MISCCing In-Action

by Darlene Dickinson

On January 26, 2009 disability rights advocates from around the state converged in Albany to attend a meeting of the Most Integrated Setting Coordinating Council (MISCC). The MISCC law was passed seven years ago to create a statewide plan to eliminate the biases that force people with disabilities into segregated living, employment and recreational environments. The MISCC is comprised of several state agencies, including OMH, DOH, Office for the Aging, OMRDD, Education Department, Office of Alcoholism and Substance Abuse Services, Division of Housing and Community Renewal, Department of Transportation, Office of Children and Family Services, and Commission on Quality of Care and Advocacy for Persons with Disabilities. There are also nine appointed members representing people with disabilities, service providers and advocates.

In 2008 the MISCC released a report on barriers to integration of people with disabilities into mainstream society. Unfortunately, it did not include a real plan for eliminating institutional biases, fragmentation of services and/or the lack of interagency cooperation both at the state and county levels.

Predictably, the January meeting was more of the same. It began with representatives from each member agency talking about their accomplishments in the last three months. The collaboration between OMH and OASAS to create employment opportunities for people with substance abuse and mental illness was the only spark of true interagency collaboration. Most of the rest of the hour-and-a-half member discussion was a study of the inert gasses produced by talking heads.

The only point of real interest was the half-hour comment period during which people with disabilities and advocates got to speak to the Council. Among the speakers were three people who live in state-operated OMRDD facilities, two at Broome Developmental Center (BDC) and one at a group home. All three have lived at BDC on a Local Intensive Treatment (LIT) unit for several years, the longest being eleven. The LIT is a lock-down unit where freedoms are very limited and there are few opportunities for residents to receive individualized independent living skills training in the community. At present, there are few open doors leading from the LIT to the community. In most cases, people are given one option—group home placement.

When I began working with these three women two years ago, not one of them would have had the strength to stand before the MISCC, especially the Commissioner of OMRDD, and tell their stories. Though their voices were shaky their words split the air like lightening, their message rolling like thunder over the silence:

We do not want to live in the developmental center or in group homes where we are locked up, where we don’t receive training or learn the skills we need to live independently. We want to live where we choose to live. We want jobs in the community, not in segregated workshops. We want to make friends, have relationships, get married and perhaps have children. We want to be part of our community, not merely observers of it.

Right now, there is a wide, empty chasm between where these women are today and where they desperately want to be tomorrow. There are no services to train and support people living in developmental centers and group homes during the process of transitioning to the community in non-segregated settings, to teach them the skills they will need to survive, to introduce them to people who could provide natural support or to set up services that would begin the moment the person steps out of the institution into the community.

I have heard the litany of OMRDD’s commitment to community integration. I am aware of the wonderful services such as Individual Support Services (ISS) and Consolidated Support Services (CSS) available through the Home and Community Based Services Waiver. Here are the hard facts, folks. While a person who wants to leave the developmental center can receive service coordination prior to discharge, he/she cannot apply for the HCBS waiver until he/she leaves. The developmental center then has one month to complete the application packet and send it to the DDSO. Once there, the application can take several weeks to be processed and approved. Although the service coordinator can request a range of services for a person, they may not be available and, if there are open slots, there is likely to be a waiting list. Meanwhile, the person is left floundering without any OMRDD support and is, therefore, destined to fail.

What about people with both developmental and psychiatric disabilities? OMRDD does provide some mental health services such as medication management and psychological evaluations. What they don’t offer is the range of services in the community that are available from OMH. On the flip side, OMH does not offer services tailored to the needs of people with developmental disabilities. Too often these entities try to pigeon-hole people who don’t fit neatly into one system or the other. In the ensuing “hot potato” game in which neither OMH nor OMRDD wants to claim responsibility for providing services, there is only one loser, the person with a disability. Does this sound like interagency collaboration to you?

My criticisms of the MISCC and the member agencies serving people with developmental and/or psychiatric disabilities may seem harsh. They are, however, based on the frustration that the people with disabilities I serve, my co-workers, and I experience every day when attempting to access them. The current system of service delivery for all people with disabilities has failed us. Like you, we are complex individuals with unique desires, dreams, wishes and needs.

When I first tried to access the mental health services covered by my insurance the person processing my claim called my doctor and informed her that there are plenty of free services available to blind people and that I should look into those before asking the insurance company to pay for mental health services. Dumbfounded, my doctor explained to the person on the phone that my need had nothing to do with blindness.

Sadly, this is reality for most of the people I serve. They are viewed through the narrow lens of diagnosis, not as whole people. Thus, we are left with the shards of a broken system that cannot be glued together. If the MISCC is going to effectively meet the challenge of eliminating institutional biases and integrate people with disabilities into all aspects of community life it will have to take a hard look at these broken pieces. Maybe it’s time to sweep up the mess and start again. People with disabilities want and need action. I challenge the MISCC to start working with Independent Living Centers and other organizations serving people with disabilities. It’s time they started asking people with disabilities what they want and need. We don’t need talking heads. We need a single point of access to services for people with any combination of disabilities. We need services that will help people like the three women who spoke from their hearts in Albany. WE NEED A PLAN!

(Editor’s note: At press time we learned that the women who spoke at the MISCC meeting were beginning to see concrete action on the local level to address their needs and wishes. This is very good news. We want to emphasize, however, that grease for their particular squeaky wheels is not close to being a sufficient response to the issues that have been raised; we still need a plan that addresses everybody’s needs—and one that does not involve building any more group homes.)

March 2009


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Courts Watch

Disability Advocates, Inc. v Paterson, Daines & Hogan

This federal District Court “summary judgment” ruling sends Disability Advocates, Inc. (DAI)’s suit, to force the state Office of Mental Health (OMH) to move people from adult “homes” in New York City into more integrated residential options, to trial. It is not a final decision, but the case has interesting aspects and it could go all the way to the Supreme Court.

Adult “homes” are congregate residential facilities for people with disabilities, ranging from 60 to over 350 “beds”. Most of the people in them have mental health disabilities. In 2002 several New York City “homes” were cited for neglect, allowing inmates to live in filthy conditions and go without food or water on upper floors without air conditioning in the summer heat, where some of them died. The worst facilities were transferred to new owners, and monitoring was improved and services increased, but adult “homes” remain crowded, segregated institutions.

DAI sued under Title II of the Americans with Disabilities Act, which forbids discrimination on the basis of disability by state and local government. The US Supreme Court Olmstead decision clarified that unnecessary segregation of people with disabilities by state agencies is illegal discrimination. DAI alleged that NY has not made good faith efforts to move adult “home” inmates to the most integrated settings appropriate to their needs as Olmstead requires.

DAI sued in 2003, under Governor Pataki and his DOH and OMH commissioners. “Discovery” took over 3 years. Eliot Spitzer’s new commissioners filed the summary judgement motion in 2007. The court got the full briefs in January 2008, and took more than a year to issue its ruling.

Summary judgement against DAI, requested on several points by Governor Paterson, and Commissioners Richard Daines of DOH and Michael Hogan of OMH, was denied. This means the judge felt that DAI produced enough evidence to support its position that a reasonable “finder of fact” could find in their favor. DAI sought summary judgement rejecting the state agencies’ “undue burden” defense, which was also denied, but that denial was based on a more narrow reading of the law, rather than on the evidence presented.

In fighting the suit, OMH made claims that are absurd on their face and that contradict information provided by its own officials and publications.

