All We Derive from Being 25

by Maria Dibble

December 16, 2008 marked the 25th. anniversary of STIC’s first open house and introduction to the community. Back then we were very young. We didn’t know what to expect, we were the new kid on the block with a really different vision of how programs and services should work for people with disabilities. More importantly, we had a radical new approach that put people’s wants, desires and dreams for independence ahead of what professionals said was best for them.

We needn’t have worried. Many agencies in the community couldn’t wait to start referring all of “those people” with whom they didn’t know what to do. You know, the deaf people that don’t hear you know matter how loud you yell; the blind people that don’t understand why they should accept a slot in the “blind workshop” instead of expecting a real job in the community; those people in wheelchairs who wanted light-weight chairs so that they could push themselves rather than relying on someone else to push them around (in more ways than one); those developmentally disabled people that wanted to live on their own and just wouldn’t cooperate with the providers that had much safer alternatives for them; and so on.

Do you detect a note of sarcasm in the above examples? Well, that’s because that was the tone intended. They are indeed examples of the “difficult people” we were sent to work with. Lo and behold, we used interpreters so deaf people could understand the questions they were being asked; we helped the blind person find a job that met her dreams; we got doctors to start prescribing lightweight wheelchairs that allowed people to be more independent; we helped the person with a developmental disability move out on her own (and she is still there all these many years later). These were all people who were “uncooperative”, “unrealistic”, “wouldn’t admit their limitations” and so forth.

Slowly we started to make small inroads into the paternalistic, patronizing practices applied to people with disabilities. We got new laws passed, policies changed, regulations reformed. So some things are much better today than they were two and a half decades ago.

There are many more curb cuts. More restaurants, malls, medical facilities, and other public accommodations are accessible. More and more doctors, lawyers, agencies, etc. are using sign language interpreters. TV commercials and shows actually have actors with disabilities. The world has begun to acknowledge that physical barriers to independence are unacceptable and should be removed.

Unfortunately, they are slower to remove the attitudinal barriers and turf issues that stand in the way of true community integration. Paternalistic policies and medical-model practices still dominate services to people with disabilities. Oh, policy-makers and public officials have learned to use the right terminology, to mouth the right phrases about community-based services, and to pat themselves on the back for a job well done. Yet we still spend on average $1.2 million a year to keep one person incarcerated at a developmental center, $70,000 for a nursing home, and I don’t know how much to warehouse people in group homes and psychiatric adult homes and facilities. We spend more than five times as much to segregate a person in a sheltered workshop as to support her in an integrated competitive job in the community and yet officials tell us that “progress is being made”, “be patient; we’re developing plans”. And while they plan, people with disabilities live (if you can call it that) and die in institutions while the platitudes keep flowing.

Now comes a golden opportunity to make all of the promises of community-based services become a reality. The economy is the worst I’ve ever seen it in my lifetime and we could save many billions by shifting money from costly segregated programs to those that are consumer-controlled and integrated in the community. We need to stop planning and start doing. Public officials need to put their money where their mouths are and implement sweeping reforms that will make both the physical and philosophical shift to community services.

And guess what, there is a perfect model they can emulate. We’ve been here for 25 years, helping people leave institutions, find jobs, make lives for themselves and fulfill their dreams. And we’ve done it for a lot less money than the segregated programs. We listened to people, treated them like the human beings they are, and we’ve put dignity and respect into a service system that sadly lacked them. So if a few barely-older-than-college-graduates could start a program in 1983 and grow it into the agency we are today with only a dream and a vision to guide us, then why can’t our state and our country, with all the resources and “experts” at their disposal, figure out a way to do the same thing on a larger scale? It would solve their economic woes because Independent Living is a much less expensive model, and more importantly, it would free people to live where and how they want. I’m not so idealistic that I’m blinded to the reality that it can’t happen overnight. But if we’re doing all this “planning” anyway (See STIC’s Retort to the MISCC Report and The Children’s Hour), then why don’t we make our planning count for something?

The first few lines of our agency brochure say, “Imagine a world that is accessible to everyone, where no barriers to independence exist; where everyone is allowed to be himself or herself, free to let their disabilities be just another part of who they are. Together we can shape this world.”

So I issue this challenge from STIC to our public officials as we embark on our second 25 years: Shed your cynicism. Stay young at heart. Begin to imagine, join STIC and let’s make all of your promises and our dreams a reality. Together we can make it happen!

Hometown Holiday Light Festival

December 4 through December 31
Otsiningo Park, Binghamton
5:00 pm - 9:00 pm
Every Night (weather permitting)

Admission: $8 per car

Proceeds Benefit
Southern Tier Independence Center

For Information Call
(607) 724-2111 (voice/TTY)

We will have all of the old favorite displays, plus a variety of new ones (which we will keep as a surprise). Please join us for this great Holiday event.

Bad Weather?
If the weather is bad, call 724-2111 (voice/TTY) to make sure we’re open. The answering machine will explain why we’re closed. Listen to the entire message since we sometimes ask you to call back to check later in the day. If we’re going to be closed, the message will say so by 7:30 am. For Deaf consumers, there will be a generic TTY message saying we’re closed. This message is always the same no matter why we’re closed.
December 2008


AccessAbility is published seasonally (Spring, Summer, Fall, Winter) by Southern Tier Independence Center. Letters, information, descriptions of disability experiences and ads are always welcome. Deadlines are February 15, May 15, August 15 and November 15.
Our address is:
Southern Tier Independence Center
135 East Frederick St.
Binghamton, NY 13904

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All articles appearing in this newsletter are written by Ken Dibble except as noted.

News and Analysis

Bloodsuckers or Blood Brothers?
Interlude with the Paterson

Many disability activists in New York State viewed the ascension of Governor Paterson, who is legally blind, with great expectations. It was hoped that out of his shared experience with them would come understanding and support for their issues.

It was with this in mind that the New York Association on Independent Living (NYAIL) invited him to give the keynote address at its bi-annual conference in September. Hopes ran higher when he accepted the invitation last summer.

These hopes grew even stronger later in the summer when, during a sit-in outside his offices to protest his proposed cuts to Independent Living and attendant services, he met with STIC Executive Director and NYAIL Chairperson Maria Dibble, Center for Disability Rights Executive Director and ADAPT chapter leader Bruce Darling, and others, for nearly an hour of frank and open discussion of the issues. Following that meeting, whether due to it or to opposition from the state legislature, attendant services cuts were not adopted—and further cuts to Centers for Independent Living were not included in his aborted November proposals.

At the NYAIL conference, spirits were lifted by Paterson’s speech. He had just returned from the Democratic National Convention, where he had spoken on behalf of integration and self determination for people with disabilities. He said he had done so as a direct result of the sit-in and his meeting with disability leaders. He said he was taking to heart their warning that cutting integrated community-based services would end up costing the state more money when the people affected were forced into more expensive institutional settings as a result.

Then he put his foot in it. He said the protest had made him realize that somebody had to stand up for those who have no money to buy massive advertising campaigns to oppose cuts, as the state’s health care unions did, and who cannot pay expensive lobbyists to fight for them, as the hospitals and nursing homes do. He said that he needed to remember what people with disabilities did and said on that day, and not be like many state legislators, who smile and listen when groups like them come to Albany, but after they’re gone go back to taking their orders from paid lobbyists and being “bloodsuckers”.

That word got NYAIL much more press coverage than it expected for its conference. And though the coverage focused on how angry Paterson’s remark had made legislators, it did get across the point that people with disabilities had come together in Albany and adopted Paterson as one of their own.

