INCLUSION DAILY EXPRESS
International Disability Rights News Service

http://www.InclusionDaily.com
Your quick, once-a-day look at disability rights, self-determination
and the movement toward full community inclusion around the world.

Tuesday, January 6, 2004
Year V, Edition 852

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 40 more news items.

QUOTES OF THE DAY:
"Doctors and medical staff are very skilled, but I don't think they have any full understanding of the quality of life you can have if you're disabled in some way."
--Leslie Burke, who is challenging British medical guidelines that allow doctors to withhold food and water for patients with certain medical conditions (First story)

"Many of us parents who have raised our sons and/or daughters with developmental disabilities in the community and in our homes view this issue as one of the last issues of civil rights in our country."
--Margaret-Lee Thompson, coordinator of the King County Parent Coalition for Disabilities, and Joanne Whitehead, executive director of The Arc of King County, in an opinion piece urging the closure of Fircrest School, an institution housing 253 people with developmental disabilities in the state of Washington (Second story)

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# ADVOCACY / LAWS

Man Challenges Medical Council On Feeding Tube Rule
By Dave Reynolds, Inclusion Daily Express
January 6, 2004

LONDON, ENGLAND--Leslie Burke is fighting for his life.

According to a recent story in the Guardian Unlimited, Burke is challenging guidelines drawn up by the General Medical Council which determine when doctors can remove feeding tubes from patients.

Under the guidelines published last year, doctors need to seek court permission before disconnecting feeding tubes from patients considered to be in a "permanent vegetative state". The rules, however, allow doctors to end such artificial feeding without court approval for patients with other medical conditions.

Burke has cerebellar ataxia, a brain condition that is expected to get worse over time. Burke, 43, says he wants the GMC to make changes before he is no longer able to speak for himself. He said he is afraid that doctors will decide his "quality of life" is so poor it would not be worth keeping him alive.

"I feel very strongly that if I ever end up in hospital in the position where my life is in the balance, doctors should not be able to make the final decision on whether my life is worth living or not," Burke said. "Doctors and medical staff are very skilled, but I don't think they have any full understanding of the quality of life you can have if you're disabled in some way."

The high court is scheduled to hear Burke's case in late February. Burke plans to argue that the guidelines violate both British and European law because it gives doctors the power to withdraw needed medical treatment without knowing what the patient would have wanted and without court oversight.

Related article:
"Patient challenges doctors for right to live" (Guardian Unlimited)
http://www.guardian.co.uk/uk_news/story/0,3604,1112450,00.html

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# INSTITUTIONS

Debate Over Fircrest Closure Likely To Heat Up
By Dave Reynolds, Inclusion Daily Express
January 6, 2004

SHORELINE, WASHINGTON--A consultant has determined that the State of Washington Division of Social and Health Services could raise nearly $60 million by selling more than 2,000 acres of property currently on state-run institution grounds.

More than $43 million of that could come from selling just 87 acres at Fircrest School, an institution that currently houses 253 people with developmental disabilities. The property is surrounded by a dense commercial area and is considered attractive to developers.

Last February, State Senator Darlene Fairley -- whose legislative district includes Fircrest -- sponsored a bill that would have closed the institution after moving its residents to one of the other four state-run facilities, or to nursing homes or homes in the community. The measure was opposed by the state employees' union and a pro-institution group of parents whose family members are housed at the facility. Fircrest employs more than 700 state workers.

By June, Fairley's bill had been compromised to the point that she refused to vote for it. The version the legislature finally passed keeps Fircrest open for now, but closes four cottages by the end of 2004 and orders the state to prepare for an eventual closure.

The consultant's report is likely to rekindle the debate over Fircrest's fate, the Tacoma News Tribune reported Monday.

The last residential habilitation center (RHC) to close in Washington was Medical Lake's Interlake School, which was emptied in 1993.

Fircrest School is on the site of a former Navy hospital that includes World War II-era barracks.

