AccessAbility

In late June the US Senate's cutely-named "HELP" (Health, Education, Labor and Pensions) Committee approved its version of the IDEA reauthorization bill, S. 1248, the "Individuals with Disabilities Education Improvement Act of 2003".

This bill is, in most respects, a big improvement over the House bill that we reported on last issue. However, the Senate did not provide an acceptable alternative to the House's destructive approach to the student discipline issue, and there are some points on which the Senate bill is actually worse than the House version. As a result, STIC considers S. 1248 to be just as unacceptable as the House bill.

Here's our rundown on the important points where the two bills are the same or differ, in order from most to least controversial. This time we won't explain the issues in great detail; check the Summer 2003 issue of AccessAbility for more information. Once again, our analysis is based on an actual reading of the bills and not on propaganda from one side or another in the IDEA debate.

Discipline

One of the most contentious issues in IDEA history, and the single worst feature of both bills, is the approach to discipline for students with disabilities. Some disabilities can cause behavior problems, and when they do, "traditional" or "common sense" discipline often backfires and makes things worse instead of better. A lot of teachers and school administrators don't care about that; they just want these kids out of their jurisdiction so they don't have to do the extra work to meet their needs. The issue has become a battleground in the endless political "culture war" that the extreme right has been waging against reasonable people for the last 20 years or so.

The Senate version retains "manifestation determinations" in the law. That is, if a child with a disability violates a school rule, his/her IEP (Individual Education Plan) team must meet to decide if the behavior was caused by (a "manifestation" of) the disability. If it was, the child can't automatically be moved to an "alternate placement" as a punishment. This is better than the House version, which dropped the entire notion that misbehavior caused by disability should get special consideration regarding punishment. But it's not good enough, because unlike the current law, the Senate would let the school move the kid as soon as the team decides that the behavior was not caused by the disability, even if the child or his/her parents appeal that decision. Since such a move could harm the child if done for the wrong reasons, STIC believes the child should not be moved until all appeals are exhausted.

The Senate bill, the House version and the current law all make exceptions to this process for behavior involving guns or drugs; in those cases, kids can be moved immediately.

The Senate also introduces a whole new section devoted to providing grant funds for school districts to beef up their positive behavioral support services, including direct services to kids, training for teachers and other school staff, and family outreach services including case management and counseling. This is an excellent idea--but it doesn't change the fact that S. 1248 is unacceptable on the discipline issue.

Attorney Fees

The House bill sought to quash IDEA lawsuits by requiring governors to impose limits on attorney fees for such suits, a measure that has never been applied to any other civil rights legal action. The Senate version doesn't contain this language at all. It does say that fees must be "reasonable" and it imposes some fair limits on when attorney fees can be paid. STIC has no problem with the Senate's take on this issue.

Short-Term Objectives

Here's an area where the Senate bill is actually worse than the House version. The House proposed a "two-track" system for students with disabilities. Those who can benefit from a standard academic program would follow the same evaluation procedures and timetable as nondisabled students; those with significant intellectual disabilities would have an "alternate" program with modified assessments and short-term objectives specified in their IEPs. The Senate bill doesn't have this two-track system and it removes all references to short-term objectives.

STIC firmly believes that students who can handle standard academics should be evaluated in the same manner as nondisabled students. However, we believe just as strongly that the Senate has gone the wrong way on students with intellectual disabilities and it must adopt the House's language.

3-Year IEP

Another controversial issue was the House's option for students to have a 3-year IEP with brief annual reviews and full-blown comprehensive assessments at "natural transition points". The House was clear that this could only be done with parental consent and that even with a 3-year IEP, parents could demand a complete review at any time. The Senate backed away from the flurry of (in our view) inexplicable objections to this voluntary option. Their bill only offers it to students over the age of 18 (that is, typically students with developmental disabilities, especially intellectual disabilities, who need extensive post-school transition assistance and whom schools are required to serve until they turn 22).

We at STIC didn't have a problem with the 3-year IEP option in the first place; we thought that in some cases, it could help to "lock in" supports such as attendants, sign-language interpreters, or interpreters, or assistive technology that really ought to be permanently mandated for any child who needs them. But we don't think the Senate's change is worth fighting over.

Excessive Classifications

Our long experience with special education supports the widely-held view that many children are wrongly "classified" as having learning or severe emotional disabilities, and that this has been happening more and more frequently. We believe that most of these children have very real problems that fall into one or more of the following categories: they have dysfunctional, neglectful, or abusive families; they've been sent to crummy primary schools that have failed to teach them to read; they are not native English speakers; or they are black kids who are facing racism in overwhelmingly white school districts. These are problems that should be addressed by the education system; they are just not disabilities. The reason why special education money should be used to address them is because in young children whose brains are not fully developed, they can actually cause permanent disabilities if preventative measures aren't taken.