OMH said there is no evidence that people in adult “homes” are appropriate for the “supported housing” that DAI is seeking, and that supported housing only provides “minimal” case-management support. DAI countered that several OMH officials have said that between 33% and 65% of adult “home” inmates could be in supported housing and that an OMH survey of inmates found that over 39% of them could benefit from supported housing. OMH then said the survey was not conducted to determine supported housing eligibility and that only a thorough individual evaluation could make that determination. However, OMH claims the survey was part of its “Olmstead plan” to move people into more integrated settings. DAI also showed that OMH promotional materials, as well as testimony from OMH officials, indicated that supported housing services are individualized and range from limited case management to regular and frequent assistance to monitor health and safety, learn skills, and obtain employment.

OMH claimed that adult “homes” are “integrated” facilities, not “institutions”, whose residents are free to come and go as they please and interact with nondisabled people in the community. DAI pointed out that only people with disabilities live in them, and that in the facilities covered by the suit, between 25% and 100% of the inmates have mental health disabilities. They also showed that life there is institutional in character: inmates can’t choose their roommates; they must eat meals at pre-set times, stand in line to get medication rather than manage it themselves, and get special permission to have guests in their rooms and can’t have overnight guests; they don’t have keys to exterior doors and are locked out if they don’t return before a curfew. Large numbers of inmates rarely leave the facilities and few have meaningful relationships outside. And OMH’s own website describes adult “homes” as “institutional settings” in which people are “stuck”. The judge said that the extent to which adult “homes” are integrated or segregated can be decided at trial, but he emphasized that Olmstead requires states not just to place people in some form of “integrated” setting, but to move them to the most integrated setting appropriate to their needs, where they can interact with nondisabled people “to the fullest extent possible”.

The state claimed that DAI did not have standing to bring this suit. The judge said that DAI is a subcontractor under the federal Protection and Advocacy for Individuals with Mental Illness Act, one of whose primary purposes is to take “legal” action on behalf of people with mental illness.

The state also claimed that it was not responsible for the behavior of adult “homes” because it doesn’t operate them, it only licenses and funds them. DAI, however, said it was suing the state for its failure to operate a system that enables people with mental disabilities to live in the most integrated setting, it was not suing adult “homes” for what they do, and the judge agreed.

The ADA says a state government need not avoid discrimination due to disability in its programs and services if it would require a “fundamental alteration” of those programs and services. OMH and DOH said moving people out of adult “homes” would be a fundamental alteration because it would create considerable extra cost and require them to put a priority on adult “home” residents that would result in other groups being unfairly treated. DAI showed that the state made a basic mistake in calculating costs by simply saying it would cost x dollars more per person to provide additional supported housing opportunities without subtracting what is now being spent to keep them in adult “homes”. The state also claimed that it only had to consider the OMH budget when determining relative costs, but the judge cited past cases to show that the state’s entire budget for medical and support services for people with mental disabilities, including Medicaid, must be considered. DAI also showed that OMH has given special priorities to other groups, such as people who are homeless and mentally ill, for referral to supported housing. The judge noted that both the Olmstead and the earlier Helen L. Supreme Court decisions found that a state can’t claim a fundamental alteration if it already provides the requested program or service to some people and all it’s being asked to do is provide it to more people who are already eligible for it.

However, DAI sought summary judgement on NY’s “fundamental alteration” defense because NY has no specific “Olmstead plan” with waiting lists of people seeking more integrated settings and procedures to ensure that they move off the lists in a timely manner. DAI relied on Third Circuit Court of Appeals rulings that Olmstead requires a state to have such a plan in order to make a “fundamental alteration” defense. But the District judge in this case correctly said that Olmstead only describes a formal plan as an example of a procedure that would probably be immune from suits. The judge summarized the evidence on both sides of the “fundamental alteration” issue, including NY’s claim that its policies and procedures in their entirety, including the Most Integrated Setting Coordinating Council’s activities, constitute an “Olmstead plan”. The judge said the validity of a “fundamental alteration” defense can be decided at trial, but his analysis suggested that the state would probably lose on that point. If the trial results are appealed, the express rejection of the Third Circuit’s reasoning by the District Court judge, who is in the Second Circuit, could land the case in the Supreme Court.

DAI originally sued the Pataki Administration, which did not support integration for people with disabilities. However, Paterson, Daines and Hogan, allegedly very pro-integration people, filed the summary judgement motion and are still fighting the suit. Two of their claims—the standing issue and the notion that adult “homes” and not the state itself are responsible for how the system works—are frivolous. This raises serious questions about their sincerity. Pro-integration officials should welcome losing this case because it would force the legislature to reallocate funds from segregated to integrated services. Hogan has said publicly that the money NY spends on community-based housing for people with mental disabilities is a “drop in the bucket” compared to the need. In a fiscal crisis, these officials shouldn’t spend money to fight a lawsuit that defends principles that they allegedly endorse, and which, as this ruling shows, they will likely lose.

Keeping Us Stimulated

The American Recovery and Reinvestment Act of 2009, the “federal stimulus bill”, was signed into law by President Obama on February 17. The package contains several items of interest to New Yorkers with disabilities:

Social Security Lump Sum

A one-time payment of $250 would be made to SSI recipients, disabled veterans, and seniors on Social Security. SSI is a small federal monthly subsidy that many people with disabilities with very low incomes get; most states also toss in an additional share to help make life possible for recipients. The lump sum is smaller than the current federal monthly rate, but it will be welcome, especially if Governor Paterson’s proposal to cut the state’s share passes (see NY State Budget: Take the Money and Run?).

Temporary Medicaid Increase

Health Facility and Program Reimbursements

The law includes items that either block previously-planned Medicare and Medicaid cuts, or increase funding, for hospitals, nursing homes, and some other facilities and programs. These are of interest principally because they can help reduce projected state budget deficits.

The law extends a moratorium through June 30, 2009 on some changes to Medicaid regulations governing reimbursement for case management, rehabilitation, and transportation services that the Bush administration proposed. We reported on these “seven ugly regulations” previously; last summer Congress forced Bush to accept a bill containing a moratorium on six of those items that will expire at the end of April. Also, the law states the “sense of Congress” that the federal Department of Health and Human Services should not issue any new regulations that have the effect of cutting reimbursements to states or providers for medical or rehabilitation programs.

Special Education

About $12.2 billion will be provided to the states over 4 years, with some $730 million for the current fiscal year and $5.7 billion for FY 09-10. We don’t know how much NY will get. The state has some discretion on how the money is spent, but most of it should go to local school districts. Some could come to Centers for Independent Living (CILs) like STIC for school-to-life transition programs.

Vocational Rehabilitation

About $500 million in funds for state vocational rehabilitation agencies are included. VESID, for example, could use its share to restore cuts to case services and supported employment that have been made in recent years, including fees for STIC’s supported employment program. Some federal Independent Living money is also included. STIC is not a federally-funded CIL, but we do get some of these funds for our participation in the IL State Advocacy Network.

Other Items

Some money is included for telemedicine, which may have some impact on the chronic upstate shortage of qualified psychiatrists and psychologists, especially for children. There are also provisions for extending private health insurance coverage for people who have lost their jobs, if states opt to do so. It seems possible that STIC could get some money for capital projects such as repairing the very bad sidewalks and curbs around our new building, but we don’t know for sure.

This money will be begin to be disbursed in March. By summer we should be able to get detailed information on how it’s being used at the Obama Administration’s new website:


Mandate Hate and Relief Beefs

The NYS Commission on Property Tax Relief was created by Governor Spitzer in January 2008. The Commission’s report, issued last December, has much to say about special education costs, and some of its recommendations may be enacted. They include eliminating minimum service requirements, removing the requirement for a parent advocate member on Committees for Special Education, and reducing the time limit for requesting fair hearings from two years to one.