In related news, Margaret-Lee Thompson, coordinator of the King County Parent Coalition for Disabilities, and Joanne Whitehead, executive director of The Arc of King County, wrote an excellent opinion piece urging the closure of Fircrest. Their commentary is in response to a December 17 column which suggested people would be at more risk in the community.

Related:
"State considers selling land at campuses for disabled" (News Tribune)
http://www.tribnet.com/news/story/4583079p-4554067c.html
"Fircrest closure will give residents a chance to flourish" (Seattle Post-Intelligencer)
http://seattlepi.nwsource.com/opinion/155386_fircrestredux.html
"Fircrest closure would put vulnerable lives at risk" (From December 17 Seattle Post-Intelligencer)
http://seattlepi.nwsource.com/opinion/152739_fircrest17.html
"Washington State's Institutions: Fircrest School" (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/institutions/wa/fircrest.htm

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# VOTING / ACCESSIBILITY

States And Feds Have Slowed On Election Reforms
By Dave Reynolds, Inclusion Daily Express
January 6, 2004

ORLANDO, FLORIDA--It's less than 10 months to the next General Election.

And, it would appear, many of the reforms that were ordered in the aftermath of the 2000 election mess might not be fixed until long after this November 2.

States have been upgrading to newer, more accessible voting technologies as mandated by law. But many have been slowed because the federal government has not yet provided what was promised to help the states switch over. In fact, only $650 million of the $3.86 billion Congress pledged in the 2002 Help America Vote Act has arrived to help states.

In addition, federal standards for touch screens -- which would help people who cannot read because of blindness or other reasons -- will not even be set in time for this election.

"I think if the election is close, we can expect a mess," veteran election lobbyist Jim Dickson, vice president of the American Association of People with Disabilities, told the Orland Sentinel. "God forbid there's a state we have (in 2004) that is as close as Florida."

Related:
"Promised election reforms will not be ready" (Orlando Sentinel via Seattle Times)
http://www.InclusionDaily.com/news/04/red/0106a.htm
Help America Vote Act of 2002 (Federal Elections Commission)
http://fecweb1.fec.gov/hava/hava.htm

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# INSTITUTIONS / HISTORY

Lives Of Institution Residents Revealed Through Hidden Suitcases
By Dave Reynolds, Inclusion Daily Express
January 6, 2004

ALBANY, NEW YORK--An exhibit scheduled to open January 17 at the New York State Museum, reveals the intimate lives of former psychiatric institution residents through the personal items they brought into one facility decades ago.

Entitled "Lost Cases, Recovered Lives: Suitcases from a State Hospital Attic", the exhibit features artifacts found in more than 400 suitcases, boxes and trunks that residents brought with them when they were admitted into the Willard Asylum for the Insane, later renamed the Willard Psychiatric Center.

When the institution was closed in 1995, a facility staff member told the museum's curator, Craig Williams, that he had stumbled upon cases of personal items in the attic of an abandoned workshop. The contents of those cases, which belonged to deceased patients admitted between 1898 and 1965, are now in the museum's history collection.

During the last eight years, Darby Penney, a former state Office of Mental Health official, and Dr. Peter Stastny, a psychiatrist at the Bronx Psychiatric Center, used case histories and patient records to match the artifacts with those to whom they belonged. The exhibit attempts to reconstruct the lives of a dozen of those patients -- before and after their decades of institutionalization.

"All of these people spent decades in a state mental hospital; as a direct result of forced treatment, their lives were essentially taken from them," Penney recently wrote of the exhibit.

Related:
"From suitcases, pained stories of life in asylum" (Times Union)
http://www.timesunion.com/AspStories/storyprint.asp?StoryID=203189
"Lost Cases, Recovered Lives: Suitcases from a State Hospital Attic" (New York State Museum Exhibits)
http://www.nysm.nysed.gov/exhibits/upcoming.html#3

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# FAMILIES / LAWS

Immigration Officials Plan To Separate Mom From Son
By Dave Reynolds, Inclusion Daily Express
January 6, 2004

TURLOCK, CALIFORNIA--Felipa Gutierrez wants to see her son, Gabi, get the services and education he needs.

