Model Madness

by Ken Dibble

The other day the respected financial advice expert Jane Bryant Quinn came out in favor of single-payer universal health insurance. Good for her!

But... she promoted Medicare as the model. She’s not alone; we keep hearing this from single-payer advocates.

People—Medicare sucks. Yes, it’s efficient. But its benefits package does not compare well to that of any private insurance, and it has excessive premiums, deductibles and co-pays. Its draconian limits on personal assistance, mobility aids and assistive technology are especially crummy for people with disabilities.

Medicaid, on the other hand, covers just about everything, including prescriptions (with no nonsense about navigating private plans), with no deductibles, premiums only at higher income levels, and very low co-pays. And Medicaid is almost as efficient as Medicare; its administrative overhead cost ranges between 6% and 8%. Yeah—docs don’t like Medicaid because it doesn’t pay as much. Whether they like it or not, they’ll have to accept it if it’s the only game in town. So forget Medicare. Medicaid is the model for single-payer coverage. Get with it, Jane!

Oh No! Not Another Committee!

by Ken Dibble

STIC periodically holds long-range planning sessions that involve all of our staff, Board members, and interested others. A major concern that arose in sessions we held early this year was how to maintain and increase our systems change advocacy focus as the agency’s direct service programs continue to expand.

We believe that community and systems change advocacy is the heart of Independent Living. Most direct services should be viewed as temporary stopgaps while we’re on the road to a fully accessible and inclusive society. Or, as Independent Living Founding Father Ed Roberts put it, Independent Living is “inherently political”.

Individual needs are great, services are labor-intensive, and “nobody wants to pay you to advocate.” So the tendency is to emphasize services and let advocacy be an afterthought. This is an old story, played out in Centers for Independent Living (CILs) across the nation for decades. We at STIC have, perhaps, been more vocal about advocacy than other CILs, but at times our follow-through has been weak.

That’s not entirely our fault. Many times people with disabilities and family members ask us to take on an issue. We tell them we’ll provide resources and guidance, but those who “own” the issue must play a central and continuing role. When they hear that, most folks pretty much disappear. People do get some relief from an opportunity to repeatedly complain and have somebody listen, but that’s not what we’re about. It’s your life, and ultimately, it’s your problem. If you won’t stand up and do what you can, we’re not going to carry your water for you.

Still, pretty much everyone here felt there was more that we could, and should, be doing. One thing we can all do is apply our considerable range of knowledge and experience to developing better strategies for addressing longstanding systemic problems in a way that is, well, systematic. So we’ve created several committees, centered around different issue areas. Just about everybody at STIC is required to participate in bi-weekly meetings, and some of the committees are open to membership by people with disabilities or interested others. Each committee is accountable for showing progress on its issues.

We've been doing this for about 6 months and we felt it was time to share our preliminary results with you. Have a look at our special “Systems Change Initiatives” section and feel free to get involved.

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.

7th. Annual
Hometown Holiday
Light Festival

Celebrate the Season

November23 through December 30
Otsiningo Park, Binghamton
5:00 pm - 9:00 pm

Every Night!
(weather permitting)
call (607) 724-2111 (voice/TTY)
 for information

$8 per car/SUV Tues - Sun
"Drive for $5" on Mondays!

All Proceeds Benefit
 Southern Tier Independence Center
September 2007


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
24 Prospect Avenue
Binghamton, NY 13901

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

SPECIAL SECTION: Systems Change Initiatives

STIC is re-energizing its system change mission by making advocacy planning and action part of everyone’s job. Advocacy Committees are addressing different domains where change is needed, including Health Care, Employment, Education, Community Integration, Civil Rights, and Consumer Involvement. For this issue of AccessAbility, each of the first five committees has prepared a report for you, our readers. The Consumer Involvement Committee will report at a later date. Some committees are also seeking your participation. We hope these reports will energize you as well.

Community Integration Committee

by Darlene Dickinson

Mission Statement
  • Identify policies, practices and other barriers, both locally and statewide, that prevent people with disabilities of all ages from living in the community.
  • Examine each identified barrier and formulate a plan of action for systems change.
  • Develop a multi-facetted approach to advocating for systems change, including:
          Public education and awareness
          Coalition building
          Lobbying for local and statewide legislation that effects change
          Strategic pressure on state and local agencies to change policies that promote institutionalization
The CI Committee has undertaken a project to create a proposal that will be submitted to OMRDD and/or the NYS Legislature to re-allocate funds currently paid to developmental centers for institutionalized care to new or existing programs that serve people with disabilities in the community.

The project has several stages. Stage One involves researching current OMRDD funding streams, programmatic policies, and barriers to accessing funds for community-based services, and examining the policies and procedures for existing programs and gathering data/ideas for improvements that could be made. Stage Two involves defining the “ideal” program that would meet the needs of the most people in the community. What services and supports would each consumer profile need for success in the long-term? How should funding and oversight be structured? What types of supports and/or services should be available for long-term residents of developmental centers and/or other institutions when making the scary and difficult transition to the community? Stage Three is the process of putting together a comprehensive proposal of services and supports specifically designed to encourage institutions to create transition plans for residents who wish to live in the community. Our proposal will also include new approaches to supporting formerly institutionalized people in the community, using funds previously paid to institutions, with money following the person from institution to community.

Employment Advocacy Committee

by Kandi Stevens

The Employment Advocacy Committee has decided to focus on increasing consumer awareness of employment-related options prior to their initial meeting with VESID. We also plan to design brochures to be used at upcoming events to increase awareness about supported employment and educate people in the community. STIC Peer Counselor Susan Link has accompanied many consumers to the VESID orientation, and will speak at our next committee meeting to give us an overview of the orientation process and better insight into the manner in which they present employment options to people with disabilities.   

New technology and employment research are generating new hiring practices that impose barriers to people with disabilities. We are in the process of contacting SHRM, the Society for Human Resource Management, a committee of human resource representatives from the Southern Tier, in hope of meeting with them to discuss the barriers we are faced with, including the online application process, screening/personality tests, etc.  

In preparation for National Disabilities Awareness Month in October, we are trying to arrange for Hanna Rudstam, the Senior Extension Associate from the Disability Assistance and Technical Assistance Center (DBTAC), to present to the committee and other service providers on the changing job market, including why it is financially viable for employers to hire people with disabilities.

Health Care Advocacy Committee

by Joy EarthDancer

The goal of the Health Care Advocacy Committee at STIC is to identify, and then advocate to change, gaps and/or inequities in medical coverage that are costly to the community at large and harmful to those affected.   

We support expanding coverage under the NYS Elderly Pharmaceutical Insurance Coverage (EPIC) program to people with disabilities under age 65.

This coverage is needed because national surveys show that Medicare enrollees with disabilities who are under age 65 are 3 to 4 times more likely to fail to fill a prescription due to lack of funds. This same population has trouble getting care, or they delay care, because of cost. They often fail to see a doctor at all until their health care needs have become a crisis. Prevention is always cheaper than letting medical problems go untreated for months and years.

On average, Medicare beneficiaries with disabilities have lower incomes than do nondisabled elderly people. In addition, SSDI beneficiaries have poorer physical, mental, and functional levels than nondisabled elderly people.  

The combination of high prescription costs, low incomes, and lack of coverage options puts people with disabilities at great risk. Drug coverage through Medicare Part D is inadequate protection for them.

