Inclusion Daily Express -- November 19, 2003

INCLUSION DAILY EXPRESS

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.

Wednesday, November 19, 2003
Year IV, Edition 178

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 35 more news items.

QUOTES OF THE DAY:
"The government has a fantastic opportunity to become the administration that finally gives every person with a learning disability an independent home within the community. We're urging it to take action now so that this doesn't become a missed opportunity."
--Lord Victor Adebowale, Chief Executive of Turning Point, which is calling for the British government to not delay in closing institutions for people with developmental disabilities (First story)

"People with disabilities don't want to be singled out. They want to be integrated into the workforce and society; they don't want to be looked at as a disabled person."
--Kelly Willett, a student at Brigham Young University, whose brother has disabilities (Third story)

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# INSTITUTIONS

Group Wants December 2004 Target For Closing Britain's Institutions
By Dave Reynolds, Inclusion Daily Express
November 19, 2003

LONDON, ENGLAND--A new report reveals that 16 of Britain's institutions housing 752 people with intellectual disabilities will remain open past the government's current April 2004 target closure date.

The report, "Time to move on", released by the social care charity Turning Point, shows that one-half of the people who were supposed by be moved out of the facilities and into community homes by the deadline are still behind institution walls.

Some residents have been waiting for more than 35 years to move out, the charity said.

"This must be one of the longest waiting lists in the NHS," Lord Victor Adebowale, Chief Executive of Turning Point, said in a press statement. "Yet these people are not ill and a hospital is not a home where they can live full lives."

"The government has a fantastic opportunity to become the administration that finally gives every person with a learning disability an independent home within the community. We're urging it to take action now so that this doesn’t become a missed opportunity."

Turning Point is calling on the government to set a new target date of December 2004 to have all of the institutions closed. The organization wants the government to back this up by revising the target in the priorities of Strategic Health Authorities, NHS Trusts, social services and housing departments.

"These are people who could be living in the community, who could be deciding how they want to live, who could be deciding the kinds of things you and I take for granted -- whether they want to have sugar in their tea, for instance, what color they want their walls to be," Adebowale told the BBC News. "These are things that could be possible."

Related:
"Long-stay hospitals 'must close'" includes RealAudio interview (BBC News)
http://news.bbc.co.uk/1/hi/health/3283641.stm
Turning Point
http://www.turning-point.co.uk

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# ADVOCACY / FAMILIES

Governor Bush Calls For Jury Trial In Schiavo Case
By Dave Reynolds, Inclusion Daily Express
November 19, 2003

TAMPA, FLORIDA--Attorneys representing Governor Jeb Bush filed legal briefs Wednesday arguing that a jury trial is needed to decide whether Terri Schiavo wanted to be kept alive by artificial means as her husband has testified.

Terri was 26 years old on February 25, 1990 when she collapsed and her brain was without oxygen for several minutes. Since then she has been able to breathe and regulate her own blood pressure. She receives food and water through a gastronomy tube inserted into her stomach. Michael Schiavo was granted permission by a local court to have Terri's feeding tube removed on October 15 of this year, based on his testimony that his wife told him she would not want to live by "artificial means".

Terri's parents, Bob and Mary Schindler have suspected that their daughter said no such thing. They also believe that Terri is alert, responsive and that she would improve with therapies that Mr. Schiavo has denied her for at least the last 10 years.

Governor Bush, responding to pressure from disability advocates and right-to-life groups, championed "Terri's Law" which gave him authority to have Terri's feeding tube reinserted on October 21. The law also called for an independent guardian to be appointed to review Terri's situation.

Mr. Schiavo, along with the American Civil Liberties Union, sued Bush on the grounds that the legislature and governor do not have the constitutional power to override court rulings. The law violates Terri's privacy and her right to have her wishes carried out.

Ken Connor, an attorney representing the governor, said that before a court can decide whether Terri's wishes weren't followed, a jury must first establish what her wishes were.

Also on Wednesday, Bush's attorneys filed a motion to have Pinellas Circuit Court Judge W. Douglas Baird removed from the case because he recently stated that the law violates Terri's rights.