The House included several provisions to address this problem. The Senate's version is pretty watered down. The Senate doesn't cap funding for states that have disproportionately high percentages of "classifications". It also doesn't include the House's "sense of Congress" statement that kids who don't have a medical diagnosis should not get special ed services, and it doesn't contain the House's Comptroller General study of how states define and assess these disability categories. Both bills tighten the definition of "specific learning disability" to clarify that an academic performance discrepancy isn't part of the definition. Both versions would let school districts spend up to 15% of their IDEA money on "early intervention" services designed to prevent environmental problems from turning into permanent disabilities, such as screening and intensive remedial reading programs. Both would protect IDEA funds from being used for such purposes by districts that don't meet minimum requirements for providing a "Free Appropriate Public Education" (FAPE) to children who have been identified as having disabilities. However, the Senate bill does not include the House's provision to force districts that have higher-than-normal classification rates to spend the maximum on such services.

STIC believes that the Senate bill is too weak on on this issue and the House's provisions should be substituted in the final bill.

Excessive Paperwork

The Senate doesn't seem to have bought the argument that IDEA is a "paperwork nightmare". Like the House version, the Senate bill calls for a Comptroller General study of paperwork requirements, but beyond that it just says that states should "focus" on student performance when monitoring and evaluating school districts. The House's ten-state demonstration program for cutting paperwork is not in the Senate's version either, though states can spend some of their administrative money on paperwork-reduction initiatives if they wish.

STIC believes that simpler is usually better when it comes to regulation, but we don't have very strong feelings on this subject either way.

Due Process

The Senate bill doesn't contain the voluntary binding arbitration option for dispute resolution that's in the House bill. It does double the new statute of limitations for filing a formal complaint against a school district from the House's one year to two years. It also retains the two-step local fair hearing/state-level appeal process that the House collapsed into one state-level hearing with no appeal. The Senate bill requires formal complaints to be written and to contain such mind-numbingly difficult items as the child's name and address, a description of the problem being complained about, and a description of what the parents want the school to do instead. Sorry, we just can't resist the sarcasm here; we will never understand why some advocates claim that these minimal requirements are just too burdensome for parents.

The Senate has a similar provision to the House's requirement that districts "convene" a meeting with the parents when they file a formal complaint, but unlike the House bill, the Senate specifically states that this is to be a full IEP meeting. As in the House bill, the meeting can be waived by the parents and the district. Moreover, the Senate says the meeting is not required if the parents opt for mediation before going to a hearing. The Senate also specifically clarifies that parents can bring a lawyer to this meeting, by stating that the district can bring its lawyer only if the parents bring theirs. The House bill doesn't mention lawyers at all in this context. We believe the Senate's version is generally better on this point, but we strongly believe that the requirement for a full IEP meeting should be removed. If a situation gets to the formal complaint stage, it means the IEP process has failed and the responsibility for resolving the problem rests solely in the hands of the district administrators. One or two such people are sufficient for such a meeting; bringing in a whole raft of district employees is a form of intimidation.

IEP Team

The Senate bill appears to be a bit stronger on whether general education teachers must be on IEP teams. It says at least one such teacher should be if the child is, "or may be", in a general education classroom, and instead of going out of its way to repeat that general education teachers aren't always required to take part as the House bill does, it makes a special effort to repeat, in another section, that they usually are. However, STIC believes that both bills are far too weak. Every teacher who works with a child with a disability should be required to participate in the child's IEP planning--though we don't think this means they all need to physically attend every meeting.

Parental Consent

The House bill says that school districts may evaluate a child to determine if s/he has a disability without a parent's or guardian's consent, but that districts absolutely must not provide special ed services to a child without such consent. While both bills absolve school districts from liability for failing to provide special ed to kids whose parents don't consent, the Senate version doesn't specifically forbid schools to do so. STIC believes this is a mistake, because it will let schools override parents' wishes when the child doesn't have a legitimate disability and some teacher or administrator just wants the kid sent up to BOCES to get him or her out of their hair.

Forced Drugging

The House bill forbids school districts to refuse to teach kids unless they take psychotropic drugs to "control" their "behavior"; the Senate version lacks this provision. We like this rule and think it should be in the final bill.

Native Language

The House substitutes "the language and form most likely to yield accurate academic and developmental data" for the old requirement that kids must be assessed in their "native language". The Senate bill is confusing on this point. At one spot it says assessments must be "provided and administered, to the extent practicable, in the language and form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally..." Elsewhere, though, it says they must be "in the child's native language or mode of communication, unless it clearly is not feasible to do so..."

What's the real requirement? Your guess is as good as ours. In any case, STIC doesn't have a problem with these formulations; they all nicely get around the politically touchy issue of the "national language" without doing any harm to the kids. Some people will object to the Senate's "to the extent practicable" phrase. Our hunch is that it's there to protect schools from having to go crazy trying to figure out how to assess an autistic child when the cold hard fact is simply that, at the present time, nobody knows how to get through to some of these kids.

Minor Points

Here are some non-controversial areas where the bills are the same or, in our opinion, their differences aren't worth arguing about.