VESID initially considered 11 special education “mandate relief” ideas and whittled them down to 5 that it sent to the NYS Board of Regents for approval. If approved, new regulations will be issued, and in some cases, new laws passed, before they can take effect.

However, it appears that one of the most controversial proposals, partial repeal of 2007’s “Burden of Proof” law, won’t be enacted. Advocates worked for two years to get a state law to protect against a 2005 US Supreme Court decision that ended the practice of placing the burden of proof on school districts in special education disputes. Although common sense suggests that someone who files a complaint should have to prove it, school districts used the decision to discourage families from filing even when the facts of the district’s wrong behavior were not in dispute. In October 2007, Spitzer signed the bill that fixed this problem. School districts, of course, had opposed it. The Commission got a lot of input from district officials, who claimed that out of some 6,000 complaints filed annually, only a bit over 800 result in a formal decision, and each formal hearing costs districts an average of $75,000. The Commission recommended that the burden of proof be applied to districts only when parents can show financial hardship.

VESID did adopt the Commission’s proposal to reduce the statute of limitations for filing a due process hearing request from two years to one. The 2004 version of the federal Individuals with Disabilities Education Act (IDEA) has a two-year limit but lets states set their own. In 2005 NY went for two years. Naturally, districts hated this. Opinions differ on whether cutting the limit will save money; parents may be more likely to file a formal complaint if a district drags its feet on informal settlement with a one-year deadline. VESID says districts “should” adopt dispute-resolution processes that produce results during the school year in which they began, but there is a vast gap between what VESID says districts “should” do and what it will enforce.

The Commission also wanted to eliminate minimum service rules for “related” special education services, such as the speech/language therapy minimum (the report says it’s 2 hours a week; VESID says 2 30-minute sessions) for students who use the service. The Commission wanted all such minimums dropped, but VESID proposed only to end the speech/language minimum, and only for kids who also get other “related services” that may aid speech or language development. VESID argued, reasonably, that kids should get the amount of service they actually need, not an arbitrary minimum. Advocates said, reasonably, that districts face pressures to cut costs and are likely to provide less service than children need as a result. This, of course, is a matter of trust.

The Commission observed that many NY State regulations exceed federal IDEA minimums. An example is NY’s requirement for a “parent advocate” member to be on the Committees on Special Education (CSEs) and Preschool Special Education (CPSEs) that develop children’s Individual Education Plans (IEPs)—if the child’s parents don’t object. Before 2004 IDEA required the advocates; the latest version dropped that rule but NY kept it. Districts say it’s hard to recruit these parents of kids with disabilities, who sometimes don’t show up for meetings. This messes up tight schedules, and wastes money when a substitute is paid to take a class so the child’s teacher can attend a meeting that is canceled due to a no-show advocate. Some people say parent advocates can be “ringers” who follow the district line on services and spending instead of advocating for the child’s needs. Others say they genuinely help parents new to the system. VESID plans to keep the requirement for the initial meeting only, to help new parents with the process; thereafter an advocate would be required if the parent requests one in writing 72 hours in advance. Parents can bring any relevant person they want to a CSE or CPSE meeting, such as a STIC Education Advocate or Service Coordinator, so this change isn’t likely to be harmful.

VESID proposed two other ideas that seem reasonable: One is to end a separate written parental consent requirement for participation in school summer programs; such programs, when needed, are in the child’s IEP, to which the parents have already consented. Another would remove a requirement for BOCES programs to file formal special education physical space plans every 5 years, while retaining mandates that BOCES and districts provide adequate space. Some people oppose these changes even though they’d have minimal effect; that, again, is a matter of trust.

The Commission wanted a lot more special education regulations loosened, but its report made two points that STIC endorses: First, lots of kids get “classified” as disabled who probably don’t have permanent irremediable conditions. The 2004 IDEA amendments let districts use a portion of special education money for intensive early intervention for children at risk for emotional, behavioral, or learning problems, and their families, in order to prevent permanent disabilities. NY’s recent “Children’s Plan” has a similar approach. Second, the Commission urged that general education be more tailored to the individual needs of all students, so more kids with mild disabilities can succeed in ordinary classes without being “classified”. Districts should do these things, not only because they save money, but because the special education system does not produce good outcomes for most children and they’ll be better off if they can stay out of it.

The Commission acknowledged the lack of trust between parents and disability advocates, and school officials—an observation echoed by some Regents at their January 2008 meeting—and noted that the only way to get real “relief” is to make the IEP process less adversarial. The report’s tone suggests that parents should relax and trust school officials. But the history of special education in NY shows that this would be foolhardy. While there are some good people out there, most districts exhibit a pattern of bad faith that includes dodging responsibility for making inclusion work, especially for kids with behavioral disabilities, and misleading and intimidating parents. Some districts publicly whine about unfunded special education mandates while spending huge sums on athletic facilities and other nonessentials. The State Education Department must step up to its responsibility to enforce special education laws and regulations. A zero-tolerance policy toward school district noncompliance is the only way to ensure that people with disabilities and their families can trust schools to do the right thing.

MISCC Faces the Music

The NYS Most Integrated Setting Coordinating Council (MISCC) held its quarterly meeting on January 26, 2009. Disappointed with the MISCC’s 2008 Annual Report and failure to respond meaningfully to numerous comments critical of it, disability rights activists brought over 100 people with disabilities and their friends and supporters to witness the meeting.

Our editorial in this issue (see MISCCing In-Action) gives a consumer perspective on the meeting. Indeed, the public comment period, though very brief, was the most valuable event of the day. Some other interesting things happened at the meeting, though, and still more occurred behind the scenes leading up to it. We’ll get back to the meeting in a moment.

In our last issue we reported on an “Individual Integrated Settings” bill (now the “Integration Bill”) that was passed by the Legislature but vetoed by Governor Paterson in part because, he said, it duplicated the MISCC’s work. Advocates made inquiries amongst the state’s leaders to find out what went wrong and how to fix it. One problem was that some government lawyers read the bill as creating a mandate for the state to give people with disabilities anything they want, and also as requiring state agencies themselves—as opposed to their subcontractors—to provide individual direct services to people; something not all of them do. The bill was also vague about what agencies would be affected, and it contained some technical flaws.

When a Governor’s representative was told that the bill’s intent is to ensure that agencies that provide disability-related services put integration first, and use segregated methods only as a last resort, when providing services that people with disabilities are customarily eligible for, the representative said, “That is something we definitely should be doing.”

The bill’s supporters saw that the MISCC could help implement it. The MISCC law already requires annual reports from state agencies on their progress in achieving the most integrated setting. The Integration Bill requires the agencies to ensure that steps toward integration are included in each person’s service plans, and to report annually on how many people have moved to more integrated settings. This could become part of the MISCC reports, and it would furnish useful data of the type the MISCC law demands. The Integration Bill requires participation and oversight by people with disabilities in each agency’s process for ensuring creation of these plans. The MISCC could help with this also, if it adds more seats for members with disabilities.

Meanwhile, STIC received a letter from Brian Daniels, Associate Commissioner of the NYS Commission for the Blind and Visually Handicapped (CBVH), about our MISCC report comments. We criticized CBVH’s ongoing reliance on “sheltered workshops”, by which we meant all forms of segregated employment programs for people with disabilities. Daniels claimed that people placed in “facility based manufacturing” programs operated by CBVH’s subcontractors are in “integrated settings” because nondisabled people work there. Daniels also promoted segregated job programs as a source of “pride” and social relationships for their inmates, and he said CBVH is “on record” as wanting the federal Rehabilitation Services Administration (RSA) to loosen its integrated employment outcome requirements.