Some people at the conference—who had not been part of the protest or the subsequent meeting—pooh-poohed all the hoopla. They said Paterson was just another politician and that they’d heard him tell several other groups that they personally had inspired him to do this or that—though they didn’t cite examples.

Then came November, and Paterson once again proposed to cut attendant services and other things that affect people with disabilities. Of course, cuts like these are inevitable in the current fiscal climate. But then, he vetoed the individual integrated settings bill, citing costs that probably can’t be documented (see Paterson Vetoes Integration). Meanwhile, the state’s Most Integrated Setting Coordinating Council is bogged down in trivia (see STIC’s Retort to the MISCC Report) and the Department of Health is failing to deliver on promises made to disability advocates almost two years ago under Paterson’s running mate, Eliot Spitzer.

So disability activists are confused. They are accustomed to standing up for themselves, of course, and are quite capable of doing so successfully. But they are wondering who Paterson will be standing up for now.

Budget on the Brink

As the world economy tumbled into recession this fall, New York State government, which is doubly sensitive to economic trends because of its dependence on income from the New York Stock Exchange, saw projected budget deficits for the current fiscal year and future years balloon rapidly. This will have inevitable serious effects on the state’s ability to provide services.

There is room to argue over what to do about it, certainly. Conventional economic wisdom says you should never raise taxes during a recession. Doing so inhibits spending, which makes a recession worse. That same wisdom also says it’s okay for governments to run a deficit during a recession if they spend extra money to stimulate the economy—but that’s a luxury New York, unlike the feds, doesn’t have. It makes sense to prioritize spending when there isn’t enough money to go around. We might say we should handle health care first, basic education second, and put things like the arts and member items for sports stadiums at the end of the list. Of course, the state itself is a major engine of the state and regional economy. If it knocks several billion dollars off spending in a single year, no matter what it cuts, that will also make the recession worse, and further reduce the state’s tax revenues. This might be a lot worse than raising taxes on the state’s richest citizens, since those folks would still have plenty of money left to spend.

The state has already been through a couple rounds of spending cuts this year. Governor Paterson brought the state legislature back to try to do it again in November. The legislative leadership refused to go along this time. It may seem like we’ve dodged a bullet right now, but that bullet is going to hit the edge of the new fiscal year and ricochet back and get us in the gut in January.

Before the wheels fell off in November, we saw what Paterson wanted to cut. There’s no point in talking numbers now, except to note that every amount he proposed to cut then will be bigger for next year’s budget. We can tell you that the usual targets were hit: Putting anti-depressants on the Medicaid Preferred Drug List, cutting reimbursements to pharmacies, reducing rates paid to attendant care providers, dropping COLAs on things like service coordination and day habilitation, cutting VESID case service dollars, reducing funds to expand availability of affordable accessible housing. On top of this, if the state employee unions don’t accept wage and benefit cuts—and they’re not likely to—we will probably see an attempt to lay off state workers.

Although Paterson says nothing is “off the table” for the next budget round, and despite what he said at the NY Association on Independent Living’s September conference, the people with the wealthiest lobbying machines—unions, corporations, big hospitals, nursing homes—will be listened to very closely. They’ll tell Paterson and the Legislature to cut services for poor people, including people with disabilities, first. Although disability activists have very credible plans to cut costs deeply by replacing expensive segregated facilities and programs with inexpensive integrated ones, and by consolidating and streamlining services (see STIC’s Retort to the MISCC Report), they will have to struggle to be taken seriously.

We’ve all been through this before. What’s new is the intensity. It’s not one or two billion dollars this time, folks. It’s anywhere between $5 and $15 billion that has to be made up.

No one is going to rescue us. The economy won’t miraculously reverse itself between now and April 1, 2009. The state constitution won’t be amended to let New York run a deficit. Although the next budget will contain tax increases (called “assessments”) on health care providers and insurance companies, nobody is going to enact $5 to $15 billion worth of new taxes in this state. The new federal administration may provide some aid to state governments as part of another economic stimulus package, but they aren’t likely to hand over an amount that big. Come January, the din of people screaming, and the blood flowing from the throats of people punctured by those who they thought were their friends and allies, will be like nothing we’ve ever seen.

Simply adding our voice to the multitudes hollering, “Don’t cut me!” won’t work. We need to stand firm on our best selling point: Reforming the system to end segregation, duplication, and over-regulation is the best way to control spending, now and for the long term.

We don’t know how it will turn out, but in crisis there is always opportunity for real change. Gird your loins. We’ll be in touch to let you know how you can help.

The Children’s Hour

In the United States today: 1 out of 10 children has a serious emotional disturbance; more children have a psychiatric illness than have autism, leukemia, diabetes and AIDS combined. Only 20% of children who have emotional disturbance receive treatment from a mental health specialist. Emotional disturbance is associated with the highest rate of school dropout among all disability groups. Only 30% of children age 14 and older with emotional disturbance graduate with a standard high school diploma. Suicide is the third leading cause of death for 15- to 24-year olds.

The problems start early. In New York State, nearly 70,000 young children are expelled from preschool for behavioral reasons each year. The expulsion rates for preschool children far exceed the rates for K-12.

This is shocking and scary stuff. What accounts for this seeming explosion of mental health problems among children?

First, we must understand the developmental aspect of mental health. We have long known that things like poor nutrition and lack of exercise, can, over time, turn healthy young kids into permanently physically disabled adults. Science now knows that the same thing can happen to children’s mental health. Bad parenting and teaching, as well as poor nutrition and exposure to toxic chemicals, can, over time, permanently change the structure and biochemistry of developing children’s brains.

While it’s not true that the majority of the kids in trouble are poor, being poor is a risk factor for mental illness. Children who live in filthy substandard housing in industrially-polluted areas and whose parents can’t afford good food are much more likely to have their brains damaged by environmental toxins and malnourishment. Their parents are more likely to be under enormous stress and take it out on the kids.

It also appears that modern methods of child-rearing are contributing to the problem. Many of those behavior issues among preschoolers are happening because the kids have unstable families wracked by divorce, and their working parents can’t always get enough childcare. When very young children can’t rely on their parents to be there when they need them, they learn that they can’t control their environments or themselves, and that anything they try is doomed to fail.

Then there are the fads. It has been fashionable to believe that disciplining children too early destroys creativity. In fact it makes them unable to get along with other kids. The resulting social rejection leads to low self-esteem, and then to self-abuse and inability to form healthy relationships. A newer fad is the notion that children must be protected from the reality of failure. In schools kids are shielded from bad grades and from “losing” in games and sports, and are excessively praised for ordinary achievements. In fact, children need to be told when they’ve made mistakes and be held responsible for correcting them so they can learn to rely on themselves to get out of tough situations. Without this, they grow into emotionally needy adults who fall apart when criticized; they must have constant encouragement and praise in order to keep doing their jobs. This problem among young adults entering the workforce has been well documented recently. Research is also starting to show that children’s development is damaged by too much structured activity. Children actually need to just get out and play alone or with their friends and spend less time in sports, dance, crafts, and other organized activities. Free play is what really stimulates creativity; kids who don’t get enough of it are unable to imagine creative solutions to problems, and have difficulty coping with unexpected social situations.

So we understand the causes. What’s being done about solutions? Well, it turns out, quite a lot ... of planning.