Both bills require state agencies to apply the same achievement standards to kids with and without disabilities, and to apply the same requirements equally to charter schools and traditional public schools. Both clarify requirements for schools to provide reasonable accommodations for students with disabilities in assessments and academic programs. The Senate is better on this point because it says schools should make an effort to follow "universal design" principles--that is, tests and assessments should be designed in such a way that most students with disabilities won't need accommodations to take them and so accommodations, if needed, can be easily and quickly put into place. Both bills require that the majority of members of state special education advisory panels be people with disabilities or parents of young people with disabilities. Both bills require states and school districts to enforce a new federal law that all textbooks and other instructional materials must be provided in electronic format by publishers so they can be adapted for use by students with disabilities. The Senate bill omits the House's admittedly non-binding urge that school districts hire people with disabilities as teachers and administrators. The Senate bill includes a section that amends the federal Rehabilitation Act to "improve and expand" voc rehab and transition services for students with disabilities aged 14 and up; it's not clear what the actual effect of this will be.

Money

The Senate doesn't even bother to predict how much money may be appropriated for IDEA. The House put forth a multi-year schedule for increasing appropriations up to the legendary "full 40%" of special education costs, but it's completely non-binding. The actual money will be appropriated in separate annual bills.

Next Steps

The full Senate will probably take up S. 1248 fairly soon after it returns from summer recess in September. At that time various amendments, good and bad, are likely to be proposed, and the debate could be lengthy. Once passed by the Senate, a House-Senate conference committee will be appointed to reconcile differences between the bills and produce a final version for the President to sign or veto.

A final bill probably won't be ready until early next year. While both parties would like to take credit for what's perceived as much-needed "reforms" in special education, they also don't want to do anything to annoy either teachers' unions or militant parents too close to the presidential election. Our guess is that if the bill isn't finished by late winter, Congress will either slap together a quick reauthorization of the current law and call it good, or delay the whole thing until 2005.

Disability advocates were pleased with the tone and much of the content of the federal government's recently-released assessment of mental health services in the United States. Bush Administration officials deplored the focus on custodial "care" and management of symptoms in a mental health system that, they said, requires "fundamental transformation". Bush himself said, "... Americans must understand and send this message: mental disability is not a scandal--it is an illness. And like physical illness, it is treatable, especially when the treatment comes early."

Bush made the remark on the occasion of the release of Achieving the Promise: Transforming Mental Health Care in America, the report of President's New Freedom Commission on Mental Health. The Commission is part of Bush's "New Freedom Initiative" to study disability service systems and recommend changes to increase integration, independence and community participation by people with disabilities. Here's a summary of the report:

Somewhere between 5% and 7% of adult Americans, and 5% to 9% of their children, have a serious mental illness. In other words, between 10% and 15% of the population has conditions such as chronic deep depression, schizophrenia, bipolar disorder, obsessive-compulsive disorder, post-traumatic stress syndrome, chronic substance abuse, or severe emotional disturbance. And most of that huge number of people are inadequately served due to the social stigma surrounding mental disabilities, the lack of "parity" for mental illness coverage in private insurance plans, and a mental health service system that does not keep up with current medical knowledge and which tends either to "unjustly incarcerate" people with mental illness or ignore them entirely.

One of the most remarkable facts in the report was the statement that it typically takes the system between 15 and 20 years to adopt new forms of treatment. And one of the most inspiring quotes was, "the Nation must replace unnecessary institutional care with efficient, effective community services that people can count on." This echoes the message that New York's mental health advocates have been repeating for the last 20 years.

The Commission believes that officials responsible for all levels of the mental health system, in all parts of the country, need to absorb a critical fact that has been understood by researchers and educators for nearly a quarter-century: Virtually every person with a mental illness can be assisted, through treatment and support services, to have a meaningful, productive life in the community. They may not be "cured" but they can "recover" the ability to function and contribute. The system needs to be focused on enabling recovery for all. That means it needs to stop wasting resources on "custodial" settings like adult "homes" and psychiatric centers and focus on community-based supports. It also needs to invest in early childhood screening and intervention to ensure that medications, treatments, and family supports are applied as soon as possible. This will prevent children with mental illness from deteriorating to the point where they can't learn in school and can't be handled by their parents.

The report envisions a future when mental and physical illnesses are treated the same: Regular checkups should involve mental health screening. Early signs and symptoms should be treated aggressively. Insurance coverage must not be arbitrarily limited. Notably, the report properly defines substance abuse as a form of mental illness that requires the same comprehensive response as any other such disease.

The Commission calls upon service professionals to apply the lessons learned from the developmental disability arena: Services for people with serious and persistent mental illness need to be comprehensive, based on a holistic plan that is developed by maximizing input from the person and his/her family, that addresses not just medical but education, employment and relationship issues, and that provides as much control as possible to the person and/or family, including control over how funds are spent.

The report cites the Supreme Court's Olmstead decision and its tone convincingly conveys a sense of the nation's moral and legal obligation to turn this system around.

Unfortunately, the rhetoric is much more convincing than the substance. The report lacks specific implementation ideas.

A familiar model is proposed: States would have to develop "state mental health plans" to describe how they would reorient their systems to ensure regular early screening, including in schools; person-centered planning; up-to-date treatments; consumer-controlled community-based supports; and widespread availability of this stuff to all who need it.

This is a great idea. It's going to take a lot of money to carry out, though. The report makes it clear that the Commission was told to emphasize redirecting existing resources instead of new spending. The Commission did that by saying that such redirection should occur. It didn't explain how. Frankly, we don't blame them for not trying to explain how to do the impossible.

