AccessAbility

As the IDEA reauthorization process heated up this spring, the House of Representatives passed their version of the new IDEA, HR 1350, the "Improving Education Results for Children With Disabilities Act of 2003", along largely, but not completely, partisan lines.

Much has been reported about this bill, some true, some false, some vague. We've analyzed the bill carefully and compared it to the current Individuals with Disabilities Education Act (IDEA) to bring you the facts minus the hype.

In STIC's view, this bill should not become law, because it contains one very bad change, and one pretty bad change. However, there are many good things in the bill, and some other changes that, properly understood and applied, will do no harm.

Very Bad

The worst provision in this bill is its new disciplinary procedures for students with disabilities.

The current law understands that some disabilities can cause behavior problems and requires schools to respond to those problems with appropriate treatment, which may or may not include traditional forms of punishment. It does not ordinarily let schools suspend a child with a disability or move her to an "alternate child with a disability or move her to an "alternate placement" for behavioral reasons for more than 10 days. If the behavior involved bringing weapons to school or using or selling drugs, the limit is increased to 45 days. Schools must do a functional behavior assessment, and create a plan to address the behavior, when it arises. And when any disciplinary action is considered for a child with a disability, the child's IEP Team must meet to determine whether the behavior was a "manifestation" of the disability and, if so, decide how to take that into account.

It sounds like heavy handed government bureaucracy getting in the way of good old-fashioned discipline for children, doesn't it? Except: It has been scientifically demonstrated that many medically-diagnosable disabilities, including mental retardation, traumatic brain injury, and psychiatric conditions, can cause children to behave badly. It has been further proven that ordinary punishments do not improve the behavior of these kids. It has been shown that a variety of appropriate interventions exist that can help these kids behave better while remaining in ordinary classes. And it has been shown that many teachers and administrators are prejudiced against students with disabilities and are actively looking for excuses to throw them out of their classrooms and schools. The current law permits dangerous kids to be suspended or moved if necessary to protect them or others. But children with disabilities need legal protections to ensure that their behavioral disabilities are handled as "peer reviewed scientific research" (which the House bill carefully mandates in other areas of special education) calls for.

HR 1350 throws most of these protections out. Instead, it lets schools apply the standard disciplinary procedures, including suspension or alternate placement, that it uses for all students, for any behavior that violates a school's "code of student conduct", to a child with a disability without regard for whether disability caused the behavior. The requirements for functional behavioral assessment and a "manifestation" determination are removed. And, alternate placements can be for the rest of the child's school career.

Contrary to claims made by some advocates, the bill does require that behavior plans for the child must be carried out in the alternate setting. And it strengthens requirements to provide such interventions, and other suitable supports, to children with behavioral disabilities at the time when the disability is diagnosed.

The new discipline provisions were fostered largely by people who think all behavior is a matter of moral choice--a belief that displays profound ignorance of modern medical knowledge. However, these dark-age demagogues could not have pushed it through without the support of people who have bought into the complaints of school district officials that it's just too hard and dangerous to follow fair and enlightened procedures. Among these misguided supporters is our own Senator Hillary Rodham Clinton.

Pretty Bad

The other unacceptable provision of the House bill requires Governors to set reimbursement rates for attorneys who represent children with disabilities in IDEA lawsuits. The publicly-stated reason for this change is that schools are swamped with legal bills for these suits and need relief.

However, the people writing this bill know that it will be harder for impoverished families to find legal help under these conditions. The real intent is to quash lawsuits before they start, regardless of how justified they may be. This is unprecedented; there are no such provisions governing attorney fees in lawsuits under any other civil rights statute. It's another in a long series of examples of how people with disabilities, the nation's largest disadvantaged minority, have been forced to play second fiddle to other groups when it comes to legal protections.

Good Stuff

On the bright side, this bill contains many reforms that STIC has been calling for. Here's a rundown:

Excessive Classifications

As we've reported, children are often classified as having disabilities because their schools have failed in their basic responsibility to teach them to read, because English is their second language, because they have family problems, or because they are black and their teachers are white. The results are that these kids get the wrong kind of "help" for their very real and serious problems, and there is much less special education money to serve kids who have real disabilities. There are several provisions in HR 1350 to address this problem:

IDEA funding for states (which gets distributed to school districts) is based on the percentage of students in the state that have disabilities; the higher the percentage, the more money is provided. This bill caps that formula at 13.5%. This means that states that "classify" unusually high numbers of students with disabilities won't get rewarded for it.

The US Comptroller General would study the definitions and assessment processes the states use for the categories "emotional disturbance", "specific learning disability" and "other health impairments" to see if they conform to "peer reviewed scientific research". Their report would be issued 2 years after the new IDEA takes effect.

Meanwhile, the new bill clarifies that performance discrepancy in academic matters of reading, writing, math, and verbal expression is not a required part of the definition of "specific learning disability", and that districts may use, when deciding if a child has a learning disability, "a process which determines if a child responds to scientific, research-based intervention." The bill also specifically states the "sense of Congress" regarding disability diagnoses: that children who have not been diagnosed by a board-certified medical practitioner as having a disability, whether physical, learning, or emotional/behavioral, should not be getting special education services.