New York produced its first children’s mental health plan in 1992. It led to a slow shift away from institutional responses and toward more involvement of families in planning and decision-making. But there are many places where kids aren’t “touched” by people who understand mental health, and therefore their conditions aren’t detected soon enough or addressed intensively. These places include pediatric offices, day care programs, schools, foster homes and the juvenile justice system. The Bush Administration’s “New Freedom” disability services initiative’s “Achieving the Promise” report highlighted this issue several years ago. It called for efforts to get to children early, in as many places as possible, with mental health screening and referral programs. In 2006, NY launched its own “Achieving the Promise” initiative. It provided mental-health screening to schoolchildren via the Child Clinic Plus program, as well as referrals for ongoing services. However, the availability of those services remains very limited.

Now New York has a new “Children’s Plan”. It starts out well. It acknowledges the nature of the problem and builds on this history to set forth a strategy that is intended to focus on prevention of mental health disabilities by promoting understanding of how children’s social and emotional development work. Implied here is the idea that some of the necessary understanding involves basic parenting skills. This is the lowest-cost way to stem the rising tide of emotional disabilities.

There are some other good ideas as well, including reforming medical education to promote a developmental approach to child psychiatry and to provide incentives for students to specialize in that area, and expanding use of positive behavioral supports in the schools. The plan even suggests consolidating Medicaid waiver programs. But it lacks realistic, innovative approaches to actually implementing these goals.

It emphasizes “cross system” approaches to fixing New York’s fragmented multi-agency disability service system. The plan acknowledges how bad things are. It says the current system “needlessly” causes children to suffer “every day”. It wants to integrate the agencies so tightly that they will produce “one family, one plan”—a single service/treatment plan and record for the child and family no matter how many different agencies serve them. It envisions a rosy future wherein the employees of several separate state agencies cooperate seamlessly on the local level to deliver a comprehensive support system to these kids—because the heads of those agencies will have signed “Memorandums of Understanding” (MOUs) to make it so.

The trouble is, it won’t work. As long as those employees work for separate organizations and answer to separate chains of command, they will identify with the rivalries and turf issues that those organizations’ leaders will promote. They will fight with each other to offload responsibility onto each other and to protect their own funding streams. There have been countless MOUs promising cooperation between state agencies in the past. They haven’t worked. They won’t work. They don’t address the real problem.

These are not organizational problems that can be solved by closer “collaboration”. This is a human tendency that has to be understood, accepted and worked with. And the only way to work with it and achieve the goal of a unified comprehensive service plan for each child and family is to put all of those humans into the same agency, under a single authority, so they will all feel themselves to be on the same “team”.

The plan envisions creating “incentives” for school districts to increase their use of positive behavior supports with students. There is already a powerful incentive for this: federal and state laws require it. The problem is that school districts are independent political entities, and the State Education Department, through VESID, refuses to take decisive action to enforce those laws. If school officials were to lose funding, or their jobs, for failing to provide positive behavioral supports, that would be a real “incentive”, and probably the only one that would work. But we don’t think that’s what the plan’s authors mean.

The plan’s vision is further limited by its focus on children with mental health disabilities. Certainly, children with disabilities need to be viewed in a holistic manner. But although the problem of children with co-occurring mental health and developmental disabilities not being able to get services is one of the biggest problems caused by our fragmented system, most of the plan’s proposals for inter-agency collaboration leave out OMRDD. The plan envisions the Council on Children and Families as the final authority for coordinating the actions of the various agencies when it comes to children’s mental health services. But the state’s Most Integrated Setting Coordinating Council should be the final authority, because its mandate covers all disabilities for people of all ages. Although the plan takes a step in the right direction by proposing that all of the state’s Medicaid waivers serving children should be combined into a single waiver, it’s only a step. All of the state’s Medicaid waivers serving people with disabilities of all ages should be combined into a single waiver where eligibility and services are determined by a single functional assessment without regard to age or diagnosis.

The authors of the plan seem to be consciously walking a tightrope between the truth that New York’s system of separate state disability agencies doesn’t work, and the sacred-cow nature of those separate systems. The plan says, “The solution is not to rid the state of specialization by creating one giant bureaucracy.” Note the use of straw-man pejoratives—“rid... specialization”, “giant bureaucracy”. But then the authors proceed to envision a future in which everyone acts as though they are part of one system even though they’re not. Folks, we just can’t get there from here. Nobody is calling for an end to “specialization” where it is truly necessary. OMH Commissioner Hogan has said publicly he doesn’t believe much consolidation is possible because “specialized” approaches are needed to address mental disabilities. While that’s undoubtedly true on the medical treatment end, it’s demonstrably false on the community-based supports end. The same holistic, person-centered, integrated approaches work with people with all disabilities of all ages, as Centers for Independent Living like STIC have been showing for decades. As for “giant bureaucracies”—right now we have three giant bureaucracies that exist to deal with people with disabilities, plus several more that work with disabilities in part. Consolidating all of those programs and services into one agency will remove huge amounts of duplication. The result will be a single agency that is larger than any of those separate agencies is now, but that is also much smaller, more efficient, more responsive, and cheaper to operate than the sum total of the fragmented agencies we have today.

And cheaper is important, because the massive increases in services the Children’s Plan envisions are going to cost a ton of money—money that we don’t have right now, and that we won’t have if we don’t make the hard decisions to eliminate administrative duplication and over-regulation to reduce per-unit costs in our existing system.

Mental Health as a Side Effect

One treatment for the nation’s failing financial health will have an interesting side effect: improved mental health for its citizens. As part of the federal “$700 billion bailout bill” signed in October, provisions to mandate mental health parity in medical insurance were enacted.

“Mental health parity” means that insurance plans that include mental health coverage should provide it at the same level as physical health coverage. For decades, many medical insurance plans have imposed drastic limits on mental health coverage, far below what they cover for physical illnesses and injuries. This has been, in part, a result of ignorance about the nature of mental illness, and in part due to what was, until recently, a relatively poor prognosis for extended treatment of many mental illnesses.

It is now settled science that all of the major psychoses, and many other mental health problems, have clear physical origins either in the structure or the biochemistry of the brain. In recent decades there has been a revolution in treatment, particularly in medications, that has greatly improved outcomes for people with mental health disabilities. Among those outcomes are improved productivity, and lower support costs, for people who get the right treatment. And insurance plans that offer mental health parity, on average, cost less than one percent more than those that don’t. So there is no longer a rational basis for drastic limitations in coverage.

Disability activists and mental health professionals have made this argument for at least 20 years. In 1996, the first federal mental health parity law was enacted. It required parity in annual and lifetime dollar payout limits for mental and physical coverage. Insurance plans got around it by imposing limits on the number of treatments or prescriptions covered.

In 2007 in New York, Timothy’s Law took effect. That bill required parity in treatment intensity and duration, as well as money payouts. However it had significant limits. Organizations with fewer than 50 employees, and self-insured organizations, were exempt from offering parity in their insurance coverage, and whole classes of mental health conditions, including alcohol and substance abuse, and post-traumatic stress syndrome, weren’t covered.

The new federal law removes most of those exemptions and gaps. The fewer-than-50-employees exemption still exists, but Timothy’s Law requires insurance companies to offer parity plans to those employers, and the state must provide subsidies for them to buy them if they choose to. Self-insured entities are now covered by the federal law, as are Medicaid and Medicaid-funded programs including New York’s Family Health Plus and Child Health Plus. Also, the federal law mandates coverage for most mental health conditions, including substance abuse and post-traumatic stress syndrome. Those conditions are especially important to Iraq War veterans.