More lessons need to be learned from other disability service systems if this grand and positive vision is to achieve reality. New York's experience is instructive. The most important lesson is, it costs extra money up front to transform a system, because for a while, both new and old systems must exist side-by-side. If the mandate is for a simple "redirection of resources", the change will never happen because the stakeholders for the old system won't permit it. This is what has happened at OMRDD. There needs to be a massive injection of new funds into the new system to make it stable and attractive. Once that has been done, the old system will wither away. The second big lesson is that new people have to be brought in to manage new systems. VESID did not respond to years of "consumer driven" demand for change until its top leadership was replaced by people who shared the new vision. OMRDD has failed to create a truly consumer-responsive system that enables self-reliance and integration because despite all its rhetoric about "self determination", "person-centered planning", and "community integration", the agency is run by people who are afraid to let people with disabilities run their own lives and are refusing to make the regulatory and procedural changes that are needed for these new ideas to work.

This is a federal proposal, and hard facts must be addressed on that level also if it is to succeed. Unless and until President Bush reverses gears on tax cuts, his New Freedom Commission will not do anything substantial about mental health or any other disability services, because there won't be money to pay for it. Unless and until Bush stops appointing federal judges who want to weaken the power of the federal government, he will have no tools to compel states to implement the lovely plans his Commission proposes. Self-defeating irrationality is a frequent symptom of mental illness. It is a common symptom of the nation's mental health service system. Nothing much will be done about either of these things, though, as long as it is also part and parcel of the President's policies.

Supreme Court Takes on a Make-or-Break ADA Case

Title II of the Americans with Disabilities Act is once again facing a trial by fire in the Supreme Court. We've been here before, but the law always seemed to dodge a bullet when advocates persuaded one side or the other to settle the case or drop the appeal. That's not likely to happen this time. Both sides in this showdown appear to be fully aware of what's at stake and are planning to have it out.

Title II prohibits discrimination on the basis of disability by state and local governments. Two related Title II cases, combined as Tennessee v Lane, are going to the Supremes, both having to do with the physical accessibility of the courts themselves. As seems to be typical with the ADA, neither of these is an ideal test case.

George Lane became a paraplegic as a result of a car accident. He was driving with a revoked license at the time. Summoned to an inaccessible courthouse for this offense, Lane crawled up the steps for his first court appearance. However, he refused to do so the second time and requested that the proceeding be moved to an accessible location. The court refused.

Beverly Jones, also a paraplegic, is a court reporter by trade. Her claim is that she is unable to gain employment in Tennessee courts because many of them are inaccessible.

Tennessee opposes both these claims on the grounds that Congress overstepped its authority in writing the ADA to enable citizens to sue state governments. Yes, it's the 11th. Amendment defense again. It goes like this: The 11th. Amendment says citizens of one state can't sue another state without that state's permission. After the Civil War the Supreme Court expanded it to mean that citizens can't sue their own states either. At around the same time, the 14th. Amendment was enacted. It says Congress can override states' 11th. Amendment protections if necessary to guarantee equal treatment for all citizens under the law. Originally done to force southern states to let former slaves vote, this quickly became the basis for enforcing most federal civil rights laws at the state level. Over the last ten years or so, a series of Supreme Court cases has severely weakened the 14th. Amendment. The Court said Congress can override the 11th. Amendment only under very limited conditions, and the Court has the final say on what those conditions are. The Supremes think racial minorities and women need more protection than people who are elderly or have disabilities, so Congress has more leeway in writing civil rights laws for the first two groups. In the Garrett decision, the Court said it doesn't believe that people with disabilities have experienced all that much deliberate discrimination by state governments, and that anyway it's often "rational" to discriminate against people with disabilities because, well, you know--they just can't do stuff. Garrett wasn't about Title II, but it contained an ominous digression that laid out exactly how the Court would find Title II unconstitutional if it got a chance.

State officials are getting very good at regurgitating this argument back to the federal courts, and Tennessee has made it clear that this is exactly what it plans to do.

These aren't particularly good Title II cases. Lane is an unsympathetic character with a good argument. Why do so many ADA cases involve petty criminals, and why can't advocates find better candidates to carry our standard into battle? Regardless of the merits of his case, it's going to be tough selling Lane to the public. Jones, on the other hand, is a nice lady with a bad case. Employment access issues under the ADA are handled individually, as they arise. If a particular person is otherwise qualified for a specific job with a certain court, it may or may not be a "reasonable accommodation" under the ADA for that court to make itself accessible in order to hire her, depending on how much effort and expense that involves, and the size and budget of the court's jurisdiction. Title II does not entitle a person with a disability to expect that all courts will be made accessible on the off chance that she might apply for a job at one of them. Jones' case could further confuse a Supreme Court that has already demonstrated several times that it doesn't understand the background, Congressional intent, or purposes of the ADA.

Lane's argument, that Title II requires courthouses to be accessible to all citizens with disabilities so they can conduct business in them, is much stronger. In fact, it's so strong--its emotional essence being that no American citizen should be made literally to crawl upon the ground in homage to state "sovereignty"--that it can definitively make or break the law. If the Court decides that Title II can't be enforced against state governments, the disability rights community will lose the leverage it gained from the Olmstead decision to push integration. Justice Sandra Day O'Connor may be a swing vote on this issue; she indicated in Garrett that she wasn't necessarily going to buy the notion that the "rationality" argument can be applied as stringently to access and integration as it might be to employment.