On Tuesday, Judge Baird gave Bush's attorneys one day to explain why they believe "Terri's Law" should be allowed to stand.

The governor's attorneys had argued that they should not have to defend the constitutionality of the law until after the 2nd District Court of Appeal decides whether Mr. Schiavo's lawsuit was filed properly. The appellate court has not yet ruled on Bush's argument that the suit should have been filed in Tallahassee, and that the governor was not properly notified of the suit. But the court did say Tuesday that the suit can move forward while it considers Bush's challenge, prompting Baird to issue his order. The three-member panel also rejected the governor's request to dismiss the case entirely.

"It's very bad news for Terri and good news for the voices of death," said Schindler attorney Pat Anderson.

Terri's case has been watched closely by disability rights advocates for several years. Her husband and several doctors claim that she has been in a "persistent vegetative state" since her collapse. The courts have supported Mr. Schiavo's claims that Terri cannot recover from her injury, that she does not feel pain, and that she would not have wanted to live.

Terri's parents want Mr. Schiavo removed as their daughter's guardian. They suspect he wants her to die so that he can marry another woman with whom he has fathered two children, and so he can benefit from what's left of an insurance settlement that now pays for her treatment.

The Schindlers and advocates have defended Terri's right to live, noting that allowing her to die by starvation would reinforce the message that the lives of people with certain disabilities are not worth living.

"People hope that we can always trust the health care system and our guardians, acting in privacy, to do the right thing," Diane Coleman, founder of the disability rights group Not Dead Yet, said Friday. "Unfortunately, human nature being what it is, sometimes there are mistakes, and sometimes there are conflicts of interest."

Related:
"Opening Statement of Diane Coleman on Terri Schiavo Case" (Terri Schindler-Schiavo Foundation)
http://www.terrisfight.org/coleman.html
"Free Mumia! Kill Terri?" (The South End Online)
http://southend.wayne.edu/days/2003/November/11182003/oped/kill/kill.html
Background and past stories: "Terri Schiavo's Right To Live" (Inclusion Daily Express)
http://www.inclusiondaily.com/news/advocacy/schiavo01.htm

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# FAMILIES

BYU Study: Siblings Of Children With Disabilities Call Family Experience Positive
November 19, 2003

PROVO, UTAH--People who grow up with siblings that have disabilities have certain social advantages over other children, a BYU study reveals.

According to a story in Brigham Young University's campus news service, faculty from the School of Family Life focused on the things that siblings felt they gained by having a family member with a disability, along with the challenges.

Two students interviewed for the story said they felt the experience was "a blessing" for them.

"People are so blessed to have a person with a disability in their lives," said Kelly Willett, whose brother has disabilities. "A lot of people don't realize that, because they are ignorant to what a disability is and how it affects family life."

Related article:
"Study shows benefits of living with disabled family members" (BYU NewsNet)
http://newsnet.byu.edu/story.cfm/46933

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# INSTITUTIONS

Opinion: People's Lives Are Fuller In The Community
November 19, 2003

SAN JOSE, CALIFORNIA--The following three paragraphs are excerpts from a brief opinion piece in Wednesday's Mercury News:

A process is under way to develop a plan for the possible closure of Agnews Developmental Center by July 2005.

News articles have focused on the fears and concerns that a select group of parents of Agnews residents have over this eventuality. While no one questions the sincerity of those parents' concerns, the media typically give far less attention to other views. These include the views of many parents of developmental center residents and the residents themselves who vigorously advocate for community alternatives.

The fact that quality community care can be provided at substantially less cost than institutional care is a primary reason why continued reliance on this outdated service model is fiscally unsound. But the key reason for developing alternatives to institutionalization across the nation is not cost; it is the value placed on quality of life and inclusiveness.