Most insurance plans are required to begin complying with the new law on January 1, 2010.

Paterson Vetoes Integration

During the 2008 legislative session, some disability advocates promoted a bill to require New York State agencies serving people with disabilities to provide those services in the most integrated setting. The bill was vetoed by Governor Paterson.

The bill’s title is ridiculously long; we’re calling it the “Individual Integrated Settings Bill” to distinguish it from the law that created the NYS Most Integrated Setting Coordinating Council (MISCC). The bill did not have a high profile; we at STIC only learned about it after was passed and sent to the Governor. There was no concerted effort by advocates to promote it.

The bill’s key points include:

  • Defines “community-based setting” to exclude any form of congregate segregated facility. This would stop OMRDD from claiming that its huge network of group homes and day programs is a “community-based” service system.

  • Creates a “presumptive right” for people receiving disability-related services and supports to receive them in the most integrated setting.

  • Requires every state agency serving people with disabilities to create, for each person, a plan to achieve the most integrated setting, including specified services and supports and a timetable.

  • Requires any state agency that seeks to move a person into a more restrictive setting to provide, in writing, a detailed explanation for the move and information on how it can be appealed.

  • Requires that people with disabilities be involved in each state agency’s development of rules and regulations to implement the law.

  • Requires each state agency to issue an annual report on its efforts to enable and expand use of integrated settings.

Governor Paterson vetoed the bill, he said, because it duplicates the work of the MISCC and because his budget office had estimated it would cost state agencies $250 million per year.

While the MISCC has made more progress in the last two years than it did in the first four years of its existence under Governor Pataki, it is still very far away from creating anything like an enforceable universal mandate for services in the most integrated setting. In fact, the MISCC leadership does not appear to view that as its role (see STIC’s Retort to the MISCC Report).

We don’t know how the budget people arrived at the cost estimate. Most of the disability service agencies already have an individual planning process, and some of them are already required to include community integration in those plans. It would not be difficult for the rest of them to use existing models to add transition to integrated settings to the planning process. It certainly would not cost the agencies anywhere near $250 million a year to do that, or to produce annual reports. So we suspect the budget division saw the bill as a mandate to create new services—forgetting that old, more-expensive segregated programs could be shut down as a result.

Say ADAAA...

The Americans with Disabilities Act (ADA) may have turned a corner in its troubled history this past September. That’s when President George W. Bush signed the Americans with Disabilities Act Amendment Act (ADAAA) into law.

To understand why this was necessary only 18 years after Bush’s father signed the original ADA, consider this passage from Joseph Shapiro’s masterful brief history of the American disability rights movement, No Pity:

“Nondisabled Americans do not understand disabled ones.”

That was clear at the memorial service for Timothy Cook, when longtime friends got up to pay him heartfelt tribute. ‘He never seemed disabled to me,’ said one. ‘He was the least disabled person I ever met,’ pronounced another. It was the highest praise these nondisabled friends could think to give a disabled attorney who, at thirty-eight years old, had won landmark disability rights cases, including one to force public transit systems to equip their buses with wheelchair lifts. But more than a few heads in the crowded chapel bowed with an uneasy embarrassment at the supposed compliment. It was as if someone had tried to compliment a black man by saying, ‘You’re the least black person I ever met,’ as false as telling a Jew, ‘I never think of you as Jewish,’ as clumsy as seeking to flatter a woman with ‘You don’t act like a woman.’”

Because nondisabled people don’t understand, the ADA is not like other civil rights laws. Laws protecting African-Americans and women simply say you can’t be treated unfairly based on race or gender. You don’t have to prove that you’re black or female to be covered. The ADA was based on the premise that it is proper to discriminate against people with certain disabilities under certain circumstances. So it only protects people who currently have a significant permanent disability, a history of a disability, or are “perceived” to have a disability, and who have experienced discrimination because they matched one of those three “prongs”—but only if that discrimination wasn’t intended to protect the health and safety of others.

Since 1999, Supreme Court decisions such as Sutton v United Airlines and Toyota v Williams, most of which involved employment discrimination, have focused on whether plaintiffs fit the definition of disability rather than on whether they were unfairly treated. Those decisions gradually whittled the “perceived disability” prong down to nothing, and made it progressively harder to qualify under the “actual disability” prong. Employers were free to discriminate against people with high blood pressure or amputees because their medications or prosthetic limbs “mitigated” their disabilities to the point of non-existence. They could fire somebody who got hurt on the job instead of accommodating them because the injury wasn’t severe enough to “substantially limit” a “major life activity”. They could refuse to let a person with burn scars on their face work as a receptionist on the grounds that their appearance would scare people.

Well, no more. Hopefully. Maybe.

The ADAAA contains a “Findings” section that specifically overturns these Supreme Court decisions by name, as well as other decisions based on them.

It also broadens the definition of “disability” in several ways. It moves definitions of “major life activities” from regulations into the law itself, and expands them to include the “operation of major bodily functions”. It states that intermittent conditions (such as relapsing/remitting MS) are considered disabilities if they substantially limit one or more major life activity or bodily function when they are active. It specifies that whether or not any prosthesis (with the exception of eyeglasses that fully correct a person’s vision), medication, treatment, assistive technology, or anything else “mitigates” a disability is irrelevant. And it makes it clear that being “perceived” as having a disability isn’t dependent on whether the person actually has, or is thought to have, a condition that substantially limits a major life activity.

Beyond this, the ADAAA substitutes “on the basis of disability” in key places where the original law said things like “because of the disability of the individual”. This would appear to put the ADA on a par with other civil rights laws, where discrimination “on the basis” of something—without requiring the victim to prove that s/he is a member of the protected group—is outlawed.

That was certainly the reason for this last change. But it’s not clear whether this will be effective. Congress wanted to hedge its bet by both stating that discrimination against a person on the basis of disability, whether that person has a disability or not, is illegal, and by making it very difficult to exclude anyone from the definition of disability. Although the ADAAA removes any explicit connections between the definition of “disability” and the prohibition of discrimination “based on disability”, courts may decide that Congress went to all the trouble of providing a detailed definition of disability for a reason and continue to try to use it to exclude people from coverage. It might have been better just to strip all definitions of disability from the law. After all, it’s not necessary to define “race” or “gender” in order to protect black people or women.

Also, some Supreme Court decisions have said that Congress didn’t provide enough evidence that disability discrimination occurs to justify outlawing it. The Court has stated, in effect, that regardless of what Congress does, only it has the final authority to decide who has been discriminated against and what remedies are appropriate. The ADAAA doesn’t address this issue at all.

In any case, the legal landscape will certainly change for people with disabilities come January 1, 2009, when the ADAAA takes effect. We’ll watch the courts as we always have, and keep you informed.

STIC’s Retort to the MISCC Report

This fall the NYS Most Integrated Setting Coordinating Council (MISCC) released a draft annual report for comments. The MISCC’s purpose, as defined in state law, is to create a comprehensive plan to ensure that people with all disabilities of all ages can receive services and supports in the most integrated settings for living, learning, working, and playing. Once the plan is produced, the MISCC is supposed to hire an independent consulting firm to evaluate its quality. The MISCC must then monitor implementation of the plan, and the heads of all of the MISCC member agencies will be legally obligated to carry out all of its provisions.

The annual report culminates almost two years of work by the revived MISCC under the leadership of new OMRDD Commissioner Diana Jones-Ritter. Although the MISCC has been much more energetic and productive under Ritter, who took over after Tom Maul’s departure along with that of the Pataki Administration, the report is seriously deficient as a roadmap for disability service reform.