STIC sent a detailed response to Daniels, and copied each MISCC member. We noted that RSA defines an integrated employment setting as one that can be “typically found” in the community, where people with disabilities interact with nondisabled people who are not there to serve them to the same extent that a nondisabled person would in a similar work setting. Most nondisabled people working in sheltered workshops are there to provide services to the inmates, and places that have been created primarily to give jobs to people with disabilities, whether they are “facility based manufacturing”, “call centers”, “affirmative businesses” or “supported employment enclaves” are not typical job sites. We also referenced significant criticisms of CBVH in a report issued by RSA in 2007, as well as CBVH’s own report that it performs poorly in achieving integrated outcomes as compared to other states’ “blind” voc rehab agencies.

This incident showed that the MISCC’s definition of “most integrated setting” isn’t clear enough. It reads: “a setting that is appropriate to the needs of the individual with the disability and enables that individual to interact with nondisabled persons to the fullest extent possible.” It should say, “a non-congregate setting that is appropriate to the needs of the individual with the disability and enables that individual to interact with nondisabled persons who are not paid to serve them to the fullest extent possible”.

In the days before the January MISCC meeting we at STIC and other disability advocates gained a better understanding of how the MISCC might help address these issues. We went to Albany to participate in the meeting with this in mind.

The meeting featured “budget updates” from each state agency. The idea was to show how agencies are doing something positive despite the climate of fiscal doom prevailing in Albany. Although some of the ideas were good, the time devoted to the presentations illustrated the MISCC’s lack of focus on long-term structural reform. It’s not the MISCC’s job to promote short-term responses to budget issues. The MISCC exists to create a new disability service system “for the ages”—one that’s so comprehensively well organized, and uses resources so efficiently, that it can meet all reasonable needs even in bad economic times.

Of greater value was MISCC Chairperson and OMRDD Commissioner Diana Jones-Ritter’s announcement of proposed changes to the MISCC composition and structure. She said that in response to public comment, she was trying to get new people appointed to fill the seats of non-agency members who don’t actively participate. She also showed some openness to adding more Council seats for people with disabilities. She then announced two new committees: one to look at data collection issues, the other to consider regulatory reform. The MISCC law requires the Council to develop several points of data that describe both the current service system and unmet needs. While some member agencies and the MISCC’s Employment Committee have made efforts to do this, they haven’t been coordinated and can’t provide the results the law requires. And disability advocates, including STIC, have said repeatedly that regulatory reform to remove bottlenecks is a critical aspect of the MISCC mission that has been neglected up to now.

The ensuing discussion revolved around whether every member agency needs to be represented on these committees. Ritter at first seemed not to realize that the only way to resolve eligibility and service gaps caused by conflicting regulations is to get all of the member agencies’ top “regulation gurus” in one room to hash them out. We recognize this would be a lengthy process, requiring many meetings and much research to be carried out between them. But it must be done.

Along with the many consumers who made public comments, STIC Executive Director Maria Dibble also spoke. She said the MISCC is required to produce a comprehensive long-range plan to reform the disability service system in all of its aspects, not just separate agency reports on isolated activities. After 7 years the MISCC still has no plan, and it has failed to view issues in a comprehensive, “top down” way. Critical parts of the system that cause serious problems, such as primary and secondary education, and the divide between state agencies and local offices and governments, have not been addressed. Dibble also mentioned the MISCC’s needs for a stronger definition of “most integrated setting” and more members with disabilities; the need to base eligibility for all services and supports on functional need, not age or diagnosis; the fact that “interagency collaboration” has failed and the only way to achieve the MISCC’s goal is to create a single unified disability service system through gradual restructuring and consolidation to eliminate duplication and conflicting rules and regulations; and the importance of the MISCC law’s mandate for t horough data collection and analysis to design comprehensive reforms.

The attention of all the MISCC members was riveted on Dibble and the STIC consumers who made public comments. Several seemed dumbfounded that people with their abilities were being held in segregated facilities. One member had tears in her eyes as some of them spoke. Still, it was hard to know at the time whether our efforts had real impact. In the weeks that followed, though, some evidence of the effect we’ve had appeared, both positive and negative.

On the positive side, we learned that the members are considering recommending changes to the MISCC law. We don’t know what those changes are, but we hope they will include both more member seats for people with disabilities, and a stronger definition of “most integrated setting”.

On the negative side, the people working on a better Integration Bill were shocked to learn that a revised bill had been submitted to a state legislator by lobbyists for sheltered workshop operators that are CBVH contractors. Their version carved out an exemption for “special employment programs” from compliance with the bill’s mandate to make integration the default option, and segregation the last resort. This showed that STIC’s message was being taken seriously by opponents of integration. We don’t think this version will get serious consideration, but we are now alert to possible further attempts to subvert the intent of this bill or a revised MISCC bill.

More (S)CHIPs in the Pot

SCHIP, the State Children’s Health Insurance Program, is a federal Medicaid program that provides health insurance to children whose family income is too high to qualify for ordinary Medicaid. NY operates it under the name “Child Health Plus”. Child Health Plus is the only source of medical insurance, and, therefore, of items like medications and assistive devices, for many children with disabilities whose parents don’t qualify for Medicaid and can’t get family coverage from their employers.

In an effort to move toward universal health coverage, in 2007 Governor Spitzer proposed to raise the Child Health Plus income eligibility limit from 250% of poverty to 400%. Then the Bush Administration issued new SCHIP rules that strangled attempts to enroll kids with incomes above 250% of poverty, to protect the health insurance industry from competition. Since Bush’s Centers for Medicare and Medicaid Services (CMS) did this without following legal procedures, the issue went to the courts. Congress also began trying to pass a law rescinding this change. Meanwhile, Spitzer and the state Legislature agreed on a 2008-09 budget that paid for the Child Health Plus expansion with 100% state dollars. We don’t think this was actually implemented though; soon afterwards new programs and expansions were put on hold due to the budget crisis.

Congress eventually forced Bush to sign an appropriations bill that also included a moratorium on the SCHIP rules change, and some other obnoxious CMS changes, until April 2009.

One of President Obama’s first acts was to issue an order rescinding CMS’s SCHIP changes. And in February he signed a new law that significantly expands the SCHIP program. More than 4 million additional children will be served nationwide over four years; the expansion will cost over $32 billion, financed mostly by a 61-cent increase in the federal tax on a pack of cigarettes.

For NY, this means Child Health Plus will get 65% of its funds from the feds to cover children with incomes up to 400% of the poverty level. The state can also get per-child bonuses for simplifying application and eligibility rules.

NYAIL 2008 Disability Priority Agenda

by NYAIL Staff (abridged)

Independent Living Center (ILC) Funding

  • Restore $1.2 million in 2008-09 budget cuts. Increase ILC funding to generate additional savings to the state and provide critical services to people with disabilities.

ILCs have conservatively saved NY taxpayers more than $9 in deinstitutionalization costs for every state dollar invested in ILCs, a net savings of over $110 million each year, by avoiding institutionalization of people with disabilities.

Health Care

NY should increase use of consumer-directed models for community-based long-term care to generate Medicaid savings and ensure people with disabilities of all ages are served in the most integrated setting.