A new concept is introduced: "pre-referral supports". These are screening and intensive intervention services for kids who have reading or math deficits caused by poor teaching; family-based emotional or behavior issues; or communication problems, that could get them mistakenly labeled as disabled. Local districts could use up to 15% of their IDEA money to teach kids to read, work with them and their families on behavior issues, or provide speech therapy, among other things. Research has shown that, if handled properly at a young age, these problems need not harden into permanent disabilities. How much money goes into these pre-referral programs would usually be up to the district, but districts with exceptionally high numbers of "classified" kids in general, or "classified" children of color, could be forced to use the maximum allowable amount for such purposes. Schools that don't meet state and federal requirements for adequately educating the kids who are classified as having disabilities would lose the option to use any IDEA funds for pre-referral supports. These provisions, we believe, ought to silence claims that IDEA is going to wreak havoc by pulling scarce special education dollars out of the system.

Better Employment Language

The current IDEA requires that anybody funded under the Act should make special efforts to hire people with disabilities, but the House bill emphasizes that people with disabilities should be hired as teachers, early intervention providers, and administrators.

Equal Standards

The bill requires state agencies generally to apply the same standards of achievement to students with and without disabilities when evaluating school performance.

Reasonable Accommodations

The bill clarifies and tightens requirements on states to ensure that appropriate policies and procedures are followed to provide accommodations to students who cannot participate in standard assessments or academic programs.

A New Generation of Advisors

Under IDEA, states have advisory panels that help develop special education policy. The current law requires that a majority of members of these panels be people with disabilities or parents of people with disabilities. The House bill would help rid these panels of old-school segregationist parents by stating that parent members can't be counted toward this majority if their children with disabilities are aged 27 or older.

Accessible Texts

States would have to enforce a recent federal law requiring all manufacturers of textbooks or other printed instructional materials purchased by the state to provide them in electronic format (that is, on computer disk), so they can be adapted for use by children with disabilities.

No Forced Drugging

Schools would be forbidden to require students to take psychotropic drugs as a "condition of attending school or receiving services".

Charter Schools Covered

The bill clarifies that the same requirements and standards for special education must be applied equally to traditional public schools and charter schools.

Excessive Paperwork Reduced

The new bill clarifies that an IEP does not have to contain the same information in more than one place. (It would be nice to apply this to all forms of disability service paperwork. Agencies have been required to record the same stuff in several different places, simply because compliance reviewers are too lazy to actually look for it, for far too long.)

No Harm, No Foul

More on Excessive Paperwork

State education agencies, school boards, and teachers' unions have convinced a lot of people in Congress that IDEA is a paperwork nightmare. We aren't sure that it's a nightmare, but it can be very confusing. We're mostly concerned with state agency positions on this, because they are responsible for most IDEA enforcement. They've claimed that they can't enforce IDEA because the requirements are too confusing. We have a sneaking suspicion that they don't want to enforce IDEA because Americans are very hostile to the notion of non-local governments telling them how to educate "their" kids--as though kids were private property and there is no national or state interest in ensuring that they are well-educated. But if the regulations are streamlined, state agencies won't have this excuse and the real issues can be exposed and dealt with.

In any case, much of IDEA has not been effectively enforced for over 25 years and yet the advocates who are trying to hold the line on regulations and paperwork say IDEA is a "pretty good" law that works "pretty well". In our view, losing rules that were never obeyed is no loss, and any improved enforcement of remaining provisions that comes from simplification will be a net gain.

The provisions to reduce paperwork and regulation are mostly centered around a requirement that state education agencies "minimize the number of rules, regulations, and policies to which the State's local educational agencies and schools are subject to under this Act" (looks like whoever wrote that line should get a bit of remedial education him or herself), a mandated General Accounting Office study of excessive paperwork, and a pilot project in which up to ten states could propose alternate regulatory and monitoring systems of their own devising.

Parental Consent

The proposed bill changes parental consent requirements. School districts would not need parental consent to evaluate children to determine if they have a disability, but they would need clear consent to develop an IEP or provide special ed services to them. This is one of those issues that looks like one thing on the surface and something else when you dig into it.

Sometimes parents refuse consent, and sometimes they don't respond either way. The current language of IDEA lets schools use mediation and due process procedures to effectively "appeal" a refusal (if such doesn't conflict with state law) of consent for evaluation, but it is silent on the issue of whether districts can provide special education services without parental consent. The House bill makes it very clear that districts may not provide services without consent, and it also states that a district is not legally liable for failure to provide services under these circumstances.

VESID and others are concerned that, due to parental neglect, some kids with disabilities will not receive the Free Appropriate Public Education (FAPE) they are entitled to. However, there are lots of cases where schools "classify" a child who doesn't have a real disability simply because a teacher can't get along with the kid and wants him out of his classroom. This happens a lot with kids classified as having attention deficit disorder (ADD); while medical definitions require that problem behavior be observed at both home and school for an ADD diagnosis, school districts aren't required to follow this definition. The new language would clearly prohibit such "classifications of convenience" when the parent objects, and that's a good thing.