When EPIC beneficiaries began signing up for a Part D plan, EPIC became a secondary payer and began to realize significant savings. According to projections from the New York State Division of Budget, EPIC beneficiaries enrolling in Part D plans would have saved the state $120 million in 2006. These savings alone would more than offset the cost of expanding EPIC to people with disabilities. More importantly, this would substantially reduce the number of uninsured people with disabilities who delay seeking medical care and thereby use care only when it is most costly—in hospital emergency rooms and often when disease has progressed to a critical stage.  

We support Medicaid wrap-around coverage for people dually-eligible for Medicaid and Medicare who can’t obtain prescription drugs due to Medicare Part D regulations.

New York’s dual eligible population, a number ranging from 550,000 to 600,000 people, includes the poorest, oldest, and most frail people with disabilities and chronic serious illnesses. Because they need comprehensive and consistent health care, they are the most vulnerable of all health care consumers in our state.

Denying access to prescription drugs for dual-eligibles who live every day with a critical need for medications results in increased hospitalizations, both as inpatients and in the emergency room, and results in increased nursing home admissions, all of which are much more expensive than providing access to prescription drugs.

Denying access to prescription drugs for dual-eligibles places an extra burden on doctors, nurses, social workers, and our outpatient health network, all because the preventive health benefits that prescription drugs can provide have been eliminated.

Dual-eligibles have been harmed by mandatory enrollment into Medicare Part D drug plans. Despite their Medicaid eligibility they are not allowed to use the state’s Medicaid prescription drug program, which covers a broader array of drugs than the “benchmark” Part D plans they are enrolled in. While they are not subject to premiums or deductibles, unlike beneficiaries with higher incomes, they must pay co-pays that can amount to a significant economic burden for those who need many prescriptions. Federal law prohibits use of Medicaid funds to pay these co-pays. To alleviate some of this burden, New York should use 100% state dollars to cap the amount of Part D co-pays made by dual-eligibles at $200 a year, as it is for Medicaid beneficiaries.

We cannot emphasize enough that these measures will save rather than cost money. Providing health care for those most at risk benefits the community at large and overall will cost less than current policies.   

STIC’s Civil Rights Advocacy Committee

by Ken Dibble

The Civil Rights Advocacy Committee was formed to address systems advocacy issues that don’t fall into any particular focus area. Early on, we looked at various long-term items, such as voting rights enforcement and the need to combine all state programs and services for people with disabilities into a single cross-disability state agency.

However, it soon became clear that there was a critical unaddressed issue in our region: the failure to effectively respond to abuse and neglect of children with disabilities at home and in school. Without naming names, we’ll summarize what we’ve seen over the last few years that led to this conclusion. While some organizations perform better than others in this field, the incidents show a clear pattern of failure overall.

On several occasions, family members or service coordinators have reported that children with disabilities have been physically abused at school. In many cases, we have medical examination records and photographs that document the abuse. In each case, school officials have refused to act, whereupon the family tried to involve the police. The police refused to accept the reports and at times claimed they have no jurisdiction in the schools. Service coordinators—who are supposed to be “mandated reporters” under state social services law —have tried to follow state regulations by calling the NY Child Abuse Hotline to report these situations. They are often—but not always—told that the hotline only accepts reports about abusive “primary caregivers” and can’t take reports of abuse at school. The Office of Mental Retardation and Developmental Disabilities requires “incidents” to be “reported”, and tells service coordinators to call the hotline, but does not itself have any enforcement capacity.

Also part of the pattern is a failure by child protective services to properly handle physical and sexual abuse of children with disabilities at home. Families have called the police, out of desperation, when facing severe behavior issues with children with emotional, mental, cognitive or intellectual disabilities, and have been told to “get tough”, spank the kid, and move on. Family members have been identified as abusers but allowed to continue to have contact with the abused children. Sometimes “supervised” visits are ordered, but the “supervisors” allow the child to be alone with the abuser. There is also a problem with child law guardians, many of whom appear to be incompetent or neglectful of their duties. Possibly the family or criminal court system has a problem as well; in one case, an investigation of a single abuser was going forward, but when the child identified a second abuser at a different time and place, the investigation was halted because, it was claimed, it was no longer clear who had committed the first abuse.

Tied into this pattern is an alleged lack of capacity in generic child services programs for working with children with disabilities, including the foster care and emergency shelter systems. Some subcontractors for federal “Protection and Advocacy” programs for people with developmental and mental disabilities appear to be exclusively focused on the behavior of state agencies—and are sometimes reluctant to confront them. And assumptions remain widespread that complaints of abuse or neglect by children with disabilities are less reliable than those of nondisabled children; that stress and frustration associated with caring for and working with children with disabilities somehow excuse mistreatment; and that children with disabilities, due to their alleged “low quality of life”, are less deserving of immediate and intensive attention from social and health service providers than nondisabled children.

Our committee’s response to this issue so far has been to educate itself. Once we are clear on the laws, regulations, and finances that govern the child protective “system”—right now, it looks more like a random set of disconnected responses than a “system”—we will come up with a strategy for systems change.

In the meantime, though, here is what we’ve learned. Hopefully this will help those who are struggling to find support right now.

First, the police do have jurisdiction over crimes or possible crimes committed in schools, whether by school employees or students. However, there is no law or regulation that requires police departments to investigate any report of a crime. They do have to take your report, though. Some local police agencies are better than others about this. So, you should insist that the police take your report. That puts the incident on the record. If they refuse to investigate, you should contact the local district attorney. They can investigate and prosecute crimes on their own. If the district attorney doesn’t respond, you should go to the media.

If your child has behavior issues, the police should be sensitive to them. And regardless of disability, an adult who understands that some behavior is illegal should face legal consequences for breaking the law, and not be coddled by disability service agencies. However, calling the police is not the answer for disability-related behavior problems in children. As we’ve been saying for years, the state agencies and their subcontractors have to step up to the plate with adequate levels of support—and we mean in-home and respite services, not an offer to build another group home for children.

For mandated reporters: In August Governor Spitzer signed “Xctacy’s Law”, which expands requirements for mandated reporting to the Child Abuse Hotline. It requires mandated reporters to “hotline” information they get from third parties about potential abuse. The law also says mandated reporters can make a report based on their own suspicions or on information provided to them by primary caregivers—but that’s old language that was already in the law. The list of mandated reporters also has not changed. The law does not say that the Hotline can only accept reports about abuse committed by primary caregivers. It does appear that it makes a difference whom you speak to at the Child Abuse Hotline. Certain operators will take reports about abuse in the schools; others will not. If an operator refuses to take your report; ask to speak to the supervisor. Attempt to “hotline” an incident if you can, but if you suspect criminal activity, you should also go the police/district attorney route.

The Americans with Disabilities Act has required for over 15 years that programs and services be physically and programmatically accessible to children with disabilities. It is simply not acceptable, or legal, for a generic child or family services program to claim that serving children with disabilities is a “specialty” item that it doesn’t have to provide. We realize that ADA lawsuits are a slow and difficult way to get satisfaction—but if nobody sues these agencies, they will never be brought into compliance with the law.