People with disabilities want to choose and manage their own services, in their homes. Consumer Directed Personal Assistance (CDPA) saves Medicaid dollars because the reimbursement rate is nearly 1/3 less than traditional agency-directed services. Broadening use of CDPA will generate structural Medicaid savings and increase services in the most integrated setting. NY should:

  • Invest savings generated by CDPA in outreach, training and transitional services for people who wish to participate in CDPA. ILCs have demonstrated expertise in providing these services.
  • Set saving targets for counties to enroll or transition individuals to CDPA.
  • Amend regulations regarding payment to family members for attendant services to be consistent with federal regulations.

SSI Benefits / Poverty

  • Restore the 2009-10 Executive Budget proposed cuts to state SSI benefits to individuals and couples living in the community.

Most Integrated Setting

  • Ensure that all people with disabilities have the right to choose and receive services in the most integrated setting. Establish a presumption that community-based services are more appropriate than institutional or segregated settings. Require all state agencies to promote such integration through a plan and annual report. A.7277 of 2007-08


  • Shift state funding away from sheltered employment programs to more integrated options, with the goal of eventually phasing out State support for sheltered programs completely.

Currently 52,229 people are enrolled in segregated programs, including sheltered workshops, through OMRDD alone, with a total cost to NY of more than $1 billion. The cost per person in a segregated program, according to OMRDD figures, is $21,309 compared to $5,291 per person in supported employment. Everyone, regardless of disability, can work in a real job for real wages. Supported and other integrated employment programs save money and ensure people with disabilities are served in the most integrated setting possible.

  • Incorporate the housing provisions of Section 504 of the Rehabilitation Act into state law. A.6033, A.7138 and S.3956a of 2007-08

Housing developers often fail to obey Section 504 requirements 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 them and ensure that NY complies 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. A.6837a of 2007-08

“Visitability” is a movement to change construction practices so that new homes offer a few specific features that make them easier for people with disabilities 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 barriers have on people’s lives.

Civil Rights
  • Incorporate Title II of ADA into NYS Human Rights Law. A.2571 and A.6303 of 2007-08
  • Waive the state’s sovereign immunity to claims under the ADA and Section 504. A.7653 and S.6698 of 2007-08

Title II prohibits discrimination on the basis of disability in services provided by state and local governments. This bill would clarify the scope of protections, including the provision of services, programs and activities. Public entities would be required to make reasonable accommodations and people with disabilities would gain improved enforcement through the State Division of Human Rights.

  • Establish a definition and standard for physical restraint in public schools. Require documentation by schools and written notification to parents when restraint is used. A.1862 of 2008

Students with disabilities are highly vulnerable to inappropriate use of restraints. Physical restraints should be used only when a child poses an imminent risk of harm to self or others. A single, uniform standard for restraint of students in public schools should be created, including identifying the most effective, least restrictive, and safest techniques for modification of a child’s behavior, emphasizing de-escalation methods to avoid use of physical force. School personnel should receive training on the proper use of physical restraints and alternatives to their use.

Mental Health
  • Amend state Social Services Law Section 384-b to eliminate subdivisions (4)(c) and (6)(a-e), which permit termination of parental rights on the basis of mental illness or mental retardation.

Parents with psychiatric and intellectual disabilities are vulnerable to loss of custody and termination of parental rights due to a long-standing bias in state law. Since 1976, NYS Social Services Law has included as grounds for terminating parental rights, inability “by reason of mental illness or mental retardation, to provide proper and adequate care.” of a child. These disability-related grounds promote the discriminatory belief that parents with such disabilities are unfit to care for children. The safety of children is adequately protected by other provisions of SSL 384-b allowing termination based on a parent’s behavior rather than their disability.

Election Reform
  • Eliminate provisions in Section 4-104 (1-a) of the NYS Election Law allowing waiver of polling place accessibility requirements. Require polling places to comply with ADA access guidelines and ensure access surveys are conducted at all polling places. Require election workers to get mandatory training in disability etiquette and use of Ballot Marking Devices (BMD). S.6311 of 2007-08

People with disabilities must have the basic right as citizens to vote along with their families, friends, and neighbors and barriers to this right in NYS Election Law must be removed.

  • Require transportation service providers, such as taxis, limousines and shuttles, to purchase accessible vehicles or otherwise ensure that they have capacity to serve people with disabilities. A.8520 of 2007-08

The limited availability of accessible transportation is a major barrier for people with disabilities throughout NY, often leading to unemployment, inability to access medical care, and isolation from friends, family, and community participation.

NY State Budget:
Take the Money and Run?

This year’s state budget fight has two parts. Part One was getting more cuts to address a deficit in the current fiscal year, 2008-09. That fight is over; the 08-09 budget was cut by about $1.6 billion in January. Part Two is the battle to cover the projected $14 billion deficit for 2009-10.

Current Year Cuts

FY 08-09 saw four budget-cutting frenzies. The first was when the budget originally passed. At that time state funds for Centers for Independent Living (CILs) like Southern Tier Independence Center were cut by 2%, as were most other things. Then came Governor Paterson’s executive order to cut state agency spending, which caused a hiring freeze. This saved around $1 billion. The third cut, the state Legislature’s August special session, reduced some Medicaid cost-of-living (COLA) increases, various disability-related program allocations, and CIL funding again (this time by $484,000), for a total reduction of well over $400 million. Paterson wanted more cuts from the Legislature in November but they balked. However, by January it was clear that something had to be done. The disability community dodged most of that bullet; there were only two significant items:

COLA increases for “home care programs” were fully canceled. We aren’t sure if that applies to all Medicaid State Plan attendant programs (including Personal Care and CDPA) or just the Certified Home Health Aide program. They were also canceled for hospitals and nursing homes.

The “Bridges to Health” program, a joint NYS Office of Children and Family Services and DOH Medicaid Home and Community-Based Services (HCBS) waiver for children with disabilities living in foster homes, was delayed. Integrated supports for more kids is a good idea, and some disability advocates applaud Bridges to Health, but STIC has criticized the program. It seems to us that most of the children affected should already be eligible for other waivers; the fact that they don’t get the services seems more like an interagency turf issue than an actual service gap. We’ve also criticized NY’s piecemeal approach to filling service gaps; all of the HCBS waivers should be combined into one program under a single administration, with eligibility based on functional need rather than age and/or diagnosis. We hope this delay will give our leaders, especially in the Most Integrated Setting Coordinating Council, time to consider a more truly efficient and effective approach to expanding community-based services.

Most of the $1.6 billion in savings enacted in January came from re-arranging existing agency budgets; they took unspent money off the books of some agencies and applied it to deficits in other areas. Some additional revenue was raised by new taxes on insurance companies and by increasing SUNY tuitions. Some Legislative Member Items were cancelled, and new programs enacted this year were cut by 20% of the remaining unspent funds. Finally, an order by Paterson in October to hold all new agency contracts and capital spending “for review” was factored in.

Paterson also claims that the January agreement cut the projected 09-10 deficit by about $800 million. However, as he has said, the deficit is a “moving target” tied to the performance of the economy and especially of Wall Street.

STIC gets its funds from many state sources; we were hurt not only by the Independent Living cuts but by Medicaid COLA eliminations and the capital spending halt (we had included some new-building renovation costs in some of our contract budgets; those funds were withheld). The impact so far has been that we have cut our staff by approximately 1.5 full-time positions.

Fiscal Year 2009 - 10

Governor Paterson not only proposed big cuts in December for 09-10; he also called for a long list of new “sin” and “luxury” taxes. In February, President Obama signed a massive federal “stimulus” bill into law (see Keeping Us Stimulated). Since then, the struggle has been over how much of that law’s aid to NY should be applied to the deficit. That’s very much up in the air, so we won’t describe most of Paterson’s proposals in detail here, but some items do merit closer attention.

