In July, 2003 the long-awaited Medicaid Buy-In went into effect. The Medicaid Buy-In lets people with disabilities work and earn a decent lower-middle-class income while paying a reasonable monthly premium for Medicaid. For those of us who advocated for more than three years to get this legislation passed, the implementation of the buy-in represented a huge breakthrough in allowing people with disabilities who need homecare to get jobs earning competitive wages without losing their services.

Unfortunately, an unforeseen oversight in both the federal and state Medicaid Buy-In laws will, very likely, cost one working woman her job, her home and her freedom. “Jane” (name and other details changed to preserve anonymity) has muscular dystrophy. She operates a home business with her daughter. Through the Buy-In Jane has been eligible for Medicaid, which pays for 32 hours a week of personal care. Without this service, Jane cannot remain independent in her own home or continue to work. In other words, Jane would be forced to enter a nursing home to get the services she needs. 

Why is Jane’s Medicaid being terminated? Because she turned 65 this year, Jane has reached the age cap for the Buy-In and is being forced out of it. Her monthly income exceeds the federal poverty standard by a significant amount. Without the special income exemptions of the Buy-In, that income makes her ineligible for Medicaid. In order to retain her Medicaid, Jane would have to “spend down” to the poverty level by paying her “excess” income back to Medicaid. In addition, she would have to eliminate the small savings she has in the bank. In short, Jane would have to quit her job, give up her stake in the business she now shares with her daughter, and live on a much lower income with the same expenses she now pays out. It’s not a matter of whether she, as a small business owner, can afford to purchase health insurance. The only health insurance that covers ongoing personal care is Medicaid. No Medicaid, no homecare. She definitely can’t afford to lose that. Jane is clearly caught in a no-win situation.

Right now, Jane is a tax-paying member of society who pays a premium for her medical care. As a business owner, she pays sales tax and other business-related taxes, as well as contributing to Social Security. As a home owner, she pays property taxes that support our schools and county infrastructure. The homecare she is now receiving costs the taxpayers less than $2,100 a month and provides employment for two personal care attendants. The lowest rate of Medicaid payment for nursing home care is approximately $3200 a month. When comparing the two scenarios—tax-paying business owner receiving care at less expense to the taxpayers versus more expensive long-term care to which the recipient has no way of contributing—the former is obviously the better choice. Unfortunately, the current age cap of 65 for the Medicaid buy-in eligibility leaves no room for the most logical scenario.

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Rookie Governor Eliot Spitzer’s first Battle of the Budget kicked up a storm that rivaled the nastiest tempests of the Pataki and Cuomo administrations. But when the dust settled, the cloudburst had been surprisingly brief, and the damage was found to be minor.

Spitzer’s initial proposal would have cut $1.3 billion from Medicaid spending, almost all of it in reduced subsidies to providers. The idea was to stop spending Medicaid money on things such as medical school for prospective doctors, and wage and benefit hikes for healthcare workers, that don’t directly benefit Medicaid recipients. Some of his ideas weren’t actually cuts; they were transfers of Medicaid funding from institutional to community-based programs, and from providers who don’t see many Medicaid recipients to those who do.

Early on, STIC successfully led activists statewide to get the most damaging proposal, closure of the Level I Personal Care program, rescinded. A few objectionable measures remained (see our last issue), but for the most part disability activists were pleased with and supportive of Spitzer’s initiatives.

Not so the lobbyists for hospitals, nursing homes, and health worker unions. They mounted a massive public relations campaign to portray Spitzer as trying to destroy New York’s healthcare system and put sick and elderly people out on the streets. Spitzer, in turn, spent millions of “his own” (actually, his campaign fund’s) money on a counter-campaign.

The lobbyists had more money than Spitzer, and it showed. The Democratic Assembly leadership began to buckle despite the fact that Spitzer is a member of their party. And Republican Senate Majority Leader Joe Bruno, who was facing an FBI probe of his dealings with campaign funders and no doubt welcomed an opportunity to look like a good guy, charged into the fray with both guns blazing. He started by trying to add between $1 and $3 billion (depending on whose reports you believed) to the budget beyond what he and Spitzer had agreed was available to spend. It got so bad that on March 14, according to the weekly email Update of Housing Works (a New York City AIDS activist group), “Bruno and Governor Eliot Spitzer teed off on one another in an expletive-filled shouting match that sent a Spitzer secretary fleeing for cover (according to Senate sources).”

But then the usual Albany thing happened. Behind closed doors, Spitzer and Bruno cut a deal that saved most of Spitzer’s Medicaid proposals in turn for a property tax rebate, more charter schools, and more state aid for wealthy school districts. Spitzer went on to get embroiled in a brouhaha over campaign finance reform while busily raising money for himself hand-over-fist, perhaps to make up for what he spent to promote his budget. And Bruno resumed his efforts to increase state spending, this time with another property tax rebate for seniors.

But at a March 13 rally, the day before the Spitzer-Bruno shouting match, Chris Hilderbrant of Rochester’s Center for Disability Rights (a CIL like STIC), had already said it all. As the Housing Works Update reported, “Under Pataki, we had to get arrested to try to make our point,” he said. “Governor Spitzer just gets it. For over a decade people with disabilities have been fighting to make our right to live in the most integrated setting a reality. In the Spitzer budget, we see the first steps towards achieving this goal.”

And now, the details:

Toward Universal Health Care Coverage

Progress was made on Spitzer’s pledge to work toward universal health insurance coverage for New Yorkers.

The Child Health Plus income eligibility level was raised from 250% of the federal poverty level to 400%. This could make another 400,000 children eligible. A new “premium assistance program for family coverage under a group health plan or any health insurance policy that includes coverage of an eligible child” will be created. This would enable employers to receive a subsidy to provide family health coverage, which is horrendously expensive, to their employees. Also, family health insurance policies will be able to cover unmarried children up to age 25.