As for OMRDD’s response to “incident reports”: From an Independent Living point of view, it would be far more appropriate for generic police and social service agencies, and courts, to enforce the law than to create some special developmental disabilities enforcement power. OMRDD’s incident reporting system exists primarily to give the Commissioner advance warning that somebody screwed up and the foo is about to hit the fan. That system is intrusive and paternalistic; it encourages service providers to violate people’s privacy and civil rights over minor issues. Trust us; you don’t want OMRDD lawyers and bean counters to have any authority to act in child/family/school disputes.

What’s next? The Civil Rights Advocacy Committee plans to set up some formal training opportunities for our staff, other professionals, and people with disabilities and their families so we can all get a better handle on how things are supposed to work. We’ll let you know when we have a schedule.

STIC’s Education Advocacy Team (EAT)

by Christine Delany

The Education Advocacy Team (EAT) is committed to systems change in the area of special education for students with disabilities. In keeping with STIC’s philosophy, we all agree that all students deserve the best educational opportunities in the least restrictive environment with the supports and services necessary for each individual student.

The group identified a number of areas of concern:

  • School districts including vocational goals in a student’s IEP starting at age 14
  • ncluding parents and students in transition planning
  • Increasing inclusive opportunities for both preschool and school-aged students
  • The shortage of early intervention, preschool and school-aged service providers and therapists
  • Increasing use of Functional Behavioral Assessments and Behavior Intervention Plans instead of moving students with behavior issues to more restrictive environments
  • Increasing the availability of integrated Extended Year Programs
  • Eliminating the gap between transitioning from CPSE (Committee for Preschool Special Education) to CSE (Committee for Special Education).

The gap between CPSE and CSE creates a particular quandary for students who have “aged out” of CPSE because they are 5 years old but are, for various reasons, not ready to begin kindergarten. This is not an issue for nondisabled students because their parents can choose to keep them in preschool another year to prepare for kindergarten. However, for a student with a disability, if the parent chooses not to place him/her in kindergarten, the child does not receive any special education services. If they choose to place their child in kindergarten and the child has behavioral issues, the school district can suspend the child or refuse to provide services because the compulsory age for education is 6 years old, so technically the school does not have to educate a 5-year-old. As an advocacy group, we believe this issue merits our attention. We are still attempting to come up with some solutions and a plan of action regarding this issue.

The primary issue that the Education Advocacy Team has decided to address is the lack of integrated summer programs for students who are eligible for Extended Year Services. Currently, almost all Broome County school districts provide Extended Year Services through BOCES. Students who are eligible for Extended Year Services are almost universally given the option of either Columbus Learning Center or Tioga Learning Center, both of which are segregated. There are a few exceptions, but overall, students with disabilities receive their summer program in a completely segregated setting. Even if the student’s IEP (Individualized Education Program) states that the most appropriate setting is a general education classroom with supports and services (inclusion), the student’s Extended Year Services are segregated. The State Education Department’s regulations clearly indicate that school districts should either operate summer programs for nondisabled students in which disabled students can be integrated, or provide alternate methods for meeting the Least Restrictive Environment (LRE) requirements.

The Education Advocacy Team will identify barriers to integrating existing summer programs as well as the barriers that schools face in creating integrated programs within their districts. We will also contact existing summer programs for nondisabled students to find out what support they would need in order to integrate students with disabilities. Additionally, most community summer programs are not available for older students. We are looking into opportunities for middle- and high-school-aged students to have integrated summer programs. We hope to identify barriers and provide solutions by next summer.

As always, STIC wants and appreciates student and parent input on these and other issues. Our advocacy group meets bi-weekly on Thursday mornings from 9:15 to 10:15. If you are interested in providing input, please contact us.


Action Restored on ADA Restoration Act

The Americans with Disabilities Act Restoration Act has been reintroduced in both houses of Congress. We covered this in detail in our Winter 06-07 issue; we’ll just summarize it here.

The ADA’s employment discrimination provisions have been severely weakened by several Supreme Court decisions. The Court alone is not at fault; in many cases lawyers for the plaintiffs made the wrong arguments or pushed the wrong issues. The law was intended to cover people who are discriminated against not only if they have a disability, but if they used to have one or are believed to have one. The Supremes have destroyed the ADA’s ability to protect people in the latter two groups.

The ADA Restoration Act would fix this by applying a more universal civil rights standard. Instead of messing around with whether the person being discriminated against actually has or ever had a significant or minor disability, it simply says it’s illegal to discriminate irrationally on the basis of disability. That is, if an employer refuses to hire or promote you, or fires you, because s/he believes you have a disability that prevents you from performing the essential functions of the job with or without a reasonable accommodation, and s/he is wrong about that, s/he’s guilty.

There will be no need to determine whether you are a “qualified person with a disability” who can sue under the law. But just in case, the ADA Restoration Act broadens the definition of “qualified person with a disability” to cover any sort of physical impairment or unusual cosmetic condition, and it states clearly that you’re covered even if you don’t have any kind of disability or impairment at all, as long as the defendant thinks you do.

At press time the bill had lots of sponsors in the House and had been introduced in the Senate with at least one Republican and three Democratic sponsors. Congress was on summer vacation. Advocates were gearing up to push for more sponsors when they return. It should be easy to get it passed in the House, and relatively easy in the Senate. President Bush’s views on the bill are unknown. If he doesn’t like it, it doesn’t seem likely that a veto could be overridden. But we’ll keep you informed.

Community Choice Act Gains a Hearing

We reported details on this proposed federal legislation in our last issue. The Community Choice Act would let people who are eligible for Medicaid-funded nursing facility or ICF/MR services opt for a home-based program of supports and services instead. It is very similar to the “MiCASSA” bill that got lukewarm support from members of both houses over the past decade but was never passed. Changes made to federal Medicaid law in 2006 let states make programs like this part of their Medicaid State Plans, without requiring a Home and Community Based Services waiver, if they wish. What this bill would do is force them to offer the option.

Activists moved the bill forward a bit in the Senate this summer. An email and fax campaign, coupled with an ADAPT protest at the Washington office of Senator Max Baucus (D-MT), got him to schedule a hearing on the bill before the Senate Finance Committee, which he chairs. The hearing is scheduled for September 25. This will be an important occasion for activists to attend and make their wishes known.

Letting the SCHIPs Fall Where They May

SCHIP stands for “State Children’s Health Insurance Program”, a special federal Medicaid program that provides health coverage for children whose family incomes are a bit higher than that allowed for standard Medicaid. Children with family incomes up to 250% of the federal poverty level can enroll. States can apply for permission to raise the threshold even higher. States handle the program differently; in New York it’s called Child Health Plus. While it’s not a disability-only program, many children with disabilities in New York get insurance coverage through SCHIP because their families, among the “working poor”, make too much money to qualify for Medicaid, yet their employers don’t offer family health benefits or don’t provide them affordably.

SCHIP is due to expire this fall. Over the summer both houses of Congress passed bills to renew and expand the program. Bush has threatened to veto any expansion bill. The Senate appears to have a veto-proof majority; an override in the House is less certain—though the Bush Administration’s latest move could push them over the top.