Re-evaluations No Longer Mandatory

Everybody in the disability rights movement has horror stories about how people with obviously permanent disabilities are required to be re-evaluated periodically to prove they are entitled to disability supports and services. This nonsensical procedure wastes taxpayer dollars. The current IDEA requires that kids with disabilities be re-evaluated every 3 years, whether the disability is permanent or not. The new bill provides discretion to school officials and parents to jointly waive re-evaluations altogether or to do them as frequently as needed.

Assessment Tools and Procedures and Eligibility Determination

The new language tightens up requirements to emphasize that only scientifically valid tests and procedures should be used. Since informal procedures are subject to personal bias, while allegedly "valid" tests can be wildly inappropriate for the specific child, we'd call this change a net wash in terms of its likely effect on the accuracy of assessments. The new language also gets rid of the requirement for evaluating children in their "native language", but it says that evaluations have to be done in "the language and form most likely to yield accurate academic and developmental data", which should have the same effect. The bill also adds an emphasis on academic performance during assessments and re-evaluations.

The House bill makes several changes to require that the "educational needs of the child" be evaluated when the child is tested to determine whether or not s/he has a disability. This is a response to complaints that the whole IDEA process seems focused on identifying kids with disabilities rather than on educating them. We don't think this will have any significant effect.

IEP Team Membership

The House bill changes the requirements for participation by regular education teachers in IEP Teams. The net effect is that no more than one such teacher, if any, is required to participate and that teacher doesn't have to take part in matters that don't involve the regular classroom. In our view, IDEA has been, and still is, far too weak in its requirements for regular education teacher involvement and coordination, but this new language doesn't really make that worse.

IEP Meetings The bill introduces more flexibility in how IEP meetings are held, whether they are in person or via electronic communication, and whether or not people can submit input in writing instead of attending. Any changes from standard procedure must be consented to by the parents, and in our view, this probably makes things easier for some families and school districts without affecting the quality of the outcomes.

Benchmarks and Short-Term Objectives

This has been a big bugaboo for the advocates, who have been loudly claiming that the requirement to include these in IEPs has been eliminated. That is highly misleading.

Instead, the bill contemplates two "tracks" for children with disabilities--kids who will pursue standard academic goals and undergo standardized testing, and kids who will have "alternate" academic programs and assessments. This concept addresses a reality that we are seeing in schools: Yes, it's critical that all children with disabilities be included in regular classes so they can have nondisabled children as peers and role models (or be role models themselves). But there are some kids whose disabilities will forever preclude them from making significant progress in standard academic areas. The fact is, there's no reason why a kid with a disability who can pursue standard academic goals can't be served adequately by the progress tracking and evaluation methods that are used for nondisabled children, and that's what this provision, and others, require. This is a good thing, because it ensures that kids with non-intellectual disabilities are held to the same standards as nondisabled children. The House bill clearly states that benchmarks and short-term objectives will continue to be required for children who really need them--the kids who will not be focusing on standard academics.

Multi-Year IEP

This is another big point of contention for advocates. Whether you consider it harmful or not comes down to your beliefs and experience concerning typical parents of children with disabilities.

Under the proposed bill, parents could choose to have a multi-year IEP (Individual Education Plan) instead of the standard one-year IEP. What does this mean? Advocates say it will result in weaker progress tracking and less accountability for schools, and may mean that fewer kids are moved into less restrictive settings as their skills improve. We don't really see this in the bill language. A multi-year IEP is a comprehensive long-range plan for the child's education--one that can effectively address long-term as well as short-term goals. It allows items that ought to be permanent fixtures--such as sign-language interpreters, braille, assistive technology, personal attendants and aides-to be put in place without having to fight for them every year. Such an IEP can be for no longer than 3 years, and it would still have to contain measurable annual goals. At minimum, there would be a "streamlined" annual review of the child's progress, with a full-blown "comprehensive" review at "natural points of transition", such as when the child goes from primary to middle school, or when s/he begins the transition phase in high school. However, a significant lack of progress seen at the annual review would require a comprehensive review within 30 days, and parents could request a comprehensive review at any time. The IEP Team would have no discretion to refuse such requests. There is no language in the bill that precludes children pursuing "alternate programs" (therefore requiring short-term objectives and benchmarks), from having a multi-year IEP that would set in stone assistive technology and personal attendant supports for several years while still triggering frequent careful reviews and adjustments as needed.

The people opposed to this say that parents are likely to be confused or coerced into accepting a multi-year IEP by school districts that want to avoid accountability. This is probably true. But the fact is that school districts try to intimidate parents and violate their children's IDEA rights in all sorts of ways already, and the only solution is to have knowledgeable and determined parents supported by knowledgeable and determined advocates. Families without these resources suffer under IDEA, and always have. That's why STIC has always said that IDEA should contain much more strict and detailed language mandating inclusion and specific support services. There has been little interest in this among professional advocates though, perhaps because it would remove a lot of the ambiguity in the law that keeps them employed. In any case, the House bill's multi-year IEP language would not reduce parents' or children's legal rights concerning IEP content or reviews in any way, and determined parents and advocates will still be able to enforce them.