Application and recertification procedures for Medicaid, Family Health Plus and Child Health Plus will be streamlined. DOH will use information already in the system for recertification and will require documentation from consumers only if a “material discrepancy” is found. Twelve months of coverage for anyone deemed eligible for Medicaid will be guaranteed. This ends the problem of people whose eligibility varies frequently (because their incomes do) losing Medicaid and having to re-apply.

Participants in the state’s Elderly Pharmaceutical Insurance Coverage program (EPIC) will be required to enroll in a Medicare Part D plan. EPIC will provide “wrap-around” coverage for drugs the Part D plan doesn’t cover, and will contribute an amount toward each participant’s monthly Part D premium cost, up to the “benchmark” (basic) plan premium set by the feds.

$100 million was appropriated to subsidize employers of 50 or fewer people who want to provide mental health insurance coverage to their workers. This subsidy is a requirement of Timothy’s Law, signed last December by Governor Pataki.

$200,000 was appropriated to pay a consulting firm to produce a study of further options for universal healthcare coverage.

Medicaid and HCRA Cuts and Redistributions

Despite early reports to the contrary, Spitzer largely got his way on his plan to redistribute Medicaid and Health Care Reform Act (HCRA) funds to ensure that real Medicaid beneficiaries, and organizations that serve them, receive most of the benefits. Only $356 million of his proposed $1.3 billion in Medicaid cuts were restored. Most but not all of the restorations involved payments to providers; some have a direct positive impact on Medicaid recipients.

Medicaid funding for Graduate Medical Education (GME) was cut from $82.7 million to $44 million, and HCRA GME funding was cut by $24 million. Recruitment and Retention (R&R) funds (salary and benefits perks for health workers) remain level but will be redistributed proportionally; the more Medicaid recipients a provider serves, the more R&R funds they get. The old formula was based on the size of the facility’s budget. Some HCRA and indigent care funding was redirected to focus more on hospitals that serve the most needy Medicaid recipients. An advisory committee including Senate and Assembly representatives was created to make recommendations for the Department of Health on further redirection of Medicaid funds.

Spitzer had wanted to reduce the 07-08 cost-of-living adjustment for hospitals and nursing homes by 75%; it ended up being cut by 25%.

He had wanted to make cost a factor when deciding what drugs to put on the state’s Preferred Drug List for Medicaid recipients, and he wanted to apply that list to EPIC participants. Both of these proposals were rejected.

Toward Community-Based Services

Spitzer’s first-year accomplishments on reducing institutional bias are less impressive, but do contain some bright spots.

In a major victory for disability activists, $2.5 million was appropriated to establish a housing subsidy for participants in the new Nursing Facility Transition and Diversion Medicaid waiver.

However, in order to get that program off the ground, the state’s spousal impoverishment/spousal refusal regulations are amended to conform to demands by the federal Centers for Medicare and Medicaid Services (CMS) that maximum income eligibility levels be reduced (see AccessAbility Summer 2006). But, the amendments will not take effect if the state can get CMS to drop its demands, which outcome we understand the Spitzer Administration will now pursue seriously.

The Centers for Independent Living (CILs; agencies like STIC) received a “poison pill” inside a funding increase. A total increase of $1.5 million was approved. However, only $500,000 was to be shared equally among existing CILs. The remaining $1 million was for three “new” CILs in Putnam, Herkimer and Sullivan Counties. The thing is, they aren’t new. They are branch offices of existing CILs, set up some time ago with federal money that lets “satellite centers” be funded separately. However, New York law defines a state-funded CIL as a stand-alone not-for-profit corporation with its own board of directors. These branch offices don’t meet those criteria, so if the appropriations truly were intended for new CILs, they violate the law. We don’t know if the legislators knew the story of “new” centers in unserved areas was bogus, but the CIL directors who approached them certainly did. Those directors acted despite the disapproval of NYAIL, the statewide organization that represents CILs (and to which these CILs belong). At press time there was a small chance that these appropriations would be redistributed. Meanwhile, the episode left a bad taste in the mouths of most CILs in New York State.

Rates for some community-based support services were raised, including a $10 million boost for the TBI Waiver, and increases for upstate homecare providers (including CHHA and PCA programs; we’re not sure if CDPA is included). This could help ease the chronic worker recruitment problem faced by these programs, if the programs apply the increases to worker salaries and benefits rather than to new office furniture or raises for executives.

The Medicaid Buy-In monthly premium was changed from a sliding scale to a flat rate. The sliding scale was costly to implement and didn’t bring in much more money. The new premiums, which apply to people with incomes above 150% of the federal poverty level, are $25 per month.

A “NY Connects” point-of-entry program was established to provide information on long-term care services, including community-based services, to medical consumers. At present, its use is voluntary, and so is not likely to have significant impact on reducing institutional bias.

A new Coordinating Council for Alzheimer’s Disease and Other Dementia was established, to carry out  interagency coordination and policy development.

Counter-Productive Moves

Medicaid funding was approved for 1,500 new assisted living beds. “Assisted living” is usually regarded as less restrictive than nursing home placement, but that’s not always the case. It certainly is not an integrated community-based option.

A $1.8 million increase was provided for air conditioning for adult “homes”, as well as $2.75 million more for the state’s adult “home” Quality Incentive Program. As we’ve reported, people living in these large segregated facilities have been neglected, sometimes to the point of death, over the years. Certainly improving living conditions for their inmates, who are mostly people with severe mental disabilities, is a good thing. But it would be far better to fund a program to increase peer-based support services and assistance to enable them to live in their own homes in the community.

Other Stuff

You may recall that Spitzer had proposed that the state’s segregationist Commission for the Blind and Visually Handicapped (CBVH) be dismantled and replaced by a new “Office for the Blind”. That didn’t happen. Instead, CBVH will get a new Executive Board much like the advisory board proposed for the new office (see our last issue). This board will review CBVH programs and make recommendations for improvements.

Earlier we mentioned new charter schools. The law establishing them requires that they make “good faith efforts to attract and retain a comparable or greater enrollment of students with disabilities ...when compared to the enrollment figures for students in the school district in which the charter school is located.”

