AccessAbility

Garrett vs. Alabama is Back!

Pat Garrett is back in court. Garrett is a woman with breast cancer who was fired by the University of Alabama, apparently simply because her boss was uncomfortable being around people with cancer. Her case, Garrett v Alabama, became infamous when the Supreme Court used it not only to deny people with disabilities the right to sue state governments for money damages under the ADA's Title I, which governs employment discrimination, but also to lay out an argument for declaring unconstitutional the law's Title II edict against discrimination in programs and services provided by state governments.

The ADA wasn't the only law under which Garrett sued, though. She also filed under Section 504 of the federal Rehabilitation Act. After she lost her ADA case, the federal district court that first heard her suit then considered her 504 claim--and ruled against her again, saying that the Supremes' finding that Congress overstepped its bounds in "abrogating" (overriding) states' 11th. Amendment immunity from lawsuits in the ADA also applies to the Rehab Act. She then went to the federal 11th. Circuit Court of Appeals, which ruled in her favor and sent the case back to the District Court.

Section 504, which predates the ADA by almost 20 years, forbids discrimination due to disability, in both employment and the provision of programs and services, by any entity that gets federal funds--including universities and other programs operated by a state. The Rehab Act provides that, by accepting federal funds under the Act, a state automatically waives its 11th. Amendment immunity. You'll recall that this immunity has been the basis for several recent Supreme Court decisions, including Garrett, that have limited US citizens' ability to enforce civil rights laws against state governments.

But there's an important difference between the ADA and the Rehab Act in how the 11th. Amendment is abrogated. The ADA is a civil rights statute that simply declares that no state is immune from suits under it. The Rehab Act, though, is primarily a program law (it funds state vocational rehabilitation agency programs such as VESID supported employment, and federal grants for Centers for Independent Living, among other things). States don't have to accept Rehab Act money, and the law is very clear that if they do, they voluntarily consent to waive immunity. The Supreme Court has viewed such voluntary waivers as more binding on states than the involuntary kind found in the ADA.

Another case we've talked about before, Garcia v SUNY Health Sciences Center, re-enters the picture here. In that case, a different federal Appeals Court said that state governments must knowingly consent to abrogation of immunity under the Rehab Act, and ruled that New York could not have done so because it would have assumed, after the ADA, that it no longer had any immunity to waive.

A 3-judge panel of the 11th. Circuit, in affirming Garrett's standing to sue under Section 504, rejected that argument. Citing its previous decision in Sandoval v Hagan (a case about an Alabama law requiring that drivers license exams be given in English), the Court said that the fact that a state was aware of an explicit abrogation of immunity in a federal program law, and continued to accept federal money under that law, proved that the state knowingly consented to waive its immunity. The Supreme Court reviewed Sandoval, and while it overturned the Circuit Court's decision in that case on other grounds, it specifically approved its stance on immunity waivers, stating that "...the Rehabilitation Act Amendments of 1986 ... expressly abrogated State's sovereign immunity against suit brought in federal court ..." and adding that it is "beyond dispute" that private individuals could sue a state under that law.

As of press time, Alabama had not decided whether to appeal this decision. If they decide to do so, they would probably first ask the full slate of 11th. Circuit judges to rehear the case and overturn what the 3-judge panel said. Depending on the results of such an "en banc" review, either side might then appeal to the US Supreme Court.

While this case doesn't help the beleaguered ADA, it is hugely important because it could strengthen or destroy the Rehab Act's value as a civil rights protection. Stay tuned.

Tennessee v Lane

This is the ADA Title II case that is headed for the Supreme Court that we reported on last issue. It concerns physical accessibility of state court facilities, and it could be the excuse the Supremes have been looking for ever since the Garrett decision to find Title II's provisions concerning state governments unconstitutional in their entirety.

Since our last issue, the state of Minnesota has filed an amicus ("friend of the court") brief in support of Title II's applicability to state governments, and advocates were able to get nine other states, including New York, to sign onto that brief. Seven states have submitted a brief in support of Tennessee's position against Title II. Several other pro-ADA briefs were filed, including one from the former US Attorney General under the first President Bush, Dick Thornburgh. Bush the Younger's Justice Department has even filed as an "intervenor" in support of Title II. The Supreme Court has scheduled oral arguments for January, with a decision expected sometime before the Court adjourns in June 2004.

Barnhart v Thomas

Note to the disability advocacy community: You know, it's true that the ADA and other civil rights laws are under vicious, unprincipled attack by right-wing extremists, and it's also true that as a result, the ADA has been severely weakened, perhaps beyond repair. This is very frustrating and upsetting. Nonetheless, being frustrated and upset doesn't remove the requirement that disability advocates should use intellectual honesty and reasoned argument to pursue their goals. After all, we aren't unprincipled, are we?

