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

Friday, October 24, 2003
Year IV, Edition 165

This front page features 9 news and information items, each preceded by a number (#) symbol.
Click on the"Below the Fold" link at the bottom of this page for 42 more news items.

"She's tired, but she just looks wonderful. I think she's out of harm's way."

--Robert Schindler, after visiting his daughter, Terri Schiavo, two days after her feeding tube was replaced under orders of Florida Governor Jeb Bush and the state Legislature (First story)

"This is a civil right. People with disabilities have protections under the law finally and it's time we exert them."
--Brian Sherman, a member of Framingham, Massachusetts, Disability Commission, which has started citizen patrols to catch people who illegally park in designated accessible parking spaces (Fifth story)



Terri Schiavo's Condition Improving; Long-time Doctor Resigns

By Dave Reynolds, Inclusion Daily Express
October 24, 2003

TAMPA, FLORIDA--Parents of Terri Schiavo, 39, said their daughter appeared to be recovering two days after her feeding tube was reinserted under orders of Governor Jeb Bush and the Florida Legislature.

"She's tired, but she just looks wonderful," said her father, Robert Schindler, after visiting Terri for more than an hour Thursday. "I think she's out of harm's way."

Family members were relieved that Terri's internal organs apparently were not significantly damaged during the six days she was without food or water.

New sources also reported on Thursday that Dr. Victor Gambone, the physician in charge of Terri's medical care for the past five years, has resigned.

Gambone, a specialist in geriatric and internal medicine, was one of a number of doctors who testified that Terri was in a "persistent vegetative state" from which she could not recover. Gambone also testified that disconnecting her feeding tube would allow Terri to die peacefully and without pain.

Terri's gastronomy tube was removed on Wednesday, October 15, under the orders of Pinellas County Circuit Court Judge George W. Greer. The judge had repeatedly sided with Michael Schiavo, Terri's husband and guardian, since he filed a petition to have the feeding tube removed so his wife would die of starvation and dehydration. Schiavo claimed that his wife told him she would not want to live "by artificial means", some time before she collapsed in February 1990 and was without oxygen for several minutes.

After protests from tens of thousands of disability rights advocates and right-to-life supporters, Governor Bush pushed a law through the state legislature earlier this week allowing him to go against the courts and order Terri's feeding tube reinstalled. The law also called for an independent guardian to be appointed for Terri.

Mr. Schiavo's attorney, George Felos, said Thursday that he would continue the legal fight to have Terri's feeding tube removed again. Felos plans to argue that the new law violates Terri's right to refuse medical care. Some legal scholars have said the law is unconstitutional because the legislature and the governor cannot pass laws that would overturn court rulings, nor can they write laws that apply to specific individuals.

Felos also said that the trust fund set up to provide for Terri's care has been depleted to the point where Medicaid money is needed to cover the day-to-day costs in the hospice. Schiavo received the $1 million from a malpractice insurance settlement in 1992. After $300,000 in legal fees, the remaining $700,000 was set up in the trust fund. Felos says just $55,000-$65,000 remains in the trust.

Terri's parents, along with a number of doctors, believe that she is alert and responsive and might benefit from therapies, including speech and feeding therapies. They also believe that Mr. Schiavo has abused Terri, that he may have contributed to her initial collapse, and that he wants her to die so he can marry another woman with whom he has lived for several years. Her parents had claimed that their son-in-law wanted what's left of the insurance settlement, which he would inherit if Terri dies.

Disability rights advocates have been watching Terri's situation closely for several years. Many note that people with certain disabilities are condemned to die because others believe they are "better off dead".

"It is very wrong to assume that there is only religious motivation in saving Terri," activist Rus Cooper-Dowda wrote in an open letter to journalists who have missed the disability message in telling Terri's story.

"There are more disabled people in the United States than there are people in Canada," Cooper-Dowda wrote. "As goes Terri, so goes us. The odds are very good so goes you."

"Schiavo's doctor of five years quits case" (Palm Beach Post)
"A Disabled Journalist Talks To Journalists About Terri Schiavo" by Rus Cooper-Dowda (Inclusion Daily Express)
"Terri's life is still tenuous" (World Net Daily)
"Terri's Right To Live" (Inclusion Daily Express)
Terri Schindler-Schiavo Foundation



Advocacy Groups To Gather Signatures For Disability Rights Bill

By Dave Reynolds, Inclusion Daily Express
October 24, 2003

DUBLIN, IRELAND--A coalition of eight disability and human rights groups began a campaign Wednesday to make sure the country's new Disability Bill focuses on the rights of people with disabilities.