One of the points that Eliot Spitzer emphasized to voters with disabilities during his campaign was the need for the state’s Most Integrated Setting Coordinating Council (MISCC) to create a real plan for compliance with the US Supreme Court’s Olmstead decision, which requires states to make ongoing effective efforts to ensure that people with disabilities who need support services receive them in the most integrated setting. Candidate Spitzer called the failure of the MISCC under Governor Pataki and former OMRDD Commissioner Maul to produce anything substantive an “abdication of responsibility” (see AccessAbility, Fall 2006).

On April 10 the MISCC held a meeting whose tone and content suggested that Spitzer was serious.

The first indication was the list of attendees. Of the ten state agencies that the MISCC law requires to participate, five were represented by their top officials (the Commissioners of OMRDD, OMH, and the Division of Housing and Community Renewal (DHCR), the Director of the Office for Aging, and the Chairperson of the Commission on Quality of Care and Advocacy for People with Disabilities (CQCAPD)). Among the other five agencies: VESID (within the Department of Education, and responsible for all disability-related services and programs in that department) was represented by its highest official, Deputy Commissioner Rebecca Cort; the Department of Health (DOH) was represented by Mark Kissinger, who is the Deputy Commissioner for that department’s new Office of Long-Term Care (and formerly Governor Pataki’s Deputy Secretary for Health and Human Services); from the Department of Family Services (DFS), the Deputy Commissioner who oversees the Office of Children and Family Services attended; from the Department of Transportation, the Director of the Transit Bureau was present; only the Office of Alcoholism and Substance Abuse Services was represented by a relatively low-level staffer. This number of very high-ranking attendees was unprecedented in the history of the MISCC. It would have been better for DFS to have sent its other Deputy Commissioner, the one for the Office of Temporary and Disability Assistance, but overall, the list suggests that these agency heads are taking their marching orders from Spitzer, and that they intend to get something done.

This notion was reinforced by the new MISCC Chairperson, OMRDD Commissioner Diana Jones Ritter, who emphasized more than once that the mission and goals of the MISCC are directly in line with Spitzer’s goals for greater efficiency, accountability, and community integration in the state’s disability programs and services. This was backed up by Michael Seereiter, the former Public Policy Director at the Mental Health Association of New York who is now the Governor’s point man for mental and developmental disabilities.

State law requires the MISCC to produce a comprehensive plan to maximize integration of disability supports and services that all of the state agencies are bound to follow. Under Pataki and Maul, the MISCC completely ignored this requirement; it spent most of its time letting low-level state agency representatives report on and justify their current (in)activities, and collecting complaints from people with disabilities. At the end of its tenure, it issued a hasty report that listed, at exhaustive length, these self-serving justifications and the complaints, accompanied only by very vague, nonbinding “recommendations” for agencies.

In contrast, the attendees at the new MISCC’s first meeting strongly emphasized the need for “measurable outcomes” in order to hold state agencies accountable for making progress toward maximum integration. A new workgroup was created to develop a standard format for agency “implementation plans” that include measurable outcomes. Five state agencies proffered representatives for the workgroup, including CQCAPD Chair Gary O’Brien; other members include VESID’s Independent Living program person Bob Gumson; Pat Fratangelo from Onondaga Community Living, a developmental disabilities service agency that has a strong track record of integrated services; and Bruce Darling, renowned disability rights activist from the Center for Disability Rights (a CIL like STIC) and ADAPT. We have to point out that so far, the MISCC doesn’t really have anything to “implement”; it’s a long step from the 2006 report’s raw data and generic recommendations to an implementation plan, but unlike the old MISCC, the new MISCC appears poised to take that step.

After three years of struggle, the disability advocates on the MISCC finally achieved their goal of having the MISCC formally address the state’s shortage of low-income and accessible housing, which is a major barrier to community integration. Ritter readily agreed to form a housing workgroup, which will be chaired by DHCR Commissioner Deborah VanAmerongen, and will include three other agency heads; representatives from four other state agencies; two CIL directors, including Bruce Darling; and Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services, among others. The heavy involvement of agency heads and the state’s two leading consumer advocates for integrated housing for people with disabilities suggests that some real business could get done by this workgroup.

The attendees also took some solid steps toward increasing consumer participation in the MISCC process. Ritter pointed out that each agency is supposed to establish a “stakeholder” group comprised of people with disabilities and advocates to keep the agencies on track as they develop their plans. She also proposed that the MISCC open its membership to more people from the general public, including people with disabilities. This was agreed to by all present.

Finally, the MISCC pledged to gather information from other states on how they have implemented integrated services, and to make information on the MISCC’s activiities more readily available to the public on a website.

The April meeting wasn’t perfect. Notably absent (at least from the meeting minutes) was any discussion of the need to document waiting lists for integrated services and find ways to move people off them, nor was the MISCC law’s requirement for independent third-party evaluation of the MISCC plan mentioned. There was no consideration of the redundancies, inefficiencies and cross-purposes that the state’s division of disability programs and services across ten separate agencies creates, or of how to correct them. The MISCC is still violating state law by failing to rotate its chairpersonship out of OMRDD to the other member agencies. Allowing the state’s most segregated and paternalistic disability agency to continue to hold the chair doesn’t send the best message to the disability community.

That being said, the MISCC of April 2007 represented a clear break with the past. It showed that Governor Spitzer is serious about getting a real Olmstead Plan, that he has hired state agency heads who have a real interest in promoting integration, and that he has made it clear to them that integration is the goal. The MISCC has already taken concrete steps to address the two biggest criticisms of its performance—the failure to address housing, and the failure to hold itself and its member agencies accountable. We think the new MISCC will continue to listen to people with disabilities and advocates and improve its performance, and that it shows great promise to finally accomplish its goals.

