If your state cuts Medicaid waiver benefits because of "budget shortfalls," here's news to use. The U.S. Court of Appeals, 10th Circuit, has slapped Oklahoma's Health Care Authority (OHCA) for such a cut, and taken a swipe at the judge who approved it.

Last September OHCA announced to beneficiaries of Medicaid waivers that they would henceforth be entitled to only five prescriptions per month. On the day the cutback went into effect, three brave women who live at the mercy of the state's health care services filed suit against the state. Their attorney? The redoubtable Steve Gold.

How did three impoverished women happen to find him? Carla Lawson and Jeff Hughes, two directors of Oklahoma centers for independent living, did the honors.


Gold, who brought the original Helen L. suit (foremother of the 1999 Olmstead decision) based his case on Olmstead and on a clear HHS/Social Security regulation: that a state cannot change the terms of a waiver without advance approval from the feds.

James H. Payne, U.S. District Court Judge for the Northern District of Oklahoma, heard the arguments and ruled in favor of the state, saying the ADA had no bearing because the state's expenditure for all required drugs would constitute a "fundamental alteration" of the program. Say what? But wait, there's worse. He ruled that Olmstead's integration mandate could not apply to people who were not institutionalized. In order to exercise their rights under Olmstead, they'd have to sign themselves into an institution. Perhaps coincidentally, Judge Payne's ruling came down on Halloween.

Gold and co-counsel Morris Bernstein of the University of Tulsa filed an appeal with the U.S. Court of Appeals for the Tenth District —a court Gold characterizes as "a very conservative panel."


On July 15 the Court of Appeals reversed Payne's decision. (Note: Judges never live that down.) It cited Olmstead's "most integrated setting" mandate, saying that Payne's interpretation of the ADA's fundamental alteration provision "cannot stand up to logical inquiry.... If every alteration in a program or service that required the outlay of funds were tantamount to a fundamental alteration, the ADA's integration mandate would be hollow indeed."

The court added that since "the cost of institutional care is nearly double that of community-based care, it seems unlikely that... elimination of the waiver program would have solved Oklahoma's fiscal crisis, because it could have served only to drive participants into nursing homes."

Even after this momentous decision, everyone who relies on the waiver do without the prescriptions they need while the state delays doing what the court says must be done. — L. Gwin


The litmus test for personhood, the attorney for Michael Schiavo argued at an appeals court hearing two years ago, “is whether or not a person can bring a spoon to their mouth.” Allowing someone who cannot do that to live is “poor public policy,” he said.

Although his client’s wife, Terri Schindler-Schiavo, smiles when her parents visit and makes vocalizations that sound like “Hi” and “Hello,” she cannot bring a spoon to her mouth. Three Florida courts, most recently the Florida Supreme Court, have judged her to be in PVS (persistent vegetative state) and sentenced her to death by starvation and dehydration per her husband’s wish. He claims she would have wanted it. Starvation will begin on August 25, at the end of a 30-day stay of execution.

Terri Schindler-Schiavo’s own attorney argues that the courts have disregarded the state’s law on what constitutes PVS, and has asked them to note her strenuous attempts to communicate.

In 1990, Terri was deprived of oxygen for some minutes in what may have an attempt by her husband to strangle her. A physician who examined her records says she “may have been a strangulation victim.” A radiologist concludes that x-rays show “she was worked over pretty good.” Schiavo, who won a $1.3 million malpractice settlement on her behalf, has not spent it toward rehabilitation. As her sole heir, he will inherit the money—less the legal expenses to get her killed.


While right to die groups consider her execution to be “an important foothold in the law,” her parents see it differently. Her death will make his battering “the perfect crime,” according to her parents, Bob and Mary Schindler, who have fought since 1998 to keep her alive.

Probate judge George Greer, who handed down her original death sentence, asked for assurances from doctors who had examined her that she could be “restored by treatment.” Although the physicians he questioned wanted her to live, all had to agree that she would “never be the same.”

Efforts by the Schindler-Schiavo Foundation are underway to get Gov. Jeb Bush to issue a stay of Terri’s execution while an investigation goes forward. To sign their petition, go online to


Hospital patients are losing their right to decide whether they want medical treatment. No, it won’t be forced on them, according to Wesley J. Smith, author of Culture of Death: The Assault on Medical Ethics in America. “To put it bluntly, he wrote recently in The National Review, “even if you want medical treatment to enable you to fight for your life, you may be told that the hospital reserves the right to refuse service.” 24 of 26 California hospitals surveyed have such policies in place.