Pauline Thomas was an elevator operator whose job was eliminated. Being unemployed, she filed for Social Security disability benefits because she has heart disease and some orthopedic problems with her back. The Social Security Administration rejected her claim because she didn't meet the minimum requirement for benefits--being unable to do her current job due to the disability. That decision was correct. She lost the job because the job no longer exists; if the job had continued to exist, she would have continued to be able to do it. And Justice Scalia, no matter what a jerk he has been, and will continue to be, in other disability and civil rights cases, was perfectly correct in ruling against her.

The Social Security Administration uses a different and more stringent definition of disability than the ADA does. And not even the ADA would say it's illegal discrimination to eliminate a job that just happens to be held by somebody with a disability because, for the past 50-plus years in this country self-service elevators have been a commonplace and the job is obsolete.

The uproar over this case that was generated by some advocates who should know better accomplished nothing more than making people with disabilities look like whiners demanding "special" jobs. We have real problems to deal with--IDEA, the Medicare drug law, Tennessee v Lane, what almost happened to Terri Schindler-Schiavo. Please, let's use common sense and pick our battles--before we lose all of them.

The Senate's version of the Individuals with Disabilities Education Act (IDEA) reauthorization bill (S. 1248) has been reported out of committee and awaits scheduling for a final debate and vote. During the fall of 2003, the Senate was mostly focused on Iraq/Afghanistan funding and the Medicare prescription program (see Medicare Prescription Plan...). However, there was a lot of behind-the-scenes advocacy on IDEA, and some small but significant changes were made to the bill by the HELP committee.

This article describes the most recent events. We've covered IDEA extensively over the past several issues; please see them for more detailed information. Once again, we've read the actual bill and formed our own conclusions based on our extensive experience with special education issues.

There were two important changes to the Senate bill:

1. Short-Term Objectives

As we've reported, both the House and Senate versions would substantially alter this provision of the current law.

The House proposed a two-track system: students whose disabilities don't preclude a typical academic course of study would have annual goals and be evaluated using the same systems and timetables as nondisabled kids, while students whose intellectual disabilities make standard academics impractical would have short-term objectives and more frequent progress evaluations.

S. 1248 does not envision a two-track system. The original version called for annual goals for all students with disabilities and said an IEP (Individual Education Program) must contain: "...a statement of how the child's progress toward the annual goals ... will be measured, including through the use of quarterly or other periodic reports, concurrent with the issuance of report cards, that delineate the progress the child is making toward meeting the annual goals..."

The latest version makes a subtle change in this language. It now says the IEP must contain "...a description of how the child's progress toward meeting the annual goals ... will be measured and when periodic reports on the progress the child is making toward meeting the annual goals (such as through the use of quarterly or other periodic reports, concurrent with the issuance of report cards) will be provided."

Some advocates are calling this a "technical" change that doesn't really improve the bill. We're not so sure. The original version at least appeared to create a mandatory requirement to issue progress reports only concurrent with standard report cards; the new version makes it clear that this is optional. In other words, the IEP Team can choose to have a more-frequent progress-reporting schedule for students with disabilities. They'll still be reporting on progress toward annual goals, but they may do so as frequently as they would have for short-term objectives. Let's face it; what really matters is how often progress is monitored and plans are adjusted to address emerging needs, not whether there are written short-term objectives.

The bill does contain a "strict construction" clause that says the law does not require any information to be included in the IEP beyond what's explicitly listed. This means the current law's mandate for short-term objectives and frequent progress reports would be gone. And, unless the advocates are on top of the situation, what Congress granteth in law, the US Education Department may taketh away by regulation. For these reasons, we think the House bill's language is still preferable. But at least now, if the Senate version prevails, a good IEP Team--or one forced to be good by a good advocate--should be able to provide whatever level of progress tracking is needed by individual students.

2. IEP Team

Another potentially important change concerns who can be required to attend an IEP Team meeting.

We've has always said that not only the new House and Senate versions of IDEA, but the current law, are too weak on IEP Team participation. We think that every teacher who works with a student with a disability should be on the Team--though we don't think that means they all need to attend every meeting. The Senate bill says only "at least one" regular education teacher, if the child has or will have any, and "at least one" special education teacher, must be on the Team. Note also that both the original and latest Senate versions provide that "at the discretion" of the parent or the school, other people can be on the IEP Team, and the "strict construction clause" doesn't apply here. To us, that means a parent can require more teachers to be on the team.

Anyway, membership on the Team is a different issue from attendance at Team meetings under IDEA. In the original Senate version, a Team member could be excused from attending if both the parent and the school agreed. The new version says that the Team member must also agree to the exclusion, and that the parent must consent in writing to the exclusion.

What does this mean? Most importantly, a school can't deliberately schedule meetings for dates and times when certain people can't attend and then try to pressure the parent into letting the meeting go on anyway once they get to the meeting room. Schools and parents will have to agree before each meeting on who must show up. Also, good teachers and other folks could come to meetings and fight for plans and services that the school administration would rather not have them speak up for.

Still Bad News

S. 1248 remains unacceptable on the discipline issue. Though advocates fought long and hard, they were unable to get the "stay put" clause, which currently lets kids with disabilities facing possible expulsion to "alternate programs" exhaust their appeals before being moved, put back into the bill. For this reason alone, people with disabilities and their families should oppose this bill. They should also remember that the House version--which wipes out virtually any special consideration for discipline issues involving disabilities that affect behavior--is far worse.