Entire article:
"Agnews: the question of closing" (Mercury News)
http://www.bayarea.com/mld/mercurynews/news/opinion/7298363.htm

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# LAWS

Man Dies Eight Months After Medication Money Ran Out
By Dave Reynolds, Inclusion Daily Express
November 19, 2003

PORTLAND, OREGON--Douglas K. Schmidt, 37, died Tuesday morning in a Portland hospital, two days after he was removed from a ventilator at the request of a court-appointed guardian.

Schmidt had been in a coma since March 1, when he collapsed during a massive epileptic seizure after his state-paid anti-seizure medication ran out.

He was among thousands of Oregonians who had lost state-paid coverage for medications in February.

Schmidt's ventilator was turned off Sunday under a Multnomah County Circuit Court order following the recommendation by Nancy Doty. The judge had appointed Doty as guardian in September when Schmidt's sister, Stephanie Wight, and his partner, Werth Sargent, disagreed with the rest of the family's decision to take Schmidt off of life support.

Wight and Sargent went to court Monday seeking a restraining order to force doctors to place Schmidt back on the ventilator. Judge Katherine Tennyson rejected their request.

"I see no reason to change the decision that has been made," Judge Tennyson said.

Schmidt ran out of Lamictal, an anti-seizure medication about a week prior to his seizure. A state program had paid $13 a day for the medication until it was cut from the Oregon state budget.

"If God makes the decision, that's one thing," Sargent told the Oregonian. "This wasn't God."

Related article:
"Man dies after being taken off of life support" (The Oregonian)
http://www.InclusionDaily.com/news/03/red/1119a.htm

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# ABUSE

Prosecutor Won't Press School Abuse Charges
By Dave Reynolds, Inclusion Daily Express
November 19, 2003

HASLETT, MICHIGAN--Ingham County Prosecutor Stuart Dunnings III said Tuesday that his office won't press criminal charges against Haslett Middle School officials who have been accused of abusing three students with developmental disabilities.

Dunnings said there was no evidence to "substantiate any intent to harm any of the children".

"Sometimes autistic children act out and need restraint," Dunnings explained.

According to the Lansing State Journal, the families plan to continue with their civil lawsuit seeking $3 million in damages. The suit, filed in September, accused school teachers and administrators of allowing the children to be abused earlier this year.

Frank Fleischmann, an attorney representing the families, said that circumstantial evidence, including records of the days the children came home with bruises, can be used in the civil suit.

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# TODAY'S FEATURED SELF-DETERMINATION WEBSITE

Self-Management and Self-Determination Strategies

By enrolling in this course, you can expect to learn some new ways to teach students to be more independent.

This course will teach you how to promote students' self-management and self-determination skills in order that these students may increase their independence as they leave high school and enter their adult lives.

http://www.vcu.edu/rrtcweb/techlink/GEB/hughes/corstem2.html

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

AWARENESS

JFK Had Unreported Disabilities
By Dave Reynolds, Inclusion Daily Express
November 19, 2002

WASHINGTON, DC--ABC News ran a story Monday on recently released medical records revealing that President John F. Kennedy had a long list of medical conditions, some of which required him to take as many as 12 medications -- including pain killers -- at once.

The records indicate that Kennedy had Addison's disease, a condition which affects the body's ability to regulate blood sugar and sodium, along with colitis, an inflammation of the colon, and prostatitis, an inflammation of the prostate gland. The President also had osteoporosis of the lower back, causing pain so severe that he was unable to perform tasks such as reaching across his desk, or pulling the shoe and sock onto his left foot.

Presidential historian Robert Dallek said Kennedy hid his pain from the public, even during stressful events such as the Bay of Pigs fiasco.

"I studied very closely his performance during these crises, and what was striking is how effective he was," Dallek said. "He made a bet with himself and the country, in a sense, that he could be president, and he carried it off brilliantly. It was extraordinary."

Related story:
"Suffering in Camelot JFK Hid Health Problems, Took Drugs For Pain" (ABC News)
http://www.InclusionDaily.com/news/red/02/1119b.htm

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# BELOW THE FOLD
Click here for the rest of today's disability-related news:
http://www.InclusionDaily.com/news/03/btf/111903_45.htm

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