We reviewed the report and related documents, and provided extensive detailed comments to the MISCC. We’ll summarize them here.

The report is not the comprehensive plan that the MISCC is required to produce. In fact, neither Ritter nor any of the other agency representatives appear to understand that they are supposed to create such a plan. Rather, it is a collection of reports from the member agencies on some (but not all) things they have done, and some (but not all) things they plan to do, related to disability services. Across these separate reports we see five counter-productive common themes:

1. “Mission Creep”, or trying to be all things to all people

Many proposals seek to add new services to Agency A that are part of the core competencies of Agency B. This leads to redundant administration, which inflates costs, and creates artificial “cross system” coordination problems that wouldn’t exist if all similar services were consolidated into one agency.

2. Failure to eliminate redundant programs and administration and simplify regulation, data collection and monitoring

In this critical period of fiscal crisis, it will never be easier for state officials to make the hard-but-right choices to wipe out administrative and programmatic redundancy and over-regulation under the banner of fiscal responsibility. The MISCC’s primary focus should be on this kind of reorganization.

3. Failure to address the statewide/local area divide

A significant source of service gaps and service quality problems for people with disabilities results from the fact that administration of many programs is shared by state and local entities. This is particularly true of Medicaid State Plan services, social services, and OMRDD’s and OMH’s regionalized service system. It is also seen in widespread lack of compliance by local school districts with federal and state special education law. Across the state, failures by local divisions to comply with state-level law, regulation, and directives are seen. These major problems with service delivery are not addressed anywhere in the report.

4. Failure to understand what “most integrated setting” means

Several agencies are continuing to promote open-ended, as opposed to temporary or transitional, participation in various segregated congregate programs. The most integrated setting is, in all cases, an individualized, consumer-controlled setting in the community where most of the person’s interpersonal contact is with nondisabled people who are not paid to serve them. This is the only permanent setting that is acceptable for people with disabilities to live, work, learn, or play in.

Although the MISCC has taken a cue from advocates who say that the lack of affordable and accessible housing is a key barrier to greater community integration, most of the housing proposals in the report emphasize “supported housing”, a specialized form of housing-plus-services, usually in congregate segregated settings, that is not needed or wanted by most of the people with disabilities who seek a place to live.

The report pays lip service to advocates’ demands for converting the disability employment system from sheltered workshops to integrated competitive jobs, but does not include any specific steps to do so.

Immersion in the most integrated setting confers unambiguous benefits for the physical, psychological, and emotional health and well-being of every person. Conversely, segregated settings maintained over time cause unambiguous physical, psychological, and emotional damage to everyone exposed to them. A choice to remain in a segregated setting is much more like a choice to continue smoking than it is like a choice to live in a particular neighborhood or style of house. Just as the State of New York neither outlaws nor endorses smoking and makes efforts to get people to quit, no New York disability service agency should ever endorse segregated settings and all should make strenuous efforts to encourage people to get, and stay, out of them.

5. Failure to exercise leadership to create a unified, comprehensive and measurable plan focused on the single goal of the most integrated setting

It is clear that the member agencies have been allowed to create their sections of the report with no effective oversight from the MISCC itself.

The MISCC has called for breaking down “silos”—the bureaucratic turf issues that keep state agencies from acting in a rational, coordinated manner to ensure that people with all disabilities, including multiple disabilities, are served appropriately and efficiently. However, the report unintentionally highlights several instances of “silo” craziness that have happened after the MISCC was established in 2002—so to speak, right under the MISCC’s nose. Examples include:

  • A Medicaid infrastructure grant proposal to address disability employment issues, spearheaded by the Department of Health (not an employment-related agency), that allowed the Commission for the Blind and Visually Handicapped, a vocational rehabilitation program that is housed, inexplicably, in the Office of Children and Family Services (OCFS), to include a self-assessment of needed reforms that completely ignored CBVH’s notorious reliance on sheltered workshops. The grant proposal will spend some $5 million per year, over several years, mostly on things that are tangential to the big issues that contribute to unemployment of people with disabilities.

  • The creation of a new Medicaid Home and Community-Based Services waiver for children with disabilities in foster homes, administered jointly by DOH and OCFS, that largely duplicates services already available to children with disabilities from other waivers.

  • A proposal by DOH to add personal attendant-type services to the Long Term Home Health Care Program (LTHHCP, or “Lombardi”) waiver that are already available to most of the same people from the new Nursing Home Transition and Diversion waiver.

  • A transfer of responsibility for acting on complaints of abuse of adults with developmental disabilities away from county Adult Protective agencies, which had authority to remove endangered adults from their homes, to OMRDD, which has no such authority and can only stick the complaints in a file somewhere.

There is a lot of self-congratulatory back-patting in the report, and much of it is not justified. An example is the joint DOH/State Office for Aging (SOFA)-administered NY Connects program. This program to establish a “single point of entry” for long-term care services that would provide uniform unbiased information to people with disabilities and elderly people is under the de facto control of county governments. Many counties have either not got the program up and running or have ignored the requirement for meaningful consumer input into its operation. The result is that it duplicates an already problematic function of county government, that of “gatekeeper” for Medicaid long-term care services. Many counties use this function to illegally deny availability of State Plan Medicaid services that are supposed to be uniformly available around the state.

We don’t want to give the impression that the MISCC, and its related bodies, the Inter Office Coordinating Council (IOCC) and the NYS Council on Children and Families (CCF), aren’t doing anything right. There are some interesting things going on.

For example, it looks like the IOCC may have a good idea to improve the local government planning process for “mental hygiene” services, which includes services for people with developmental, mental health, and/or substance abuse disabilities.

Each county has a mental hygiene planning committee that includes three subcommittees, one for each of those groups. They are supposed to create an annual plan showing local service needs and responses to them. The subcommittees meet and develop their own plans without talking to the other subcommittees, ignoring all of the areas of commonality between them. As OMH Commissioner Michael Hogan said at an IOCC meeting, the resulting documents are “more like a list of demands than a coordinated action plan.” The process tends to be dominated by local agencies rather than consumers, and in our region the MR/DD subcommittee is controlled by agencies that prefer to build group homes and segregated congregate day programs rather than integrated individualized services. The three plans are sent up to the three state agencies—OMRDD, OMH, and the Office of Alcoholism and Substance Abuse Services (OASAS)—that work with those disabilities. Those agencies use the plans to make resource allocation decisions, but they don’t talk to each other about commonalities either.

In fact, this year, for the first time ever, the three agencies used software to combine all the data from the plans into one cross-disability, statewide summary that can show common needs on a regional scale. OASAS is leading a demonstration project in the Finger Lakes region that will use this data to create a guided planning process. Facilitators will bring the subcommittees together and tell them, “You have x dollars to serve x people in this region. You’re all asking for more services. So how can we reallocate the existing money across all of these disability groups to serve more people?” If this works, it could short-circuit provider agencies’ self-serving attempts to expand their segregated programs by forcing them to acknowledge that integrated services are cheaper and more efficient, as well as preferred by people with disabilities.

Meanwhile, CCF will get final decision-making authority to resolve disputes between state agencies and their local offices over who is responsible to provide services to children whose multiple disabilities cross agency boundaries. At last, somebody will be able to say, “the buck stops here” for these kids. This idea is a direct response to the “People First” listening forums held around the state last year by the major agency commissioners.