It’s called “futile care policy,” and at hospitals in Cedar Falls, Iowa, where the story leaked to the press, “it allows medical staff to withdraw treatment over a family’s objection.”

Although the Iowa hospitals allow such families a hearing before their ethic committees, Smith believes it’s likely that deck is stacked against them thanks to what are known as DRGs —where reimbursement by third party payors is limited by Diagnostic-Related Group to which an injury or illness belongs. “Hospitals now generally lose money on patients requiring intensive or extended care,” Smith says.

Surprise: it’s about money, and it’s spreading nationwide.



Two U.S. senators who get heavy campaign contributions from nursing homes ordered a General Accounting Office audit of Medicaid waiver programs. The July report found that states did not do enough “monitoring” of people who get services at home.
Thomas A Scully, administrator of the federal waivers for the Centers for Medicare and Medicaid Services, responded that federal inspectors should not be marching through private homes to evaluate care. We second that.

Since 1992, the number of Medicaid beneficiaries on waivers has tripled. 800,000 people, more than half over the age of 65, now take part in waiver programs.

The GAO found “medical and physical neglect” in some cases, and blamed it on the lack of basic safety and hygiene standards in homes. Its report waved a particular red flag over state programs where people direct their own care, hiring and training their attendants. Perhaps the GAO sees that as “unprofessional”—exactly the point of such programs.


In related news, Bob Williams, once Donna Shalala’s top disability adviser, testified in June before the House Committee on Energy and Commerce about Cash and Counseling demonstration programs. The demonstrations, he said, “set out to provide an obvious answer to a common sense question. Do people with disabilities want to have a great deal of control over the quite intimate forms of help and supports possible?”

As the overwhelmingly successful demonstration programs showed, the answer is yes. Williams warned, however, that without federal safeguards, states would cut care to cut costs. He also warned that managing one’s own care works best when you have a whole network of support.

Triocchia and friends. Photo by queens independent living center.IF THE BUS WON'T STOP FOR YOU, STOP THE BUS

Anthony Trocchia calls himself “a reasonable person,” but even reasonable people can lose patience when, count ’em, four public buses pass by because, drivers say, their lifts are broken. Trocchia, president of Disabled in Action of New York City, rolled out in front of that fourth lame bus and refused to move.

Soon he was joined by several workers from the nearby Queens Independent Living Center. When Green Lines, operators of the bus, volunteered to send a “special” bus with a working lift, Trocchia said no thanks and maintained the blockade. Soon journalists arrived.

Green Lines, transit operators on contract, may see that contract taken over by the MTA. “This would never have happened in Manhattan,” Trocchia said. But wherever in the U.S. it happens, “we should do this every day until they remedy the situation.”



States have what is called “sovereign immunity” from lawsuits by their citizens. So if you want to sue your state—except in the case of civil rights laws—you need the state’s permission first. Now the U.S. Supreme Court will hear the case of Tennessee v. Lane and Jones, an ADA case based on the sovereign immunity of states.

Facts of the case: George Lane uses a wheelchair and was summoned to court in 1996 on a traffic charge. The courthouse was and is inaccessible. Lane crawled up the steps. On his next visit to the same court, he let the judge know he was downstairs. The judge had him arrested for failure to appear.

Beverly Jones, a court reporter, uses a wheelchair too. She couldn’t get into four different county courthouses where she’d been hired to record proceedings. She investigated and, finding 23 Tennessee courts inaccessible, requested modifications in all. Not one court complied.

Both parties are suing the state, asking monetary damages under Title II of the ADA. The U.S. District Court and the U.S. Court of Appeals for the 6th Circuit have both ruled that the case could go forward. Tennessee appealed those decisions to the Supreme Court. On June 23, the Court agreed to hear the case, in October. Justice Antonin Scalia warned, in his separate opinion in the 1999 Olmstead case, that the states in that case had not asked the Court to rule on sovereign immunity. He left the door open on that, inviting states to come in.

Since every time the ADA goes before today’s ultra-conservative Supreme Court, we’re likely to lose, Tennessee advocates better step up to the plate. Their job, to persuade their state attorney general, Paul Summers, to withdraw the case, is one that Adapt accomplished with more than a dozen states in Olmstead and a coalition of California advocates accomplished with the Hason case.

Are our rights civil rights? This is the Court that will decide.