The Senate bill also still contains a section that could cause parents to have to attend a hostile IEP meeting after filing a formal complaint. While we note that parents can avoid this by opting for third-party non-binding mediation, or by agreeing with the school district to waive the meeting, we believe this provision will still be used to intimidate families, and it must be removed. The House bill, which doesn't specify that this must be a full IEP team meeting, is better on this issue.

Trouble Ahead

When the Senate bill comes to the floor, it's expected that several Senators will try to amend it. Most of these expected amendments would be bad.

For example, an attempt may be made to add language similar to the House bill's provision that state governors must set special attorney-fee caps for IDEA lawsuits. This is unprecedented; no other civil rights law incorporates such caps. Having a child with a disability frequently cuts deeply into a family's budget; such families are at least as unlikely as low-income members of minority groups to be able to afford legal fees. And there is no proposed cap on what school districts can pay their lawyers, which means that schools would be likely to have much better-quality legal support than parents in these cases.

Another possible amendment may tack on a school voucher system. STIC's position continues to be that any voucher system must include requirements that no school, public or private, may refuse to accept a student due to disability; that any school, public or private, must meet all IDEA requirements; and that vouchers must provide enough money to make all of the schools, public or private, within a community equally viable options for any student. So far as we can determine, no elected official has ever put forth a voucher proposal that meets all of these requirements. Nor are they likely to do so, because the main goals of the voucher-pushers are to cut education costs, and to eliminate regulations that protect both the civil rights of students and the academic integrity of what schools teach.

The Outlook

The Senate did not take this up before its holiday recess.

That means that advocates and families still have time to act. We are continuing to hear from Congress that parents aren't making a strong showing of concern about IDEA. If that's true, it's a big mistake.

We at STIC have been critical of many professional education advocates for their refusal to accept that there are big problems with IDEA, with special education, and especially with the way in which children are "classified" as having disabilities. Much more than minor tweaks to beef up enforcement of the current law is needed to create a truly effective and appropriate special education system.

But when big changes are made to a law, there is a danger that the baby will be thrown out with the bath water. Recently we've been talking mostly about the Senate bill, which is clearly better in most respects than the House version, but there is no guarantee that the best provisions of either bill will be in the final law. In fact, the worst parts of both could be adopted.

Though we disagree with other advocates on some points, we all agree that if the House bill, the Senate bill, or any combination of the two as they now stand, becomes law, bad things will happen to children with disabilities in the education system. That is, bad things will happen to your children. If you don't get busy and start talking to your federal legislators about this, you're going to get up one fine morning and go to an IEP meeting, only to learn that a lot of stuff you'd come to rely on is gone and your kid is in serious danger of being badly mistreated by your school. We aren't kidding. It's time to wake up and get to work on this. Now!

In late November Congress finally passed a law to provide Medicare coverage for prescription drugs. The law runs over 1100 pages long and very complex. No one person knows everything that's in it, and a lot of misinformation got spread around as the fight over its passage went on. It's been hard to get the facts, but we think we've got most of them here.

The short story is, people whose only health insurance is Medicare will have more prescription drug coverage than they had before. For people with other health insurance options besides Medicare, the picture is unclear. It may be that some people who are also eligible for Medicaid drug coverage could lose some or all of that coverage. But it's also possible to read the law as exempting such people from harm.

We'll explain all this, but before we do, there's a lot of stuff you'll need to know in order to understand the issues properly. We'll try not to bore you with this brief primer on government-financed medical insurance:

The first thing you should know is that any politician who says during the 2004 campaign that he/she helped get a wonderful new plan to provide Medicare prescription drug coverage will be lying. They may or may not have helped, but the plan is nothing to crow about. Compared to most typical employer-provided prescription plans, the Medicare plan is very weak.

The second thing you should know is something that most people with congenital disabilities do know but most other Americans don't: Medicaid is a far more comprehensive medical insurance system than Medicare, in all respects, not just prescription coverage. And the Medicaid that NY makes available to people with disabilities compares favorably with the best employer-based health plans. Even with the new prescription plan, Medicare likely won't cover a lot of things that NY Medicaid covers, and unlike NY Medicaid, it charges high premiums and co-pays for most of what it does cover. Especially important here is the fact that Medicaid pays for any prescription or non-prescription drug, and any equipment, that is medically necessary. Seniors would have been better off demanding that Medicaid coverage be expanded to them instead of asking for a Medicare drug benefit, but it's too late now.

The third thing you should know is that Medicare is not just a medical insurance program for elderly people--it's the only medical insurance available to millions of younger Americans who become permanently disabled after having held a job. Conversely, Medicaid is not just medical insurance for poor nondisabled people--it's the only medical insurance that provides lifetime coverage to millions of people with congenital disabilities for such things as personal attendants, wheelchairs and other assistive technology, and prescriptions, regardless of their ability to work.