Hearings, Appeals, and Arbitration

One of the more shrill claims of organized IDEA advocates has been that the new IDEA will "force" parents to attend "intimidating IEP meetings" without legal representation after filing a formal complaint, where, presumably, they will be harassed and threatened. This appears to be a major distortion of the facts. The new bill requires school districts to offer to meet informally with parents who file complaints before going to a fair hearing, but parents do not have to consent to such a meeting, there is no language requiring, or even suggesting, that it be an "IEP" meeting, and there is no language forbidding parents to bring legal counsel to such a meeting. It may be a useless provision, since few parents will want to attend such a meeting if they're already planning to file a formal complaint, but we don't see any harm in it.

Another objection is to a new provision for voluntary binding arbitration for dispute resolution. The idea is to reduce the number of lawsuits. Since the option is completely voluntary, the arbitrators must be independent and neutral, and the results are legally enforceable, we don't see any problem with this either. Parents who feel they'll get a better shake from the courts would be free to use them instead.

The fair hearing process would be changed. Instead of the locally-administered hearing with an optional appeal to the state education agency in the current law, the new bill has the hearing conducted in the local district by the state education agency, with no appeal option. VESID would prefer that it be up to the states to decide how to structure the hearing process. We have no opinion on what would be better.

There are new limitations on how complaints are to be filed. A one-year statute of limitations would be imposed, as would requirements on how detailed complaints must be in order to require a response from school districts. Advocates object to these requirements on grounds of fairness. Actually, it seems to us that the one-year limit might cause more, rather than fewer, formal complaints and lawsuits because families won't be able to afford to wait for a slow school district to respond to informal requests to fix things. They'll have to get going right away on documentation and formal filings as soon as a problem crops up. We aren't sure what the impact of this will be, but you can bet we will make sure that families understand the new urgency of building a formal case for legal action.

Vouchers

HR 1350 does not contain any mention of vouchers to enable families to send kids with disabilities to private schools. A successful advocacy effort got those provisions removed. However, there is a separate bill in the House to introduce the voucher concept to IDEA. We haven't looked at this bill, but we continue to insist that any such program, to be acceptable, must require private schools to accept otherwise-qualified students with disabilities, require them to comply with all IDEA and other disability civil rights law provisions in serving them, and provide sufficient funds in the vouchers to cover the full cost of tuition at any local school.

Funding

Once again, the reauthorization process falls short of fulfilling the promise in the original IDEA that the feds would pay 40% of the costs of special education. This is not good, but it's nothing new. The bill does at least continue the currently fashionable practice of projecting annual funding increases to the point where the 40% level is reached, though it doesn't mandate those increases or actually appropriate funds. It remains unclear what the "100%" is that the "40%" is part of, and whether either figure would be adequate to meet the need anyway. Still, we agree that special education is underfunded even if all those kids with bogus "learning" and "emotional" disabilities are removed from the mix.

Congressional Action

HR 1350 was passed in April. At the end of May, the Senate was working on its own IDEA reauthorization bill. It seemed possible that the Senate bill would avoid the most controversial issues--student discipline and attorney fee limits. Instead, the strategy would be to push the big fight into the House-Senate conference committee that will have to combine the different bills into one.

We want to be very clear: HR 1350 should not become law. Its discipline and attorney fee provisions are absolutely unacceptable. But we at STIC believe the most effective strategy is to give legislators a balanced accounting of what is good and bad in the bill. The bad provisions are a blatant effort to cater to the Republican "base"--the far right wing. Legislators are much more likely to feel safe in backing away from these provisions if we show them that they will get praise and support from moderates for the good parts of the bill.

Sutton Approved

In a narrowly partisan vote, the US Senate confirmed Jeffrey Sutton's appointment as a judge to the Sixth Circuit Court of Appeals. Sutton was the lawyer who successfully argued the Garrett case before the Supreme Court. The Garrett decision found that citizens can't sue a state government for money damages under the ADA's Title I employment provisions, and described the rationale the Supremes would be likely to use to find the law's Title II provisions concerning state government unconstitutional, should they get a chance to do so with another case. Sutton has made a living arguing cases before the Supreme Court that sought to weaken federal power to make and enforce civil rights laws. Unlike the Estrada appointment, however, which was filibustered to death because Estrada had a record of opposing civil rights for racial minorities, Senate Democrats deliberately let Sutton's name be voted on. It appears that even Democrats don't think the rights of people with disabilities should be equal to those of racial minorities.

Hason Suit Dropped

Advocates breathed a sigh of relief when California dropped its appeal to the Supreme Court in the case of Medical Board of California v. Hason. This case involved a doctor who was found unfit to practice medicine due to his mental illness. The federal district court ruled against Hason, specifically stating that the Garrett decision's "theoretical" discussion of the ADA's Title II indicated that Title II is unconstitutional. (See AccessAbility, Winter 2002-03.) The Circuit Court overturned the District Court, and the case was headed for the Supremes until disability advocates successfully lobbied the state government to withdraw it.

In April 2003 the Gideon-Putnam Hotel in Saratoga, NY played host to numerous vendors displaying the latest voting machine hardware that was supposed to be useable by individuals with various disabilities. Vendors lined up along the walls were hawking what they thought were the most user-friendly voting devices. Many of the displays were the old type full-face voting machines most of us are familiar with, complete with the handle to pull the curtain closed behind you as you prepare to select from the maze of elections, political parties and candidates amongst the forest of voting levers. It sounds intimidating, doesn't it? Imagine if you were a voter who was legally blind. How would you know what levers to throw to place your vote? How would you go through the process of casting a write-in vote? The answer is, you could have two election inspectors of differing parties assist you with casting your votes, or you could have a person of your choice assist. Where is the privacy and dignity for the voter? The voter's privacy and dignity have been negated by the system favored by many politicians.

