A Breath of Fresh Air

by Maria Dibble

Any change of administration in Albany raises hopes that things might be different, that maybe this time the disability community will be heard and that maybe rhetoric will actually become practice or policy.

Well, a breath of fresh air has blown into the Capital and many doors have opened to welcome the input of people with disabilities and the organizations that represent them.

How do I know this?

STIC is a very active member of the New York Association on Independent Living (NYAIL). I serve on the Executive Committee and am its Public Policy Committee Chairperson. When the new Governor introduced his 2007-08 Executive Budget, we had, as we expected, some problems with it. One of his proposals, though, was especially bad. He wanted to eliminate Personal Care Level I, a program that provides vital housekeeping, shopping and other nonmedical and non-hands-on services to people with disabilities. Without these services, many people with limited stamina or strength would be unclean, undernourished and unsafe—conditions that cause public health authorities to put people into nursing homes or other segregated settings.

Fortunately, the new Governor kept his promise to welcome input from advocates and people with disabilities and to promote an agenda that would reverse the institutional

bias in NY’s Medicaid and long-term care programs.

Through NYAIL, we immediately sought meetings with key staff from the Governor’s office, as well as the Division of Budget and the Department of Health. We expressed our serious concerns with the PCA cut and urged the Governor to restore the funds during the 21-day amendment period. They asked us for data on how many people would be affected, and they wanted personal stories describing the real-life impact the cut would have on consumers. We provided the requested information and anxiously waited to see if our efforts bore fruit.

Well, on February 21, the Governor’s 21-day budget amendments were issued. The PCA Level I cut was rescinded. He and his staff listened! For the first time in my 24 years at STIC, we were successful in advocating and getting a change during the amendment period.

Does this mean that we will always agree with the new administration on every issue? Of course not. But what it does mean is that this administration has kept one very big promise, to involve people with disabilities at the highest level of policy discussions. Not only was the administration responsive to our outreach efforts, but they’ve actively sought our opinions as well.

Where there is dialog there is hope. I for one welcome this breath of fresh air and look forward to working with the new administration.

Torture is Not Treatment

by Ken Dibble

We’ve been covering the State Education Department (SED)’s efforts to produce regulations for the use of “aversive treatments” on children with disabilities since last fall. Aversives are things that make life unpleasant for people in an effort to get them to stop doing something. Interestingly enough, this is also the definition of “punishment” (in both everyday and psychological terms), but the people who favor this sort of thing insist that it’s not punishment, and in fact the SED regulations forbid the use of aversives for purposes of “punishment”. In reality this is a word game played by the squeamish and the morally compromised. Punishment, intended to get a person to change their behavior, is sometimes justified and effective. Torture, intended to get a person to change their behavior, no matter what it’s called, is always wrong.

SED’s first shot at these regulations was severely flawed. It allowed school districts to do just about anything to a kid in the name of aversive “treatment” if they could convince a statewide panel to approve it.

Advocates organized and bombarded SED with criticism in response. SED released a very-much-improved new draft that prohibited use of aversives on preschool children, significantly restricted the types of actions that could be taken against older children, and probably most significantly, declared that this practice is going to come to an end in New York State in three years (with kids already approved “grandfathered in” until they leave school). However, the new draft did not forbid the use of electric shock or noxious chemicals as aversive “treatment” despite fierce demands from many advocates, and it stepped back from granting final approval authority for such “treatments” to the statewide panel; instead, the panel’s role became advisory, with the final decision up to the local CSE.

Advocates mounted another push to get the remaining forms of torture (as recognized by various international bodies) outlawed, but were unsuccessful. The final regulations are virtually unchanged from the second draft.

Unquestionably in this case, organized disability advocates achieved a significant victory. Also unquestionably, SED’s final response remained unconscionable.

We are left asking why it is that people can get away with torturing children with disabilities in ways that they wouldn’t even consider trying on nondisabled kids. The reasons fall into three groups:

First, there is the prevailing notion that disability is abnormal (even though it normally occurs among 15% to 20% of humans in every generation), and that the most extreme actions are acceptable when one is trying to stamp out abnormality. Related to this belief is the notion that disability is disease that justifies and requires medical treatment. This is why otherwise sane, kind and gentle people feel it’s okay to cause children with disabilities extreme pain via electric shock and caustic chemicals. After all, we don’t have a problem cutting people open to cure other diseases, and that hurts like hell. So why not go ahead and deliberately cause pain to cure children of their behavioral disabilities? These people look at nondisabled kids behaving badly and see “excess energy” at one end of the spectrum and “delinquency” at the other. No matter how badly those kids behave, nobody seriously considers torturing them to make them stop. But they look at children with disabilities behaving badly and they see “behavioral disorder” at one end and “profound neurological impairment” at the other. Bad behavior comes from the same widely varying causes in all children, but some children with disabilities, being unable to communicate the way nondisabled children do, also use aggressive or self-injurious behavior to show that they don’t like the place they’re in, the people they’re with, and/or what they’re being made to do. And since the typical child with these kinds of disabilities is usually made to spend much of his or her time around other kids who are behaving strangely, while being forced to do things that are meaningless and unlikely to help them prepare for the future, by people who don’t respect them and have no trouble showing it, they’ve got a much more legitimate gripe than the typical nondisabled kid who doesn’t want to do his homework or something.

Second, there’s desperation. Causing a child pain to make her stop doing something you don’t like is the universal sign of a desperate caregiver at the end of his/her rope. It’s natural and it happens a lot. That doesn’t make it right. And most people who lash out at kids in that kind of desperation regret it afterwards. What SED is doing, though, is legitimizing desperate acts and letting paid professionals, who have far more resources at hand to help them than the typical overstressed aggravated parent, commit them without ever having to feel guilty about it. SED acknowledges, along with the rest of the civilized behavioral science world, that there is no reliable evidence that aversives work any better at stopping self-injurious or aggressive behavior than other forms of intervention (including punishment when it’s warranted) that don’t involve torture. So why are they permitting it, even if only for three more years?

Because of the third reason: the endless readiness of government officials to compromise with wrongdoers and declare victory. The impulse that led SED to continue to permit partial electrocution of children with disabilities is the same impulse that kept Bill Clinton from doing anything about the genocide in Rwanda, the same impulse that keeps George W. Bush from doing anything about the genocide in Darfur today. That is, it’s just too hard to definitively stop people who have money and power behind them from doing things that are wrong, especially when the people who are being wronged are not like us.

March 2007


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Great Expectorations:
Spitzer’s First Budget

by Adam Cybulski and Ken Dibble

Governor Spitzer’s first executive budget contains many items to be celebrated by the disability community. However, even in times of progress we must be vigilant. As good as Spitzer’s budget is, there are still some aspects that will be tremendously counterproductive to our goals of integrated living and the end of the institutional bias, goals that Spitzer claims to share.

The Governor’s budget begins to shift the funding given to nursing homes for workforce recruitment over to Certified Home Healthcare Agencies (CHHAs) and Personal Care Assistance (PCA) providers. This additional funding represents a promising turn in funding of community-based services. Many people with disabilities have been continuously frustrated by the quality of service they receive from many CHHAs. Care providers typically have low employee commitment and high turnover rates. This is the result of low wages and a lack of health coverage for most attendants. This must change. Providing attendants with health insurance is the first step in improving the level of care people with disabilities receive in their homes. Not only will it improve the morale and commitment of the workers, it will improve the confidence of the consumers in the service they are being provided, as many see attendants who do not have access to basic health care as a risk to their own health.