For years, New York has been full of cries from people with disabilities that the division of disability services into separate bureaucratic fiefdoms, each led by a baron (or, let’s say, a Scottish prince) who is not compelled to answer to the King, has made it impossible for disability policy makers to see the forest through the trees. In yet another gesture that suggests that this ancien regime may be changing, King ... er ... Governor Spitzer announced a series of  “People First” Coordinated Care Listening Forums to be held around the state this spring and summer. Spitzer said, “For far too long in this state, individuals with multiple needs have had to navigate through a complex myriad of state and local bureaucracies  before they even begin to receive the care that they need, which is why a patient-centered system here in New York is necessary.”

Each forum will be attended by the Commissioners of OMRDD, OMH, DOH, and OASAS (Office of Alcoholism and Substance Abuse Services). They will be seeking input from local communities on “access to resources, quality of care, interagency collaboration and coordination of care.” Input from people who use the services is especially encouraged. This means they’ll all hear the same story at the same time, in front of witnesses, people! This is your chance to make them confront the real hardships that their isolated fiefdoms have imposed upon the peasants.

The Commissioners, with their attendants, will leave their lonely castle keeps and move majestically across the state, like a small forest marching over hill and dale, stopping at five cities along the way. As you read this, they have already visited New Paltz and New York City. Future stops and witching hours include:

Buffalo
June 19
4 pm - 6 pm
Roswell Park Cancer Institute

Syracuse
June 20
2 pm - 4 pm
Renaissance Hotel

Plattsburgh
July 13
Time and location TBA

Details are available from the websites of any of the four state agencies listed above.

We might wish that a fifth baron, the Commissioner of Education, had been included, as his vassal VESID holds sway over not only vocational services but special education—but in New York State, not even the King can compel his attention; only Parliament can do that.

Even so, this is an historic opportunity for people with disabilities to take the lead in expressing their wishes for deep structural and service reform. Lead on, MacDuff!

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NYS Senator Thomas Morahan (R-New City) has introduced a bill in the Senate that would dramatically limit the ability of schools to restrain students with disabilities.

The bill (S. 5079) would completely prohibit the use of mechanical restraints (straps, tie-downs, Posey belts and other devices, not including orthotics or positioning devices), and chemical restraints (drugs not prescribed by the student’s own physician), by schools under any circumstances. It would only permit “physical” restraint under very limited conditions.

The bill defines “physical” restraint as “the use of bodily force to limit a student’s freedom of movement or action”, but does not include “escorting” the student. It does include use of time-out rooms—perhaps because the rooms cannot be locked, so students can only be prevented from escaping by staff physically holding the door closed by the knob.

Such physical restraint could only be used with a student who is in imminent danger of seriously harming him/herself or others, and only after non-physical alternatives, such as redirection or calming, have been tried and failed. Restraint would have to cease as soon as the student stopped exhibiting dangerous behavior. Use of “floor” or “prone” restraints (the infamous OMRDD “take-down”) would be prohibited under all circumstances.
 
The school would have to immediately verbally report the use of any such restraint to the student’s parent or guardian, and would have to send a written report to the parent or guardian within 48 hours. Schools would be required to emphasize the use of positive behavioral supports with students who exhibit problematic behavior, and would have to provide training to all staff in the proper use of limited physical restraints and alternative preferred methods of calming students.

It is fairly common for schools in New York to use mechanical restraints on students with disabilities, especially those placed in segregated programs or classes, purely to keep them in their seats or for punishment. This would no longer be allowed under this bill, and that would force a real sea-change in how schools treat children with disabilities. It would require schools to use more effective and humane ways of permanently modifying the behavior of children who are violent or just rambunctious, very likely leading to more individualized education and behavior plans and higher staffing ratios involving better-trained—and, therefore, better-paid-teachers’ aides.

A rather strange feature of the bill is that it requires the Commissioner of OMRDD to develop regulations to implement its provisions, and also to receive and investigate reports from schools when use of restraint causes injuries to students or staff. It would seem more sensible to assign these responsibilities to the Commissioner of Education. There are some possible explanations for this, though. For one thing, the bill amends the Mental Hygiene Law, not the Education Law. Senator Morahan may have assumed that all children with disabilities, or at least those whose behavior might lead to use of restraints, must have developmental disabilities. Of course, that’s incorrect; in fact, a very high proportion of such students have learning or severe emotional disabilities. Also, OMRDD has a lot of experience in regulating use of restraints, while the State Education Department (SED) has none.

We’ve heard that SED officials strongly dislike this bill. We don’t know why. SED has long taken a largely hands-off approach to enforcement of special education laws and regulations, so it may be that these officials simply don’t like to see school districts restricted in any way. It could also be that giving OMRDD authority over education issues sticks in their craw.

In any case, there was no enthusiasm in the legislature for this bill in the spring session. We understand that it may get more attention this fall or perhaps next year.

The late Pataki Administration’s Medicaid “reform” focus was on developing a Medicaid 1115 waiver. An 1115 waiver lets states apply a managed-care model to any or all Medicaid services. It’s very different from 1915(c) Home and Community-Based Services (HCBS) waivers (like the TBI waiver), which let states provide specific alternative services to specific groups of people.

The plan was to fold all of the state’s HCBS waivers (except those operated by OMRDD), and some services currently funded with 100% state dollars, into one “mega” 1115 waiver. Such waivers must show “cost neutrality”, which means that providing services under the waiver must not cost more than providing them without it. The plan also promised a greater variety of services than is now available, and to make more people eligible to receive them than are eligible now.

Naturally, the question immediately arose, “How can you keep those promises and maintain cost-neutrality without reducing the quality of the services, cutting other services now available under Medicaid, and/or putting eligible people on waiting lists?” That wasn’t the only troubling question, but it was the biggest one. A broad range of advocates and service providers saw this as simply a plan to cut Medicaid spending by dodging the federal requirement that Medicaid services that are medically necessary must be provided to all eligible people without limitation.

As the questions mounted, last summer Pataki’s Department of Health (DOH) sent a Request for Information (RFI) to interested parties seeking input on the proposed waiver. In April of this year, DOH released a summary of the comments it received.