The full-face system is a product of old-fashioned thinking. Many politicians favor the full-face system and say it's what the public is used to. Essentially it's a veiled way of saying they (politicians) prefer the full-face voting system because it's cluttered and confusing, and voters tend to vote on straight party lines because of that fact. There's also the unfounded reasoning that it will cost too much money to train people to use newer computer-based systems. Some would reason that older voters would be confused by computerized systems using touch screens. Among more far-fetched notions offered by those favoring full-face systems instead of computerized systems is the claim that the new systems could be infected with a dreaded computer virus. Computer viruses have to be uploaded into a computer. The odds of that happening to the computerized voting systems is virtually nil since software copies for machines would be distributed by a parent company. Another ill-founded fear is losing voting data due to a power outtage during an election. According to the manufacturers, the non-full-face voting systems have a battery backup that can last at least 16 hours, which is more than ample time.

In all fairness, attempts to update full-face voting machines were displayed at the Gideon-Putnam. One eye-catching design looked similar to a large flat screen television, complete with color graphics, touch screen, earphones with audio prompts for those with visual disabilities, and a keyboard for inputting write-in votes, etc. With its high tech appearance, you almost wanted to forget it was only a touch screen version of the same old thing-- with a few accessible features thrown in. It was at an agreeable height for those who either are ambulatory, of short stature, or use a wheelchair.

Other full-face systems made accessibility attempts. One system could angle the voting levers down for someone who has difficulty reaching a standard system. This system was slow and quite noisy while it went through the mechanical angle adjustment process. Another full-face voting system seemed to have appeal to those who used wheelchairs or scooters. It enabled them to approach the voting booth head-on to vote due to the fact the privacy screen could expand out around a scooter or wheelchair. There was leg room beneath the voting selectors enabling seated voters to face the ballot, instead of having to be parallel, to place their vote. This system also featured a voting panel that could angle down for ease of reach and view, though many found the glare from the lighting made it difficult to see. One last full-face system made only a feeble attempt at accessibility by adding a keypad and headphones. The vendor apologized and said the audio wasn't working in his demo unit, but assured it would in practice. Some but not all full-face systems had braille lettering for voting identification.

So what is the appeal of non full-face voting systems? It can be summed up in one word--simplicity. All non full-face systems displayed either looked like an ATM screen or a small, thin, LCD computer screen. They all featured color touch screens, audio prompts, and keyboards (some in the standard QWERTY format familiar to computer typists) for inputting voting data.

The beauty of the non-full-face systems is their universal appeal to all voters, disabled or not. These systems are easily understood, accessible to all voters and compact. Most systems have the ability to send the vote total either over a modem line, or by delivering their memory storage wirelessly to tabulation centers, thus avoiding miscounts and confusion (like the Florida elections a few years ago). Two systems really stuck out though. Dell's system and Advanced Voting Solutions' WinVote system had what appeared to be thin, flat-screen tablets that could either be placed on an angle-adjustable stand, or the voter could hold or place them on their lap. If a voter was colorblind, the screen colors could be adjusted for visibility. Both featured voice prompting, though they differed in how votes could be input. The Dell had an intuitive set of buttons, while the WinVote relied on touch screen inputs that made it inaccessible to totally blind people. (The WinVote screen could be "zoomed-in" for voters with low vision, but that's not good enough.) The simplicity of non-full-face voting came into play, as each election would appear on the screen, along with the corresponding candidates and their respective parties. If not enough votes were input for the election, you would be asked if you'd like to make any more selections (it is impossible to "over vote") before you would go on to the next election category. Voters are reassured they made enough selections for each election category. Each voting machine gave you an opportunity to review your votes and make any changes you would like before making a final decision. This information is right before the voter, or in the headphones, in a simple, easily understood format. No longer is the voter confronted with a sea of look-alike switches, trying to figure out if all votes were toggled correctly.

Returning to the original question posed regarding full-face voting machines being accessed by disabled individuals, "Where is the privacy and dignity for the voter?" The answer is, it is preserved by non-full-face systems that are indeed voter friendly to all people. Now it is up to the state legislature to restore that privacy and dignity by repealing the law requiring a full-face ballot.

Here's what we know about several federal disability policy and funding issues that we've been following:

Medicaid "Reform"

According to NY's Senator Charles Schumer, there is little interest in Congress in President Bush's "reform" plan for Medicaid, which would remove most of the service guarantees in federal Medicaid law in return for a temporary loan of additional funds to states. Schumer, speaking at a Broome County Chamber of Commerce breakfast in April, made the statement in response to a question from STIC Executive Director Maria Dibble. The national Governor's Association has also rejected the Bush plan. The tax cut bill passed by Congress in May includes a $20 billion one-time "emergency" aid package for states, of which $10 billion would be used for increased Medicaid costs. New York would get about $2 billion, and would use about $1.5 billion to offset Medicaid costs--though the issue is largely moot here following the legislature's overrides of Pataki's budget vetoes.