Spitzer wants to increase availability of housing options for people with mental and developmental disabilities. On the mental health side, these options are clearly community-based, and much-needed. On the OMRDD side, there’s an unfortunate emphasis on segregated congregate facilities, including, once again, an effort to create more group “homes” for children. And OMRDD continues to falsely claim that its hundreds of small segregated congregate living facilities are not “institutional”. To be fair, there are also increased funds to provide in-home supports for families with children with developmental disabilities, emphasizing behavioral supports and respite services, which has been a major unaddressed need. But these funds need to be increased to the point where no family has to consider sending their children to a group “home”, and all efforts to develop such “homes” should be stopped.

The new Governor also wants to start new programs to address the needs of people with mental illness in prisons and to prevent the use of solitary confinement with these prisoners. This is a positive move in the direction of undoing Pataki’s veto of last year’s “SHU bill”.

Spitzer wants to raise the income eligibility limits for the Child Health Plus (CHP) program. This program serves many children with disabilities who are not eligible for other state programs. The proposal clearly indicates Spitzer’s desire to move toward full health care coverage for all New Yorkers. President Bush’s latest Medicaid budget proposals would severely penalize such a move, but it’s unlikely that Bush is going to get any significant Medicaid cuts past the Democrat-controlled House of Representatives. Our biggest concern has already been turned into a great victory. The original version of the budget eliminated funding for Level I PCA care. Level I PCAs are for individuals who don’t need intensive personal care, but who still need assistance with general homemaking. Level I care typically provides assistance with things such as cooking, cleaning, and laundry. Without such services many individuals would be unable to maintain independent living. The Governor fixed this grievous error during the amendment period of the budget, as the result of determined advocacy led by STIC. This is an amazing victory, as none of our concerns have ever been fixed during the amendment period before. The Governor deserves credit for listening and responding rationally.

Other serious concerns remain.

Spitzer is going ahead with the forced enrollment of many people with disabilities into Medicaid managed care. As we pointed out last issue, nearly all of these people can get exemptions from mandated enrollment, but the state is forcing them to apply for those exemptions individually, and not making a strong effort to let them know they can do so. This will mean that thousands of people will be placed in this program who don’t need to be there, don’t know they can get out, and for whom it will mean reduced service quality. We had hoped that the Spitzer Administration, so concerned with ethical government in other areas, would back away from this deliberate attempt to mislead people with intellectual, cognitive and mental disabilities.

Governor Spitzer has included $10 million to continue Governor Pataki’s Health Care Reform Working Group. The group had been developing a Medicaid managed-care “mega-waiver” that would encompass many long-term care services, including state-plan personal assistance, and the Long Term Home Health Care, TBI, and Nursing Facility Transition and Diversion (NFTD) waivers. The waiver was promoted as a way to garner federal funds for additional long-term care services now available only on a limited basis with state-only funding. Unfortunately, such waivers have many programmatic weaknesses. The central one is “cost neutrality” which, if wrongly handled, could either reduce the amount of services provided as the number of people to be served increases, or cap the number of people served, with ensuing waiting lists. Across the US, managed care programs have poorly served people with disabilities. Most states that have enacted this kind of waiver have decimated community-based services.

In early March a staff member working on this “Medicaid restructuring initiative” stated that DOH is “taking a step back” from the mega-waiver. While the Spitzer Administration intends to pursue “comprehensive restructuring”, it no longer believes that the mega-waiver is “the best vehicle” for doing so. Advocates greeted this with enthusiasm, as more evidence that the administration is listening and responding rationally to the disability community.

Perhaps now, some of this $10 million can be spent elsewhere. For example, Spitzer could increase funding for Centers for Independent Living (CILs) like STIC, which many feel is more than owed, due to the amount of money CILs save the state through their efforts at deinstitutionalization. Another good place for the money would be the Access to Home program, which assists people with disabilities with low and moderate incomes who have no other available funding source to make their homes accessible and thus stay out of institutions. Both of these programs would receive level funding in Spitzer’s budget.

As we’ve reported previously, the federal Centers for Medicare and Medicaid Services (CMS) suddenly reinterpreted Medicaid rules regarding “spousal refusal”. Spitzer’s approach to this confusing issue is, itself, confusing. What it boils down to is, CMS would severely reduce the amount of income a married couple can have and remain eligible for low-cost Medicaid-funded in-home supports for a disabled spouse, while allowing that same couple to keep much more of their income if the spouse with a disability is placed in a high-cost Medicaid-funded nursing home. This is exactly what “institutional bias” means. At the moment, CMS is raising this issue in the context of the new NFTD waiver, thereby holding up rollout of that program. But they could try to apply it to all of the state’s Medicaid-funded community-based services. There’s a “placeholder” in the Governor’s budget proposal for this issue, which means he hasn’t exactly decided what he wants to do about it. He could do an end-run around it by raising the state’s income-eligibility level for the NFTD waiver. He also should demand that CMS furnish written proof of its statutory authority to reinterpret the Medicaid rules in this way; we suspect they can’t. Spitzer has also urged counties to make “recoveries” from couples who have “abused” the spousal refusal option. Such abuse is exceedingly rare, and his action may lead county governments to harass the vast majority of people who have exercised this option legally.

Spitzer also wants to tinker with the state’s prescription drug programs in ways that are somewhat unclear. As Pataki had proposed, Spitzer wants to require as many people as possible who use the state’s Elderly Pharmaceutical Insurance Coverage (EPIC) program to enroll in the Medicare Part D prescription program; EPIC would then pay the Part D premiums for them. Also like Pataki, Spitzer wants to allow cost to be a factor when deciding what drugs will be on the state’s Preferred Drug List (PDL), and he wants to use the PDL not only for Medicaid but for EPIC. Spitzer insists that he will “hold harmless” the people in the EPIC program; they won’t lose any drug coverage. Some advocates have raised questions about how this will be handled when neither a Part D plan nor the PDL covers drugs an EPIC participant needs. We’ve heard from some quarters that Spitzer’s DOH doesn’t plan to enforce the law passed last year that took away the prescribing physician’s last word on what drugs a person subject to the PDL can get. That would be nice but if that is Spitzer’s intention then he should seek repeal of that law.

While we do have serious concerns with some aspects of the new Governor’s budget proposal, he has taken some significant steps in the direction of reversing New York’s institutional bias, and these steps are worthy of praise.

There is some opposition in the Legislature, and quite a bit more amongst institutional lobbyists and health worker unions, to Spitzer’s proposals to retarget Medicaid funds based on the twin principles of reducing institutional bias and maximizing benefit to health care recipients. However, early projections from all parties were for an on-time budget, which doesn’t leave much room for arguing. We don’t know whether the new Governor’s proposals will survive the annual budget battle intact but we’ll let you know what happens.

Legislative Briefs

Timothy’s Law Signed

In one of his last acts as Governor, George Pataki signed “Timothy’s Law”. This law requires most employer-provided health insurance plans to provide coverage for most mental illnesses that is equal in quantity and duration to that provided for physical illnesses. Notably, the law excludes post-traumatic stress syndrome, one of the most common forms of severe mental illness, from coverage, and it exempts very small businesses from mandatory compliance, although it requires the state to subsidize any additional costs should a small business wish to comply.