Paterson wants to cut Medicaid spending by about $3.2 billion as follows: defer one week of salaries and eliminate pay raises for state employees; cancel or cut COLAs again and/or change reimbursement formulas and/or cut rates for hospitals, nursing homes and all State Plan personal assistance services; convert 6000 high-cost nursing facility beds to lower-cost, but still segregated, “assisted living” beds; create “regional assessment centers” to set eligibility for all State Plan personal assistance, nursing facility, and assisted living services; tax Certified Home Health Care agencies and Long Term Home Health Care waiver service providers; cut Medicaid drug coverage by putting a limited set of anti-depressant drugs on a “preferred list”, requiring “step therapies”, dropping the “physician final say” rule in drug coverage disputes, requiring more frequent prescription re-authorizations, and reducing EPIC drug coverage; increase Child Health Plus and Medicaid Buy-In premiums; charge premiums to Early Intervention Program users; force more people into managed care (including some who are now “exempt” or “excluded”, via “demonstration programs”); and include personal care in managed care plans.

The “regional assessment centers” are interesting. If done right, they could end NY’s problem of uneven availability of integrated community-based supports for people with disabilities by taking control away from county governments. But the current proposal duplicates some functions already handled by the county-based NY Connects point-of-entry system, and the Regional Resource Development Centers (RRDCs) for the Traumatic Brain Injury and Nursing Facility Transition and Diversion Medicaid waivers. Instead, the state should merge the existing TBI and NFTD RRDCs, and increase their funding so they can both carry out the NY Connects mission and run the new assessment centers. Eligibility determination for all of NY’s HCBS waivers, not just the TBI and NFTD programs, should be part of the expanded RRDC role.

Paterson also wants to cut NY’s share of SSI benefits. SSI subsidizes people with disabilities at the lowest income levels. The money is mostly federal, but most states, including NY, add a share. The current federal amount is $674 for individuals, $1,011 for couples. NY adds $87 for individuals, $104 for couples, $23 for individuals living with others, and $46 for couples living with others. NY’s share has not changed in 20 years. The average NY SSI recipient’s income is 80% of the federal poverty level. Paterson wants to cut each state share amount by between $15 and $30 for June through December 2009, and then raise them a little bit, but not back to current levels, next January. These cuts only affect people living in the community; they don’t apply to people in segregated congregate facilities, which skim off most the payments to cover their costs.

Paterson wants to put off implementing the “SHU bill” until 2014, three years after its current effective date of 2011. This law was passed last year to make state prisons provide appropriate treatment services to prisoners with serious mental illness instead of putting them in “special housing units” (SHUs)—solitary confinement—in response to their disability-related behavior. He also wants to cut the number of prisoners to whom the law would apply in half.

Not everything proposed is a cut. Paterson wants to extend Family Health Plus eligibility for adults to families living at 200% of the poverty level, to public employees, and to young adults aged 19 and 20 who aren’t living with their parents. He wants to drop face-to-face interview, fingerprinting. and asset-test requirements for Medicaid eligibility, but only for “general” Medicaid, not “full” or long-term care Medicaid, which is what most Medicaid-eligible people with disabilities get. He also wants to increase public assistance (“welfare”) support payments.

He also wants to impose new taxes (so-called “assessments”) on insurance companies to pay for government health insurance programs; enact “sin” taxes such as a tax on soft drinks that contain sugar, and on tobacco products; and add or increase various specialty fees.

Paterson says the recession will last for years and the budget deficit is structural; so while we should use federal stimulus money where it will actually protect or stimulate jobs and economic growth, we must also reform Medicaid spending to ensure a sustainable future. Some of his “cuts” are actually diversions of Medicaid funds away from more expensive segregated and in-patient programs to less-costly integrated and outpatient services. Many health industry and union lobbyists, disability advocates, and members of the Legislature want the federal money to be used to restore virtually all of the proposed cuts, and some want to rescind the new taxes.

Details on the stimulus bill are fairly scarce, but it could probably cover about 70% of the state’s budget deficit in FYs 09-10 and 10-11. That leaves some $4 billion to make up in each of those years. And Paterson is right: the recession will last beyond March 31, 2011, and NY spends more than it should on many things, including Medicaid long-term care on a per-capita basis.

Paterson also claims that everyone is asked to share the pain of his budget proposals. But his budget does not distribute suffering evenly, and many items maintain or increase the long-term care system’s institutional bias. It is unfair to raise welfare payments for nondisabled poor people and protect rich people from tax increases while cutting SSI benefits for the poorest people with disabilities. The SSI cut’s uneven application, to people living in the community but not those in segregated facilities, is disturbing. Many of the rate changes and cuts for long-term care fall more heavily on community-based services. It is counter-productive to get relatively small cost savings by converting segregated nursing facility beds to still-segregated “assisted living” beds, when much greater savings and progress on integration could be gained by closing those places and using the funds to expand personal assistance services. Rather than risking the health of people with disabilities with enrollment targets for managed care programs that historically neither save money nor provide adequate care, we should set enrollment targets for Consumer Directed Personal Assistance services in every county in the state.

Although disability advocates say the Paterson Administration is more open and accessible to them, there is still a pattern of planning and making decisions without people with disabilities present and participating. New York State’s leaders cannot fully achieve the health care reform goal of more integrated services for lower per-capita costs unless they not only take phone calls from disability activists, but actually implement their recommendations.

Both the federal stimulus bill and an increase in the projected deficit from $13 billion to $14 billion came after Paterson proposed his budget. At press time, Paterson said he could negotiate some but not all of his Medicaid cuts. It was not clear that he only meant keeping measures to shift funds away from inpatient and segregated facilities and toward community programs. At times he didn’t seem to know that the stimulus bill won’t let the Medicaid increase be spent on non-Medicaid or general fund projects. The unfairness of his budget raised questions about his sincerity on disability issues, but he had an opportunity to put the people’s money where his mouth is. In the Legislature, the Democrat-dominated Assembly was gearing up to oppose just about all cuts, with the big health care lobbies and unions behind them, while the Senate, whose Democratic majority is much smaller, was relatively quiet. It seemed likely that the battle would be long and arduous, but hopefully we’ll be able to report the final outcome in our next issue.

OMRDD to Institutionalize More Children

Broome Developmental Services (BDS) is planning to build a new group home for 8 children with autism in the Town of Union.

Southern Tier Independence Center strongly opposes this project. If instead of spending over a million dollars to build a group home, plus hundreds of thousands more for staffing, those funds were used to provide more individual respite, residential habilitation, and behavioral intervention services, many more families could keep their autistic children in their own homes. If there are children whose families can not keep them, development of family care homes with appropriate services for these children would be better because, unlike group homes, family care provides a much warmer real-family environment for children.

This project is part of a larger OMRDD pilot project to build four group homes for autistic children around New York State to conduct research and demonstrate new techniques. But those techniques can be equally well applied in children’s natural homes or family care homes.

In recent years new OMRDD Commissioner Diana Jones-Ritter has promoted a new emphasis on community integration for people with disabilities in New York State, both in her work at OMRDD and as Chairperson of the state’s Most Integrated Setting Coordinating Council (MISCC). STIC was hopeful that with Ritter’s appointment of her MISCC point person, Carl Letson, as director of Broome Developmental Services, that new direction would be followed locally. But Letson told STIC Executive Director Maria Dibble that he would not consider stopping the project, which has been in the works for more than a year.