She also wants to stay with the 5-year-old boy, who has autism, to take care of him and raise him.

But the U.S. Bureau of Immigration and Customs Enforcement has said that Felipa must be deported to her native Mexico this week, the Sacramento Bee reported Tuesday.

Felipa, who entered the country illegally in 1989, claims that an attorney filed the wrong kind of paperwork for her to be granted legal status in 1996. Two years later she married Gabriel Gutierrez and asked the lawyer to file a visa petition because of their marriage. The lawyer delayed for more than three years, until a judge ordered deportation proceedings to begin.

Gabriel is a legal permanent U.S. resident. Their two children are U.S. citizens because they were born in California. But Gabriel is now training for a trucker's license and would not be able to stay home with his children.

Felipa's new attorney is hoping immigration authorities will grant her a stay so she can get a marriage visa. If authorities do not grant the reprieve, it could be a long time before Felipa sees her son.

"This is his country," Felipa said of Gabi. "He has a right to be here and be treated (for his autism). He should also have a right to be with his mother."

Related article:
"Turlock mother fights to remain, help autistic son" (Modesto Bee)
http://www.modbee.com/local/story/7971046p-8843570c.html

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# ACCESSIBILITY / TRAVEL

"Tight Security Often Means Rough Ride For Deaf In Airports"
January 6, 2004

SAN ANTONIO, TEXAS--The following six paragraphs are excerpts from a story in Sunday's San Antonio Express-News:

As David Long waited at San Antonio International Airport to catch a flight to Chicago, a loudspeaker blared the announcement that his boarding gate had changed.

Other passengers slowly picked up their bags and made their way to the new gate. But Long continued to sit, unaware of what was happening.

Long, flying to Chicago to attend his brother's wedding, couldn't hear the loudspeaker. He's been deaf since birth.

After a while, airline agents noticed Long hadn't checked in at the new gate. So they paged him over the loudspeaker.

Welcome to the world of the deaf," said Kay Chiodo, president of Vital Signs Inc.

Navigating an airport in the post-9-11 environment can be frustrating for anyone. But it's even tougher for deaf and hard-of-hearing travelers, who often rely on a hodgepodge of written notes and arrival-departure screens to keep up with what's going on.

Entire article:
"Tight security often means rough ride for deaf in airports" (San Antonio Express-News)
http://news.mysanantonio.com/story.cfm?xla=saen&xlb=188&xlc=1108519

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# TODAY'S FEATURED WEBSITE

National Association of the Physically Handicapped

http://www.naph.net/

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

ACCESSIBILITY / LAWS

City Finishes Curb Ramps Just In Time
By Dave Reynolds, Inclusion Daily Express
January 6, 2003

COLUMBUS, OHIO--With 13 hours left to meet an end-of-the-year deadline, city contractors finished the last of 10,800 curb ramps at 11 a.m. last Tuesday.

The project was part of a 1997 settlement of a lawsuit filed against the city by the Ohio Statewide Independent Living Council.

That settlement required wheelchair ramps to be built at intersections on certain resurfaced streets by the end of the year 2000.

The Independent Living Council granted the city a two-year extension when it was discovered that many of the first ramps were built incorrectly. Several city employees resigned over the ordeal, including the city engineer.

According to the Associated Press, disability advocates are pleased with the progress but are worried that some ramps are still placed far from corners because of lampposts and other obstacles.

Another lawsuit concerning older wheelchair curb ramps was filed in May of 2002. Wanda Neuhard sued the city saying the ramps violate the Americans with Disabilities Act and are too steep to be safe.

The city is negotiating with Neuhard to come up with a solution.

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# BELOW THE FOLD
Click here for the rest of today's disability-related news:
http://www.InclusionDaily.com/news/04/btf/01060445.htm

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