New Autism Opportunities

In December President Bush signed the federal Combatting Autism Act into law. This law authorizes “activities” by the federal government to research causes and prevention of autism and to educate professionals in how to diagnose and respond to it. However, no funding is provided for these “activities”.

On January 1, 2007, a new law took effect in New York State. This law requires medical insurance plans to stop excluding children with autism from coverage for autism-specific diagnosis and treatment.

Meet Your New Barons

We at AccessAbility have described New York’s fragmented disability service “system” as a group of independent “fiefdoms”, each headed by a “Baron” who has virtually unlimited authority to do what s/he wants, without any de facto requirement to answer to a central authority or implement a unified policy.

With the arrival of a new Governor, many of former Governor Pataki’s bureaucratic “Barons” are being replaced by new appointees. There are some early indications that the new King may reign in some of the Barons, at least to the extent of setting a unified policy direction. Here’s what we know about the ones most relevant to people with disabilities.

Office of Addiction and Substance Abuse Services (OASAS)
Karen Carpenter-Palumbo

Carpenter-Palumbo has most recently served as Capital Region Vice President of the American Cancer Society. She has also been a health insurance administrator, director of the OMH office of Children and Families, and an aide to Governor Cuomo. Several STICsters had occasion to work with her in the latter position, where over time she became an effective, if not particularly friendly, transmitter of communications between Cuomo and the disability community.

Office for Aging (OFA)
Michael J. Burgess

Although employed by the Office for Aging early in his career, since then Burgess has focused on not-for-profit social service and advocacy. Most recently, he was Executive Director of the New York State Alliance for Retired Americans, where he pioneered efforts to get senior citizen groups to recognize common interests, and join hands, with disability rights activists. Prior to that, he was the Executive Director of the New York Statewide Senior Action Council. Burgess has forthrightly promoted integrated community-based services for elderly citizens for many years.

Disability activists are thrilled with this appointment.

State Education Department (SED)

This department oversees VESID and special education services.

There’s no change in Commissioners here. In New York, the Commissioner of Education is appointed by the Legislature without involvement by the Governor, and this Commissioner is overseen by the Board of Regents, whose members are elected by the Legislature. However, Governor Spitzer does have a “point man” for education in his administration—Deputy Secretary for Education Manuel Rivera.

Rivera was formerly the Superintendent of the Rochester City School District. He has been a public school teacher and an administrator at the for-profit charter school company, Edison Schools, Inc. Disability activists in Rochester say he has a good track record on special education issues.

Department of Health (DOH)
Richard F. Daines, MD

Dr. Daines, a Republican, has been a hospital administrator for many years, most recently the chief executive at St. Lukes-Roosevelt Hospital Center in Manhattan. DOH was perhaps the most dysfunctional and corrupt of Pataki’s state agencies. Charged with carrying out Governor Spitzer’s new “patient-centered and community-based” approach to public funding and administration for health services, Daines faces a formidable job in rooting out provider-oriented bureaucrats, including former nursing home lobbyists, and beefing up the agency’s oversight functions.

He has made a good beginning, in the eyes of disability activists, by implementing Spitzer’s plan to consolidate long-term care programs into a single office within the department, and by ensuring that his top administrators listen, and respond rationally, to input from the disability community. Especially encouraging was the news that wayward county governments that have refused to offer a full spectrum of community-based long-term care services will finally be required to do so, as mandated in federal and state law.

Office of Mental Health (OMH)
Michael Hogan

Hogan has worked in or run the public mental health systems of three states, most recently Ohio. Over the course of his career, he has compiled an impressive track record of downsizing institutions and increasing community-based services. He has a reputation for supporting a “recovery based” service model, which emphasizes ongoing support for people in their homes, social settings, and workplaces, and “research-validated service methods”, which some disability activists regard as code for an undesirable focus on medication.

Overall, disability activists in New York greeted this appointment with enthusiasm.

Office of Mental Retardation and Developmental Disabilities (OMRDD)
Diana Jones Ritter

Ritter has had a long career in the fiscal aspects of state government. She worked at OMRDD in the early 1990s, where her job focused on the area of regulatory compliance. After that she did a couple of years in the Department of Health. Since then she’s been with the NYS Comptroller’s Office.

Historically the role of the regulatory compliance section of OMRDD has been to foster excessive paperwork and place “safety” ahead of civil rights in an effort to ensure that administrative behinds are covered. The needs and concerns of this section have been allowed to control the way that OMRDD actually operates, regardless of all the pretty language the agency spews out about “choice” and “integration”.

Disability activists fear that an administrator whose primary experience is with fiscal matters, and whose only experience in OMRDD is in regulatory compliance, may not be the right person to fulfill either Governor Spitzer’s stated aim of streamlining administrative systems, or the disability community’s dream of an OMRDD where maximizing enjoyment of civil rights, civil liberties, self-direction, and community integration drives everything else. A change in direction is absolutely necessary in NY’s developmental disabilities service system. We hope Ritter is up to the task.

New Office for the Blind?

One of Governor Spitzer’s more interesting, and troubling, proposals is to establish a new “Office for the Blind” in the Executive Branch.

The new office would have an Executive Director (not a Commissioner), and an advisory board, the majority of whose members would be blind. The office would be charged with investigating existing services and recommending changes, including ways to better coordinate various programs for blind and visually impaired people, and to resolve regulatory differences between them. The advisory board would be required to consider the “advisability of establishing a State Home for Aged or Needy Blind People”. The state’s Commission for the Blind and Visually Handicapped (CBVH) would be dismantled and its duties moved to this new office. The office would take over administration of the state’s “Blind Vendors” program, and oversee the state’s residential school for blind children at Batavia. This new office would also take over running the state’s Equipment Loan Fund for people with all disabilities.

This proposal took disability advocates by surprise. Some background is necessary to understand what may be going on here.

Governor Spitzer’s running mate, new Lieutenant Governor David Paterson, is legally blind. It may be that this proposal originated with him.

Disability advocates have vigorously criticized CBVH for well over a decade. That agency, whose primary responsibility is to provide vocational rehabilitation services to people with visual disabilities, has refused all entreaties to join the rest of the VR establishment in moving away from sheltered employment and toward integrated supported work. It continues to make large numbers of referrals to sheltered workshops. CBVH has also been criticized for its assistive technology program, which provides computers to blind workers. CBVH contracts with a single, out-of-state provider to furnish the computers. The computers are usually 2-3 years out-of-date and cost between 150% to 200% of market value. They also frequently don’t work properly out of the box and consultants must be called in to reconfigure them. And CBVH’s administration has been secretive about its finances, refusing to provide details on how it spends its share of federal Independent Living funds to the state’s Independent Living Council, which has a federal statutory mandate to oversee those funds. For reasons unknown, CBVH has successfully resisted all efforts by advocates and influential state legislators to change how it operates. It may be that the only way to change this system is to dismantle it and rebuild it with a completely new administration.