MiCASSA

The bill that would give people with disabilities a choice of institutional or community-based long-term care services--introduced in Congress several years in a row without passing--was introduced again with bi-partisan support. Typically the bill dies in committee, and the outlook for passage is no better this year than in years past. ADAPT held a week of actions in May in Washington, DC in support of MiCASSA, including, notably, a sit-in at the American Nurses Association headquarters, which forced that group to pay closer attention to ADAPT's long-running call for state nurse practices laws to be amended to support community-based services.

ADA Notification Act

This is the monster that won't die. It would require people to give public accommodations 90 days' notice before filing an ADA lawsuit. Reasonable standards of courtesy do require folks to notify a business about an ADA problem and give them time to fix it before suing. On the other hand, the ADA has been in effect for 12 years and businesses have had plenty of time to get with the program. Congressman Foley reintroduced this in the House with a handful of co-sponsors. So far there is no Senate sponsor and there doesn't seem to be much enthusiasm for the bill. President Bush is on record as opposed to it.

Mental Health Parity

Identical bills to put an end to higher deductibles and co-payments, and lower service limits, for mental health coverage as compared to physical health coverage in health insurance packages, were introduced in both the House and Senate bearing the name of the late single-payer health insurance champion Senator Paul Wellstone. The bill has strong bipartisan support, including from Senate Majority Leader Bill Frist, and is likely to pass the Senate. President Bush has said he will sign a mental health parity bill, though whether he'll sign this one is unknown.

Bush Proposes Block-Granting Section 8

"Section 8" is a federal Department of Housing and Urban Development program that provides vouchers for housing costs to low-income people. Under current rules, housing complexes can be built to accept Section 8 funds, renters can take a voucher to any participating landlord, or, if the local housing authority permits it, Section 8 vouchers can be used to finance a home purchase. Many people with disabilities on fixed income depend on Section 8. President Bush wants to block grant the program to the states, which would let states reduce eligibility levels for the program and/or use it to ghettoize poor people. The President's proposal contains language that would encourage states to make vouchers available to higher-income people, and would also let states reduce the number of people with disabilities and homeless people who receive them and would also let states reduce the number of people with disabilities and homeless people who receive them.

Lifespan Respite Passes Senate

The Lifespan Respite Care Act, which would provide grants to states that opt to use them to provide a variety of caregiver respite programs, passed the Senate in April. A companion bill was awaiting action in a House committee in late May.

by Jennifer Grove

The Technology Related Assistance for Individuals with Disabilities (TRAID) Project is a federally funded project through the New York State Office of Advocate for Persons with Disabilities. There are currently thirteen regional TRAID centers in New York that provide assistive technology services to over 100,000 persons with disabilities across the state. "Assistive technology" is any item, product, or piece of equipment that can be used to maintain or improve the functional abilities of individuals with disabilities. These products can be as simple as a modified hairbrush handle or a walker, and as complex as a voice-activated computer program. The TRAID Project aims to assist people with disabilities to acquire assistive technology by means of information and referral, device demonstration, equipment loan services and training in the use and application of assistive technology devices.

Unfortunately, these services are in jeopardy due to a possible loss of funding. The TRAID Project is federally funded by the Assistive Technology Act (ATA). Currently the Assistive Technology Act includes a provision requiring a "sunset" of grants to state programs, in cycles that gradually decrease their funding until it is completely eliminated. The President's Fiscal Year (FY) '04 proposed budget eliminates federal funding for New York's TRAID Project. In order to prevent the project from being closed, the ATA needs to be reauthorized and changed to remove the sunset provision. This will allow all states to continue the "core" funding necessary to maintain State Assistive Technology programs and critical services to citizens with disabilities.

The federal appropriation bill also needs to be amended in order to provide State Assistive Technology programs the same funding level as in FY '03. The FY '03 appropriation amount for Title I of the ATA was $26,824,000 and the NYS TRAID Project's portion of this is $458,703. Without continued federal ATA money, New York State will not be able to keep providing the assistive technology services that have enabled so many New Yorkers with disabilities to become more independent.

The long-term impact of this loss of assistive technology funding would mean higher government costs to maintain people with disabilities in government-subsidized programs. In addition, without the TRAID Project, which includes a free equipment loan/try-out program and individual advisement concerning technology, inappropriate equipment would be purchased by many federal and state funding sources, wasting money and failing to meet the needs of persons with disabilities.

If you want to help keep STIC's TRAID Project running, please call your federal representatives and urge them to support reauthorization of the Assistive Technology Act, removal of the sunset clause, and amendment of the appropriation bill to provide level funding for State Assistive Technology Programs in FY '04. With their support, we can work towards the continuation of the TRAID Project and the provision of assistive technology services for people with disabilities.

As you probably know, Governor Pataki lost this year's budget battle. After negotiations between Pataki, Assembly Speaker Silver and Senate Majority Leader Bruno broke down, the two houses of the state legislature agreed on their own budget, which restored most of the Governor's cuts and used an income tax increase on wealthy New Yorkers to pay for it. The Governor vetoed the whole thing, and as soon as he put his pen down, the Senate and Assembly overrode the vetoes. Ballgame over; the people win. Mostly.

