 months. Asking $1,500; will negotiate. Purchaser would need some means of transporting device. Linda or Diane Yonchuk: (607) 775-1061


Summer 2008
Issue No. 91