The proposal has run into opposition from some blind activists. This may stem from the endless feud between two large organizations of blind people—the National Federation of the Blind (NFB) and the American Council of the Blind (ACB). NFB’s leadership is composed of blind people; ACB’s includes nondisabled operators of programs and services for blind people. Apparently the Spitzer Administration discussed this idea with NFB, but not with ACB, before proposing it, and the ACB people are now against it.

Cross-disability advocates viewed the proposal with hopeful caution. It would be a very good thing to put the state’s vocational rehabilitation services for blind people on a path toward integrated employment services and efficient, effective assistive technology programs. However, it’s not clear that integration is a primary goal of this proposal.

The notion that there is a need for a “home” for elderly or low-income blind people is offensive to disability advocates who are trying to end the state’s institutional bias in long-term care services, and seems to be at odds with Spitzer’s stated intention to do the same thing.

The proposal says, “Establish one or more schools for the training of blind persons, and equip and maintain such schools, and pay for tuition, lodging, support...” This clearly refers to segregated residential schools. New York has one such school now, at Batavia. The federal Individuals with Disabilities Education Act and New York State education law have, for decades, required local school districts to educate blind children effectively. There is no need or rational justification for the existence of the Batavia school in modern times, let alone for the establishment of more such places. Much of the language of this proposal seems old-fashioned; it may be that it was rather hastily lifted from existing law, and the intent may simply have been to transfer oversight of the Batavia school to the new office. Still, this is disturbing.

On a broader level, the idea of establishing yet another separate office to deal with a particular disability is troubling. The concerns and experiences that people with all disabilities have in common far outweigh their differences. Historically, government has used separate agencies for different disabilities to “divide and conquer” the disability rights movement. We don’t think this is what Spitzer intends, but it may be that he and his people haven’t thought this through very carefully. The separate and conflicting eligibility requirements, regulations, and administrations of these different agencies are just the kind of waste that Spitzer has vowed to remove in other areas of state government.

The proposal does recognize the regulatory snafu that enfolds disability services; one of the new office’s responsibilities is to find ways to untangle the mess as it affects blind people. But that’s not going nearly far enough. All of the state’s disability programs and services need to be brought under a single administration; all of those conflicting, redundant, hampering regulations need to be combined and simplified, and the goal of every disability-related action the state takes must be to further community integration and consumer control. If the new Office for the Blind is a very small first step toward that goal, that would be a good thing. The inclusion of the Equipment Loan program for all disabilities in the new office seems to suggest that something like that may be in the offing. But we’re not sure it really is, and if it’s not, then it would be better for Spitzer to leave it alone. New offices, once created, assume a life, and a struggle for survival, of their own. A new one created for the wrong reasons will be just as hard to dismantle as the old ones.

NYAIL 2007 Disability Priority Agenda


The New York Association on Independent Living (NYAIL) represents 30 Centers for Independent Living (CILs) across New York. NYAIL is dedicated to improving the quality of life and safeguarding the civil rights of people with disabilities of all ages. NYAIL opposes all forms of systemic segregation bias in government policies, practices, procedures and funding mechanisms. NYAIL seeks to promote full community integration to enable all people with disabilities to live active, independent lives in their communities.

NYAIL’s member CILs also oppose all forms of segregation and discrimination against people with disabilities. The CILs, which are controlled and primarily staffed by people with disabilities, provide a variety of services, such as peer counseling, independent living skills training, and assistance with medical needs, housing, education, employment and other necessary services that empower people with disabilities to live independently in their communities.

NYAIL’s 2007 Disability Priority Agenda reflects these principles and seeks to further these goals.
Budget Priorities
1. Center for Independent Living Funding

NYAIL is pleased that Centers for Independent Living (CIL) received a minimal increase of $1 million in state funding last year, after a four-year period of level or decreased funding. This increase augmented the ability for centers to address existing shortfalls, but funding hasn ot kept pace with the dramatic increase in demand for services over the same period. This year, CILs need a $5 million increase to continue providing services that allow people of all ages and disabilities to:

  • Develop skills to live independently
  • Earn degrees, find jobs, and become self-sufficient
  • Reduce their reliance on state and federal benefit programs
  • Stay out of institutions and participate in community life

A critical part of the work of CILs is assisting people with disabilities to transition from, or avoid unwanted placement in, nursing homes or other institutions. A recent study of transition and diversion projects at six CILs by the NYS Developmental Disabilities Planning Council demonstrated an average savings of $63,800 per year in Medicaid costs for each person transitioned into the community and $83,000 in projected savings per year in Medicaid costs for each person diverted from nursing facility admission. The total savings to the state for the 499 people transitioned or diverted during 2003-2006 was nearly $34 million.

CILs are an essential part of the solution to successful restructuring of the long-term care system away from costly institutions to community-based services and supports.

Top Priority:

  • Increase funding for CILs by an additional $5 million this year.

2. Health Care

Under the 1999 US Supreme Court Olmstead decision, people with disabilities are entitled to receive the services and supports they need to live freely in the community and avoid unwanted placement in nursing homes and other institutions. However, the impact of the Olmstead decision has not been fully realized in New York in terms of facilitating the transition to community-based health care alternatives. Problems with obtaining necessary health care services and supports remain a major barrier to full independence and integration for New Yorkers with disabilities. While the State is focused on reducing the costs of Medicaid and other programs, it is crucial that people with disabilities have access to the health care services and supports they need and choose.

Top Priorities:

  • Oppose proposals negatively affecting eligibility, benefits, coverage, and/or access to services for Medicaid beneficiaries.
  • Eliminate the systemic bias that leads to unwanted placement in nursing homes and other institutions.

Cuts or reductions in eligibility for Medicaid beneficiaries put people with disabilities at increased risk of unwanted placement in a nursing home and/or poor medical outcomes. As the Legislature considers Medicaid and long-term care reforms, it must make community integration through the provision of vital and accessible services to people with disabilities of all ages its top priority.

  • Promote comprehensive long-term care reform that will not reduce coverage or access to services.

New York State’s long-term care “system” is broken. A restructured system must allow people with disabilities of all ages to choose to live and receive services in the community. It must be person-centered and consumer-controlled. NY must offer a spectrum of services and supports to meet the needs and desires of individuals in all areas of the state. Understandable, complete and unbiased information must be available to people considering or in need of long term care services.

  • Provide rental/housing subsidies to participants in the new Nursing Facility Transition and Diversion (NFTD) Medicaid waiver program.

NY will implement the new NFTD waiver this year, which will help 5,000 seniors and people with disabilities live in their communities and avoid or end unwanted nursing home placement. In order to make this a reality, finding affordable, accessible, and integrated housing is critical. Part of the savings to the State from avoiding high-cost nursing home placements should be used to offset the cost of housing subsidies for people transitioned and diverted by the NFTD waiver.

  • Expand coverage under New York’s Elderly Pharmaceutical Insurance Coverage (EPIC) program to people with disabilities under age 65.

Many people with disabilities live on marginal incomes that do not qualify them for Medicaid. Some are faced with the choice of either buying medication, paying the rent or buying food. Those who worked long enough to qualify for Social Security Disability Insurance (SSDI) are eligible for the Medicare Part D prescription drug program, but the significant cost sharing in that program makes it unaffordable for many. EPIC expansion will help people with disabilities stay healthy and avoid costly and unwanted institutionalization.

  • Extend Medicaid wrap-around coverage for people dually eligible for Medicaid and Medicare who are unable to obtain prescription drugs due to Medicare Part D regulations.

A safety net is necessary to fill in the gaps in Part D coverage. The many problems with Part D should not fall on the backs of New York’s most vulnerable citizens—the elderly and people with disabilities—who need prescription drugs to survive.

  • Increase access to comprehensive health care coverage for all New Yorkers with disabilities.

As a result of federal Medicaid cuts under the Deficit Reduction Act of 2006, the Part D rollout, provider “right-sizing” efforts and more, people with severe disabilities will face a sudden and unprecedented level of erosion in their health services. Many may be forced to pay more for their care, have greater difficulty accessing their care, or forego care altogether. State lawmakers must oppose budget proposals that would cut off or restrict access to health care. Publicly-funded programs should further the community integration of people with disabilities. People with disabilities can’t remain stable and participate in community life if they can’t access appropriate publicly-funded health services.

3. Housing

The availability of accessible, affordable and integrated housing opportunities for people with disabilities is critical to sustaining fully independent lives in their communities. The Access to Home program has provided some assistance for home modifications, but more is needed for NY to fully address the housing crisis facing people with disabilities.

Top Priority:

  • Create a housing trust fund for people with disabilities.

A housing trust fund would provide people with disabilities with very low to moderate incomes with grants, loans and other housing supports and services, including home modifications.
Public Policy Priorities
1. Civil Rights

The Americans with Disabilities Act (ADA) of 1990 and Section 504 of the Rehabilitation Act of 1973 each provide comprehensive protection for the civil rights of people with disabilities under federal law. Efforts to weaken the scope of the ADA in particular, and inconsistencies with the provisions of NYS Human Rights Law, leave New Yorkers with disabilities facing confusion and uncertainty about the scope of their civil rights protections. NY State must do its part to ensure these critical protections are incorporated into state law and that the State’s immunity to lawsuits under the ADA and Section 504 is waived.

Top Priorities:

  • Incorporate Titles II and III of ADA into NYS Human Rights Law.
  • Waive the State’s sovereign immunity to claims under the ADA and Section 504.

2. Housing

According to a recent study, Priced Out in 2004, by the Technical Assistance Collaborative and the Consortium for Citizens with Disabilities, no person receiving Supplemental Security Income (SSI) in New York State can afford an efficiency or one bedroom apartment. Recipients would have to pay over 118% of their SSI benefits for an efficiency apartment, or 137% of those benefits for a one bedroom apartment. The monthly SSI payment to a person living alone in New York State is currently $710. Communities are falling behind in addressing the growing need for affordable, accessible, and integrated housing. Decent affordable housing for people with disabilities should not be dependent upon yearly state budget decisions. Instead, the State should ensure that people with disabilities have more opportunities to obtain affordable, accessible, and integrated housing.

Top Priorities:

  • Incorporate the housing provisions of Section 504 of the Rehabilitation Act into state law.

Housing developers often fail to comply with Section 504’s requirement to set aside a certain percentage of accessible units for people with disabilities when federal dollars are used for construction. By including these requirements in state law, the Department of Housing and Community Renewal will be fully empowered to enforce these requirements and ensure that the State is in compliance with federal standards.

  • Establish standards for “visitability” in state law to require all newly constructed single-family houses, townhouses and ground-floor units of duplexes and triplexes built with public funds to be made accessible.

“Visitability” means changing home construction practices so that new homes offer a few specific features that make the home easier for people with a mobility impairment to live in and visit. It is unacceptable that new homes continue to be built with gross barriers, given the ease of building basic access into the majority of new homes and the harsh effects major barriers have on people’s lives, including physically unsafe conditions, social isolation, and unwanted institutionalization.

3. Education

Top Priority:
  • Place the burden of proof on school districts in due process hearings challenging the IEP or other aspect of a student’s special education program.

The US Supreme Court, in 2005, decided in Schaffer v Weast that, in the absence of state law to the contrary, the burden of proof in appeals challenging a special education student’s Individualized Education Plan is with the party seeking relief. In most cases, the party seeking relief is the child’s parents, not the school district. Parents typically have fewer legal resources available to them and less access to information about their child’s education program than school district officials. It had been NY’s long-standing policy, prior to the Schaffer decision, that school districts bear the burden of proof in such cases.

4. Election Reform

With the passage of the federal Help America Vote Act (HAVA) in 2002, voters with disabilities in New York State believed that they would finally have full and equal access to the electoral process. Unfortunately, despite concerted efforts by disability rights advocates, NY has been the last state to implement HAVA’s requirements and ensure that persons with disabilities can vote independently, privately and securely, and the State is currently being sued by the federal government as a result. People with disabilities must be afforded this basic right as citizens to vote along with their families, friends, and neighbors. Barriers to this right that remain in NYS Election Law must be removed.

Top Priority:

  • Eliminate provisions in Section 4-104 (1-a) of the NYS Election Law allowing waiver of polling place accessibility requirements.

5. Transportation

The limited availability of accessible transportation services is a major barrier faced by individuals with disabilities throughout the state, often leading to unemployment, the inability to access medical care, and isolation from friends, family, and full community participation.

Top Priority:

  • Require transportation providers, such as taxis, limousines and hotel shuttles, to purchase accessible vehicles or otherwise ensure that they have the capacity to serve people with disabilities.

6. Mental Health

We applaud the passage last year in both houses of a bill to ban the use of solitary confinement in special housing units for people with psychiatric disabilities. Unfortunately, the bill was vetoed by Governor Pataki.

Psychiatric disabilities may interfere with an inmate’s ability to conform to prison rules. Inmates who violate prison rules are frequently segregated for months or even years in disciplinary lockdown, sometimes known as special housing units (SHUs). Confined for 23 hours a day, these prisoners face severe social isolation, extreme boredom and idleness and increased risk of suicide. Placing people with significant psychiatric disabilities in solitary confinement is inhumane and wrong and should be banned.

Top Priority:

  • Ban the use of solitary confinement in special housing units (SHUs) of people with psychiatric disabilities in state correctional facilities.


Barrier-Free Gardening

by Danny Cullen

“Disabilities are transformed into abilities when persons who are disabled have the opportunity to work with plants, flowers, vegetables, trees, and shrubs.” — The Enabling Garden; National Council for Therapy and Rehabilitation through Horticulture

It’s that time of year again, the growing season is just around the corner. But if you are in a wheelchair or struggle with back pain, bad knees, or arthritis, gardening may seem impossible.

Don’t give up on this fun hobby just because your body doesn’t work as well as it used to. Change how you do it. An accessible garden eliminates the physical barriers often associated with gardening and is a great place to relax and relieve stress.

For those of us who use wheelchairs to get around, the key is bringing the soil and plants to your level and within your reach. Containers, raised beds, and vertical trellises all accomplish this objective.

Raised beds planted in high boxes—24” to 30” usually works well—put flowers and plants within easy reach. This method is more costly but offers greater accessibility, and is more efficient and productive than scattered sites.

Container gardening may be the answer for gardeners who have limited space or budgets. Since virtually anything that holds soil can be used for a container, you don’t have to spend a lot to get your garden off the ground. You could use anything from well-drained 5-gallon buckets, olive oil cans, whiskey barrels, to pots made of wood, clay, or plastic. Recycled containers like stacked tires, old washtubs or children’s wagons, even an old barbecue grill can be used. These are more practical approaches when ground space is limited or non-existent. It’s best to start small. A 5-gallon bucket will hold a single, accessible tomato plant.

For many vegetables and larger flowers, the container should hold 5 gallons of soil, while many herbs and smaller flowers do well in 3-quart containers. Containers are especially good because they can be moved around and even started indoors before the weather is warm outside.

Window boxes work well for the individual who does not have an accessible outside area in which to work. Annuals, herbs, and salad greens are popular plants for window boxes.

Hanging baskets normally are inaccessible to gardeners with physical disabilities, but a pulley system easily solves that problem.

For people who are visually impaired, design a walkway, which should provide direct routes through the garden and have clearly defined beginnings and ends. Include wind chimes or other objects you can hear to orient yourself in the garden. Path edges should be distinctly differentiated in texture from the garden beds, such as grass, bricks, or mulched beds. This way you can easily detect the edges. Avoid raised edging, which can create a tripping hazard.

Lastly, look for specialized tools and equipment that can take maximum advantage of your abilities. Look for ergonomically designed tools that allow you to work comfortably. Cultivating tools are available that are easy to control, easy to grip, and have cushioned handles. Specially adapted tools can also be purchased or made with little expense.

For further reading on barrier-free gardening, check out Janeen Adil’s Accessible Gardening for People with Disabilities. It is a comprehensive guide to gardening methods, tools and plants. It covers everything from building basics to kid-friendly planting activities (the author’s daughter Rachel was born with spina bifida and was the inspiration). Or look at Gene Rothert’s The Enabling Garden, which features tips on tools, techniques and creating barrier-free gardens and offers an extensive list of national resources.

If you would like more detailed information on how to construct a raised bed, make or purchase adapted tools, or any other information in this article, please contact Danny Cullen here at STIC, at 724-2111 ext.325.

Happy planting!

Celebrate the Young Child

by Marcella Hutsko

The winter came late to us this year in Broome and surrounding counties. But when winter came it came with a vengeance, cold temperatures and snowy days.

To me winter is all gone, as I sit at my computer staring out my office window at all twenty some inches of snow. I am thinking of April, a week in April—the 22nd. through the 28th. to be exact. This is the Week of the Young Child. It is sponsored by the National Association for the Education of Young Children (NAEYC), the world’s largest early childhood association, with nearly 100,000 members and a network of over 300 local, state, and regional affiliates.

The purpose of the Week of the Young Child is to focus public attention on the needs of young children and their families and to recognize the early childhood programs and services that meet those needs.

NAEYC designates the Week of the Young Child dates and a theme; this year’s theme is “Building Better Futures for All Children”. NAEYC first established the Week of the Young Child in 1971, recognizing that the early childhood years (birth through age 8) lay the foundation for children’s success in school and later life. The Week of the Young Child is a time to plan how we—as citizens of a community, of a state, and a nation—will better meet the needs of all young children and their families.

NAEYC designates the dates and theme, but events are planned by regional, state, and local NAEYC affiliates (the local chapter is the Broome Association for the Education of Young Children), by individual early childhood programs like STIC’s ECDC, and by community organizations providing services to young children and families.

One of the events that will celebrate the young child will be an art exhibit that young children with and without disabilities created. The artwork will be on the wall in STIC’s fifth floor hallway from April 18 until April 28. Keep an eye out for other events; watch your local newspaper.

One of the many ways to spend time with and celebrate children is reading together. Reading out loud to a newborn infant stimulates brain growth and language. Looking at a picture book with a toddler (board book, little ones learn through taste), he or she will develop listening skills and enjoy sitting close and hearing your voice, and later as a child grows a fun story shared with your preschooler can be relaxing for both adult and child at the end of a busy day.

Short books are a good choice and sometimes better to read than longer ones. A child’s developmental level as well as how old they are will dictate how long or short the book is. Turn to the child for cues when you read a story and don’t worry if they only sit for five minutes; a lot of learning and quality time has transpired. Young children develop long-term skills from all the times you read to them and tell stories and sing songs or play “This Little Piggy” while changing a diaper.

No matter how old or young you are there are so many funny, beautiful creative children’s books to explore. Some good ones to check out are: No Jumping on the Bed by Ted Arnold; The Kiss that Missed by David Melling; How Are You Peeling? Foods with Moods by Saxton Freymann and Joost Elffers; Ruby in Her Own Time by Jonathan Emmett and Rebecca Harry; Skippyjon Jones in the Dog House by Judy Schachner; and Bear Snores On by Karma Wilson and Jane Chapman.

Inexpensive options are out there, you do not need to buy books. Go to your local public library and pick a few books out and borrow them. Another way to share books inexpensively is to have a book exchange with friends or neighbors who have children.

Every day is an opportunity for those developing brains to learn. So try picking up a book and reading, and celebrate with the child or children in your life.

Getting to Know 504 Plans

by Shelley Hubal

Section 504 is a civil rights provision of the federal Rehabilitation Act that was enacted to prevent discrimination against people with disabilities. In a public school setting this means that a disabled student is entitled to receive accommodations that allow him or her to fully participate in the same school programs or activities as his or her nondisabled peers. Specifically, Section 504 covers individuals who have a mental or physical disability that significantly limits “a major life activity”. Major life activities may include any of the following: caring for oneself, walking, seeing, hearing, speaking, breathing, learning or working. Here are just some examples of conditions for which Section 504 offers protection: asthma, allergies, cancer, depression, ADHD, auditory processing disorders, physical disabilities, and/or learning disabilities.

What are some of the differences between Section 504 and the Individuals with Disabilities Education Act (IDEA)? First, if a student is found eligible to receive services under IDEA, then an Individualized Education Plan (IEP) will be created, monitored and carried out via the school’s Committee for Special Education. In contrast, Section 504 only requires that there be a committee of individuals that have knowledge of the student, his or her evaluation and the school’s placement options. This committee creates what is known as a 504 plan. Unlike an IEP, this plan does not require regular review, even though such safeguards are suggested. Second, a student with an IEP typically receives services that are individualized for his or her needs. Often this is provided through special education classes and/or related services. In contrast, a 504 plan aims to adjust the typical education class to meet the disabled student’s needs. For example, under this statute a student with diabetes can receive accommodations for blood testing or to eat at certain intervals during the day. A 504 plan may provide note-taking or testing accommodations for a learning disabled student.

Under IDEA a student must qualify for services by falling into one of several categories of handicapping conditions determined by special education law. Students who qualify under IDEA are afforded the same rights and opportunities as those outlined in Section 504. However, the opposite is not true for students with 504 plans. If given the choice between an IEP and a 504 plan, a parent should consider what kinds of services and accommodations they want for their child and for how long. While an IEP affords more safeguards, services and procedural requirements, a 504 plan may allow for more parental control. Additionally, 504 offers protection for students that plan on attending post-secondary school.

Section 504 offers critical protection for students who do not qualify for special education under IDEA. To learn more about what provisions are available for your child and what might suit his or her needs best, consult an education attorney, your school principal or an education advocate.

STIC’s Education Advocates are Shelley Hubal (children with developmental disabilities) and Christine Delany (children with all disabilities). Please contact them at (607) 724-2111 (voice/TTY).

SSI and Debt

by Linda Giese

You are on your way to the grocery store and you stop at the bank to get some money from your account—but they won’t let you have it. Your checking account has been frozen by a creditor, for money you borrowed years ago. Your benefit check is in that account and you can’t pay your rent or withdraw any money—even to buy groceries—and, if you can’t get the account unfrozen or stop your direct deposit in time, next month’s disability check will go into the frozen account too.

If your only income is Social Security, Social Security Disability (SSD), Supplemental Security Income (SSI), or Workers Comp, someone may have said to you: Don’t worry about your old debts, your income is “exempt,” they can’t take anything from you. Technically that may be true. But in New York State, if a creditor has gone to court and gotten a “judgement of debt” against you, the creditor can send a court order to your bank demanding that the bank freeze your account(s). While the creditor may not actually be able to take the money out of the debtor’s account, the threat of a frozen bank account can be used by unscrupulous creditors to frighten people with exempt income into using money they need for essentials like food and utilities to pay off their old debts—just to avoid the consequences of a frozen account. There is no point in explaining to the creditor, or collection agency, that you are disabled and have no income. When you borrow money, you agree to pay it back whether you are prosperous and healthy or poor and sick. That’s why it is important that disability income is exempt from being taken by creditors.

In addition to not having any money available, the debtor is further harmed by the fees that the bank charges to the debtor—not the creditor—for freezing the account. There will be a fee ranging from $50 to $150 for the trouble of freezing the account that the bank will take directly out of the debtor’s account. In addition, there will be an insufficient funds charge for every check that bounces while the account is frozen.

Even the temporary loss of income has a cascading effect. If the debtor is threatened with eviction for non-payment of rent, this is not only very stressful for the debtor, it also uses the resources of other human services agencies, as the debtor tries to get help. If the debtor cannot buy groceries, this puts an additional burden on the local food pantry.

So, is it better not to have direct deposit of your disability benefits if you know that you have old unpaid debts? Not necessarily. Not if you keep your money in a checking account. When a direct deposit is made, the bank records the source of the money as Social Security, and it is these records—your past bank statements—that can be sent to the creditor to prove that the account contains only exempt income (if that is true), along with a request that the creditor unfreeze the account. If you receive your benefit check and deposit it in the bank yourself (or if you withdraw money and redeposit it), it may be recorded simply as a “cash deposit,” and you may not be able to prove that the source of that deposit was a disability benefit. At this point, the process of getting the account unfrozen becomes difficult to impossible for people with mental or intellectual disabilities. A person with these disabilities may not have the verbal and written ability, or the emotional stamina, to negotiate with the creditor and provide proof that the account should be unfrozen.

So, is it better not to have a bank account at all? This is a sure way to avoid the problem of a frozen bank account, but it creates another set of problems. How will you cash your benefit check? Will a bank cash it if you have no account, or will you have to pay a fee to a check cashing service? And how will you pay your rent and bills? If your income is $710 a month, do you live in a neighborhood where it is safe to walk around with cash? Probably not. Can you walk at all? A physically disabled person would probably find it impossible to live independently without a checking account, unless Medicaid is willing to approve payments for a home health aide to drive around town paying rent, utility, and phone bills for a disabled client.

In addition to all of the above, the judgement of debt allows the creditor to freeze the same debtor’s bank account over and over again. After having his account frozen once, the elderly or disabled person may decide to make payments he can’t really afford in order to avoid the repetition of this very stressful event. And he probably will not write to his State Senator or Assemblyperson and complain about what has happened, because the debt collector has made him feel ashamed that he can’t pay his debts. This is too bad because laws are often changed precisely because legislators hear stories of personal hardship, as with Timothy’s Law and Megan’s Law.

Can this situation be remedied? If the wording on the order to freeze the bank account were changed so that it said something like, “freeze this person’s account, except for those funds that are exempt under the law,” probably yes. If the account holder had direct deposit, the bank would know that the income came from an exempt source and would have specific instructions not to freeze it for that reason.

If you think the situation should be changed, you can write to your state Senator and Assemblyperson. If you don’t know who those people are, you can call your County Board of Elections and they will tell you who they are.

(This article was not written by an attorney and is not to be construed as legal advice. Linda Giese is the President of the Board of Directors of STIC.)


Annual Campaign Contributors

These are the generous people who contributed to our 17th. Annual Campaign and who agreed to let us publicize their names. Staffing issues kept us from printing them in our Winter issue; we apologize for the delay.

There’s still time for you to send in your gift. If you have the form we sent with our colorful letter last fall, please fill it out and include it. If not, please put “Annual Campaign” on the memo line of your check. All gifts will go towards our East Fredrick St. building renovation project.


Joseph & Cheryl Benedetti

Joshua Bieber

Sue & Anthony Clancey
in memory of Terry Clancey

Gerald & Cindy Day

Barbara Devore

Anthony & Ursula Di Cesare

Ken & Maria Dibble

Daniel Driscoll, MD

Dolores Duke
in memory of Paul Duke

Nicki & Alan French
in name of Mark French

Bette Gifford

Martha O. Girton
in name of Randy Collingwood

David & Alison Hanson
in name of Carol Hanson

George & Judith Homanich
in memory of David Homanich

Kay Hooper

Mr. & Mrs. James Ivan

Linda S. Janes

Sam Liberto, Jr.
in memory of Saverio Liberto

Susan Link & Family

Philip & Darlene Mauro
in name of Philip Mauro Jr.

Jaunita Mendez
in name of Jo Anne Novicky

Mrs. Richard H. Miller
in memory of Richard Miller

Lois O’Halloran

Dolores Panella

Joe & Heather Rinkavage

Patricia Rotundo

Robert Ruane

Richard & Sharon Rusakiewicz
in memory of Cpt. Brian Faunce

Matthew Schadt
in memory of Richard Schadt

Sue Seargent
in memory of Dorothea Seargent

Caroline J. Smith
in memory of Wallace & Ben Smith

Stento Family
in name of Danielle Stento

Dr. & Mrs. James Vincens

Ruth B. White
in memory of Paul G. White

Wes Wilson

Free Seminar at STIC

Best Practices for Students with Autism Spectrum Disorders

April 2, 2007
12:30 – 3:00 pm
repeated at 4:00 - 6:30 pm
Southern Tier Independence Center
24 Prospect Avenue, Binghamton

(PARKING will be available in the Little Venice Restaurant parking lot)
Call STIC for directions at (607) 724-2111 (voice/TTY)

Light refreshments will be provided
Best Practices in Positive Behavioral Supports
  • Best practices for students with ASD include the use of Positive Behavioral Supports (PBS), a set of research-based strategies used to increase quality of life and decrease problem behavior by teaching new skills and making changes to a person’s environment.
  • PBS blends person-centered values with practical science about how changes in learning and behavior occur.
  • Children with and without disabilities participate in PBS in schools, at home, and in community settings.
  • A key component of PBS is the design and use of functional behavioral assessment to understand what causes an individual’s problem behavior.
  • Functional behavioral assessment helps teams develop and implement behavioral intervention plans (BIPs) that are positive, proactive, educative, and functional.
  • BIPs include interventions that can be implemented across situations and settings. They include proactive strategies for changing the environment to reduce or remove triggering events, teaching new skills that replace problem behaviors, eliminating or minimizing natural reinforcements for problem behavior, and maximizing reinforcements for appropriate behavior.
  • A hallmark of PBS planning is emphasis on improving overall quality of life and maximizing the inclusion of persons with disabilities in school and community settings.

Seminar Agenda
  • Introduction to PBS
  • PBS and NYS regulatory requirements for students with disabilities
  • Overview of autism spectrum disorders
  • PBS for students with autism spectrum disorders
  • Conducting functional behavioral assessments
  • Developing behavior intervention plans

Target Audiences
  • School district personnel (general and special education teachers, administrators, related service providers, counselors, psychologists, and social workers) who work with students with autism spectrum disorders who also display behavior problems
  • Parents who have a child with an autism spectrum disorder who are interested in their child’s behavioral intervention plans or who want to implement positive behavioral supports at home.
  • Staff working with students with autism as service coordinators, paraprofessionals, respite staff, residential habilitation staff, community group leaders, vocational counselors and others who want to learn more.

Center for Autism and Related Disabilities

The Center for Autism and Related Disabilities (CARD) is a university-affiliated resource center that brings research and practice together in community settings. The NYS Department of Education has provided grant funding to CARD Albany to conduct statewide training on best practices for students with autism spectrum disorders.

Please register for this training by March 26 2007
by returning the form below to CARD Albany via mail, fax, or e-mail.
College of Arts and Sciences
Department of Psychology
535 Western Avenue
Albany, NY 12203
(866) 442-2574
toll free(518) 442-2574

NAME ___________________________________   TITLE _____________________________

ADDRESS ____________________________________________________________________

CITY_____________________________________ STATE______ ZIPCODE _______________

SCHOOL DISTRICT _____________________________ COUNTY______________________

PHONE ______________________________   FAX___________________________________

E-MAIL ADDRESS _____________________________________________________________

Parents Empowering Parents

STIC's Parent support group,
Parents Empowering Parents

Is starting a new chapter!
Please join us!
This group is open and free to all parents
or guardians
of children with a disability.

We will be meeting the
last Wednesday of every month.

Lunchtime PEP will meet from 11:30 to
12:30 on STIC’s 4th. floor, Helen Keller Room.
Evening PEP will meet from 6 PM to 7:30 PM
at the PAL Family Resource Center,
45 Lewis Street Binghamton.

Contact Shelley Hubal or Sue Lozinak at:
for more information.

Community Programs

Accessible Pedestrian Signals Arrive

by Erin L.W.K. Duguay, Orientation & Mobility Specialist, AVRE

New arrival to the streets of downtown Binghamton: our very own Accessible Pedestrian Signal (APS)! Education has been the key to this entire process: educating our educators; educating our city; educating and collaborating with the Department of Transportation and our regional transportation planners at the Binghamton Metropolitan Transportation Study; and, of course, educating the public at large.

So what’s an APS? APSes, or Accessible Pedestrian Signals, are simply a more advanced pedestrian signal. Traffic engineers and planners put pedestrian signals at traffic lights to make our ever more complicated intersections as pedestrian-friendly as possible. These signals are for pedestrians only, not vehicle traffic, and are, I’m sure, familiar to most people. The many pedestrian signals installed throughout the Southern Tier differ slightly, but most have three phases: the “don’t walk” phase, which is usually seen as a solid orange hand; the “begin crossing now” phase, with a white stick figure; and the “don’t begin crossing” phase, which may be either a flashing orange hand or a numerical countdown. An Accessible Pedestrian Signal simply means that the information described above that you can see is communicated through a loudspeaker so that you can also hear it. The latest version of the pedestrian crossing push-button has a speaker attached to it so that the speaker only has to be loud enough for the person standing beside the button.

This first installation of APS in Binghamton is at the downtown intersection of Court, Hawley, and Water Streets—though some may know it simply as the Boscov’s intersection. What is wonderful about this intersection is that not only does it have eight little speaker boxes at the pedestrian buttons for each crossing, announcing when to cross and when to wait, but it also has a number of other features that make it even easier for all of us to use the intersection. The first thing that most pedestrians notice after hearing the quiet tone summoning them to the pedestrian button, is that there are two separate wheelchair ramps at each corner, one ramp for each crossing. A separate ramp for each crossing means that the ramps can direct pedestrians into the correct crosswalk: there is no confusion about which way to go. To further alleviate confusion, there are two pedestrian buttons on each corner as well, each associated with a ramp, and mounted on a separate pole. These separate poles are placed right at the top of the wheelchair ramp that is directing pedestrians across the street to the other corner, again helping to reduce the amount of confusion about what button to press and what direction to face.

Another complicating factor at modern intersections, especially for people with low vision or no vision, is determining exactly where the sidewalk ends and the street begins. To help with this, each wheelchair ramp has a bumpy mat or Detectable Warning Surface (DWS) at the base of the ramp which can be felt underfoot. Just to make sure a pedestrian doesn’t miss the end of the sidewalk, these bumpy mats help to alert each individual to the very well-blended line between the sidewalk and the street. A last crucial consideration for all pedestrians is a clearly defined crosswalk. Not only does this intersection have big bold white lines to define the crosswalk, but between the lines is a contrasting color to further highlight the walking area and stamped concrete for cane users to feel with their white mobility canes.

All of these great design characteristics, in addition to the audible pedestrian signals at each corner, make this intersection more accessible for all of us. Work continues to ensure that all new intersection design projects within Binghamton include all of these helpful, pedestrian-friendly features.

For more information about APS installations and accessible designs, please contact Erin Duguay at AVRE (Association for Vision Rehabilitation and Employment, Inc.), 607-724-2428 extension 133.


Wednesday, APRIL 4, 2007

Broome County MRDD Public Forum

Broome County Health Department
225 Front Street
Binghamton, New York

1:00 - 3:00 P.M.

Please join us for a discussion about the supports and services needed in Broome County for individuals with mental retardation and developmental disabilities, and their families.

Light Refreshments Will Be Served

Oh the Fun We Can Have!

by Jeff Rogers

On February 6, 2007 the Relay for Life organization for the greater Binghamton area had its Kickoff at the Oakdale Mall. There were a lot of people there to take part, people who were doing this for the first time and old-timers who have been around a while. The theme of this year’s relay is “Oh the Places We Will Go”.

Here at STIC it is also time to start to think about this year’s Relay for Life. The Relay will take place on Friday and Saturday, June 15 and 16, 2007, at MacArthur Park track. The Relay starts at 6 pm Friday and ends at noon on Saturday. There are a lot of fun activities planned for that weekend at the Relay.

One of the big things planned is the Cancer Prevention Study-3 (CPS-3). The study is a longitudinal one but it is one that is very important to take part in. The Binghamton Relay was picked as one of the 64 Relays in the US to take part in the study. If you would like to know more or are interested in taking part in the study please contact Sue Ruff or myself, co-captains for this year’s Relay team here at STIC.

If anyone has any ideas to help raise money for the Relay, let Sue or myself know. Team sign-up will start soon so think about giving an hour or two of your time that weekend to help a very important cause. I will send out more information when I get it.


Spring 2007
Issue No. 86