What were the results for people with disabilities? Overall they were very good, but the legislature did make some big mistakes. Here's a summary:

Most Integrated Setting

This is not really a budget issue, but the Governor had included, as part of his "Governor's Program" bills, amendments to the recently-passed Most Integrated Setting (MIS) law that would have severely weakened that effort to move New York's disability services and policies to a single focus on integration. These were the same changes that Pataki tried to make after the bill was passed, and which ADAPT forced him to drop. (See AccessAbility, Spring 2003.) The legislature usually deals with Governor's Program bills at the same time as the budget, when they can be used as negotiating chips. In this case, Speaker Silver dug his heels in and refused to accept the amendments, the Senate followed suit, and the MIS law was left untouched.

ong Term Care

The legislature's budget eliminated Pataki's proposed gross receipts tax on homecare programs while retaining a gross receipts tax imposed on nursing homes in 2002, though this was reduced from 6% to 5%, with a planned complete phase-out over 2 years. A few other items that pulled money away from nursing homes were also dropped. The legislature does like the idea of creating new administrative utilization review procedures to reduce the number of homecare hours used, probably mostly downstate, but as we understand it, they did not approve the Governor's proposal in this area. We don't know what became of the long-running homecare cost-cutting targets for downstate counties. We'll let you know as we find out more.

Early Intervention

All cuts in this area were rejected, including a plan to make families with incomes over 160% of the federal poverty level pay 20% of the cost of early intervention services, a bill that could easily have reached an unaffordable several thousand dollars annually.

Universal Preschool

Pataki's proposal to eliminate New York's universal preschool program was rejected. This essential program provides the only reliable means of ensuring that children with disabilities--who are entitled to preschool services under federal law--will get those services in an integrated setting.

SSI

Pataki's SSI "take-back" (which cut New York's share of SSI income subsidies for people with disabilities by the same amount that the federal government raised its share) was defeated. SSI recipients will see an approximate $13/month raise.

Medicaid

The legislators rejected most, but not all, of Pataki's cuts here. Most significantly, increased prescription co-pays, and most take-backs of cost-of-living increases for health care workers, were dropped. Child Health Plus was restored to its current state. The Preferred Drug Program legislation has been put on hold for now; while the legislature sees cost-saving value in the idea, they want to pass some consumer protection legislation first that will, hopefully, reduce the destructive effects of such a program.

Local Aid

It appears that virtually all the Medicaid cuts that would have shifted cost burdens to counties were dropped. Counties should now have no reason to significantly raise property taxes due to health care costs. Pataki's attempt to pull federal special education funding away from school districts to pay for the state education bureaucracy was also overturned, so districts no longer have that excuse for raising school taxes.

Independent Living

The Governor's annual $1.2 million cut in state funding for Centers for Independent Living like STIC was restored; we'll get level funding this year.

VESID

Likewise, the Governor's annual $2 million cut in VESID funding for "case services" was restored, so they'll also see level funding, and $1.5 million that the Governor wanted to cut from supported employment services for people with developmental disabilities is restored. In the "mixed bag" category, Pataki's unhelpful, politically-motivated proposals to move VESID out of the State Education Department and to move both VESID and CBVH to the Department of Labor were nixed, but no steps were taken to consolidate all supported employment programs effectively, under VESID, as called for by the NYS Disability Budget & Policy Coalition.

Mental Health

While the legislature's budget is a major improvement over what Pataki proposed, in the area of mental health, Silver and Bruno really dropped the ball.

Pataki had proposed to resurrect the "Community Mental Health Reinvestment Act" by closing 3 psychiatric hospitals and merging two psychiatric research facilities into one, and using the funds to beef up community-based services for people with mental health disabilities, including new housing and more support services for residents of the state's scandal-plagued adult "homes". Pataki's plan was a drop in the bucket of what was needed, but it was aimed in the right direction and was the one bright spot in his proposed budget. The legislature, however, canceled the institutional closures. It also rejected Pataki's plan to take support service money away from the negligent adult "home" operators who caused the scandals and let independent community-based service agencies, including peer-run programs, use it to serve adult "home" residents instead. Vague statements were made about a commitment to restart Community Reinvestment "next year", but for now, it appears that there will be no funding for housing.

"Most Integrated Setting" Waiver

In a stunning failure, no action was taken to create a Medicaid waiver to provide community-based supports for people with disabilities who are not eligible for other waivers. This program would greatly reduce Medicaid long-term care spending in New York by assisting thousands of people to leave nursing homes and live in the community for about a fifth of the cost.

What Now?

There may be some hope for some of the NYS Disability Budget & Policy Coalition proposals. The Senate indicated it was interested in passing some "non-money" bills. We called their attention to several such proposals in the Coalition's Agenda, including the "MIS" waiver, adding ADA Public Services and Public Accommodations provisions to state law, and waiver of sovereign immunity in ADA cases. It's unclear if or when action will be taken on these items.

by Catherine Armstrong, Research Associate, University of Pittsburgh

If you are a wheelchair user who sits in your wheelchair while riding public buses, and you can complete a survey on the Internet or have a family member or personal assistant help you complete it, we have an opportunity for you! The University of Pittsburgh is investigating the real-world usage patterns of wheelchair transportation safety equipment on public buses, and we would like your input.