The Supremes will probably hear arguments on these cases this fall and issue a ruling in early 2004.

Fisher v Oklahoma a Victory

The 10th. Circuit Court of Appeals handed down an ADA victory in July. Fisher was one of several people who were on a Medicaid Home and Community Based Services waiver in Oklahoma. The purpose of this waiver is to enable people who would otherwise be placed in nursing homes to remain in the community. As a cost saving measure, the state decided to limit the number of prescriptions the waiver would pay for to five, while continuing to fund unlimited prescriptions for people in nursing homes. Fisher, et. al., were on very low fixed incomes, and this prescription cap would have forced them to pay between 8% and 37% of their monthly incomes for the medications they needed. They would no longer have been able to afford to remain in their own homes, so they would have been forced into nursing homes. With the help of national disability rights lawyer Steve Gold, Fisher, et. al., sued OK under Title II of the ADA. They lost in federal district court and appealed to the 10th. Circuit, which found in their favor.

There are a lot of issues here, but the central one for disability advocates is the Appeals Court's finding that a state can't simply consider one budget line item when deciding if it is reasonable to cut a Medicaid-funded service to close a budget gap. As the court said, "An inescapable irony of the decision to cap prescriptions for participants in the [waiver] program is that, given that the cost of institutional care is approximately twice as high as community-based care [in Oklahoma], if the plaintiffs are indeed forced to enter a nursing home to obtain necessary medical services, any cost savings achieved by the prescription cap will be quickly eroded." In other words, the entire long-term care budget must be taken into account, and a state has no legal business using cost-containment as an excuse for steps that would force people into institutions when the end result would be that the state's total long-term care spending would increase.

There was no immediate word on whether Oklahoma would appeal this decision.

Prior Filibustered

Disability advocates have apparently gotten through to the Senate on President Bush's nomination of William Pryor to the 11th. Circuit Court of Appeals. Pryor is the Alabama Attorney General who hired Jeffrey Sutton to represent the state before the Supreme Court to defend its decision to fire Patricia Garrett largely because her boss didn't want to work with somebody who had survived cancer. This was the famous Garrett decision that weakened the ADA's employment discrimination protections and threatened its ability to regulate state governments. Pryor's nomination is being filibustered, and several Democratic Senators have publicly stated that his stance on the ADA is one of the reasons. This is good news, but they should have done it with Sutton too, and they should continue to do it for every single judicial nominee who would weaken the ADA.

One of George W. Bush's better ideas is to provide grants to states to enable them to cover the up-front costs of assisting people to leave nursing homes. This "Money Follows the Person" initiative is one of Bush's few New Freedom proposals that actually has money attached.

While community-based supports are far less expensive than nursing homes (80% less, on average, in New York State), it can't be ignored that a lot of people in nursing homes have no housing to move into or household accessories once they get there. A long-term view of budgeting would suggest that it's worth it to pay these costs up front, one time only, to enable a person to leave a nursing home and live in the community. But some people can't seem to grasp the long view, so President Bush wants to offer an incentive.

Under "Money Follows the Person", a state that provides a Medicaid Home and Community Based Services waiver to assist people to leave nursing homes can get 100% of first-year costs for that waiver paid by the feds for every person who moves into the community. That includes any subsidies for rent, security deposits, furniture, and household goods necessary to enable the transition, plus attendant services costs. In subsequent years, the state would pay its usual Medicaid share for attendant services, but those higher first-year costs would be gone.

Bush has been unable to get Congressional support for this idea even from Republicans. The national nursing home lobby is a powerful opponent of the measure, as is a public-employee-union-funded group called "Voice of the Retarded". Both of these groups regard people with disabilities as nothing more than a meal ticket, and they are afraid their members will lose money if people with disabilities are released from institutions.

Senator Tom Harkin (D, IA) has been trying to get this idea funded by attaching it as an amendment to various other bills. After his attempt to link it to a Medicare prescription drug bill was defeated, he decided to introduce it as a stand-alone bill. So we now have the S. 1394, "Money Follows the Person Act of 2003. We'll follow its progress in upcoming issues.

The New York State Most Integrated Setting Coordinating Council is finally getting off the ground.

The Council was mandated by legislation that STIC, ADAPT, and other advocates fought tooth and nail to get passed over the past year or so. ADAPT staged a dramatic sit-in to force Governor Pataki to sign it without imposing weakening "technical amendments" in 2002. Pataki tried to sneak those amendments in with his budget proposal this spring, but was stopped in his tracks by the state legislature.

The Council's job is to review all of the state's disability service systems, identify service gaps and other barriers that lead to unnecessary segregation, and propose a plan to ensure that all of these service systems will be focused on maximum integration from now on. The result will be an "Olmstead Plan", a means to ensure that the state complies with the Supreme Court's Olmstead decision, which stated that it is illegal discrimination under the ADA to unnecessarily segregate people with disabilities.