Group homes are far from the most integrated setting appropriate for children with autism, better options are available, and STIC is now gravely concerned that the changes promised to people with developmental disabilities in the Greater Binghamton Region and across the state won’t come.

Residents of group homes have told us they are just small institutions where they are unable to be independent or truly take part in the community. Although OMRDD calls group homes “community based”, that isn’t what the people who live there think.

The researchers heading up this project are heavily into “Applied Behavior Analysis”, a controversial “science” that emphasizes “aversive treatments” such as chemical sprays and electric shocks to control behavior. Why is the agenda of these “researchers”, whose beliefs are not considered best practices, being allowed to drive the provision of services for children with autism, rather than the wishes of the people who will be the “guinea pigs”?

Stories of Shame

STIC’s Civil Rights Advocacy Committee has been working on issues of abuse and neglect of children with disabilities in the public schools. As part of our efforts, we have collected stories of incidents that took place around the state within the last four years to show the widespread and serious nature of the problem. We’re printing a small sample of those stories here.

When it comes to addressing children’s disability-related behavioral issues, all of NY’s state agencies have clear regulations defining use of restraints as a last resort and setting forth the techniques to be used and the training to be received by those who use them. Only NY’s non-residential public schools are exempt from such rules and training requirements. And so it is not surprising that the worst abuses occur in those schools.

We want to emphasize that most of these incidents are not perpetrated by teachers, but by poorly trained and poorly-paid aides or other school staff. Everyone—teachers, aides, and students—will be much safer and happier in an environment where everyone understands the issues and has confident knowledge of how to handle incidents safely and effectively when they occur.

New York’s “Jonathan’s Law” was passed to address some of these issues in residential schools. We have nothing similar for the state’s non-residential public schools, and we really should not wait for another student like Jonathan Carey to die before we do something about this.

What can you do? If you have stories like these, please email them to: kend@stic-cil.org. Please include the year and zip code in which they occurred. We will edit them to ensure anonymity.

Zip Code: 13905

A parent got a phone call from the school nurse, who told the parent that their disabled child had been in a violent episode with a staff member. When the parent came to pick the child up for a previously scheduled doctor’s appointment, the child had several visible injuries, including: a large bruise that looked like a shoe print on the right side of the face running from the nose, across the cheek, and down to the neck; significant abrasions on the back of the neck from the hairline down to the right shoulder blade; and 4-5 inch scratches down the upper left arm and armpit. The doctor said the shoe print on the child’s face was caused by an individual using deep pressure to hold the child down, with enough force to potentially cause a broken neck. The incident was r eported to the police who met with the parent, the child’s service coordinator, and the service coordinator’s supervisor at the doctor’s office. The police were to contact the school to conduct an investigation into the matter. The parent wanted to press charges against the individual who did this to the child, but the school refused to release names to the parent. The case was referred to the county District Attorney, with no outcome reported. On the advice of its attorney, the school district hired an independent agency to investigate the incident; the investigators deemed the incident an “accident”.

Zip Code: 13760

A child with a disability was choked and dragged by the neck from the back to the front of the bus by a school bus driver. This incident was reported by other students who observed it and were also traumatized by the driver’s conduct. The driver was suspended for one day.

Zip Code: 13215

A child with a disability was put in an all-day time out. He was not allowed to leave the room to use the bathroom and he soiled himself. After this, the child was sent to a segregated BOCES program in a neighboring county. At this program, the child was spanked by the teacher and also complained about shoulder-squeezing by an aide. The family refused to send the child back to the BOCES program and had to fight to get temporary home instruction while waiting to go to a fair hearing.

Zip Code: 13732

A student with a disability was attending a summer program. The parent got a phone call from the staff, who told the parent to come and pick up the child because there had been an incident. When the parent arrived, scratches and bruises were visible on the child’s face. The staff told the parent that they had to “restrain” and “put a hold on” the student. The parent called the child’s service coordinator, who went to the home and found scratches and bruises on the child’s face, neck and back.

Zip Code: 13754

A witness reported that a disabled student’s one-to-one aide was seen to drag the student by the hood of the student’s sweatshirt down the hall and into a classroom. At the time, the student was refusing to go with the aide. The student’s parent had asked the principal, superintendent, and Board of Education for the child’s aide to be changed for the rest of the year. The school denied this request. The parent also requested copies of the child’s school records but the school ignored this request.

Zip Code: 13748

A parent was called at 1:30 in the afternoon by a school facility nurse, who said the parent’s disabled child had come to her complaining of a sore ear and red marks on the face and back that were the result of a restraint used in the classroom. The parent called the classroom teacher, who stated that she and another staff person had to restrain the child due to behavior related to the child’s not wanting to do schoolwork. The restraint was done at 11:30 am. The parent was not told what type of restraint was used, why it was used, how the child responded, where the red marks came from, or why, if this was done at 11:30 am, the student didn’t see the nurse until 1:30 pm. The parent reported the case to the child’s service coordinator, who filed an incident report. Investigators from the service coordination agency went to the home and took pictures of the marks and bruises on the child’s face and back. The next day, an agency investigator followed up with the facility principal, who told the investigator a conflicting story. However, the principal eventually changed her story to match that of the teacher. The principal told the parent that the restraint was totally appropriate and that the parent should not be getting the service coordination agency involved. The service coordinator tried to report the incident to the NYS Child Abuse Hotline but the report was not accepted due to it being a school matter. A law enforcement referral was made by the hotline staff to the NY State Police. A state police investigator spoke with the service coordinator and other agency staff, and with the parent. He tried to speak with the facility principal, but she would not return his call.

Zip Code: 13421

A school aide dragged a student with a disability down to a time-out room by the child’s feet. The aide also had an altercation with the student and threatened to kill the student. The student left school and ran down the street, begging for a cop. The police stopped the child and returned the child to the school where the assailant was. The parent picked up the child and observed facial bruises, fingernail digs in the middle of the child’s back, and welts on the face, hands, arms and back. The parent filed a police report, but it was ignored.


April Get-Together

People with disabilities are cordially invited to stop by STIC on April 23, from 3 - 6 pm. Staff would like to meet and greet people served by our agency.

Join us for this opportunity to get to know each other better. We’ll have refreshments!

of Southern Tier Independence Center
q Dr. Lou Brown
Friday, March 27, 2009
8:30 am - 3:00 pm
Helen Keller Conference Room
Southern Tier Independence Center
135 E. Frederick St. Binghamton

In the field of education his efforts have been focused upon service delivery models, curricula, and values that prepare students to “live, work, and play in the real world” (integrated society).

The cost to attend the workshop is $25, and will include lunch. Please call 724-2111 (voice/TTY) and ask for Jody for more information. Deadline to register is March 20.

Mailbox Full?

Do you sometimes get emails returned with the message that the mailbox is full or “over quota” when you email us? We feel your pain.

Now, please feel ours. Most of the time this happens because a few of you insist on sending us insanely large documents that fill up our mailboxes. The current record is a 10-megabyte PowerPoint file; but PDF files ranging between 2 and 5 megabytes are becoming more and more common. This is just not necessary.

First, PowerPoints have their uses as visual aids during live presentations, but as a means of conveying important information in written form, they suck. If you want to send us a bulleted list of something—well you know, that’s probably not going to be very helpful. Bulleted lists, like the “process diagrams” that are also currently in vogue, contain very little useful information. However, if you really must send us your PowerPoint bullets, please, export the text to an RTF or Word DOC file. We aren’t interested in the clip art or sound effects. The only exception to this rule is if we have a specific contractual obligation with you to use your PowerPoint presentation for some purpose. In that case, we’ll give you a special address to send it to.