As part of its MISCC report, DOH says it is working on producing a single individual needs assessment for people with all types of disabilities. This is a critical step toward creating a unified disability service system.

The MISCC Transportation Committee has made concrete proposals for legislation and regulatory reform that would, among other things, mandate accessible taxi services and encourage counties to adopt effective schemes to coordinate use of all accessible transportation resources to maximize efficiency and availability. These measures, if combined with new, well-funded programs to provide fare subsidies, vehicle lease/purchase subsidies, and stipends for paid drivers, would go a long way to address the longstanding problem of insufficient affordable accessible transportation for New Yorkers with disabilities.

Many MISCC member agencies are developing solid, if not very efficient, plans to improve uniform collection of useable data about service gaps. Commissioner Ritter consistently calls for measurable goals, even if she doesn’t always get them.

Ritter is a dynamic and well-intentioned person, and many of her colleagues among state agency representatives on the MISCC are serious about making changes. Also on the MISCC are some very articulate advocates who consistently speak up for real reform and integrated services.

But on the whole, all of this effort is falling far short of meeting real needs, because it doesn’t address, or even acknowledge, most of the real problems.

The MISCC must speak with one voice—its own, not those of its member agencies. The report must contain far more specificity, including numeric goals, milestones, timelines, and responsible staff, than it currently does. It must not contain anything that does not contribute to maximizing use of the most integrated setting for people with all disabilities of all ages, and it must embody every activity of every member agency that affects people with disabilities.

To achieve this the MISCC must be both gatekeeper and overseer. It must not let member agencies insert items that do not conform to the goal. It must go deeper, to direct that member agencies may not undertake activities that do not conform to the goal, and deeper still to monitor those agencies and ensure that they comply.

The MISCC must stop assuming that any state disability service agency, office, or program must continue to exist. The hard fact is that no amount of “cross systems collaboration” on data collection, quality control, outreach and intake, or anything else, will ever be good enough. We need every bit of cost-effective efficiency and uniform quality that a single system that doesn’t need to “cross” anything can provide. We need one statewide agency that houses all of New York’s disability supports and services. That agency must use a single set of eligibility rules, and a single assessment based on functional needs and abilities, to serve people with disabilities without regard to age or diagnosis. It must create and execute a decisive, detailed, time-limited plan for maximizing all forms of community integration, and phasing out all uses of segregated congregate programs as permanent responses to people’s housing, education, employment, or recreation needs. It must be designed and regulated so it can function effectively in hard economic times, not just when money is easy to find. It must not intrude into people’s private lives or abridge their civil rights as a condition for providing services. It must have substantive and effective oversight by people with disabilities and their advocates.

The job is dauntingly difficult, but the choice is clear. The MISCC can either step up to fulfill its historic role of redesigning New York’s disability service system to be a model for the nation and the world, or it can fail miserably, and in the process give aid and comfort to those who believe that government can never, ever, get anything right, and should not be allowed to try.

Self Help Issues & Answers

Machine Politics

by Maria Dibble

This Election Day was like no other for me, and not just because we finally elected an African-American to lead our country.

It was the first time ever that I was going to be able to vote “privately and independently” on an accessible voting machine. It was the first time I would not require any assistance in reading the choices, pushing buttons, or casting my ballot. Well, that’s what it was supposed to be, anyway.

When I arrived at the polling site I had slight butterflies in my stomach as I anticipated this momentous event. I’m not being sarcastic, I mean it. I was really excited about voting by myself this year. Now being Executive Director of STIC, I knew that the poll workers had been trained, and I’d had a chance to check out the machine over the summer, so I was assuming smooth sailing.

Well, first, I had to request the machine; they didn’t offer me the opportunity like they were supposed to. Then, when I asked to use the accessible machine, the workers became flustered and disconcerted. They didn’t have it turned on, they had to find the key, they weren’t sure where the instructions for operating the machine were, and so on. But the man that assisted me was a trooper, he found the key, got the machine running and I was ready to vote. It only took about 15 minutes for them to get ready.

Did I say I looked forward to voting privately? Well, there was no curtain around the machine, and I wasn’t set off in a secluded corner. Other voters were fascinated by the machine and the blind woman voting and stood nearby asking questions of the workers on how the machine functioned and commenting on how “wonderful” it was. I sorta felt like I was one of Jerry’s kids. “Look at me I’m walking, look at me I’m voting we who never voted before.”—just to paraphrase the song from those hideous telethons. I understand why they were interested, but it was quite distracting. I had to keep raising the volume on the talking machine in order to hear.

I voted on the last proposition and reviewed my ballot and hit the button to print. That’s where the fun really began. This machine, which cost thousands of dollars, printed soooooo slowly that it took the ballot about two minutes to print out, and all the while the machine was clunking and shaking like a piece of junk. Once the ballot prints out, in order to verify that what was printed was indeed what I intended, the ballot must be reinserted into the machine, scanned and read back to me. The printer spit the ballot out somewhere on the other end of the machine from where I was sitting, so I needed the worker’s help to retrieve it, and then to insert it into the machine (since I also didn’t know where the slot was for that). So much for the totally independent part of the day. Anyway, it took a few tries before the machine would take the ballot and scan it. Once it was done I heard something to the effect that the ballot was invalid because parts couldn’t be read. It must have gotten smudged somehow when going from the printer into the sleeve that theoretically protects my votes from being seen by poll workers. Well, you’re probably thinking no big deal, just print the ballot again, right? Not with this machine. I had to go through the whole process of voting all over again. At least the second time it worked.

Time to vote was about 35 minutes, not including time standing in line—which isn’t an issue at my rural polling place. If I’d voted as usual with my husband’s assistance, it would have taken less than five minutes.

Even with all the problems though, I did get to do most of it alone and I really was pleased to be able to do so. But if the State Board of Elections (BOE) had listened to advocates, we’d be using a faster, easier-to-operate machine and I could have truly voted “privately and independently”.

I don’t fault our local BOE at all, since they worked with us every step of the way to try to make things go smoothly on Election Day. In the end, I’m guessing they were much more frustrated that day than I was.

Medicare Part D Tips

by Martin E. Shay

For those of us who rely on Medicare Part D prescription coverage we are once again confronted by the need to select a Prescription Drug Plan (PDP) for the coming year. The option period runs from November 15 to December 31. If we want to change plans we need to get busy today. If we do not make a new choice by December 31 we will automatically be re-enrolled in our current plan.

Note that the plan which we chose last year may not be the best choice for the coming year; Humana PDP, for example, has raised my monthly premium from $31 to $37 and nearly doubled my co-payment from $4 to $7. In addition, they have excluded some of my meds from coverage. In my case, based on my personal list of meds, Humana was the least expensive plan last year; this year they rank #12. My personal out-of-pocket drug costs for 2008 have been more than double the original 2008 estimate.

There are a number of Medicare Prescription Drug Plan calculators provided by a number of sources. Comparing the results of two of them with the official Medicare website ( yielded completely different results. One “handy dandy calculator” was clearly biased towards “MAPD” plans which may not be the best option for those of us who have traditional Medicare. Therefore I am strongly recommending that you use the official Medicare website’s calculator.

You will need to enter all of your medications. Be very careful about entering dosage and quantity information, they dramatically affect your costs. Save your list and compare the various plans. You will need to look at the top ten to fifteen choices for a realistic comparison. Many plans offer an initial deductible of $150 to $300 and a lower monthly premium so they appear to be lower cost on the list. They’re not. If you divide the deductible amount by 12 (months) and add that amount to the monthly premium you will find that they mostly fall into the $30-$40 per month range. Co-payments range from zero to $7 per prescription for Tier 1 generic medications.