Two of the most important provisions of the MIS law include a requirement to create a uniform needs assessment for people with all disabilities that will be administered by a single point of entry in each county, and a requirement that all state disability agencies do what is necessary to implement the proposed changes in the final plan. Both of these requirements were among those that Pataki unsuccessfully tried to remove, along with a mandate that hard data be collected on the extent to which the state unnecessarily segregates people with disabilities.

The Council includes representatives from each of the state agencies that serve people with disabilities, as well as consumer advocates. Not all of the appointment slots have been filled, but so far the consumer/advocate members include: Karen Oats of the Mental Health Association of Rockland County, Harvey Rosenthal of the New York State Association of Psychiatric Rehabilitation Services, Greg Olsen of New York State Coalition for the Aging, Katherine Bunell of the Broome County Office for the Aging, and Patricia Fratangelo of Onondaga Community Living Inc. STIC is not familiar with Oats or Olsen but we can vouch for the qualifications and intentions of the other appointees. The State Assembly has not yet announced its appointments.

Governor Pataki appointed OMRDD Commissioner Thomas Maul as the first of the MIS Council's rotating chairpersons. This was a negative development. Maul is known to be opposed to any systemic changes that would result in large numbers of people with disabilities receiving services outside of tightly controlled segregated settings. He has repeatedly and publicly expressed exaggerated fears of potential legal liability and political embarrassment resulting from letting consumers take risks and run their own lives. He is on record as believing that the MIS Council is unnecessary and that the issues it was created to address do not exist. It is hoped that the other members can compensate for this potentially serious problem.

The first organizational meeting of the Council was scheduled for September 3. AccessAbility will report continuously on the Council's activities in the months and years ahead.

The scandal-plagued Northeast Center for Special Care (NCSC) was in the news again this summer with a third near-closure due to dangerously substandard care.

As reported previously in AccessAbility, NCSC is a nursing home that was built in a former IBM building in Lake Katrine, NY as part of a political deal fostered by the Pataki Administration. Its principle owner, Anthony Salerno, is a Pataki campaign contributor whose application to construct the facility was approved by top NYS Department of Health (DOH) officials, on instructions from Pataki's office, even though DOH's review found that the facility was not needed, that it was likely to fail, and that its creation would violate state policy. The IBM facility was one of several for which Pataki agreed to find new owners, in return for the computer company's pledge not to move all of its operations out of the state in the mid-1990s.

Salerno and his company, Hudson River Valley LLC, billed the facility as a special intensive "rehabilitation center" for people with traumatic brain injuries. This marketing ploy echoed those of the defunct NewMedico Corporation, some of whose former executives run Salerno's company, which went bankrupt in the wake of numerous scandals involving fraudulent Medicaid billing and patient neglect and abuse. In fact, NCSC is an ordinary nursing home that, at least until this summer, took in anyone with Medicaid, Medicare, or private insurance funding.

Also like NewMedico facilities, NCSC has been cited repeatedly since it opened for grave deficiencies, including severe staff shortages; inadequate and spoiled food; poor sanitation leading to contamination of the surrounding community with contagious disease; life-threatening neglect and mistreatment of patient injuries; failing to prevent mentally incompetent patients from wandering out of the facility; verbal and physical abuse and humiliation of patients who complained; and fraudulent billing for non-existent "rehabilitation" and "therapy" services. Twice the facility was forbidden to accept new Medicaid patients, twice it was placed in "immediate jeopardy" of being shut down by monitoring officials, and twice it was rescued by what appeared to be last-minute intervention by high state officials.

On July 26, 2003, an article in the Watertown Daily Times (Salerno also owns a financially-troubled nursing home in Watertown) stated that NCSC was cited for 22 deficiencies and placed in "immediate jeopardy" for a third time in May of this year, and was once again not being permitted to accept new Medicare or Medicaid patients.

The article also reported that Salerno's company had been unable to make regular payments on its mortgage for the facility for some time and was $5.5 million "in arrears", and that New York State's mortgage guarantee agency, SONYMA, had paid off the bank and taken over the mortgage. Two other Salerno nursing homes, in Rochester and Albany, have also been in "immediate jeopardy" within the last year, the paper said. Even the nursing home lobby is beginning to shy away from Salerno. The Daily Times quoted the Executive Director of the Nursing Home Community Coalition of New York State, Cynthia S. Rudder, as saying, "Possibly, this is someone who should not be in the business."

Meanwhile, New York State is now in the business of running a nursing home that never should have been built. Will this be the final straw that forces the closure of this institutional menace and sends its long-suffering inmates back to their homes and families with community-based supports? Not likely. According to the Daily Times, SONYMA has gone to bat with DOH to rescue the place one more time.

The New York State Senate has established a Task Force on Medicaid Reform to address rapidly rising Medicaid costs. The Task Force has an Advisory Panel whose job is to make sure the Task Force gets broad-based input from people who are most knowledgeable about the state's health and disability service systems. The disability community has two excellent representatives on the Advisory Panel:

Burt Danovitz is the Executive Director of the Resource Center for Independent Living, the Independent Living Center in Utica. He is a very knowledgeable and consistent advocate for disability rights and integration.