The groups plan to gather 100,000 signatures during a nationwide petition drive on November 7, 8, and 9, according to the Irish Times.

The government is scheduled to publish the Disability Bill next month.

Seamus Greene, coordinator of the National Parents and Siblings Alliance (NPSA), said the groups were concerned that the government only planned to guarantee the right to an assessment of needs rather than a right to services to meet those needs.

Mr. Greene said that "the anger in the disability sector will be enormous" if the legislation does not include a focus on rights.

The Disability Federation of Ireland (DFI) noted Tuesday that the lack of rights-based legislation is causing people to be inappropriately institutionalized.

"People with mental illness continue to live in acute beds in mental hospitals for no reason other than the lack of suitable accommodation," said Federation officials.

The petition drive is being led by NPSA, DFI, along with Amnesty International, the Centre for Independent Living, the Disability Legal Resource Project, Down Syndrome Ireland, the Forum for People with Disabilities and the Irish Autism Alliance.



Mother Sues Institution And Hospital Over Matthew Goodman's Death

By Dave Reynolds, Inclusion Daily Express
October 24, 2003

PHILADELPHIA, PENNSYLVANIA--Janice Roach filed suit Thursday against the New Jersey institution that housed her 14-year-old son, Matthew Goodman, along with the hospital where he died in February 2002.

Matthew, who had autism, was a resident at The Lindens, an institution for 60 youths with developmental disabilities run by Bancroft Neurohealth Inc. of Haddonfield, New Jersey. He died at Children's Hospital in Philadelphia on February 6 of aspiration pneumonia, acute respiratory distress and a blood infection, two days after the hospital had discharged him.

Roach claimed that the excessive use of restraints and heavy medication at Lindens weakened her son's immune system. She pointed to evidence that Matthew was placed in restraints for hours at a time -- sometimes overnight -- along with a medical report that showed the teen lost 23 pounds in the final six days of his life.

"He was put into what I'd call a prison-type setting . . . bound, overmedicated, allowed to lay on the floor in a semi-comatose state, never allowed outside, never allowed to socialize or to dress or feed himself, to the point where he didn't have much humanity left in him," Roach's lawyer, Slade McLaughlin, told the Star-Ledger Thursday.

The suit said that Matthew showed signs of pneumonia during a visit to the hospital on February 4, but that hospital staff discharged him anyway. On the morning of February 5, Bancroft staffers called Roach to tell her they could not detect Matthew's vital signs, the lawsuit said. Instead of calling an ambulance, staffers drove him back to the hospital.

The New Jersey Division of Developmental Disabilities concluded earlier this year that Bancroft Neurohealth improperly restrained Matthew and on several occasions left him unattended. The state's Division of Youth and Family Services, however, concluded that Matthew was not medically neglected, nor did his treatment at Lindens cause his death.

Roach, other parents, and advocates have been advocating for "Matthew's Law" a measure that would ban the use of restraints except in emergency situations for people with disabilities in private and public facilities. Such a law was proposed in January of this year, but lawmakers substituted the language for more lenient guidelines. Roach refused to give lawmakers permission to name the watered-down version after her son.

"Matthew's Law & Bancroft School" (Inclusion Daily Express)
Family Alliance to Stop Abuse and Neglect



More Than One-Half Of Federal Web Sites Are Not Accessible, Study Finds

By Dave Reynolds, Inclusion Daily Express
October 24, 2003

WASHINGTON, DC--According to a report released this week entitled "Achieving E-Government for All", most federal government Web sites are not accessible to about 165 million Americans.

Researchers from Brown University's Taubman Center for Public Policy examined more than 1,600 government Web sites using Priority Level One guidelines, recommended by the World Wide Web Consortium (W3C), along with legal requirements of Section 508 of the Rehabilitation Act.

Just 47 percent of the sites met the basic W3C standards, while only 22 percent met the stricter Section 508 guidelines, which federal agencies and contractors have been required to follow since June 2001.

"This is our right to participate as citizens," said John Kemp, chairman of the American Association of People with Disabilities (AAPD).

"We welcome and respect inclusion, and we are a far, far cry from that point," he told Federal Computer Week.

The study also revealed that 63 percent of federal Web sites are designed for a 12th-grade average reading level, while the average American citizen reads at or below the 8th-grade level.