Between those two events, during this year’s state budget debate, the Spitzer Administration, which initially seemed to support the 1115 approach, suddenly announced that while “comprehensive Medicaid restructuring” would be pursued, an 1115 waiver was no longer considered “the best vehicle” to achieve that goal. The RFI response data may have played a role in that decision, and it could help guide future Medicaid reform advocacy, so here’s our summary of the summary:

DOH got 218 responses to the RFI, including 8 from state agencies, 12 from provider associations, 65 from county agencies, 21 from advocacy groups, 87 from service providers (including STIC; though we are an advocacy group, we also have extensive experience and technical knowledge in oversight and provision of Medicaid waiver services), and 17 “other”, mostly anonymous, responses.

The responses on different aspects of the notion of consolidating services to achieve cost savings and efficiencies were varied. However, there were a few consistent themes.

The biggest one was that an 1115 waiver is a threat to service availability and quality, and it was seen as undesirable by nearly everybody.

Person-centered planning with input by the person to be served was almost universally supported. The use of a unified single assessment tool to determine what sorts of services individuals need received support from a near majority of respondents.

About 75% of respondents identified accessible transportation and housing as major issues that must be addressed in order to “rebalance” the system with a community-based focus.

Many respondents noted that wages or salaries need to be increased to deal with workforce shortages.

There was significant support for using the TBI Regional Resource Development Center (RRDC) model to administer the program on a regional basis. Although RRDC quality is uneven across the state, the one that we operate has received rave reviews from consumers, service providers, and even DOH, and its potential for replication was recognized by many respondents.

In STIC’s response, we emphasized that the “intake end” of the system needs better training and more personnel to enable creative service planning and manageable caseloads, while the “delivery end” is suffering from overregulation and credentialism and would be better served by expanding the CDPA and cash-and-counseling models. Many respondents agreed with the need for more and better-trained service coordinators, and they supported streamlined rate-setting and administrative compliance procedures, but most of them also called for more regulation and credentialing of the people who do the services. We weren’t surprised to see that, since the respondent list was top-heavy with traditional service providers and the government agencies that exist to regulate them.

We’d like to restate here, though, that we don’t see significant service quality problems that arise from the education, training, or credentials of direct service providers. We aren’t just talking off the tops of our heads here; we provide or oversee Medicaid-funded services to well over 500 people across 13 counties each year. The biggest quality issues we see in these service systems are inflexibility in response to consumer needs and preferences, and inability to ensure reliable daily service. The former results from overregulation; the latter from inadequate wages and benefits for workers. Increasing training and credentialing requirements for service workers would tilt the balance of authority in the service-provision relationship away from the recipient and toward the worker; would needlessly and massively inflate costs without improving service quality; and would therefore reduce, rather than increase, service availability.

Perhaps the Medicaid restructuring project would benefit from another RFI, this one targeted to the people who use the services rather than those who make money by providing or regulating them.

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“I won’t be your beast of burden.” — Mick Jagger

Schaffer v Weastwas a Supreme Court decision handed down in November of 2005. It found that parents filing suit against school districts under IDEA (the Individuals with Disabilities Education Act) have the “burden of proof” in those cases. This overturned years of precedent in which the districts were assigned the burden of proof.

We didn’t report this decision because in virtually every civil and criminal court procedure in the US, the burden of proof lies with the person who started the action. This seems right to us. Think about it: if you’re minding your own business and somebody sues you, do you think it would be fairer for you to have to prove your innocence, or for the person who hauled you into court to prove that you did something wrong?

So although disability activists in New York last year got the legislature to pass a bill to move the burden of proof back to the school district, and Governor Pataki vetoed it, we didn’t get excited.

As it turns out, though, burden of proof isn’t the end of the story.

The State Education Department (SED) issued a memorandum in December of 2005 that badly misinterpreted the court’s decision. It involves technical concepts so we’ll keep it simple. Essentially, the burden of proof has two parts, the “burden of production” and the “burden of persuasion”. Most people, with they talk about proving something in court, are talking about persuading a judge or jury that a decision for or against something is correct. But in courts, before you can get to the persuading, you have to first demonstrate, or “produce”, facts. The SED memo said that these two elements go together; if you have the burden of proof, you also have the burden of production.

That seems to make sense, but what we are seeing is cases where school districts go into a fair hearing, an arbitration, or a court, baldly admit that they aren’t doing what they’re supposed to do, and then demand that the parents prove it. The hearing officer or judge has no choice but to agree with the district. Producing facts is a technically difficult and sometimes expensive task that involves gathering documentary and other evidence and putting together a coherent presentation. It usually requires a lawyer. Making parents do this leads to two things—either parents get a lawyer, win the case, and the district must then pay the lawyer, or parents can’t afford to take the risk of losing and having to pay the lawyer, so they don’t file.

Given these facts, it seems fair that at the very least, SED’s interpretation of Schaffer v Weast should be rolled back. That decision left a possible way to resolve this; it said that states that assign the burden of proof to school districts in legislation, rather than by administrative order, may be upheld.

So this year the bill to restore the burden of proof   proof is back, but only in the Assembly (A.5396). Advocates are having difficulty obtaining a Senate sponsor. We’ll keep you informed.

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The federal Department of Education has released proposed regulations for IDEA (Individuals with Disabilities Education Act) Part C Early Intervention programs administered by states. This document contains over 400 pages, and AccessAbility had insufficient time to review it before we went to press. We hope that disability activists concerned with Early Intervention programs will review it and submit comments to the feds by the July 23, 2007 deadline, because the press release announcing the comments contains some scary things.

Under the heading, “Increase State Flexibilty and Options”—always a dangerous idea—the press release says, “States ... would be given flexibility to offer parents of children ages 3 through 5 the option of continuing to receive Part C services (in lieu of providing those children a free appropriate public education under section 619 of the IDEA) and allowing states to serve those children for one, two or three years.” This looks like it would let states abandon services for these children in some cases.

Then there’s the “Reduce Burdens on States” section, which reads: “... permitting states in most cases to provide assurances rather than supporting documentation in their applications.” In other words, let states lie about what they’re doing with no consequences.