Carl Young is the President of the NYS Association of Homes and Services for the Aging. A former Broome County Executive, Young got his "early" disability education from STIC and, despite his role as a lobbyist for not-for-profit nursing homes, has consistently endorsed the idea that nursing homes should be downsized and community-based alternatives should be expanded and adequately funded for all who desire them.

Two other potentially strong disability advocates were invited to participate, but as we went to press it wasn't known if they had accepted. They are: former New York State Assembly Majority Leader (and urrent Board of Regents Member) Jim Tallon--Binghamton's former Assemblyman and another STIC-educated person who can be relied upon to act in good faith and provide fair and accurate information; and Michael Burgess, the Executive Director of the Senior Action Council, who was instrumental in supporting passage of the Most Integrated Setting bill and who has been a strong voice in support of a Medicaid Waiver for people in nursing homes. STIC hopes these two people decide to get involved.

The findings of the Senate Task Force are likely to have deep impact on disability services in New York State. It's essential that its members are educated thoroughly about the cost-saving and life-enhancing benefits of integrated community-based services. AccessAbility will keep you informed of developments.

In what could be the most important action taken by mental health disability advocates in New York State in many years, a coalition of legal aid groups is suing the state over the deplorable conditions in adult "homes" for people with mental illness.

The suit was launched early this summer, after the state legislature failed to approve a significant funding increase for community-based mental health services and rejected Governor Pataki's proposal to take the provision of support services out of the hands of negligent adult "home" operators.

Adult "homes" house approximately 15,000 people with mental illness in New York State. Many of them, especially in New York City and Long Island, are large institutions with hundreds of "beds". They are overseen by the state Department of Health (DOH), unlike other residential services for people with mental illness, which are run or monitored by the Office of Mental Health (OMH). A major scandal broke last year (see AccessAbility, Summer 2002) when the New York Times reported that large numbers of adult "home" residents had died of heatstroke, suicide, or untreated medical conditions; that most such residents do not receive any significant level of training or support services; and that conditions in the "homes" are generally dirty, depressing and crime-ridden.

The Pataki Administration has generated several scandals involving ineffective oversight and shady practices at DOH. These include: approving a Pataki campaign contributor's plan for a new nursing home that did not pass the DOH pre-approval process, and keeping it open despite repeated citations for gross negligence (see NCSC Steps in It Again for an update); failure to adequately monitor nursing home safety throughout the state, resulting in preventable deaths, injuries, and abuse of residents; and illegal incarceration of people with mental illnesses in special locked wards in nursing homes owned by Pataki campaign donors. Some top DOH administrators are former adult "home" lobbyists who represented Pataki campaign contributors.

Facing growing pressure over these issues, Pataki, in his 2003-04 budget proposal, sought a modest increase in funding for support services for adult "home" residents, the transfer of these programs from adult "home" operators to freestanding community-based service providers, and a long-term plan to construct new housing for people with mental illness. The new housing was to be funded by reviving the state's Community Mental Health Reinvestment program, which would transfer funds saved by closing large psychiatric hospitals to community-based services. Inexplicably, the state legislature, which restored billions of dollars in Pataki-proposed cuts in other disability services, failed to approve most of this agenda. This left advocates wondering if there were any serious champions for people with mental illness among the state's top leaders.

Citing these events, the lawsuit was filed by Disability Advocates, Inc., the Bazelon Center for Mental Health Law, MFY Legal Services, New York Lawyers for the Public Interest, and the Urban Justice Center. A spokesperson for the coalition compared the the suit to the landmark Willowbrook case that forced New York State to clean up, downsize, and eventually close most of its large institutions for people with developmental disabilities.

The coalition charges that New York State, in continuing to support adult "homes" and policies that channel indigent people with mental illness into them, is violating Title II of the Americans with Disabilities Act and Section 504 of the federal Rehabilitation Act.

Title II of the ADA prohibits discrimination on the basis of disability by state and local governments in the provision of programs and services. The US Supreme Court's Olmstead decision clarified that Title II outlaws both arbitrarily treating people with different disabilities in different ways, and unnecessarily segregating them from mainstream society. Section 504 prohibits discrimination due to disability by any entity that receives federal funds, including state governments.

New York State discriminates against people with mental disabilities in both ways covered by the ADA. The supports and services the state provides to people with mental illnesses in adult "homes" are, in general, vastly inferior to those it provides to people with developmental disabilities in similar settings, and worse even than a typical nursing home placement afforded to a person with physical disabilities. And the plaintiffs charge that adult "home" placement is a form of segregation that violates residents' rights to privacy, freedom of movement, and freedom of association; that regularly employs intimidation to prevent residents from filing complaints; and keeps them from accessing high-quality treatment and support services. The suit alleges that state officials have deliberately chosen to maintain this system even though they know that more-integrated, higher-quality services could be provided for the same cost.

The brief formally seeks relief only for residents of adult "homes" with more than 120 "beds" and lists 26 such facilities. This may seem like an arbitrary and unfair decision, but it appears to have been made for technical reasons. It is easier to prove the essential points that state officials are aware that conditions in the larger adult "homes" are grossly substandard and yet they are taking no significant steps to correct the problem. The relief requested by the plaintiffs--"immediate" steps to ensure that mental health services are provided in the most integrated setting possible and to correct conditions in the "homes"--should force large-scale changes to the state's mental health system that will benefit all people with mental disabilities.