"Achieving E-Government for All: Highlights from a National Survey" (Benton Foundation)
"Ramping The Web" by Dave Reynolds (Computor Companion)



Citizens Patrol To Stop Illegal Parking

October 24, 2003

FRAMINGHAM, MASSACHUSETTS--The Framingham Disability Commission has a message for drivers who park illegally in spaces designated for people with disabilities: "It'll cost you."

Last week, the city began a new parking enforcement program where volunteers take photos of such law breakers, then report them to the Framingham Police Department.

Soon, the fine for violating the law will double from $100 to $200.

"It's flagrant," said Brian Sherman, a member of the recently-formed commission. "It's abominable."

"This is a civil right. People with disabilities have protections under the law finally and it's time we exert them."

Myra Berloff, acting director of the Massachusetts Office of Disability, told the MetroWest Daily News that there are about 35 communities using citizen patrols to catch parking violators.

Related article:
"No space for illegal parking" (MetroWest Daily News)



"Lanai High School Senior Gets On The Artistic Track"

October 24, 2003

LANAI, HAWAII--The following five paragraphs are excerpts from a story in Thursday's Honolulu Star-Bulletin:

Lanai High School senior Jocelyn Taal will be among artists with developmental disabilities displaying their works during a conference, "Making It on Our Own," tomorrow and Saturday at the Hilton Hawaiian Village.

Taal's senior year took a different direction after she told teachers and special-education advocates that pottery "is the only thing I care about and want to do in my life."

She was struggling in school, and rather than let her become a dropout, school psychologist Sharie Liden recommended the individualized-education plan team look at how Taal could shift successfully from school to a career as an artist.

A new plan was written in September, and she received 50 pounds of clay from the Lanai Art Center program. She made 50 pumpkins by the first week of this month and had 50 more ready to glaze and fire.

Taal will join about a dozen artists with developmental disabilities at the third annual Self-Determination Conference.

"Lanai High School senior gets on the artistic track" (Honolulu Star-Bulletin)



Commonly Asked Questions About Service Animals In Places Of Business (U.S. Department of Justice)


# EXPRESS EXTRA!!! From the Inclusion Daily Express Archives -- Two years ago:


Protesters Forced To Go Over Mayor's Head

By Dave Reynolds, Inclusion Daily Express
October 24, 2001

SAN FRANCISCO, CALIFORNIA--After a meeting with the mayor of San Francisco went sour Wednesday, disability rights protesters set their sights on federal officials.

Mayor Willie Brown met briefly with a group of 15 protesters, as he had agreed to do on Monday. But Brown refused to talk about community alternatives to rebuilding Laguna Honda Hospital, the largest nursing home in the nation with 1200 beds.

"The meeting with the mayor was a complete joke," said Stephanie Thomas, an ADAPT organizer from Austin, Texas. "The mayor would not even start a task force to study the issues."

Approximately 600 activists from ADAPT and other groups from around the country are here to call on government officials to reconsider the plan, and to redirect resources where they belong and will cost much less -- in the community.

Two years ago, San Francisco voters overwhelmingly passed a $299 million bond issue to pay for rebuilding the 132-year-old facility. Those plans are moving forward in spite of the world-wide movement away from institutions, and the 1999 U.S. Supreme Court Olmstead decision which ruled that "unnecessarily" institutionalizing people with disabilities violated the Americans with Disabilities Act.

ADAPT activists are not known for backing down easily or stopping when they run into a barrier. After the fruitless meeting with the mayor, the crowd of protesters, many in wheelchairs, moved directly to the federal building at the United Nations Plaza. There they took up positions blocking the entrances until they received guarantees of a meeting with local federal officials.

A meeting was arranged with Josh Valdez, the U.S. Health and Human Services (HHS) Secretary's Regional Representative for Region IX, and Steven Derring, the Region IX Deputy Director for the Centers for Medicare and Medicaid Services (CMMS). Valdez and Derring agreed to meet again in two weeks to continue the dialogue and address complaints filed with the HHS Office of Civil Rights over California's lack of movement to enforce the Olmstead ruling.

KRON-TV ran this report on Monday, which is available in Real Audio:

In July of 2000, a lawsuit was filed on behalf of 10 people who live at Laguna Honda, claiming that the City and County of San Francisco violated their constitutional rights under the Americans with Disabilities Act by pouring resources into rebuilding the facility rather than providing community-based alternatives.

In August of this year, a U.S. District Court judge upheld the rights of those people to move forward with the suit, after the city and county had asked to have it dismissed. More details on that decision are available in the press release from DREDF (Disability Rights Education & Defense Fund, Inc.), which filed the suit:
"Judge Says Laguna Honda Residents Can Sue City Of San Francisco"


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