My criteria for Part D for my own prescription coverage is as follows:

1. No deductible
2. low monthly payment
3. low co-payment
4. Company is not under indictment
5. Uses retail pharmacy (such as CVS)
6. PDP only

The entire process is quite complicated and confusing. Each of us will face different costs depending on the meds our doctor prescribes, each plan treats certain meds differently. Two plans stand out. The HIP NY Enhanced Part D appears to offer no “donut hole”, the costs remain level; it’s the one I selected for myself even though it was a little more expensive. The least expensive plan I found is called “Wellcare Signature”. it appears to have no co-payment for Tier I meds, but they’re having some serious legal difficulties according to news reports and I’m not willing to take a chance with my drug coverage.

Your mileage may vary............

True Confessions of a Pacifist,
Who Has Contemplated Murder

by Sue Ruff

I wish I knew how to react when I am truly outraged. It doesn’t happen that often. I still feel protective of my children, even though they are adults now. One of them has disabilities and I get very, jaw-clenching angry about the way some of her staff behave or treat her. I have felt the same way when I attended meetings as an advocate or support person. While some people are ignorant or untrained, others should just not be working in human services.

Conflict can be a daily occurrence for some people. Family, school, jobs—lots of places and people with which to deal and negotiate. Do you have children, family members or friends who depend on you? Do you experience nausea before those meetings where decisions will be made about your loved one?

Do you hold onto anger or have a system and style for letting it go? Ah, our human impulses..

Everyone has a story. Everyone needs someone to listen to his or her story. Sometimes the story needs to be heard several times by several people, until it finds a way to be worked through and left behind. A good listener is like a sponge that can soak up the feelings with compassion. Where do we find and cultivate good listeners? Networks (support systems) that are broad, mutual, and kind may help but they take time and patience to build. I love my friends for their listening skills and I try to be a good listener for them.

How do we develop a wide range of methods to use in dealing with anger or conflict? What can we control and what cannot be controlled? Where do we find a place or a space for retreat and for emotional release? Do we give ourselves even five minutes a day to get away from the commotion so we can think, process, and let go of anger, frustration, disappointment, or hurt? I may need a five-year vacation. I have friends who have adult children with disabilities and we are still going to meetings about our children and still fighting some of the same battles we have always fought. After thirty years, that’s really frustrating.

I once went to what I knew would be a very difficult meeting, with the echoes of movie characters running around my brain:

“At my signal, unleash hell.” - Russell Crowe, Gladiator
“Fasten your seatbelts. It’s going to be a bumpy night.” - Bette Davis, All About Eve
“Gentlemen, you can’t fight in here! This is the War Room!” - Peter Sellers, Dr. Strangelove
“I’m here to do one of two things, kick ass and chew bubble gum. And I’m all out of bubble gum.” - Roddy Piper, They Live

You probably have your own favorite movie quote swimming around, too. Gives one perspective. Imagine walking into a tense meeting with a movie hero or heroine by your side. Who would you pick? Or would you invite more than one? Just surviving some meetings takes courage, not to mention imagination.

What jobs do the playground bullies or victims get when they grow up? Who teaches us how to play and work together? How did you feel the first time you encountered serious conflict? . the second and third times? My oldest child always wanted a big brother so he would have someone to help him on the playground. I knew how he felt when I had to deal with some people who didn’t “play nice.”

What happens to the children who fight back? What strategies and tools of negotiation or manipulation do we learn as youngsters? Is it easier to withdraw, become invisible and passive? Who joins a gang or clique (strength in numbers)? Who becomes the leader? Who stands up for himself or his beliefs?

We encourage our children to make friends; I like taking friends to meetings. I try to act as if I am not vulnerable and powerless when I feel like jello inside. Have you perfected the mask of self-control? Humor is my best ally and it helps, because I turn red when I’m angry.

Some goals and dreams just can’t be compromised or discarded. It is very hard to not feel protective of the ones you love. Some of the people with whom we work have no close family or friends who love them and speak for them. Do you rehearse your reactions to the worst-case scenarios before the “meeting?” Do you secretly practice your come-backs on the way there and the way home? If someone planted a tape recorder in my car, I’d be in trouble.

A wise friend taught me the confident authority that comes when you wear a power suit and ask your opponents for a cup of un-poisoned tea or coffee before you sit down to meet. Some of the rules are clear, but the conflict always arises over interpretation and application of those rules. They can’t put me behind bars for my thoughts, yet.


Annual Campaign

Thanks to you, STIC’s Annual Campaign continues to break records. We are now over $7,800! Can we get to $10,000? Sure. If you haven’t yet contributed, there’s still time. If you still have the donation form and return envelope we sent you over the summer, please use them. Otherwise, please put “Annual Campaign” on the memo line of your check, made payable to STIC.

And thanks to the contributors below!

Dee Davis
in memory of Dr. Fred Arnold

Joseph Lomonaco

Walter & Valerie McWain

Mark & Sue Odell

Robert & Lynne Shutt

Expression through the Arts Gets Axed

by Kami Giglio

In late October we received some unfortunate news. OMRDD officials in Albany have eliminated the art and music program for children that we have been working on for a few years now, due to the current budget deficit. We regret to inform you all that “Expression Through the Arts” will be unable to open at this time. We still hold a dream of creating an innovative and integrated program for kids that will encourage them to learn to express themselves in creative ways and will build community relations within the larger art community. However, until the current fiscal and budgetary crisis resolves, we will have to set this goal aside for now. We would like to thank everyone who supported this program and contributed his or her time and efforts toward it.

New Faces

Chad Eldred
I am thrilled to have been given an opportunity to join the team here at STIC as a Medicaid Service Coordinator. I look forward to working with new people and to taking on new challenges. I have worked in the human services industry for the past 12 years most recently at Catholic Charities and prior to that at Achieve. I have lived in and around the Binghamton area for most of my life. My leisure time is spent rowing, reading, writing, and getting my nieces and nephew wound up into a frenzy.
Lisa VanDervort
I’m a new Regional Resource Development Specialist in STIC’s TBI RRDC.

I’ve worked in Human Services for over 20 years in both “hands on” and administrative positions. I worked for Compassionate Care of CNY for just under 4 years in the TBI Waiver Program as a Home and Community Support Staff, Independent Living Skills Trainer, and Service Coordinator.

My decision to work in the human services field probably came from growing up in a disability household—my father had multiple sclerosis and diabetes and gradually became fully disabled by the time I was 11 or 12. I learned to assist with his care and never thought this wasn’t what everyone’s family was like. My father instilled in us the attitude that “I can still do this” rather than “I can’t do that anymore”. We had the assistance of his parents and several family members on my mother’s side to help my mother make ends meet with a disabled husband and three young daughters. Support was just something that was natural to all of us, but stayed limited to what was needed, not taking over and “doing for” someone. My father could no longer feel, see, or independently move around but he still tutored Broome and SUNY students in chemistry and knew the entire periodic table in his head!! What a role model!!

I’m very excited and appreciative to the staff of the RRDC who believed in my abilities and have given me the chance to promote the “learn to do for yourself” model of providing assistance/training/supports as needed. I hope to be an asset to both the RRDC and STIC.

Parents Empowering Parents (PEP)

is a free support group open to all parents or guardians of
children with disabilities.

We meet the last Wednesday of every month.