There are big gaps in coverage between these groups, and if these programs were as simple as we've described, lots of people with disabilities would have no medical insurance at all. Fortunately, the old laws let these programs overlap to provide at least minimal coverage to most people who need it. For example, a person can be "dually eligible" for both programs. A young American who incurred a work disability or a senior citizen with a significant disability could ordinarily only get Medicare, unless they also had a very low income. But if their disability required supports that Medicare wouldn't pay for, such as ongoing personal assistance services outside the home, or most prescription drugs, they could "spend down" their assets to become eligible for Medicaid. ("Spend down" means they could hand over enough of their income to the Department of Social Services to put them below the Medicaid eligibility threshold.) Adults of working age with disabilities who had jobs and lived in a state like New York that had a Medicaid Buy-In might not have had to do the spend-down; instead they could pay a premium for Medicaid coverage. Some people who couldn't qualify for Medicaid could still get Medicaid to pay their premiums for Medicare's "Part B" program, which covers, to some extent, medical services not provided in a hospital. ("Part A" covers hospital costs and other stuff that most private insurance plans call "major medical", with no premium for that coverage as long as Medicare taxes were withheld from your pay when you were working.)

So what's in the new Medicare Law? Beginning in 2004, Medicare recipients can buy a "discount" card that may provide up to 15% off some prescription prices in some pharmacies. Very low-income people would get $600 of free prescriptions tacked onto the card.

Beginning in 2006, at minimum, there would be a standard, fully-government-funded, prescription plan available to all participants. We believe this plan would have a covered "formulary" with at least one drug from each "family" of drugs now approved for medical use in the US, though there could be more options--we haven't seen details. If private insurers find it profitable to do so, they could offer competing plans that participants could choose from. These plans might also have limited formularies. The law does not permit many advocates' preferred solution of having the federal government control drug costs by negotiating drug prices with manufacturers. Instead, conservatives say the "market" will control costs through competition--but the law offers billions of dollars in government subsidies to private insurers to encourage them to offer plans. So much for "market control". Some critics say this is a sneaky way to lure people out of the government-funded plan and then leave them hanging after subsidies end and the private coverage gets cut back. Other critics say there's no guarantee, given the past history of attempts to privatize Medicare coverage, that any providers will want to offer a plan even with the subsidies. By definition, Medicare is for people who have an increased risk of medical problems due to age, disability, or both--not an attractive group for any insurer. In any case, the law mandates that at least the basic standard plan will be there.

For people with incomes above 150% of the federal poverty level, and assets over $10,000 for an individual or $20,000 for a couple, there will be a $250 annual deductible and a $35/month premium for the drug plan. The plan would then pay 75% of annual drug costs up to $2,250, 0% of drug costs between $2,250 and $3,600 (the infamous "donut hole"), and 95% of drug costs over $3,600. If your income is under 135% of the federal poverty level and you have assets under $6,000 for an individual or $9,000 for a couple, the deductible, premium, and "donut hole" exclusion would not apply to you. Between 135% and 150% of poverty and assets under $10,000 for an individual or $20,000 for a couple, these subsidies would be reduced on a sliding scale.

Participation in any Medicare prescription drug coverage plan would allegedly be optional for all Medicare-eligible people. They could choose to enroll or not enroll. How this will actually work is unclear. One provision of the law says that dually-eligible people would automatically be enrolled in a randomly-chosen plan if they haven't chosen one by a certain date. However, that provision also states that this does not prevent anybody from declining to participate in any plan. Another provision says that Medicare will replace Medicaid as the primary drug coverage for people who are dually-eligible, and Medicaid coverage would not be available for any part of the cost of drugs covered by Medicare, but we aren't sure this can be applied to people who choose not to enroll in any Medicare drug plan. The best-case scenario seems to be that the government will try to sneak as many "dual eligibles" into the plan as it can, hoping they won't notice until it's too late--but if they do notice they can opt out. If so, then all dually-eligible people would be wise to pay attention and opt out. However, it's also possible to read the law as forcing all dually-eligible people into the Medicare plan. We just don't know.

The law does say that if a dually-eligible person participates in the Medicare drug plan but needs a drug that isn't covered by that plan, then Medicaid can pay for that drug. What drugs Medicaid does pay for is up to the individual states; while New York is very good about this, other states may not be.

As you can see from the means-tested coverage brackets, if dually-eligible people are forced into this plan, some of them could pay more money for less prescription coverage than they have today. This would not be good, especially for dually-eligible people who qualify for the Medicaid Buy-In, whose incomes would preclude any subsidies--though in most cases they would still be better off working than not working. It's also been alleged that people with higher incomes who can still get Medicaid to pay their Medicare Part B premiums would lose that support. It looks to us as though all references to "premium subsidies" in the new law apply only to the $35/month premium for the Medicare drug plan. We don't see any language that affects Medicaid subsidies for Part B premiums. Out-of-pocket share of Part B premiums would go up for people with incomes above $80,000. That's not good because means-testing Medicare will threaten the unity of its broad-based political support over time--but it doesn't affect Medicaid-eligible people. It's also important to remember that all of this only applies to people who are dually-eligible for Medicare and Medicaid. If you receive Medicaid but aren't Medicare eligible, nothing will change for you.

Earlier in the legislative process, a plan to impose a co-payment on Medicare-funded home health services was discussed; that did not make it into the final law. There is a cut in reimbursement to Medicare home health providers that could make such services harder to get, but no co-payment for recipients.

Also under discussion was a plan to have the federal Centers for Medicare and Medicaid Services pick a few major medical suppliers to decide which products, such as diabetes supplies, oxygen therapy, wheelchairs, and sleep surfaces, Medicare would pay for. Not only would this limit the variety of options available to people (and some types of equipment must be highly individualized to be effective), it would reduce or even eliminate market competition in some medical equipment industries, thereby driving up costs. We aren't sure if this was included in the law as passed.

Some critics say the new law will cause employers who offer prescription plans to their retirees to drop those plans. We haven't seen or heard an explanation of this claim; the law in fact provides financial incentives to employers to continue such plans--and anyway, few employers provide plans to retirees for free; typically retirees have to pay through the nose for such coverage and the Medicare plan may be a better deal for some of them. If such a plan is the result of collective bargaining, we doubt any Medicare law could change it.

The new law also contains "health savings accounts" and a pilot project to test competition between government- and privately-designed benefits packages in a few cities. These are very controversial measures. However, the "savings accounts" are essentially just a tax shelter for people with high medical insurance premiums, not directly related to Medicare at all. And in our experience, pilot studies typically have very little impact on public policy. Far more important to the future of Medicare will be the political climate when the results of those studies come in--a constant factor whenever any "reform" measure is on the table--and that's ten years from now. The only "research data" that most elected officials consider when making policy decisions is opinion poll and campaign contribution numbers. The pilot doesn't even start until 2010 and could be cancelled at any point before then.

There are some bright spots in this law, though for sure they are paltry and few. As we said, people whose only medical insurance is Medicare will have more prescription coverage than they do now--though we emphasize that it will be nowhere near as good as what employer-based plans typically offer. Also, Medicare will now pay for an initial physical exam for new beneficiaries, for screening for diabetes and heart disease, and for "coordinated treatment" for chronic illnesses. Medicaid payments to hospitals would be increased, as would Medicare fees for physicians.

Essentially what Congress did was create a very expensive plan--$400 billion over ten years--that yet somehow does not provide very much in the way of benefits. And they appear to have paid for this plan by cutting prescription coverage for the poorest of the poor--if not by outright mandate, then with a confusing, underhanded bait-and-switch.

Democratic Senate Minority Leader Tom Daschle says he'll introduce legislation to repeal some parts of the new law. Whether he'll be able to get any traction on that is unclear. Regardless, there is one last thing you should know about this: This was not a partisan Republican hatchet job. It was supported by many "moderate" Democrats in both houses of Congress, and the main reason the result is so inadequate is because those same Democrats could not muster the courage to oppose President Bush's two waves of irresponsibly massive tax cuts, so there is now no money in the federal coffers to pay for a good plan. If nothing else, this story should teach us that politics as usual--from either party--can't save us from ourselves.

Just a few months after a coalition of mental health advocates sued New York State for its failure to clean up notoriously negligent adult "homes", several of the same organizations filed another suit over unavailability of mental health services for people with mental illness and chemical addictions (MICA).

Mental health researchers and advocates have long known that many people with serious mental illnesses who are either not diagnosed or cannot get proper treatment will seek to "self-medicate" with alcohol or street drugs. While illegal drugs and alcohol may initially make such people feel better, over time their continued use makes the underlying mental illness worse. This is the most common source of the MICA syndrome.

People with MICA need mental health treatment programs that can simultaneously address chemical addictions. Standard substance-abuse treatment programs can't meet this need.

It's been a longstanding quirk of New York State's substance abuse treatment and criminal justice systems that standard substance abuse treatment programs are well-funded but MICA programs are not. People with MICA as well as people with ordinary substance abuse disabilities tend to get involved with with the criminal justice system for the same reasons. But while people with typical substance abuse disabilities can usually get into a treatment program within days or weeks of conviction, people with MICA may spend months or years in jail or prison awaiting a treatment "slot". All of the people involved, including the incarcerated people with disabilities themselves, the judges who convicted them of petty crimes, and the prison and jail operators who are housing them, agree that these people don't belong in jail and should be receiving mental health treatment. Due to short-sighted state funding policies, there simply is not enough treatment to be had.

The suit, William G. and Walter W. v Pataki, et al., was filed by the Bazelon Center for Mental Health Law, the Urban Justice Center, the Legal Aid Society of New York and Swidler Berlin Shereff Friedman, LLP. As in the adult "home" lawsuit, the plaintiffs filed under Title II of the ADA, which prohibits discrimination due to disability by state governments in the provision of programs and services, and Section 504 of the federal Rehabilitation Act, which outlaws such discrimination by any entity that receives federal money. The suit argues that New York arbitrarily provides services of vastly different quality to people with ordinary substance abuse disabilities than it does to people with MICA. It also claims direct harm to people with disabilities because sending people with mental illnesses to jail can make their disabilities worse. The advocates point out that the state could use the same money it spends to jail these people to provide appropriate mental health treatment instead, so cost is not a legitimate reason for the lack of services.

In a stunning display of ignorance and/or political cronyism, the New York State Assembly's Republican minority caucus has appointed Anthony Salerno to the state's Traumatic Brain Injury (TBI) Advisory Council.

Salerno is notorious for his operation of the mismanaged, negligent, and abusive Northeast Center for Special Care (NCSC) in the Hudson Valley, as well as other nursing homes around the state that are frequently cited by health authorities for major deficiencies.

Most recently, in October, his Julie Blair Nursing and Rehabilitation Center in Albany was placed in "immediate jeopardy", the most severe deficiency citation a facility can receive short of being closed. At that time, State Health Department spokesman Rob Kenny told the Albany Times-Union that immediate jeopardy citations are rare; of 685 nursing homes in New York State, only 12 have been cited thus in 2003. He neglected to mention that at least 4 of them are owned by Salerno's company.

Salerno was apparently deemed appropriate for the TBI Council, which advises the Health Department on TBI services and policy, because of his claim that the NCSC is a specialized high-tech rehabilitation center for people with brain injuries (it is in fact simply a "skilled nursing facility"--a standard nursing home that accepts anybody with Medicaid, Medicare, or private-pay insurance coverage), and perhaps because of his association with former employees of the defunct NewMedico Corporation, which committed widespread egregious Medicaid and Medicare fraud in the name of head injury "rehabilitation" in several facilities across the nation in the 1980s and '90s. It is also possible that Salerno's contributions to Governor Pataki's political campaigns influenced the Republican minority's choice.

For all of these reasons, Salerno was deemed by outraged disability advocates to be a completely unacceptable choice for the TBI Council. "Appointing Salerno to the Council is like rubbing salt into an open wound," said Maria Dibble, Executive Director of the Southern Tier Independence Center, which operates one of the state's TBI Regional Resource Centers. "When are these people going to stop this political pandering and get serious about disability policy in this state?"

Salerno is even viewed with distaste by his colleagues in the nursing home lobby. The Nursing Home Community Coalition of New York State's spokesperson, Cynthia Rudder, was quoted in the Watertown Daily Times as saying, "Possibly, this is someone who should not be in the business," after the NCSC was placed in immediate jeopardy last July for the third time since its opening.

by Over 20 National Disability Organizations

The story of Terri Schindler-Schiavo was in the news this fall. You probably saw her on TV, a middle-aged woman lying in bed, smiling and turning her head to listen to the people around her. Terri sustained a brain injury in 1990 under mysterious circumstances, and there have been published claims that her husband was abusive. The video shown on TV was taken by her parents and smuggled out to the news media in violation of a court order. Sometimes the laudable principle of family privacy is used by people to get away with actions they know can't stand the light of day. This was one of those times.

This article is from a statement issued by over 20 national disability organizations, including the Center on Human Policy at Syracuse University and the National Council on Independent Living, of which STIC is a member. It describes Terri's story and its meaning as well as we could ourselves, so we're printing it virtually unedited.

The "right to life" movement has embraced her as a cause to prove "sanctity of life." The "right to die" movement believes she is too disabled to live and therefore better off dead. Yet the life-and-death issues surrounding Terri Schindler-Schiavo are first and foremost disability rights issues--issues that affect millions of Americans with disabilities, old and young.

Can she think? Hear? Communicate? These questions apply to thousands of people with disabilities who, like Ms. Schindler-Schiavo, cannot currently articulate their views and so must rely on others as substitute decision-makers. The law requires that a guardian's decision be based on written documentation or other clear and convincing evidence of her wishes. Her husband and guardian, Michael Schiavo, says she would not have wanted to live in her current condition, but there is no written documentation or compelling evidence of this. There is just his word.

Early on in Michael Schiavo's quest to remove his wife's source of nourishment, an independent guardian was appointed upon request by Schiavo's own attorney, George Felos. That guardian, attorney Richard Pearse, issued a report to the judge stating that Michael Schiavo was not a credible witness to his wife's end-of-life wishes because he waited several years before coming forward with the claim that she wanted to die. Pearse also noted that Michael Schiavo would benefit financially from her death. Pearse was quickly removed at the request of Felos. Experts on the issue of guardianship point out that it is always desirable that a person in Terri Schindler-Schiavo's position have an independent representative who has no particular interest in the case other than her. Since the dismissal of Pearse in 1999, Terri Schindler-Schiavo has never been appointed another independent guardian. The law Florida Governor Jeb Bush has just signed calls for one now.

The peculiar series of events that have led up to the current debate seems to have avoided both the judge's scrutiny and media coverage. Michael Schiavo says his wife would not have wanted to live in her current condition. And under Florida law a spouse has the right to decide, though his powers are limited by the US Constitution.

Michael Schiavo conveniently remembered Terri's alleged wishes only after the malpractice judgment was awarded. A review of court records shows that of the $700,000 from a malpractice settlement Michael won that was to go for her care, over half has been spent on his legal fight to disconnect her feeding tube. Over $200,000 of it has been paid to his attorney George Felos. Michael Schiavo has refused to let his wife receive therapy from a speech pathologist, a common type of rehabilitation available to people with brain injury. A prominent expert filed an affidavit that Terri Schindler-Schiavo can swallow her own saliva, and could potentially be weaned from the feeding tube and recover some speech, so that she could indicate her own wishes.

A recent New York Times Sunday Magazine report stated that after months or years with little sign of consciousness, people may still be capable of complex mental activity. The reporter, Carl Zimmer, wrote, "To the medical world, ...hundreds of thousands of ...Americans who suffer from impaired consciousness present a mystery." Whether Terri is--or isn't--capable of "high level thought" is not the real issue here. It is clear that she is conscious and responsive beyond mere reflexes, as has been demonstrated by her ability to track with her eyes, respond to verbal commands by physicians who examined her on video, and react to those she loves.

She has a severe brain injury, yet has not undergone the rehabilitation that is typically given to people with this type of disability. People with severe cognitive disabilities are devalued as lives not worth living. In truth, the lives of all of us with severe disabilities are often considered expendable.

Americans who have disabilities--cognitive disabilities like Ms. Schindler-Schiavo--have rights. Congress decided that in 1990 when it passed the Americans with Disabilities Act (ADA). Yet most of society does not consider that Terri Schindler-Schiavo has any rights other than the right to die. We believe she has a right to therapy and support; we believe the ADA requires that.

Consider David Jayne, a 42 year old man with ALS. Every five seconds, a ventilator on a cart next to his bed pumps air into his lungs. He is not able to move. "Yes, I am very passionate about the Terri Schindler-Schiavo issue, because I live it," says Jayne, who was profiled in Time magazine in 2001. Twelve years ago, Jayne would have dismissed this existence as a living hell. Today he says, "If someone had told me I would be paralyzed and tethered to a ventilator, yet still find meaning in life, I would not have believed them. It is incredibly wrong for society to decide who lives or dies based on their opinions of what level of quality of life is worth living."

In this matter of living as a disabled person, those of us who live with disability are the experts--not husbands, not parents, not doctors. We know that life with a disability is worth living, and we know that what makes life awful for us is the attitude of "better off dead" that drives much of the thinking surrounding people like Terri Schindler-Schiavo.

The fear of disability and the resulting bigotry adhered to by most nondisabled Americans is often cited by people with disabilities as one of the most difficult barriers to overcome. In a recent column, Bill Press stated, "I wouldn't want to live like that, would you?" We respond: "Like what?" Terri Schindler-Schiavo is characterized as "...a brain-damaged woman who has been kept alive artificially." Meant to signal horror, the concept has no real meaning to us who live by "artificial" means. Is a person on dialysis being kept alive artificially? Is a person taking insulin being kept alive artificially? Is a person who undergoes open-heart surgery, or cancer treatment, or intensive care in a hospital being kept alive artificially?

It is a well-known fact among those of us who live with disabilities that a feeding tube is a low-tech support, and people who use them can and do live full and meaningful lives. It was invented in the 19th. century and relies on nothing more than gravity to make it work.

Terri Schindler-Schiavo is said to be in a "persistent vegetative state." But is she? In court, the medical experts were divided. FL Circuit Judge George Greer says she has not demonstrated sufficient actions to prove "cognitive function" because her actions were not "consistent" or "reproducible." But Florida law defines "PVS" as a condition in which there is no evidence of responsiveness. By ignoring Florida law, Judge Greer has violated her due process rights, as many of us asserted in our friend-of-the court briefs.

Historically, people with disabilities such as autism, Down syndrome and cerebral palsy have been thought to be incapable of communication. Increasingly, yesterday's assumptions about inability are being thrown out when confronted with the reality of people exceeding the low expectations put on them by others.

In 1990, the Supreme Court held, in the Cruzan case, that experts' subjective determinations of things like "persistent vegetative state" invite the very "quality of life" judgments that the Court found were inappropriate.

Terri Schindler-Schiavo's fate is entwined with all disabled people who rely on surrogates. If the legal standard in cases involving termination of life support is reduced to the point where Ms. Schindler-Schiavo's "quality of life"--as determined by others--justifies her death by starvation, then what protections exist for the thousands of us who cannot speak due to disabilities?

Discrimination against people with disabilities is part of our nation's history. Eugenicists called for the involuntary euthanasia of 60,000 "hopeless cases" of persons with disabilities in institutions in the last century, and urged the killing of "defective" children. Thousands in our nation were sterilized against their will because they were "defective". Infants born with disabilities have been denied lifesaving medical treatment. And people who become severely disabled, like Terri Schindler-Schiavo, are said to be better off dead.

The need for constitutional limits on the powers of surrogate decision makers is nowhere more clear than on a question as fundamental as life or death, because the consequences of abuse or misjudgment are both ultimate and irreversible. Treating people differently based on health or disability status violates the rights of people with disabilities under the ADA. Absent proof that it is truly the person's decision, withholding medical care based on the belief that s/he would rationally want to die because of a disability is discriminatory.

Due to bias against disability and ignorance about the support systems and successful coping strategies that preserve autonomy, meaning and pleasure in life, some physicians have decided that some deaths are more rational than others and that incompetent ill and disabled people do not deserve the same health care that "competent" people would receive. When health care providers deny people with severe cognitive disabilities the health care they need to live, we believe they are violating the ADA.

The belief that people with disabilities like Schindler-Schiavo's are "better off dead" is longstanding but wrong. It imperils us all.

Man Keeps $480 More Each Month, And His Medicaid!
by Carole Kramer

James Dean, you said it all so clean
And I know my life would look all right
With a Buy-In to fuel my dream

(Major, serious apologies to the Eagles)

James Dean (a pseudonym) works at Denny's and needs Medicaid to pay for the support programs and medical insurance he needs to live and work due to his developmental disability. Neither Denny's nor any other private employer offers that kind of medical insurance.

In order to keep Medicaid, James had been paying a "spend-down" each month, giving about $480 back to the Department of Social Services (DSS) to lower his income so he could remain qualified for Medicaid. Mr. Dean was getting $1,075 in Social Security Disability Insurance (SSDI) benefits and earning $300 each month at Denny's, but did not want to work more because virtually all of his additional earnings would just go into the spend-down.

James' sister Dizzie helps him manage his affairs. In June 2003 she heard about a new program called the "Medicaid Buy-In for Working People with Disabilities" (MBI), which allows someone like James to pay a low, income-based premium for Medicaid instead of a big spend-down.

When the program started in July, Mr. Dean and Dizzie tried to apply and called the local DSS office. The person they spoke with did not know about the program and said they did not have the correct forms yet. Dizzie faxed the office information about the program and called again. Nobody replied to her messages.

Ms. Dean called the state Medicaid hotline and was told she should provide the DSS office with the information about the program and how to apply. She told them this wasn't her job and a supervisor promised to call her back, but didn't, even after Dizzie left messages for her.

James and Dizzie were frustrated by this process but knew that this was important for Mr. Dean to be able keep more of his money and so he could work more hours if he wanted. So they called the Self-Advocacy Association of NY and were referred to STIC's Benefits Advisor, yours truly, Carole Kramer.

I contacted the DSS office for Mr. Dean, and on August 21 the DSS supervisor called and apologized for what happened. She mailed the application for MBI and cancelled James' spend-down right away, so he wouldn't have to pay the $480 for September. She also said he could be paid back for the previous two months' spend-downs, because the MBI program is retroactive for up to three months.

James got the application, filled it out after calling DSS with some questions, and mailed it to the office at the end of August. Nobody contacted him and he waited to hear back.

On September 11, 2003 Mr. Dean received a Notice of Decision from DSS in Otsego County that said he would continue coverage under MBI effective 7/1/2003 with no spend-down and no premium at this time. Two weeks later he received his refund of the previous two months' spend-down, almost $1,000!

In his first three months in the Buy-In, James has saved over $1,400 and can now have resources (savings) of up to $10,000, while keeping his Medicaid coverage. He has moved into a bigger apartment and is saving money to buy new furniture and other things he needs. Now he can work more hours without paying back most of his earnings. He will pay a premium each month starting next year, but this will be much less than his spend-down.

It took James and Dizzie Dean some time and work to apply for the new Medicaid Buy-In, because the DSS staff were not yet aware of the details of the program. But for James this is a great benefit and opportunity. The Medicaid Buy-In program gives him even more incentive to work and do well, to earn more and to improve his life. Congratulations James!

And, according to the Binghamton Press & Sun-Bulletin, as of 11/17/03, 700 people in New York State have applied for the Buy-In and 350 of those have been approved. So what are you waiting for? Contact Carole Kramer at (607) 724-2111 (voice/TTY) or at benefits@stic-cil.org today!

You might have to think about that title for a minute....

STIC's Annual Campaign--which, this year and for the next few years, is dedicated to our new building renovation project--is in full swing. So far we've brought in just over $5,000. Good work, folks! There's just $1,000 more to go to meet our direct-mail goal of $6,000 for this year.

We know many of you like to give around the holidays at the end of the year. If you're one of those people, your time has come. It will make it easier for us to track progress toward our goal if you send your donation in with the return envelope and form we mailed to you this spring. But if you don't have either of those, you can just write "Annual Campaign" on the memo line of your check. All donations are tax deductible, and if it is postmarked by December 31, you'll get an appropriate receipt in time for you to do your 2003 taxes. You'll also have our unending gratitude.

And if you say it's okay, you'll also get your name in this newsletter, just like the folks below who made their gifts this fall:

THANK YOU!
Dee Arnold Gretchen L. Kessel