International Disability Rights News Service
Your quick, once-a-day look at disability rights, self-determination
and the movement toward full community inclusion around the world.

Thursday, April 15, 2004
Year V, Edition 914

Today's front page features 8 news and information items, each preceded by a number (#) symbol.
Click on the"Below the Fold" link at the bottom of this page for 39 more news items.

"Study after study indicates that medical professionals have a much lower opinion of quality of life of people with disabilities than the general population, including people with disabilities themselves."

--Stephen Drake, research analyst with the disability rights group Not Dead Yet (Fifth story)



Catholic Hospitals Will Respect Patients' Written Wishes

By Dave Reynolds, Inclusion Daily Express
April 15, 2004

ST. LOUIS, MISSOURI--Catholic-run hospitals across the United States want patients to know that they will honor living wills, at least while they figure out how a recent statement by Pope John Paul II will affect hospitals' "end of life" policies.

In an address given March 20, the pope said that providing food and water is ordinary and appropriate care for a patient considered to be in a "persistent vegetative state". He said health care providers were "morally obligated" to provide such treatment and that it should not be looked at as artificial medical intervention.

The pope called the act of removing feeding tubes "a true euthanasia by omission."

American bishops, theologians and ethicists are studying the issue to determine how the pope's position will affect policies at the 565 hospitals in the Catholic Health Association which represent about 10 percent of hospitals in the U.S.

"It reminds us of our responsibility never to abandon the sick or dying," the Reverend Michael Place, CHA's president and chief executive, said in a statement.

Up to this point, Catholic hospitals in the U.S. have followed the "Ethical and Religious Directives for Catholic Health Care Services" which considers feeding tubes to be medical care that can be withdrawn when the "burden" of such treatment on the patient and family is considered to outweigh the benefits.

CHA officials said they will continue, for the time being, to respect the "advance directives" and "do not resuscitate" orders, that thousands of people have had formally drawn up, which call for no "heroic" or "artificial" measures to keep them alive in specific circumstances.

The pope's pronouncement has drawn international attention to the case of Terri Schiavo, whose family is Catholic.

Terri's husband and guardian, Michael Schiavo, believes she has been in a persistent vegetative state, that she cannot interact with her surroundings, cannot feel pain, and will not recover from a 1990 brain injury. He petitioned the court in 1998 to have her feeding tube removed, claiming that she told him before her injury that she would not have wanted to live "by artificial means".

Terri's parents, Bob and Mary Schindler, believe she responds to her environment and is alert. They suspect that Mr. Schiavo wants his wife to die so he can marry another woman with whom he has fathered two children. The have also accused him of abusing his wife.

The courts ordered her feeding tube removed so she would die of starvation and dehydration on October 16, 2003. Governor Jeb Bush, responding to tens of thousands of messages from disability rights advocates and right-to-life supporters, championed "Terri's Law" through the Legislature, giving him permission to have the feeding tube reinserted six days later.

Mr. Schiavo immediately sued the governor, claiming that the law violates Terri's privacy, along with the Florida Constitution's separation of powers provisions.

That case is still pending.

"Catholic Hospitals to Uphold Living Wills" (Associated Press via Yahoo! News)
"Terri Schiavo's Right To Live" (Inclusion Daily Express Archives)



Man Sues SVTC Over Sister's Morphine Death

By Dave Reynolds, Inclusion Daily Express
April 15, 2004

CHESAPEAKE, VIRGINIA--Jerry L. Costello has filed a wrongful death lawsuit against a Virginia institution and a staff physician alleging "gross carelessness and negligence" in the overdose death of his sister.

Patricia Ann Costello died on April 16, 2002 while a resident at Southeastern Virginia Training Center.

In the lawsuit, filed earlier this month in Chesapeake Circuit Court, her brother claims that she died after being given too much morphine. MacPherson-Smith was a staff member at SVTC and one of several doctors that treated Patricia.

"As a direct and proximate result of the overdose of morphine, and due to the neglect of SVTC and Dr. MacPherson-Smith in maintaining proper supervision of Patricia Costello's condition, Patricia Costello died," the suit alleges, adding that her death was the result of their "gross carelessness and negligence".

Costello's suit asks for $3.5 million in compensatory damages, in part to cover her medical and funeral expenses.

SVTC is a 200-bed facility housing people with mental retardation, and is operated by the State Department of Mental Health, Mental Retardation and Substance Abuse services.

Neither the state nor MacPherson-Smith gave any comment when contacted by the Associated Press.



Judge May Decide Fate Of Injured Infant

By Dave Reynolds, Inclusion Daily Express
April 15, 2004

AKRON, OHIO--A judge may decide Friday whether a 5-month-old boy, diagnosed with shaken baby syndrome, will live or die.

Matthew Stein and Arica Heimlich, both 21, are fighting to keep their infant son, Aiden, alive.

Physicians at Akron Children's Hospital claim that the infant is "brain dead" and recommend his ventilator and feeding tubes be removed so he will die.

The physicians argue that the parents cannot act in the baby's best interest because the father may have injured the child. If Aiden dies, Matthew Stein could be charged with his son's murder.

Attorney Edward Markovich, who represents the parents, argued at a hearing Wednesday that the couple has not been charged with any crime and has not been declared unfit.

"Now they are accused by a medical institution as if they were guilty of an injury to their child," Markovich said.

Dr. John Pope, a pediatric trauma specialist at the hospital, said Aiden would remain blind, deaf and unaware of his surroundings if allowed to live. Pope said the boy should be removed from life support.