We often have speakers on topics such as “Keeping Our Kids Safe” and
Advocating for Your Child in the School System”.

Lunchtime PEP meets
from 11:30 to 12:30
in STIC’s beautiful new building:
135 E. Frederick St., Binghamton, NY

Please join us at any time.

RSVP is preferred to account for food.
Contact Thea Arnold at
724-2111 (voice/TTY) for more information.

Thank You!

STIC would like to say thanks to David Bame of Equip-to-Care, a medical supply company in Bainbridge, NY. Thank you for your generous donation of ten wheelchairs to STIC’s loan closet.

David has been serving the people in Chenango and surrounding counties for five years now and has been a valuable asset to those people who need wheelchairs, scooters or other adaptive equipment. David can be reached at Equip-to-Care at (607) 967-5922.

The 12 Tips of Computers

Ken Dibble

Folks who work in the not-for-profit world tend to be very dedicated to the people they serve, and not so interested in the mundane details of getting the work done. That includes using computers. Your focus is understandable and your dedication is highly commendable.

However, there is something to be said for knowing the tools of one’s trade and using them wisely. A computer is a tool, one that has been standard in offices for almost 25 years. Imagine if you were a carpenter and you told your boss, “Tee hee hee, I don’t really know which end of the hammer to hold!” How long do you think you’d keep that job? It’s not cute to be computer illiterate. It’s just... illiterate. It’s also inconsiderate. About half of all the email traffic in the world is spam and malware sent by computers that have been hijacked by viruses and trojans. If you have a new computer and it’s slow, most likely it’s infested, and you’re helping to slow down the internet. You have a responsibility to keep your computer clean and safe.

So here are few tips to help you get up to speed:

1. If you use Windows, learn the Windows file system. Your documents are not “in” Word or Excel. They are in the computer. Learn how to find them, copy them, move them, and delete them without running Word or Excel. Learn how to back up important files to external media like floppy discs, thumb drives or CDs. Do it regularly. And just as regularly, delete files you no longer need.

2. If you use Windows, in the file manager (Windows Explorer) don’t use the little pictures of files. Set it to show “details” in the View menu, and turn off the setting (“Folder Options” in the Tools menu) that hides file types or extensions (the part of the file name that comes after the dot, like .doc, .exe, .txt). This gets you two things. First, it lets you sort files by name, type, date, and purpose so you can find them easier. Second, it will help keep you from opening files that are dangerous.

3. If you use Windows, install and update anti-virus software. Every day viruses come into STIC’s email that are allegedly “from” OMRDD or other state agencies. Viruses steal email addresses and put them in their “From:” lines. Some people who communicate regularly with OMRDD or other state agencies are infected. You don’t have to buy McAfee or Norton anti-virus software. The free versions of AVG and Avast work very well, and they can be set to update automatically each day. Weekly isn’t good enough any more; do it daily.

4. Unless you absolutely know what you’re doing, never open an email attachment file that ends in: .exe, .com, .scr, .pif, or .bat. These are most likely bad things that will damage your computer. Also, don’t open or pass around cute little .wmv video files. They are huge and clog up people’s email, and some of them contain viruses. If you don’t see the file extensions, see item 2, above.

5. If you use Windows, don’t run as an administrator unless you need to install or remove a piece of software. At all other times, run a restricted user account. That way nasty stuff can’t install itself on your machine. If you have Windows 2000 or later and you don’t need to log into your computer to use it, you’re running as an administrator. Have whoever services it set you up with separate restricted user and administrator accounts. I know it’s annoying to have to log in and switch accounts when you want to install something. But this feature is there to protect you-and the rest of us. If you won’t do this yourself, at least, please, don’t let your kids run as administrators.

6. No legitimate entity will ever ask you, via email, for a password for anything. No legitimate entity will ever suddenly pop up a message on your screen that sends you to some website to buy something to “protect” or “clean up” your computer. If you get an email saying somebody has sent you a greeting card and you can view it on a website, it’s probably bogus. The website will probably try to install something nasty on your computer. If you run as a restricted user, it can’t happen. If you run as an administrator, it’s already too late when that website appears.

7. Do not use Internet Explorer as your web browser. Use Mozilla Firefox instead. It works pretty much exactly like IE and except in very specialized cases, it’s the only browser you’ll ever need. IE lets Windows install garbage on your machine without you knowing it’s happening. Firefox doesn’t.

8. If you create documents for distribution, pay attention to the size of the files. If you put photos into a document, compress them to a smaller file size first. STIC’s email gets clogged up with PDF or PowerPoint documents that are 2 or 3 megabytes in size or more. If you don’t know what I’m talking about or how to manage file size, then you shouldn’t do desktop publishing. Do some online tutorials, or give the job to someone else who knows how to do it.

9. PDF documents are not very accessible to blind people, and they aren’t accessible at all if you just scan a document into a .pdf. (That’s a cause of over-large documents, too.) If you use Acrobat to scan .pdfs, there’s an option to convert it to real text during the process. Use it.

10. When sending documents, use standard, accessible file types. Standard Word documents (.doc) are okay. “Rich text file” (.rtf) documents are best. Use the “Save As Type” feature in your software to control file types. STIC can’t read and will not accept Office 2007 .docx, .xlsx, or .pptx files. We are not going to waste thousands of taxpayer dollars to buy new software so we can read them.

11. If you use Windows, turn off Automatic Updates. Instead, do Windows Updates manually once a month. Only take “critical” updates; they patch security holes that can get you into trouble. Never take “hardware” updates from Microsoft. They can make your computer stop working.

12. At home, ditch Windows and get a Mac. If you can’t afford a Mac, get Ubuntu Linux. Dell sells cheap computers with Ubuntu; Red Barn has high-quality ones. Macs and Ubuntu can do everything most people need—word processing, spreadsheets, email, web browsing, instant messaging, photo editing, multimedia—as easily as Windows, and in some cases better. There aren’t many games for them, but if you or your kids play games, get a Wii or Xbox. You’ll all be much safer.

If you’re in human services, working with people is the most important part of your job. But we all need to use tools to get our jobs done. Just as surgeons are required to keep their tools clean, and machinists must keep their lathes and presses in good repair so they don’t get hurt, we who use computers have a responsibility to learn how to use them properly and keep them safe. Computer illiteracy isn’t funny. It’s just inconsiderate and dangerous.

Community Programs

VESID Holds Public Meetings

VESID is working on their 2010 State Plan for Vocational Rehabilitation and Supported Employment Services. They will hold four actual public meetings, and provide a web-based “virtual town meeting” to get public input for the plan. Here’s the schedule:

Virtual Town Meeting
December 22, 2008 - February 13, 2009

January 7, 2009
2:00 pm - 4:00 pm
Meeting Room 2
Empire State Plaza Concourse

Massapequa January 9, 2009
10:00 am - 12:00 noon
Massapequa Career Center
977 Hicksville Rd.

New York City
January 15, 2009
2:00 pm - 4:00 pm
Andrew Heiskell Braille & Talking Book Library
40 W. 20th. St.

January 21, 2009
2:00 pm - 4:00 pm
NYS School for the Blind
2A Richmond Ave.

You can also send written comments to:

VR Policy & Partnerships Unit
Room 1603 OCP
Albany, NY 12234

Materials will be provided in alternate formats at the meetings, but interpreters will be provided only on request. To request an interpreter or other accommodation, call (800) 222-5627 (voice/TTY) at least 10 days before the meeting, and refer to “State Plan Meeting”.


Winter 2008-09
Issue No. 93