More information can be found at:

www.ed.gov/news/pressreleases/2007/05/05042007.html

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Winkelman v Parma City School District

On May 21, 2007 the Supreme Court awarded a victory to parents of children with disabilities involved in lawsuits under the Individuals with Disabilities Education Act (IDEA). The court found, by a 7-2 majority, that parents do not have to hire a lawyer to sue a school district.

The Winkelmans were unhappy with their child’s special education program but could not afford a lawyer, so they filed their suit against the Parma, OH school district themselves. The school countered that this was a case of non-lawyers illegally attempting to practice law, because the suit was filed on behalf of their child, who has autism.

The 7-Justice majority opinion, written by Justice Anthony M. Kennedy, rejected this argument. Kennedy said that the interests of children with disabilities and their parents are inextricably intertwined. Therefore the parents were representing their own interests when filing the suit, which anybody can do in any court.

In a dissent written by Justice Antonin Scalia and joined by Justice Clarence Thomas, Scalia said that IDEA contains specific language indicating limited circumstances under which parents may represent themselves in actions against a school district, which suggests that Congress did not intend to permit such self-representation in all cases. Scalia also argued that the central right to a free appropriate public education that IDEA guarantees, and over which the lawsuit was filed, is granted only to children, not their parents. Parents therefore suffer no damage to their own interests when that right is denied to their children.

It’s worth mentioning that as a practical matter, lawyers in these cases do what parents, not children, tell them, so even when a lawyer is involved, s/he will always be representing the parents. In any case, the decision will make it easier for families who can’t afford a lawyer, or who live in small communities and can’t find a lawyer willing to take their cases, to sue school districts under IDEA.

However, disability rights advocates should view the notion that the interests of children with disabilities and their parents are “inextricably intertwined” with caution. This precedent could strengthen the hands of parents who want to overprotect and segregate their children despite the inevitable ill effects on the child’s emotional health and development, and it has implications for other child welfare protections. It could even lead to a finding that a child with a disability may be euthanized purely because it will make life easier for its parents.

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Okay, so you’re tired and your house has become a chaotic mess. Helping your child with his homework has become the bane of your existence and you have long since run out of creative ways to get the kids up and out the door every day. On top of these issues, maybe you are also stressing about how to best prepare for your child’s IEP Annual Review without going into overload. Does this sound familiar? If it does, the following information may be helpful to you. I have prepared for you parents out there a list of five easy and useful steps you can take in preparation for the big meeting! Here they are:

1. Talk with your child’s teacher or teachers prior to the annual review. Call a team meeting. Make sure you have a clear understanding of where your child stands academically, socially and wherever you have concerns. This will reduce your anxiety and should cut down on any surprises.
2. Before the meeting, be sure to read through the current IEP as well as old IEPs you may have. Become familiar with the goals your child has been working toward accomplishing, as the goals are the meat of the IEP. If your child is not making the progress you would like, be sure to ask for a review of these goals and have them updated or changed.
3. All right, I know it’s boring, but review the Procedural Safeguard Notice that the school should have sent you. If the notice is too difficult for you to understand, call the smartest person you know, have them suffer through it and then give you a summary. This document contains important information about your rights, and of course you want to know those before going into your child’s meeting.
4. Call an advocate or bring a support person. As most of you know, these meetings can be really tedious and anxiety-provoking, even for the seasoned veteran. If you are like most people, nobody has ever sat down and taught you the elements that make up an IEP or discussed how the special education system is set up. So, it makes sense to find someone to help and support you during the meeting.
5. Try and relax. You are an essential part of the team, and your input as the parent or guardian is absolutely valid! Do your best to come to the meeting in a calm, respectful manner. Take your time, don’t be rushed, and ask questions. Remember that you do not have to agree with anything that you do not understand or don’t feel is in the best interest of your child.

Your child deserves the best education possible. The time you take to prepare for their meeting will only be a benefit to them.

For more information or to find support, call STIC at -

(607) 724-2111 (voice/TTY).

Our Education Advocates are Shelley Hubal (children with developmental disabilities) and Christine Delany (children with all disabilities).

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My name is Sharon Ross. I am a person who has survived having a TBI.

I used to live in a residential group home. I felt out of place living there and couldn’t be myself. I wanted to live on my own. The staff there didn’t believe that I could.

Then I met Susan Link here at STIC, who is a Peer Counselor. Susan once said to me if you’re not happy here why don’t you get your own home?

With some assistance from Susie and other members of STIC I was able to show that I was capable of learning how to be on my own. I learned that I could do things independently after all.   In one of my team meetings I had told staff of the residential program that I was ready to move out on my own. I had enough of living there. My case manager at the time became angry and pointed his finger in Susie’s face and yelled, “I will hold you personally responsible if anything happens to Sharon.” I spoke and said, “Wait, if I don’t make it in the community then that is my responsibility.” 

Just so you know, ladies and gentlemen, that was 11 years ago. Today, I continue to live independently. I take care of my home, pay my own bills, I work part-time and I am an active member of my community, as well as a member of STIC. I also have two cats that are my babies.

You know what the best part is? I now can make my own decisions and live my life the way that I want to.

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Brenda Allen is 21 years old. She has been institutionalized since age 13 and is currently living at Broome Developmental Center. Brenda’s poetry is a poignant expression of her experiences and the emotional repercussions of so many traumas and tragedies in her life. Recently, this fine young woman has begun working with STIC to gain her independence and move into the community.

Isolated

No one around to understand you and the pain,
No one around to understand the heart ache,
No one around to hear my voice calling out for you,
No one around to hear me say I love you,
No one around to see the tears I have cried for you,
No one around to love since you have been gone,
No one around to see how my life went when you went,
But then again, there is always Jesus.

Saying goodbye

Once your eyes sparkled
Like the most brilliant star.
Now your gaze has turned away
And I wonder where you are.

You used to make me smile
With your special ways
And I loved being around you,
But now I am pulling myself away.