Second, there is absolutely no excuse for a one- or two-page PDF flyer to be 2, 3, 4, or 5 megabytes in size. As we said in our last issue, please learn how to do desktop publishing correctly, or don’t do it at all. PDF files are a source of bloat in and of themselves, and they aren’t very accessible to blind people. You most likely started with a Word file that was less than 1 megabyte in size. Please, just send us the original Word file.

Third, please don’t forward PDF announcements to us unless we ask you to. We already receive most of the conference and event announcements that are relevant to us from the original source. We really don’t need you to forward them to us.

You may think we’re being picky, but STIC has to pay per megabyte for every bit of mailbox space we use. The total available space for all of our 30-plus email accounts is 1/10 of the space in a single free Google GMail account. Those huge GMail and Microsoft HotMail accounts are free only because they are supported by advertising. They also are not secure; did you know that Google and Microsoft read your email? Such accounts are not suitable for business communications among human service agencies.

So please, follow our simple rules regarding email attachments. You’ll get those “mailbox full” bounce-backs much less frequently, and we’ll all be a lot happier.

Thank you for your cooperation.

New Autism Spectrum (Continuum)
Disorders Support Group

by Bob Deemie

This group is for people age 15 or 16 and older who are either classified as High Functioning Autistic or Aspergers. Around the age of 15 or 16, and onward, the person’s life starts to change and they are going to be entering phases of their life with difficult challenges. As well, many services are set up for children, as they should be, but not many services are set up for those that are older. Also, there are no services, that I know of, that deal with the transition from the teenage years into adulthood. Plus adults’ services for those who are on the spectrum are not heard of often, except the institutional kind, as far as I know.

When it comes to things like gender, social skills and life experiences there is no restriction. This is because each person who is on the spectrum has their own set of skills and can bring something unique. It will be a good learning experience for each of the participants and they will learn to, hopefully, get along with one another.

The reason for including both men and women is because in a disability group known for not interacting with other people, the chance to interact with members of the opposite sex is not always possible. And even when possible it might not be in the most natural of settings.

Involvement in the group is limited to myself and the consumers. I want the setting to be as natural as possible and if parents or other providers get involved things will not turn out well. The participants will act in a different manner and the learning and growing process will be stunted. However this does not mean I couldn’t set something up for the parents if they wanted it. They would only need to ask and I might be able to do something for them.

The group meets at STIC. Contact me at (607) 724-2111 (voice/TTY) if you would like to participate.

New Faces

Danielle Amorese

I recently joined STIC in the CDPA department as a Medicaid Biller. I would like to thank everyone here for the warm and friendly welcome; I am very excited to become part of such a great organization. I look forward to meeting everyone here on the STIC team.

I am originally from the Whitney Point area and worked for United Medical Associates. I have recently moved to the Hillcrest area with my husband Steve and our ten year old daughter, Kaci. With a ten-year-old there is always something going on, but when I am not busy, I enjoy reading and being outdoors.

Parents Empowering Parents (PEP)

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

We meet the last Wednesday of every month at STIC.

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

Lunchtime PEP meets
from 11:30 to 12:30
135 E. Frederick St.,
Binghamton, NY

Please join us at any time.

RSVP is preferred to account for food.

Contact Thea Arnold at 724-2111 (voice/TTY) for more information.


For Sale: Wheelchair Porch Lift, 4' to 5' rise, max. capacity 550 lbs., $5,000 new, asking $1500. Like new condition. Please call Julie at (607) 748-7188.


Free Housing Registry

by (from CIDNY)

Introducing NYHousingSearch.gov, a FREE service provided by New York State to make advertising and searching for affordable and accessible housing easier and more efficient. Thousands of listings located throughout the state are just a click away, and it is always free to search and list. The service is also available through a toll-free, bilingual call center at (877) 428-8844. Representatives can assist with listings and searches and can even mail the results.

With this FREE service, you will be able to:

  • Search properties for FREE with a toll-free phone call or via the Internet.
  • See listings described in detail with pictures, maps, and information about nearby amenities.
  • Find landlords willing to modify units for accessibility needs.
  • View current vacancies and access lottery information and active waitlists.
  • Rely upon trained call center staff to assist in locating listings.
  • Search for housing by geographic area, type of housing needed, price, and accessible features.

Whether listing or searching for housing with accessibility features, age-restricted housing, affordable or market-rate housing, NYHousingSearch.gov can help.

NYHousingSearch.gov is a collaborative effort between the NYS Division of Housing and Community Renewal, DOH, and OMRDD. The site is maintained by Socialserve.com, a national non-profit provider of housing locator services. The Center for Independence of the Disabled of New York (http://www.cidny.org/) is under contract to assist with marketing NYHousingSearch.gov to the disability community throughout New York State.

Parent to Parent of NYS
Navigating the Special Education Maze

This training is designed for participants to learn about legal requirements set forth in the Parts 200-201 Regulation of the Commissioner of Education. Participants will learn how to use these regulations and understand that parents are equal partners in their child’s education. Parents will also learn effective communication skills on how to work with the CSE and other people in their child/children’s educational program.


Tina Beauparlant, Education Specialist
Andrew K. Cuddy, Esq., Special Education Attorney.

There is no charge for this workshop.

March 21, 2009
9:30 am - 12:30 pm
Registration begins at 9:00 am
American Civic Association, Inc.
131 Front Street, Binghamton

Pre-registration is required

Contact Donna Sperbeck
Parent to Parent of NYS
500 Balltown Road
Schenectady, NY 12304
Fax: (518) 393-9607

Tioga County Connects

by Tina Lounsbury

With the amazing improvements in health care, life expectancy has risen dramatically. Illnesses for which there were no cures 100 years ago are now cured by miracle drugs, and often without a hospital stay. We are living longer, healthier lives. But eventually disabilities and old age will catch up to everyone.

If you or someone you love, whether it is a child or adult with a disability or an older adult, is facing the prospect of needing care, help is available. The Tioga County Department of Aging (DOA) and the Tioga County Department of Social Services (DSS) have teamed up to streamline access to information about long-term care with a new initiative called NY Connects .

NY Connects provides free information and assistance on long-term care services (medical and non-medical support services needed to improve or maintain one’s health and or daily functions) in your community, including community based services, health care facilities, housing, medical, nutrition, transportation, and more. It will also let you know who provides these services nearest to you and how to get in touch with the service providers. There are a wide range of services available to those in need of long-term care that allow them to continue to participate in family and community life. Supportive services are also available to help caregivers cope with and understand their responsibilities.

If you or someone you love is facing long-term care issues and you don’t know where to turn, check out www.tiogacountyny.com. For more information on NY Connects and meeting your long term care needs, call the Tioga County Department of Social Services at (607) 687-8550 or (877) 882-8313 (toll-free) or the Tioga County Department of Aging at (607) 687-4120 or (866) 352-3680 (toll-free).


Spring 2009
Issue No. 94

MISCCing In-Action
AccessAbility Masthead
Courts Watch
Keeping Us Stimulated
Mandate Hate and Relief Beefs
MISCC Faces the Music
More (S)CHIPs in the Pot
NYAIL 2008 Disability Priority Agenda
NY State Budget: Take the Money and Run?
OMRDD to Institutionalize More Children
Stories of Shame
April Get-Together
Mailbox Full?
New Autism Spectrum Disorders Support Group
New Faces
Parents Empowering Parents (PEP)
Community Programs
Free Housing Registry
Parent to Parent of NYS Navigating the Special Education Maze Parent to Parent of NYS
Tioga County Connects