Aiden has been hospitalized since March 15.

Mr. Stein testified that he accidentally bumped his son's head on the rail of a bassinet. He also said that a maternal aunt may have held Aiden too high over her head, causing the boy to be struck by a ceiling fan.

Pope testified that Aiden's injuries were caused by a rapid back-and-forth movement which led to massive bleeding in the brain. He said the injuries could only have been caused by shaking, a traumatic car accident, or a fall from 10 feet.

The child is in the temporary emergency custody of the Richland County Children Services Board.

Hospital, parents vie for baby's fate (Akron Beacon Journal)



Benko Investigation Moved To Michigan

By Dave Reynolds, Inclusion Daily Express
April 15, 2004

CASSOPOLIS, MICHIGAN--The investigation of Paul "Danny" Benko, the malnourished teenager being treated in a St. Louis, Missouri hospital, was turned over to Cass County prosecutors this week.

Michigan State Police sent the case to Cass County because the town of Cassopolis was the last known Michigan address for Danny's family. Authorities said that the family had been moving around the country, to several towns in different states, in recent months.

Cass County Prosecutor Victor Fitz said Tuesday that his office needed more time to review the case before deciding whether to file charges against Danny's mother, Lora Benko. Neither Fitz nor the state police would disclose details about the findings thus far.

Fitz said the state police is coordinating its investigation with other agencies in Southwest Michigan and around the country.

Danny, 16, was flown to Cardinal Glennon Children's Hospital in St. Louis on April 6 after his mother brought him to a Mount Vernon, Illinois emergency room. The teen, who has cerebral palsy, mental retardation and epilepsy, weighed just 40 pounds. He was dehydrated, had bedsores, and appeared to be in shock.

Illinois officials said Danny tested positive for both marijuana and methamphetamine, neither of which he could have taken without assistance.

The St. Louis Post-Dispatch reported that Lora Benko had been traveling through Illinois with her two teenage sons and her brother. She told social workers she was returning to their home in Niles, Michigan after seeking treatment for Danny in Texas. Records at Michigan hospitals showed Danny had been hospitalized in November, December, January and March, the Post-Dispatch added.

Various news reports noted Thursday that Danny's condition was improving, and that he is slowly being reintroduced to food after several days on intravenous fluids.

WNDU-TV in South Bend, Indiana reported that the hospital is no longer able to comment on Danny's condition at the request of his family.



"Blink and you live"

April 15, 2004

LONDON, ENGLAND--The following three paragraphs are excerpts from an article found in Thursday's Guardian Unlimited:

When a 39-year-old Belgian woman suffered a stroke and fell into a coma, doctors concluded that she was unlikely to regain consciousness and, after a time, diagnosed her condition as persistent vegetative state (PVS). One of the criteria on which they based their decision was her inability to blink or track a moving object with her eyes. It was only when they discovered that the stroke had damaged a cranial nerve, preventing her from opening her eyes, that they realised their error. If they opened her eyes for her, she followed their instructions. Having regained full consciousness soon after her stroke, she revealed she had overheard all the bedside discussions as to whether it was worth keeping her alive. At no point had she wanted to die.

Others might not be so lucky. Research suggests that many patients left to die after being diagnosed as in PVS might have eventually recovered. They may have been in a twilight condition called minimally conscious state (MCS), which has until now proved difficult to identify. In recent years, MCS has muddied the waters further on what it means to be alive, and confused the debate over when is the right time to pull the plug. Now, thanks to a new test, doctors may finally be able to save those who still have a chance.

Unfortunately for both doctors and patients, MCS is no easier to diagnose than PVS. But a paper published recently in the Archives of Neurology could change all that.

Entire article:
"Blink and you live" (The Guardian),13026,1191591,00.html



ILUSA: Independent Living USA


# EXPRESS EXTRA!!! From the Inclusion Daily Express Archives (One year ago):


People Who Direct Personal Care Services Are More Satisfied, Researchers Find

By Dave Reynolds, Inclusion Daily Express
April 15, 2003

WASHINGTON, DC--People who are able to direct their own in-home supports are much more satisfied -- and receive better care -- than those whose supports are directed by others, a new report reveals.

The report, published Tuesday on the Internet by the journal Health Affairs, surveyed 1,739 people who received Medicaid services through a program called "Cash and Counseling" in Arkansas. Participants received an average of $320 per month to hire in-home care staff to help with bathing, eating or housekeeping; to buy assistive devices or supplies; or modify their homes.

Those who receive in-home services were randomly assigned to an experimental group that could chose their services and providers, while the others received the traditional supports.

Researchers found that those who could control their services were "much less likely" than the traditional group to report that paid caregivers performed poorly, and more likely to say that they performed "exceptionally well."

They were nearly 20 percentage points more likely than the others to say they were "very satisfied" with the way they were spending their lives and were less likely to report unmet needs.

Those in the experimental group were no more likely to have health problems or accidents related to their care than those in the traditional group.

"This approach gives people with disabilities more freedom and responsibility, in the same way that all of us want to be in charge of our lives and our choices," said U.S. Health and Human Services Secretary Tommy G. Thompson in an HHS press release. "The study confirms that these Medicaid recipients make good choices that maintain their health and safety, even as they improve their convenience, satisfaction and quality of life."

Future research will look at other aspects of the Arkansas program and how "Cash and Counseling" is being implemented in New Jersey and Florida.

Related resources:
"Medicaid Recipients With Disabilities Benefit From Directing Their Own Personal Care Services, Study Finds (HHS Press Release)


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