In yet another apparent sweetheart deal with a nursing home operator, the New York State Department of Health (DOH) ignored the objections of highly qualified consumer advocates and applied for a federal "Real Choice" grant to create a model "deinstitutionalization" program that would move people out of a failing nursing home into group homes.

"Real Choice" grants are an ongoing initiative by the federal Department of Health and Human Services (HHS), begun by the Clinton Administration and continued under President Bush, to encourage states to find innovative ways to assist people with disabilities to move from institutions to their own homes in their own communities. They are "systems change" grants, intended to help state governments modify statewide policies and procedures to promote integration. According to disability advocates, the application instructions require states to have "continuous and active involvement of consumers in project design, implementation and evaluation", and the latest Request for Proposals from HHS says that states like New York, which was not funded in the previous grant cycle, have priority for funding this time around and should work with "Consumer Task Forces" that were involved with the previous proposals.

New York's Consumer Task Force includes prominent members of the Coalition To Implement Olmstead in New York (CTIONY), including the widely-respected advocate Bruce Darling of the Center for Disability Rights in Rochester, and representatives of consumers of long term care services, self advocates, psychiatric survivors, Independent Living Centers, senior advocates, ADAPT, consumer directed personal assistance agencies, and providers of services to the elderly. Some of these people are nationally-recognized experts in the field of community-based supports and deinstitutionalization.

CTIONY was highly critical of the Pataki Administration's and DOH's grant proposals in the last round. Advocates said that HHS's instructions indicated that the purpose of these grants was to transition people with disabilities out of nursing homes. The Administration tried to divert much of the money to the Self Advocacy Association of New York (an OMRDD-funded group that does not work with people in nursing homes) and use the rest for a project that would not in fact assist anyone to leave a nursing home. After working unsuccessfully through channels for several months, CTIONY used mass organizing tactics to force Pataki officials to change the proposals. They were changed but ultimately were not approved by HHS.

So for the current round of proposals, Administration and DOH officials bypassed the Consumer Task Force and its CTIONY members. Instead, they assembled a group of "consumer representatives" that consisted of 4 government agency representatives; a homecare provider agency; employees of AARP, the Brain Injury Association of New York State, and the Alzheimer's Association (groups that have shown no interest, and played no role, in deinstitutionalization policy up to now); and two alleged actual consumers of disability services (DOH would not provide their names so their participation cannot be verified). The NY State Independent Living Council was invited to take part at the last minute, long after any meaningful opportunity for input had passed; it declined and suggested that CTIONY be involved instead.

The resulting DOH proposal involved partnering with a single New York City nursing home, the Village Nursing Home (operated by former OMRDD Commissioner Arthur Webb), on a plan to close the facility and move its inmates into "homelike settings" (group homes) with medical-model support.

The CTIONY members were outraged, both by this plan to substitute several small segregated institutions for one big one and call it "Real Choice", and by the duplicitous behavior of DOH and Pataki Administration officials. These officials claimed that they approved this proposal because the HHS Centers for Medicare and Medicaid Services (CMS) contacted them and asked them to work with Webb on the project. In fact, it would be highly improper for CMS, which oversees the grant evaluation and award process, to show favoritism by contacting a state official to urge support for any particular proposal. Given the strong consumer-involvement focus of CMS's grant instructions, it seems unlikely that such a communication ever happened.

Under pressure from CTIONY, DOH and Pataki officials arranged a meeting to discuss the issue. However, no one with authority to make decisions about the proposal attended. At the meeting, Bruce Darling stated that the proposal does not meet HHS minimum requirements. It does not comply with the rules for consumer involvement, and its plan to close one nursing home in the unique environment of New York City is not a statewide systems change proposal. It became clear that Webb, who participated by phone, was unfamiliar with the history of the Supreme Court Olmstead decision, the HHS proposal requirements, or the state's two Medicaid waivers that have assisted people with developmental disabilities or brain injuries to live in their own homes for many years. Darling said the state could satisfy HHS requirements, and do something truly helpful, by using Real Choice money to design and develop a new Medicaid waiver program to assist people who aren't eligible for the other waivers to transition from nursing facilities to their own homes. A DOH official then told Darling that DOH was working on such a waiver proposal and that a draft had been completed. This obvious attempt to distract Darling failed. It later later emerged that there was no such waiver proposal and the DOH official had deliberately lied.

STIC has also learned that Webb had been planning to close this nursing home (which Governor Pataki visited in April to promote new health-care "whistle-blower" legislation) for some time and had been looking for a way to pay the up-front costs. CTIONY was not able to put a stop to this apparent malfeasance; DOH submitted the proposal as written.

In response, CTIONY has urged its members and disability advocates across the state to contact CMS and tell them not to approve this or any other Real Choice proposal from New York that does not have the support of the largest and most broad-based, qualified, and knowledgeable group of disability and senior citizen deinstitutionalization consumer advocates in the state.

We'll keep you updated.