I know it’s almost time to say good-bye.
You have to leave me and the world.
You have that look in your eyes

Something soft brushes my cheeks.
It must be angel’s wings.
I can now hear the chorus.
As heaven sings the gates are opening
To the ones we have lost.

Don’t be afraid to go.
Everything will be alright.
I will look for you in the night sky.
You will be the star
With the brightest shine in it
So we know you made it safe and sound.

Challenge

Challenge is a problem child.
They treat others mean
Because they don’t know any other way
To get out their feelings
And their past haunts them.

So we are mean.
It’s not their fault.
It’s just how they were raised.
They saw their parents do it
So they did it.

But that’s not true.
People can change their ways
Through therapy and prayers,
But we’re not the only ones
Who feel like this.

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Each year we at STIC have the privilege of honoring those people and organizations that have gone beyond the call of duty in contributing to the benefit of individuals with disabilities, the disability community as a whole, and/or STIC.

This year’s Awards Luncheon was held on May 31, 2007 at STIC. Please join us in commemorating our awardees. We truly can’t do what we do without folks like these:

OUTSTANDING ACCESSIBILITY ACHIEVEMENT

Annette Minarcin, Binghamton School District

Annette and the Binghamton School District have made a new commitment to increasing access to the curriculum for their students with disabilities. Their seriousness about this has been demonstrated by their purchase of large amount of assistive technology, and by their training of staff to increase successful implementation of that technology.

Binghamton University Events Center
Broome County Emergency Services
Broome County Health Department
Broome County Transit
Southern Tier Chapter of the Red Cross

The above agencies exhibited a truly astounding level of sensitivity, preparedness, and rapid response to meet the needs of citizens with disabilities during the massive flood of 2006. These agencies did great things too numerous to mention, but some highlights included Broome Transit’s rapid provision of accessible vehicles for evacuations and the Events Center’s ready availability of assistive technology, emergency pharmacy, attendants, doctors and nurses for evacuees. Some years ago STIC provided input on the county’s emergency response planning, and this event showed that it was taken seriously. The flood was a tremendous tragedy, but as tragedies sometimes do, it truly brought out the best in our community.

Cindy Goodrich, Tioga County Elections Commissioner
Bernadette Toombs, Tioga County Elections Commissioner

Cindy and Bernadette have done extensive work for over a year to ensure that Tioga County has 100% polling place accessibility. They have taken extensive measurements, photographed every approach to every polling place, and purchased numerous devices (doorbells, wheelchair mats, and more) to make each polling place fully accessible. They have also sought input from the disability community as to the true accessibility of various voting machine models to ensure that whichever model is eventually purchased will be usable by all.

Maine-Endwell School District

Maine-Endwell School District donated 80 computers to STIC. This donation allowed STIC to provide basic computers to people with disabilities who were unable to obtain a computer themselves. Computer access can change lives by increasing access to information, employment and social opportunities for people with disabilities.

Maryliz Pines, Deputy Commissioner, Broome County Board of Elections
John Sejan, Deputy Commissioner, Broome County Board of Elections

John and Maryliz have been working tirelessly to correct the mostly minor barriers in Broome County’s 123 polling places, in order to return the County to 100% access. They have also consistently sought input from the disability community on the accessibility of various voting machines to ensure that whichever model is eventually purchased is truly accessible.

OUTSTANDING AGENCY SUPPORT

Melanie Chanecka, Broome DDSO

Melanie has been a fantastic resource and liaison for our Service Coordinators, and she is highly supportive of people with disabilities’ needs and aspirations.

OUTSTANDING CONSUMER ADVOCACY

Laura Bevacqua

As a Mental Hygiene Legal Service lawyer, Laura ensures that the civil rights of all Broome Developmental Center (BDC) residents are upheld. She became aware of STIC’s strong advocacy and success in helping BDC consumers move into more integrated settings just under a year ago and has made four referrals since then. In that time, Laura has demonstrated not only that she is committed to enforcing the civil rights of her consumers, but that she also believes in each person’s abilities and is determined to help every one of them reach for his/her dreams. She is a staunch advocate who reached out to STIC for assistance with correcting injustices and chipping away at a punitive system.

Sandy Cyphers

Sandy is Consumer Advocate for a women’s unit at BDC. Consumers confide in her and find her supportive, always willing to listen, and an ally in their efforts to become more independent and to leave BDC.

OUTSTANDING CONSUMER SUPPORT
 
Karen Brown, Case Manager, Broome County Adult Protective Services

Karen advocated vehemently for the right of consumer in crisis to remain in her home and for restoration of services. In the meantime, she got groceries, cooked meals, did laundry and housekeeping, and provided a lot of moral support with endless patience. Without her partnership with STIC and her willingness to go above and beyond her regular duties, the consumer would have returned to the nursing home.

David McNamara, Spencer-Van Etten Schools

David has spent his educational career committed to the children in the Spencer-Van Etten Schools.   Finding assistive technology, opening doors to inclusive classrooms, training staff, supporting families, and collaborating with other educators in Tioga County are examples of his role-model approach to helping students with disabilities achieve high levels of independence. 

Vickie Xlander, CSE Chairperson, Maine-Endwell School District

Vickie started an integrated summer program for students with disabilities in her district. It is the only integrated summer program for students with disabilities in Broome County started by a local school district. She is committed to keeping more students with disabilities in Maine-Endwell Schools, rather than recommending more restrictive placements for them. To that end, she started a new 8:1:1-type inclusive class for elementary students who, in the past, would have ended up in BOCES programs. She has also made it a policy to provide more supports and services, including Functional Behavioral Assessments and Behavior Intervention Plans, for students who are at risk for a more restrictive placement in order to keep them in the least restrictive environment possible.

OUTSTANDING SYSTEMS ADVOCACY

Art Johnson, Commissioner, Broome County Mental Health Department

Art has been a seriously proactive partner in STIC’s Children’s Mental Health Task Force. He arranged funding for the Task Force’s study of service needs and gaps and has added new programs at Broome County Mental Health in response to those needs. He is committed to finding solutions to help children with co-occurring conditions of mental and developmental disabilities.