To participate in the study, you must:

• Be eighteen years or older
• Sit in your wheelchair while riding public buses
• Have access to the Internet
• Live in the United States of America

If you would like to participate or would like more information about this study, please point your browser at: www.wheelchairnet.org/survey/bus.html

by Darlene Dickenson

That's right. My name's Darlene Dickinson. My partner, Stacy Richards, and I (yes, those are our real names) work for "the agency"; we're CIA all the way. The agency is STIC, of course, and "CIA" is an acronym for Community Integration Advocate, which is our job title. In spite of my persistent pleas, the job does not include, nor permit the use of, handcuffs, disguises, listening devices, peeking devices or any other really cool spy stuff. I'd also like to point out that my partner and I do not skulk around in trench coats talking into our watches (not outside the office anyway).

In November 2002, Stacy and I began a new assignment at STIC. Our mission (and we have decided to accept it) is to get the word out to people with disabilities who want to leave nursing homes and other institutions, but don't have the information, funding, services and other supports they need to live in their own homes. As Community Integration Advocates, we also assist people who are at risk of being placed in institutional settings for similar reasons. The message we're sending is that people with disabilities do have a choice about where they live and how services are provided to them. In the "Olmstead Decision", as it has become known, the US Supreme Court declared that people with disabilities have the right to receive services in the most integrated setting possible. In other words, if an individual who is eligible for a state-funded institutional placement wishes to live in the community, New York State must have a system in place to provide whatever services that person needs to live there. Sounds simple enough, right? After all, New York does have an impressive array of community-based services to offer elderly and disabled residents. That is true, to a certain extent. Many individuals can receive funding and services through the OMRDD Home and Community Based Waiver or the Traumatic Brain Injury Waiver. Unfortunately, people who don't have a developmental disability or brain injury are not eligible for these programs. I'm talking about people with multiple sclerosis (MS), muscular dystrophy (MD), spinal cord injury, and a host of other disabilities. Without a Medicaid waiver, funding for home modifications and other needs is extremely limited; services are fragmented and some gaps may be nearly impossible to fill. As a result, many people fall between the wide cracks in New York State's funding and service mechanisms and land hopelessly in institutional beds with little hope of ever getting out.

STIC created the "No Place Like Home" program to meet the needs of these individuals. The program has several goals. First and foremost, Stacy and I work closely with people who want to leave institutions. We give consumers and their supporters the tools they need in order to make informed choices about personal care, living situations, and other areas of their lives. Our role is to help each person plan and coordinate the transition from a nursing home to his or her own home. This process primarily involves setting up housing, personal care, emergency plans and other resources to ensure each person's safety and success in the community.

In the six months between October 1, 2002 and March 31, 2003, STIC as an agency has successfully diverted 12 people from entering nursing homes, and gotten 5 people out, in three counties. That represents a reduction in annual state long-term care spending of $723,951. Our interventions range from quick-and-easy to ongoing support. For example, one individual needed a personal care attendant for five hours a week to do basic household chores. That may not seem like much, but one must consider that this elderly person lives in a very rural area, where it is difficult to find people willing to travel for such a small job. It's also pretty shocking to realize that for the lack of this small amount of assistance, someone could be incarcerated in a nursing home. But it's true, and with the assistance provided, this person is living in their own home.

In another situation, the consumer underwent a long process to make the decision to relocate to another county, and to make that move, in order to access more comprehensive services. Preventing this person from entering a nursing home requires ongoing support.

Currently, the CIA team is assisting eight people who want to leave institutions. We are happy to report that our efforts were recently rewarded! One of them has successfully made the leap from nursing home to her own home. I'll tell her story in an upcoming edition of AccessAbility, so stay tuned!

Meanwhile, the CIA team has been given another mission! We are addressing the issues mentioned above on a regional and state-wide level. If that seems like a monumental task, it is! Fortunately, Stacy and I are part of a much larger team that includes not only STIC, but many other organizations as well. We are continuing to develop relationships with agencies and volunteer organizations throughout Broome and Tioga counties. We hope to establish a cohesive network of resources to fill the service gaps in our community. To that end, STIC will facilitate a community-wide meeting to launch the ACTION coalition. ACTION stands for "Achieving Community Transitions In Our Neighborhoods". Its mission is to:

1. Identify common barriers that prevent people with disabilities from living in the most integrated setting possible.

2. Establish and maintain a network of organizations that will exchange information and ideas for the purpose of reducing these barriers and improving the continuity of services in our community.

3. Support people with disabilities in their efforts to transition from institutional settings into the community.

4. Collect data to present as evidence to New York State government in support of the need for a Medicaid waiver to serve those individuals currently falling through the cracks in the existing model of service provision.

If you are or know a person who would like to leave a nursing home or other institution, take action! Call STIC at (607) 724-2111 (voice/TTY) and ask to speak with Darlene or Stacy, your friendly neighborhood CIA representatives. If you represent an organization or service provider and you want to take action, we would like to hear from you. This is Darlene Dickinson (yes, that is my real name.really) signing off.