In mid-August the federal Centers for Medicare and Medicaid Services (CMS) issued a letter to the states announcing major restrictions in the SCHIP program. States won’t be allowed to enroll children with incomes above 250% of poverty until they have enrolled 95% of children in the state who are eligible at the 200% level. Also, only children who have gone without insurance coverage for at least a year will be allowed to enroll. A family’s premium/co-pay costs for SCHIP are calculated at a percentage of the family’s income. Under the new rules, for families above 250% of poverty, that percentage can be no more than 1% lower than what they would pay for comparable private insurance. And, the state has to show that the number of children at these income levels who have private insurance has not decreased by more than 2% over the previous 5 years. CMS claims that current enrollees will not be affected. States have 12 months to comply.

The Bush Administration does not hide the fact that this is intended to keep SCHIP from competing with private insurance companies. Private insurers have trouble competing with the more efficient and inclusive SCHIP program because those companies have very high overhead costs, ranging between 15% for “traditional” insurance to 30% for HMOs, due to excessive profit-taking and bureaucratic review procedures designed to limit benefit pay-outs.

The assumption that SCHIP “crowds out” private insurance companies is wrong. SCHIP was created precisely because people at these income levels can’t get private insurance. Their employers tend not to provide insurance benefits. There is also a lot of turnover in jobs that pay at this level, so even if some of these employers do provide coverage, many of the employees don’t stay around very long to use it. And buying private family health insurance on one’s own is very expensive; nobody at these income levels can afford that. In fact, there is no evidence that people drop private insurance to use SCHIP at all.

Seventeen states and the District of Columbia currently offer SCHIP above 250% of poverty. New York has applied to raise its threshold to 400%. Three other states are preparing applications to go up to 300%.

CMS’s letter will stop these states from enrolling any new kids at those income levels. It’s impossible to enroll 95% of those eligible at 200% of poverty. As a New Jersey official said, you couldn’t get 95% if you went door-to-door to every eligible household. Some people just don’t want to participate. Others have fluctuating incomes; their eligibility comes and goes and they can’t stay in the program. And children constantly age out. Even if states could meet this requirement, nobody will be able to afford to enroll. families that can’t afford private insurance rates can’t afford 1% less than that.

The timing of this announcement was highly suspect. It looked almost like a tantrum in response to Congress’s actions. And it may be treated as such by Congress. Activists were organizing for action as we went to press. Governor Spitzer announced that he would fight this move, in the courts if necessary. He noted that, among other things, CMS doesn’t have authority under the law to make this kind of change without subjecting it to public comment. (We also hope this resolve extends to challenging CMS on its unilateral changes to spousal impoverishment/refusal rules for Medicaid waivers, as he has pledged to do.) We’ll keep you informed.

Mandatory Medicaid Managed Care Marches On

New York’s decade-long saga of forcing Medicaid recipients into managed care continues this fall, when more counties will be added to the list of those where SSI recipients will be put on the rolls. One of them is Broome, STIC’s home county. Another is Onondaga, which contains Syracuse and is served by one of STIC’s new Nursing Home Transition and Diversion Centers (see STIC Expands to Meet Demand to Beat the Band).

As part of the budget agreement this spring, the state’s Medicaid Managed Care Bill of Rights rule that managed care providers must offer “special needs plans” to people with severe and persistent mental illness was quietly repealed (just as a similar provision for people with HIV/AIDS was repealed last year). However, as is also the case with HIV/AIDS, specialized services and medications for people with mental illness will remain available on the State Medicaid Plan and won’t be provided through managed care. This is known as a “carve out”. Another “carve out” is for Consumer Directed Personal Assistance (CDPA) services like those STIC offers. People in Medicaid managed care can still get CDPA without going through the managed care provider.

That is, if any such people are actually in Medicaid managed care. Except for the mental illness change, all the rules for the program remain the same as they have been since 2005. That is, the vast majority of SSI recipients can be exempted, or are excluded, from managed care. As we reported last winter, though, there’s a catch.

New York State is automatically enrolling all SSI recipients in the target counties into Medicaid Managed Care whether they are exempt or excluded or not. You’ll receive a letter from “Medicaid CHOICE” telling you what plan you’re enrolled in and explaining how to change plans. However, the letter may not clearly say that you may be exempt or excluded and can opt out. In order to opt out, you must file paperwork documenting your exemption or exclusion. If you don’t, you’ll be in the plan whether you should be or not.

Related to this is a change made this June to rules governing Medicaid for waiver participants. When your Medicaid eligibility comes up for renewal, be sure to insist that you need “long-term care full Medicaid”, and be prepared to document your income and assets. If you don’t do this, you may find that managed care exemptions you thought you qualified for will be denied.

We published an extensive list of exemptions and exclusions in our Winter 06-07 issue; we’re not going to reprint it here. If you live in Broome County (or in Onondaga or Cortland County and are being served by STIC), and you are on SSI, you should contact the person you’re working with here to find out how to get yourself out of this mess.

MISCC on View

New York’s reconstituted Most Integrated Setting Coordinating Council held a meeting on July 16. It was a mixed bag in terms of results—or even signs that there will eventually be results.

The 2 ¼ hour meeting was webcast live and recorded; the recording is available for a limited time as streaming media online at the MISCC’s new website: If you want to watch it, we recommend using the RealPlayer option instead of Windows Media Player. RealPlayer lets you resize the tiny original image so you can see the open captions, and also lets you skip ahead, no matter how old your computer is or what operating system it uses. Although it was stated that the meeting minutes would be posted online, they weren’t there at press time. Minutes, for the full Council and its committees and workgroups, would be useful for people who want to follow the MISCC’s progress but don’t have time or bandwidth for a 2+ hour video.

Once again, several top-level people represented the MISCC’s state agency members—four Commissioners were there including the chairperson, OMRDD Commissioner Diana Jones Ritter, as well as the Director of the State Office for Aging and the Chairperson of the Commission on Quality of Care and Advocacy for People with Disabilities. The other agencies were represented by lower-level people. Jones, with her energetic and engaging style, kept the meeting on track as committees and work groups made their reports.

Over 3,000 people attended the four “People First Listening Forums” held around the state this summer—an outstanding turnout indicating major interest in the issues. Many of these people talked about the inability of people with more than one disability to get services due to the ongoing turf wars between the state disability service agencies. (We’ve called them bureaucratic “fiefdoms”; Spitzer Administration people call them “silos”.) People with co-occurring substance abuse and mental health disabilities, brain injuries and developmental disabilities, mental illness and developmental disabilities, and other combinations of these disabilities, keep getting turned away by Agency A and told to go to Agency B, which sends them back to Agency A. The state agency heads got the message loud and clear on this issue.

Whether they’ll do much about it remains to be seen. A later exchange between MISCC members Pat Fratangelo and Carla Williams raised doubts. Fratangelo runs a community-based service agency for people with developmental disabilities in Syracuse. Williams works in the Department of Health (DOH)’s Long Term Care division, and was introduced as “covering for” that division’s head, Mark Kissinger. DOH Commissioner Daines has now missed two MISCC meetings and this time, a third-level staffer came in his stead; this may be a signal that DOH isn’t taking this very seriously. Referring to the apparently successful efforts of disability and healthcare activists to kill the managed care “mega-waiver” proposal that DOH cooked up under Pataki, Williams said the state is left with a lot of narrowly-defined Medicaid waivers that limit access to services to specific groups. Fratangelo pointed out that different waivers offer significantly different services, so despite DOH claims of “double dipping”, people with disabilities should be able to get services from more than one waiver. Williams responded that DOH would “look at that” but she was not sure what could be done given the “restraints” the waivers operate under.

Fratangelo was right; using services under two or more waivers does not automatically constitute Medicaid “double dipping”. But the state can apply to the feds to amend its waivers to eliminate such concerns, or it can drop the whole waiver approach and take advantage of changes made to federal Medicaid law in 2006 to offer a full range of State Plan community-based services to all Medicaid recipients. A managed care “mega-waiver” isn’t the only possible solution. Williams didn’t seem to understand that the MISCC’s mandate is to make state agencies remove “restraints”—indeed, to make any changes necessary—to achieve the goal of adequate levels of service in the most integrated settings. If nobody in DOH understands that, then we’ve got a real problem.

Much time was spent having the state agencies identify “stakeholder” groups that will advise them as they develop action plans for implementing the MISCC’s 2006 report recommendations. Jones Ritter emphasized that Spitzer wants “accountability”. As we’ve reported, those recommendations are vague and non-binding; we’d rather see the MISCC replace them with detailed binding directives. That would provide accountability for sure.

In any case, most of the state agencies already have advisory groups, though some of them have few or no members who are people with disabilities who use their services. OMH Commissioner Michael Hogan complained about having to deal with “one more advisory group” and claimed that his agency was already working toward goals similar to those of the MISCC. Despite the high regard in which some mental health activists hold him, his attitude suggested that he doesn’t like working in concert with other agencies or under centralized supervision. OMRDD said it would stick with the Self Advocacy Association of New York State, which is not an independent advocacy group but rather an organization that depends on OMRDD for significant funding and which calls itself “part of the OMRDD system”.

The MISCC Workgroup on Implementation’s task was to develop a process by which the agencies will show accountability for carrying out MISCC recommendations. The main point in this workgroup’s report was that the agencies won’t be expected to provide any implementation plans until October 2008. Given the change in administration, that seems realistic. But it appears that the agencies are going to be allowed to come up with their own plans without direction from the MISCC beyond last year’s vague recommendations.

The new Housing Workgroup’s report highlights included a long video about the need for accessible affordable housing produced by the state Division of Housing and Community Renewal, and the conversion of a downstate adult “home” to supported living for people with mental disabilities. The video was well-done and prominently featured the activist point of view. However, it was too long to be a TV commercial, and it’s unclear who the intended audience is or what effect it can have. And granted, affordable housing of any kind is scarce downstate, but replacing a neglectful segregated program with a more service-intensive segregated program isn’t much to crow about.

Mike Burgess, the Director of the Office on Aging, brought a welcome note of frankness to his report on the “Point of Entry” (POE) program—an effort to set up a single central clearinghouse for unbiased long-term care service information in each county. Advocates are suspicious that this plan will strengthen county control over funding. Burgess pointed out that the effort is only as good as county government’s willingness to cooperate; he said that several of them simply aren’t, and there doesn’t seem to be any effort being made to compel them.

After the reports came a brief public comment period. Bruce Darling and Chris Hilderbrant, both of ADAPT and the Center for Disability Rights in Rochester, pointed out that the national model that is being followed for the POE doesn’t work well with people under age 60. They also reported that despite Darling’s longstanding expertise and experience in long-term care issues, and his recognition nationally and from the Spitzer Administration for it, he has been excluded from the POE process by his home (Monroe) county officials, perhaps because he brought to DOH’s attention the county’s refusal to obey state Medicaid law and offer personal care services. Burgess said Darling “should be” on the county advisory committee and that he’d do what he could to make it happen.

Much of the MISCC’s detail work is done by its committees. Perhaps video, or preferably, minutes, from them would show more action. However, all we have is the July 16 video. It shows that there is still lots of bureaucratic inertia in the state agencies, that the ability of non-agency members to influence the proceedings is limited, and that there’s a danger that the MISCC will merely tinker around the edges of the status quo instead of fulfilling its historic mandate for major systems change. We hope we’re wrong. Only time will tell.

More Legislative Fallout

In the weeks following passage of the state budget but before the legislature adjourned, a number of disability-related bills passed, some of which were signed by the Governor and one of which he vetoed. Some them merit separate articles. Others are summarized here.

Modest improvements were made to the state’s regulations for managed care providers. These include limits on the circumstances under which managed care plans can refuse to pay for services that they have pre-approved, and a requirement for an external review when plans deny access to out-of-network services.

Improvements to Medicaid eligibility requirements included a law clarifying that income from special needs trusts for people with disabiliities is not counted when determining eligibility, and new rules that suspend instead of terminate Medicaid eligibility for people while they are in prison, so that Medicaid can be restarted as soon as they are released.

Also passed and signed by the Governor was a “People First” language bill. It requires official publications produced by the state to refer to “people with disabilities” rather than “the disabled”, and to avoid negative phrases such as “afflicted with” or “suffering from” some disability or condition, as well as the notorious “confined to a wheelchair”. Pataki had refused to sign this bill. This is nice, but STIC has always maintained that negative attitudes are linked to disability, not the words used to describe it. Changing the language changes nobody’s attitude; instead, over time, the new language takes on the same old negativity. Attitudes about disability will change only when the majority of people with disabilities are publicly seen to be effective contributing members of society.

An item that the disability community has worked on for many years, and which would contribute to that goal, is the “Public Accommodations” bill. It was passed by both houses this year. The bill would add to the state’s Human Rights Law the ADA’s Title III provisions that require physical and program accessibility in many private businesses and not-for-profit agencies that are open to the public. As we went to press, Governor Spitzer announced that he’d signed it. This is a great victory.

An item that slipped under the radar was a bill to establish a “cash & counseling” demonstration project. “Cash & counseling” is a model for providing community-based support services, especially attendant services, wherein an eligible person gets training in how to hire and manage providers, and then is given control of the money to purchase the services. The bill passed this summer was vague; it said only that the recipient must have a service plan and ordered the state Department of Health to come up with regulations. The result could have been anything between a real cash & counseling program where the recipient has full control to something like the OMRDD’s botched Self Determination program where the recipient has control only “on paper”. Governor Spitzer vetoed it, apparently because he doesn’t understand the concept. He claimed that the state’s CDPA program is already a cash & counseling program, which it is not. CDPA participants have no control over funds or how they are spent. He did say that he’s asking DOH to offer a demo program to apply the CDPA model to other community-based services, such as home modifications. This also would not be cash & counseling, though it is interesting.

Pre-School Education Task Force

by Sue Lozinak

There has been a great deal of action lately in Albany surrounding preschool special education. A Preschool Task Force has been commissioned by Governor Spitzer to investigate the issues and report on their findings in October. The preschool system can be difficult for families to maneuver. Service coordination that is available through the Early Intervention program is discontinued when the child transitions to preschool. There can be a lack of available providers and evaluation sites. There is often not enough support available for families who are looking for inclusive settings for their children in typical preschools. In short, there are not sufficient opportunities to choose programs that benefit the child and family. The Preschool Task Force was appointed to address these and many other issues concerning children with disabilities aged three to five.

A temporary committee was established that meets monthly in Albany; it consists of appointed members that include a wide variety of stakeholders. Members are from the counties (which pay for services), school districts (which play a role in making decisions about services), and providers of special education services. It also includes representatives of state agencies that fund and oversee services.

All task force meetings are open to the public and the meeting minutes are posted on the VESID website: Three work groups currently meet between each monthly task force meeting to address issues in: Transition and Least Restrictive Environment; Rate Setting; and Delivery Systems. Since public comment has not been accepted at the meetings, regional roundtable sessions were held in six locations across the state to elicit input from the community. Parents of children who currently receive preschool special education services were especially encouraged to attend and share their opinions.

At the roundtable discussions, three stakeholder groups were run concurrently: families, service providers and funders/decision makers (county and school district representatives). The topics discussed in each group included transition from Early Intervention into Preschool Special Education, options for the setting where services are provided, and funding issues and their impact on the availability and delivery of services. The roundtable format allowed members of the public to meaningfully participate in the process by sharing their views with task force staff.

I attended the roundtable session in Syracuse and took part in the family discussion group. My son received services from Early Intervention and Preschool Special Education since birth to address delays resulting from his diagnosis of Down Syndrome. He is now seven years old and receives his services in the public school setting. The memories are still fresh for me surrounding the transition from one system to another and the confusion and uncertainty that accompanied that phase in our lives.

Having the opportunity to take part in the process as a parent and also as a representative of STIC’s Early Childhood Direction Center has been both personally and professionally rewarding to me. I attended the full-day VESID Parent Roundtable Forum at the State Education Department in Albany recently as part of the IDEA School-Family Partnership Learning Committee. This is a group of parents of children with disabilities, most of whom work in the field of advocacy in the various parent support centers across the state. We met with Dr. Rebecca Cort, VESID Deputy Commissioner, to discuss collaborative efforts between parents, school personnel and school districts. Plans are in progress to strengthen ongoing communication and use the resources that are available to families more effectively. These meetings will continue quarterly and provide a forum for our group to share the success stories and also the frustrations that are felt by parents of children with disabilities. I welcome any input from families regarding issues that they would like to see addressed in upcoming meetings. As the representative from the Southern Tier Region, I hope to highlight the issues that our area is facing and continue to keep parents informed of the process as it occurs.

Prisoners with Mental Disabilities: Out of the Box?

We’ve reported on several mental-health-related lawsuits filed against New York State in recent years, but we apparently missed one. In 2002, Disability Advocates, Inc., a federal protection-and-advocacy subcontractor, along with others, sued the state’s prison system to force it to stop putting prisoners with mental illnesses in solitary confinement and other barbarisms. Mental health professionals, and many in the corrections profession, agree that people with severe and persistent mental illness don’t belong in prison, but when they end up there due to inadequacies in the mental health and court systems, treating them punitively simply makes their illnesses—and their behavior—worse.

In April the lawsuit was settled. The state did not give up the right to use solitary confinement or other disciplinary measures with these prisoners, but it did agree to major restrictions on their use. Prisoners with mental disabilities cannot be placed in solitary until extensive reviews of their situation are conducted. Those in solitary will be allowed to leave their cells for 2 to 4 hours daily for therapy and treatment. The punitive “cabbage and loaf” diet given to prisoners in solitary can only be continued for 7 days for most prisoners with mental illness. All incoming prisoners will be screened for mental health issues and some who have them will be housed in special residential facilities.

Meanwhile, mental health advocates worked to get the “SHU bill”, which Governor Pataki vetoed last year, passed and signed. “SHU” stands for “Special Housing Unit”, a euphemism for solitary confinement, also known as “the Box”. The bill would establish a joint program between the Department of Corrections and the Office of Mental Health to provide residential treatment facilities for just about all prisoners with severe and persistent mental illness. This goes far beyond the court settlement’s mandate, but Spitzer initially resisted the measure because, he said, the settlement had solved the problem.

The bill had passed both houses by June but Spitzer threatened a veto. Negotiations continued, though, and produced a three-way verbal agreement between Assembly Speaker Silver, Senate Majority Leader Bruno, and Spitzer on a compromise version, which gives the Department of Corrections a bit more latitude to put truly dangerous prisoners in solitary. The Senate passed this version in July. The Assembly plans to return in September, and it is expected that they will pass the bill and Spitzer will sign it.

They Will Bear Any Burden ...

As we reported last time, advocates were trying to get a longstanding New York State special education lawsuit procedure restored after it was overturned by a 2005 Supreme Court decision. In August, after a tense waiting period, Governor Spitzer signed the Burden of Proof bill.

In the 2005 Schaffer v Weast decision, the Supremes ruled that parents, not school districts, have the “burden of persuasion” in special education disputes, at least in states that don’t have a law that says otherwise. That is, a school district is presumed innocent until proven guilty of violating special education law or regulations.

However, the NYS Education Department (SED) interpreted this to mean that parents must also have the “burden of production”—that is, they must meticulously collect and document facts in the case before they can argue that the school district should change its behavior, even when the facts are not in dispute. This greatly increased the effort and expense of presenting a case for parents, and caused many of them to give up trying.

In NY, standard practice before this decision had been to assign the district the burden of proof. but we had no state law requiring this that could protect against the Supreme Court’s ruling. Advocates got a bill passed by both houses of the legislature last year, but it was vetoed by Governor Pataki. This year, advocates tried again. They quickly got it through the Assembly, and, after more work, the Senate passed it this summer. Then school district lobbyists bombarded Spitzer with pleas to veto it. The outcome was uncertain for some time as advocates mounted a grassroots phone and email campaign. That campaign tipped the balance, and Spitzer signed the bill on August 15.

The bill clearly states that both the burden of persuasion and the burden of production will fall on school districts except in cases where parents want the district to pay for an outside placement. In those cases, parents must prove that the services offered by the school are inadequate and that the outside placement will meet the need more effectively. The new law takes effect on October 14, 2007.

A Votive Candle for Voting Rights

Although it still appears that New York will not meet a court deadline for providing fully accessible voting machines, there have been some illuminating developments.

June saw a public flap about an apparent attempt by Microsoft to weaken the state’s e-voting software escrow law. Two years ago NY enacted a law that requires electronic voting machine vendors to provide all of their software source code to the state Board of Elections to be held in “escrow”. The software would then be available for inspection should any question of hacking or other manipulation arise. The law requires not only the voting software, but the underlying operating system code, to be made available.

Microsoft, whose Windows operating system is used by some voting machines, and some vendors, such as Sequoia Voting Systems, sent their lobbyists in to pressure legislators to quietly loosen these requirements in the closing days of the legislative session. Their efforts failed when Bo Lipari, a statewide voting rights activist, publicized the lobbying push in his blog and organized voters around the state to contact their legislators.

The availability of electronic voting machines is crucial to providing access to voters with disabilities, and it hinges on the ability of all voters to trust those machines’ accuracy and integrity. So this is a significant victory for voting access activists.

Meanwhile, in a move that activists have sought for years, State Senator Bill Larkin introduced a bill that would put an end to Board of Election waivers that allow inaccessible polling places. The bill, S.6311, would also require all polling places in the state to be surveyed for accessibility and the surveys submitted to the Board of Elections.

The bill was in a Senate committee at press time, with no companion in the Assembly. Prospects for success are unknown, but this is the first time such a bill has been introduced in New York, and that’s progress.


Advocacy in Perspective

by Joy EarthDancer

It may be that I should not be admitting to this in public, but my stomach used to churn at the mere mention of the word advocacy. My hands became clammy, my body trembled, and my mouth was as dry as a cotton ball. Perhaps those symptoms are familiar to you, too?

Well, I have learned a thing or two about advocacy.

First, I discovered that I advocate every day. When I help someone to explain their needs in a clearer way, I am helping them to advocate for themselves. (“I am?”) When I tell a service provider what I see on a home visit that may influence the amount of service a consumer will receive, I am advocating. (“Well, I do that almost daily.”) When I call or e-mail legislators, the governor, or the president about an important issue, I am advocating. (“I knew that.”)

Recently, a consumer called with a problem that was so unfair I found myself wanting to help. And we did. It wasn’t me alone but a small group, including the consumer, who brought it to the attention of the legislators, who can and will enact the corrections needed.

I am changed forever. To be a part of the solution is directly participating in government. Because of our small group, laws will be passed to eliminate what was unjust. I feel powerful in a new way because I have seen what is possible. Advocacy is no longer a stone around my neck. Rather, it is just one of the many things that make up my day. To enjoy that wonderful surge of energy I felt, please join with us as we work for a better community. Adam Cybulski, our Systems Advocate, is the person to contact, at 724-2111 (voice/TTY).

GOOD NEWS: Medicaid Buy-In for Working Persons with Disabilities

by Carole Kramer

Are you a person with a disability who thinks about returning to work but is afraid that you will loose your Medicaid Benefits????

The Medicaid Buy-In, which has been in effect since July 1, 2003 in New York State, gives persons with disabilities the opportunity to go to work without losing their Medicaid eligibility or having to become eligible for Medicaid.

Requirements for eligibility:

  • Have certification of disability as defined by the Social Security Administration; and
  • Are at least 16 but not yet 65 years of age:
  • Are engaged in paid work (includes part time and full time work);
  • Have a gross income that may be as high as $52,092 for an individual (as of January 1,2007);
  • Have non-exempt resources that do not exceed $10,000;

Income Limits:
  • Individuals with countable income up to 250% of federal poverty levels (FPL) (i.e. gross wages as high as $52,092 in a household of 1 for the year 2007)
  • Monthly countable income for a household of one must be $2128 or less in 2007 (i.e. up to 250% of FPL). If monthly countable income is $1,277 or less in 2007 (i.e. up to 150% of poverty level), no premiums will be due.

Asset Limits:
  • $10,000 is allowed in countable resources (i.e. bank accounts and other liquid resources)
  • Exempt resources include: a house, a vehicle, certain life insurance policies, a limited burial reserve, and several other items

  • A moratorium exists on premium collection until the Department of Health completes the automated payment system. We have heard that the state’s 07-08 budget legislation substituted a flat-rate premium for participants with incomes above 150% of FPL and are awaiting confirmation. In the meantime, under the old system:
  • Premiums range from $0 to approximately $768 yearly (assuming all income is earned in a household of 1)
  • Premiums apply to all net income

  • Below 150% of FPL – No Premium
  • 150% - 250% — Premium of 3% of net earned income plus 7.5% of net unearned income

It is a great opportunity. There are also Social Security Work Incentives. For more information please contact:

Carole Kramer, Benefits Specialist (607) 724-2111 (voice/TTY)


Belated New Face

Cyndy Broeg
(Cyndy has been working here for over a year but for some reason we neglected to print her bio when she started. Here it is—better late than never. –Editor)

It is a bit difficult to exactly describe my position here at STIC since it is one that has been somewhat custom-created out of necessity as the agency has grown in recent years. Half of my position is “Medicaid Compliance Reviewer” for our Day Habilitation Without Walls and Consumer-Directed Personal Assistance programs, helping make sure that each program’s Medicaid requirements are fulfilled. The second half of my position is providing general clerical support to the very wonderful, ever-expanding by leaps and bounds, Consumer-Directed Personal Assistance program.

Having never worked in the human services field nor been exposed to the disability community before, it is quite a surprise that I find myself at STIC. My work experience has kind of been a teeter-totter between clerical support in the legal field or working with animals in either a veterinary or shelter setting. But I guess that lends to the “Isle of Misfit Toys” aura that STIC has, as we appear to be quite a collection of diverse individuals with matching diverse backgrounds.

It is a pleasure to know and work with such a great group of dedicated, hard-working and caring professionals.

CDPAP: Safe and Comfortable at Home

by Joy EarthDancer

STIC has offered the Consumer Directed Personal Assistance Program since 1998. CDPAP is a unique program in which people with disabilities can interview, hire, and supervise their personal assistance attendants. Workers can be friends, neighbors, certain relatives (but not all), or they may be people looking for work in the homecare field. When a consumer comes to us having no one to work for him or her, we help in two ways: we maintain a list of people looking for more work; and we also provide a listing service at New York Works.

CDPAP is a user-friendly program that is not a budget buster. We are proud to be able to offer a service that maintains folks in their own homes and that also affords the comfort and routine of having the same worker(s) on a daily basis—workers who often become a part of the family. CDPAP is also easy on the Medicaid budget, costing Medicaid less, in most cases, than other homecare options.

We serve over two hundred people in Broome and Tioga Counties and CDPAP employs nearly 400 personal assistance workers. Although we did not set out to affect the unemployment rates, we clearly are putting people in meaningful jobs where they build skills, earn a salary with benefits, and feel good about the work they provide in the community.

There is an another type of homecare service on the horizon here at STIC. Very soon, STIC will be offering Private Pay Personal Assistance Services. This new program targets folks who do not qualify for Medicaid and who want to select and supervise the worker providing their home care. Through Private Pay Personal Assistance Services (PPPAS), consumers will pay for workers’ hours and STIC’s overhead. STIC will be the employer of record for tax withholding and benefits purposes only, providing an incentive for long-term retention. Although we are not quite ready to begin, you may call Joy EarthDancer at 724.2111 (voice/TTY) for details.

Both CDPAP and PPPAS fit perfectly into STIC’s mission statement that says, in part, “We provide assistance and services to people with disabilities of all ages to increase their independence in all aspects of integrated community life.”

Lights Nights Highlights

by Maria Dibble

STIC is honored to dedicate our 2007 Hometown Holiday Light Festival to the memory of award-winning cartoonist Johnny Hart and the many contributions he has made to our community. From his involvement with NASA, to his support of many charities in the Greater Binghamton region, he touched the lives of tens of millions across the nation with his humor and generosity.

Due to the kind assistance and support of the Hart family, this year our light festival will feature a custom-designed display of Gronk, a 17-foot by 24-foot animated dinosaur, one of the BC cartoon strip characters.

Open daily November 23 through December 30, from 5:00 to 9:00 pm, this drive-through theme park will be located at Otsiningo Park in Binghamton. The 2007 show promises to be our biggest and best yet, with dozens of light displays (many old favorites, as well as some exciting new additions). We are incorporating a fairytale theme into the show this year, including the Three Little Pigs, Pinocchio, Hey Diddle Diddle, Jack and the Beanstalk, and more.

The price will be the usual $8.00 per car or SUV, except for our Drive for Five special every Monday evening when admission is only $5.00. Proceeds will benefit STIC and the renovation of our East Frederick Street building.

Mark your calendar and plan to visit this fun and entertaining event. The kids will love it!

STIC Expands to Meet Demand to Beat the Band

by Maria Dibble

I’m very pleased to announce that STIC is adding a couple of new programs and expanding some existing services this fall. All of the positions are targeted to begin in October.

We will hire another full-time peer advocate to supplement the two full-time peer counselors we already have. We can’t seem to keep up with the demand for this service, but we hope this will go a long way toward meeting the needs of people with disabilities. Peer counseling is at the core of the Independent Living Philosophy and we are glad to have the funds to grow in this area.

Currently, our Education Advocate works only 14 hours a week and has a waiting list of people requesting services. We will double her hours to 28, which we hope will at least make a dent in the demand. Christine Delany will continue to provide this service.

Many of you are probably familiar with our Traumatic Brain Injury Regional Resource Development Center (RRDC). Well, we will be adding two new RRDCs to our STIC family, serving people who are eligible for the recently approved Nursing Home Transition and Diversion Waiver. The two RRDCs will serve two different regions, one being the Southern Tier Region that includes Binghamton; the other is Syracuse and surrounding counties. Together they represent a large chunk of southern and central NY. People to be served will be those living in nursing homes who wish to move out (and who don’t qualify for other waivers), and individuals living in the community who are in danger of, or eligible for, nursing home placement. We’ve worked long and hard for this waiver and we are thrilled that it is finally becoming a reality. Al Jennings will oversee all three RRDCs and we’ll hire about a half dozen new employees to staff the programs.

Our Consumer Directed Personal Assistance (CDPA) program is also growing rapidly and it is time to add a new position to keep up with demand. The program currently serves over 200 individuals with approximately 350 Personal Assistants.

Finally, we will add staff to our fiscal and human resource departments to ensure that our growth doesn’t outpace our ability to maintain quality services.

We are busily planning some minor renovations to our current facility to house these new folks, but it is fast becoming a space crisis at STIC. It is hard to believe that we moved into this building only 11 years ago, and that we are bursting out at the seams.

So what is happening with our renovation project for our East Frederick St. building, you may ask? We are at the point of negotiating a price for the purchase of our Prospect Avenue building with the County. Once we’ve agreed on a price, we will be able to go to the bank and secure a construction loan/mortgage, while at the same time going out to bid for the renovations.

Of grave concern is the fact that four years have passed since we bought our East Frederick St. building, and the initial projected cost of the renovations was about $2 million. Now, with the war in Iraq and the rising cost of petroleum and most every type of building material, the anticipated cost is about 50% higher than the original estimate. So we are busily trying to raise more money, while at the same time developing alternate renovation plans to try to cut our costs.

I’ll keep you posted as the project progresses.

Community Programs

Save the Date

Autism and First Responders Training
Family Members Sessions

by Marci Germond

The Broome Developmental Disabilities Services Office has received a $10,000 grant funded by Senator Libous’s office to provide training for first responders, police officers, fire fighters and EMTs on the methods to use when serving persons with autism, and characteristics of/behaviors exhibited by this population. There will also be training for families that have children with autism on managing risks for their family member, both at home and while traveling.

The speaker will be Dennis Debbaudt, a former Detroit police officer who is also the parent of a son with autism. He is a national expert in the field, having done presentations on the topic over the many years he has been retired from the force.

There is no charge for the presentation. Broome Developmental’s registration deadline for these presentations was September 14. Possibly, though, they may accept late registrations if you don’t care about receiving the hand-out materials. Contact the Broome Developmental Services Staff Development office for more information.

Binghamton Area Parent Presentation
9:00 – 11:30 AM
Binghamton Regency
Owego Area Parent Presentation
1:00 – 3:30 PM
Owego Treadway
Oneonta Area Parent Presentation
9:30 – 12:00
Oneonta Holiday Inn

Child and Family Clinic Plus Program

by Rob Russell

The Child and Family Clinic Plus Program is a prevention and early intervention initiative in direct response to youth mental health issues cited in the President’s 2003 New Freedom Commission on Mental Health report, Achieving the Promise: Transforming Mental Health Care in America. The Clinic Plus program is funded by an OMH grant and is the single largest state investment to date in youth mental health services. The Clinic Plus model is aimed at reducing the number of untreated childhood mental health disorders in order to avoid health conditions that can lead to school failure, family conflicts, drug abuse, violence, and even suicide.

The Clinic Plus program significantly expands services at the Broome County Child and Family Clinic and will include a new capability for in-home mental health service. New staff hired include: three full-time Licensed Clinical Social Workers, one full-time Intensive Case Manager, one full-time Psychologist, one part-time Clerk and one part-time Psychiatrist. The program provides a county-wide approach to early recognition and screening of “mental wellness”, using criteria as reliable as those used to screen for general medical conditions.

This effort is made possible through collaboration between the Broome County Mental Health Department, City of Binghamton School District, Broome-Delaware-Tioga BOCES, and the Department of Social Services.

The initiative will target students in 5th. through 8th. grade, and foster children in 5th. through 12th. grades. Consent forms for participation along with program information flyers will be available at kick-off presentations, followed by mailings to the homes of prospective program candidates. Given the receipt of parental consents, approximately 3,800 students are targeted to be screened at school sites using The Strengths and Difficulties Questionnaire (SDQ). Students unable to attend screenings at school will be screened individually at home or at a DSS Foster Care office site. The SDQ is a reliable, evidence-based, self-administered instrument designed to screen for emotional and behavioral disorders. It will be administered by a trained mental health professional. Language assistance will be provided to students/families who need help with interpretation.

It is anticipated that a percentage of the targeted population will be identified for a comprehensive assessment. In such cases, parents will be notified of screening results and encouraged to continue in the referral process. All subsequent evaluations will be done by a NYS Licensed Clinical Social Worker (LCSW) who will use a range of diagnostic and psychometric tools for the mental health assessment. The tools will be limited to those considered valid in the field of mental health and will include, but not be limited to, the Beck Depression Scale, Connors Rating Scale, and Child Behavior Checklist. When it is not feasible for individuals to meet at the clinic location, arrangements will be made to do the comprehensive assessment in the student’s home or DSS site. Treatment recommendations and/or referrals will be determined by a multidisciplinary team with the psychiatrist present. The LCSW and Intensive Case Manager (ICM) will then meet with the client and family to manage and guide recommendations and referrals, as appropriate. Throughout this process the ICM will maintain contact with the client/family to monitor needs and ensure delivery of services.

Screenings are projected to begin in early Fall 2007.

NYS Accessible Housing Registry Is Now Online

by Michael Fagan

If you are a person with a disability looking for housing, or you are helping someone look for accessible housing, the Center for the Independence of the Disabled in New York (CIDNY)’s improved housing registry,, can help. The easy-to-use Registry supplies extensive information concerning affordable and market-rate housing throughout New York State, including information on accessibility features.

The Registry allows you to search for housing by:

  • Location, including by town, zip code and major cities
  • Income, age or disability requirements

Each development listing contains contact information for the site’s owners and property managers.

By entering some basic search criteria, people with disabilities can obtain information about:

  • Vacancies
  • Developments known to have accessible and affordable units
  • Active wait lists and lotteries

If you have any questions or need help in accessing the site, please contact

This project is managed by CIDNY. Support comes from the NYS Division of Housing and Community Renewal and the NYS Developmental Disabilities Planning Council.


Fall 2007
Issue No. 88