Barbara Fiala, Broome County Executive

Barbara has taken the outstanding step of ensuring financial and logistical support to enable STIC to train every County employee on Americans with Disabilities Act issues relevant to their jobs.

Dr. Robert Russell, Psychologist, Broome County Mental Health Department 

Rob has been a highly supportive and active member of the Children’s Mental Health Task Force from the beginning. He is strongly committed to the independence of people with developmental and other disabilities. He is a model practitioner who believes that everyone, regardless of disability, can benefit from counseling support if they want it.

OUTSTANDING VOLUNTEER SERVICE

Randy Novicky

Randy volunteered several times with our Hometown Holiday Light Festival this past winter. He made himself available to help when we needed him, in all sorts of nasty weather, and cheerfully showed up when asked with almost no advance notice.

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Bob Deemie

So I guess I should write a little blurb about myself since I am a new staff member to STIC. My name is Bob Deemie, Robert if you want to be formal, and I am a new Peer Counselor here at STIC. I have a BA in Psychology from Elmira College and I never thought I would end up in a counseling role because it is something that does not come naturally to me. However what I have found out here at STIC is that not only does a Peer Counseling position involve the actual counseling of people, it involves problem solving and a variety of other activities that I greatly enjoy. So it comes to my great surprise that I fit in so well to the position and so far have been doing well. It also helps that STIC is a great place to work and unlike any workplace experience I have come into contact with in my work experience.

Cheri Robinson

I’m a new service coordinator to STIC. Well, believe it or not, on my first day at STIC, I felt like Charlie Bucket in Tim Burton’s Charlie and the Chocolate Factory. I half-expected Willy Wonka to step out and say, “You’re just happy to be here!”

I moved to the area seven years ago from the Capital District, finishing my bachelor’s degree at SUCO, and settling in a small village on the Susquehanna with my family. I’ve worked in the human services field for over nine years (three years as an MSC). Working for an agency that follows the Independent Living Philosophy has made a tremendous difference for me. I am happy to be here!

Gabrielle Xlander

I would like to take this opportunity to introduce myself, as I will be taking over the Assistive Technology Coordinator position for the TRAID project in July. I have worked for STIC’s Day Hab Without Walls program for a year, serving individuals with autistic spectrum disorders, learning disabilities, and mental health disabilities.

My passionate devotion to increasing the independence and integration of individuals who have disabilities in our community is what empowers me. I am grateful that I have the opportunity to express this devotion through working at STIC, an agency of tremendous quality.

I truly look forward to providing the community, my co-workers, and consumers with helpful information and assistive technology. I feel honored to work with other staff members at STIC as a team. Together, we can make the dreams of our valued consumers become reality.

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STIC sadly announces that Jennifer Grove, who has served as an Education Advocate and more recently, as coordinator of our assistive technology programs, will leave us in July. She will be pursuing an advanced degree in Speech Pathology.

Jenn has earned the trust and confidence of a multitude of people with disabilities and their families, and the respect and admiration of the region’s disability service providers, while working tirelessly and creatively to protect and defend the rights of students with disabilities and to enable people with disabilities of all ages to obtain the devices they need.

While STIC is losing a tremendously valuable colleague, the world of speech therapy will gain a much-needed, shining example of respect, empathy and support for, and deference to, people with disabilities. We wish her all the luck and success in the world.

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We know it’s probably futile, but we thought we’d give it a try:

STIC has converted its mailing list to a new database system. The old system contained a lot of errors: organizations that no longer exist, people and organizations with no address, undeliverable addresses (according to the Postal Service), incomplete addresses, and rural delivery addresses that 911 systems have made invalid.

So we expect that some of you who want to get this newsletter won’t anymore. We know you won’t know why, but maybe if you’re talking to somebody else who did get it, they can tell you. If that happens, call us at:

(607) 724-2111 (voice/TTY), and we’ll get you back on the list. And PLEASE! If you know your address is about to change, or you’ve got a rural route address that is no longer valid, TELL US! Also tell us if you want us to stop sending you this newsletter.

AccessAbility is sent by bulk mail. The Postal Service charges a special low bulk rate, which saves us money. However, at that rate, they have no patience with addresses that are in any way wrong or incomplete. They won’t try to figure out where the mail was supposed to go; they will just trash it. That happens to a lot of copies of each issue of this newsletter, and we’d like to save not only the mailing but the production costs.

And it’s not just about getting the newsletter. STIC has legal obligations to send various types of mail from time to time to the people who receive significant services from us—yes, even if you don’t want us to. We can’t meet that obligation if you don’t help us keep your address up to date.

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Our last Annual Campaign fundraising letter raised a record $7,100. This is fabulous! Thank you all so much!

We’ll be sending out some equally clever and enticing letters this fall. And, something new: You’ll be able to make a contribution to STIC any time on line! We’ll let you know when that becomes available.

Remember, all proceeds of STIC’s Annual Campaign go toward the renovation of our new building on East Frederick Street in Binghamton. That project is still in the works, believe it or not. It’s dependent on Broome County’s plans for the new transportation hub, which have been moving at a glacial pace. The new hub requires knocking down our Prospect Ave. building, and the demolition people have been here to check things out. The County projects a ground-breaking sometime this summer. We’ll keep you informed.

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STIC’s Hometown Holiday Light Festival fundraising event will be here before we know it. This year’s schedule:


The event will feature a “Fairy Tale” theme with several major new displays. Two of them are pictured here.


We’ve raised about $5,800 in sponsorships so far. Sponsorships cover most of the costs of the event. That lets us apply nearly all of the gate receipts to our new building renovation project. It’s a fundraiser, remember?

The event gathers major publicity on radio and TV during the holiday season. Major sponsors also have their names prominently displayed
in the park, where they are seen by tens of thousands of visitors.

If you’d like to sponsor the Hometown Holiday Light Festival this year, contact: