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Last updated: November 13, 2007
For all the latest news affecting the disability community!
http://www.ican.com
Posted November 13 2007
FOR IMMEDIATE RELEASE
Contact: Jim Ward 202-415-4753 or Marcie Roth 301-717-7447
50 State ADA Bus Tour Comes Home to Congress
Washington, DC - One year ago Jim and Debbie Fletter Ward sold their 5000
square foot house, took their 1 and 2 year old sons and joined
photojournalist Tom Olin on a 370 square foot bus for a 50 state tour about
the ADA Restoration Act and an educational exhibit about the Americans with
Disabilities Act.
On 11-15-07, the Road to Freedom Tour will return to the U.S. Congress to
be welcomed by Senators Harkin (D-IA), Specter (R-PA), and Rep. Hoyer
(D-MD) and Sensenbrenner (R-WI) as well as numerous leaders of the
disability community. There is an 11 AM – 1 PM Tour welcoming and
disability history exhibit at The US Capitol and National Mall at 3rd St,
NW. Senator Harkin will greet the bus riders and speak at 11AM.
Harkin, Specter, and Hoyer were key sponsors of the Americans with
Disabilities Act. Rep. Sensenbrenner joined the other 3 in cosponsoring
the ADA Restoration Act to correct the weakening effects of Supreme Court
decisions that restricted discrimination protections that Congress intended
when the original ADA was passed in 1990.
A Senate hearing on the ADA Restoration Act will be held at 2:00 PM in 430
Dirksen Senate Office Building.
The Bus Tour has traveled more than 25,000 miles to more than 100 bus stop
events. Road To Freedom events have included U.S. Senators, Members of
Congress, Governors and other policymakers at sites such as the National
Civil Rights Museum, Brown v. Board of Education Historic Site, Clinton
Presidential Library, as well as state houses, city halls, museums,
churches, colleges, and schools throughout the country.
The tour traveled with disability rights photo-documentarian, Tom Olin, who
has been chronicling the disability civil rights movement for almost 30
years and whose work has been exhibited at the Smithsonian. Tom’s work is
the core of the Road To Freedom traveling multimedia exhibit which seeks to
put a human face on the Americans with Disabilities Act (ADA) with images
of people with disabilities engaged in civic participation and even acts of
nonviolent civil disobedience. These images of empowered citizens
struggling for a more accessible America provide a sharp contrast with the
mainstream media’s frequent portrayal of people with disabilities in the
context of charity, sympathy and pity.
For prior press coverage, photos, and more information, see
http://roadtofreedom.wordpress.com
SOURCE: Janine Bertram Kemp, Solutions Marketing Group, 503-622-6387,
janinebk@verizon.net
Posted November 30, 2006
10News Looks Into Orphanage Abuse Allegations
POSTED: 3:28 pm PST November 29, 2006
UPDATED: 8:44 pm PST November 29, 2006
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10News Investigates Orphanage
10News investigators have uncovered allegations of rape, torture and possible trafficking of children at an orphanage.
Also, 10News investigators revealed the orphanage’s connection to a ministry that raises millions of dollars for orphans.
10News got a hold of this story because of a little girl’s cry for help. The girl said a man who was supposed to be taking care of her molested her.
There is not much between Ensenada and San Felipe on Highway 3, except for tumbleweeds, a small town and a children’s orphanage called the Oasis.
"This is a cafeteria, an office, pastor's house, church, school. There are homes for children behind that,” said Dr. Lane Scott.
Scott worked inside the orphanage, but now he said he is kept out by a barbed-wire fence because of what he saw.
"(I saw) burns on children's hands, burns they received by a few of the house parents and supported by administration,” said Scott.
He said he provided volunteer medical care at the facility and over time he saw some terrible things.
"One of the girls was raped. There have been a number of girls and there have been similar attempted rapes. There were other violations. Abuse continues here," added Scott.
Sources within Mexican law enforcement told 10News at least seven girls were raped and five boys tortured at the orphanage.
10News obtained a letter written by a 12-year-old girl named Mari. She described in great detail how she was sexually violated at the orphanage.
“We were asleep. Suddenly, I felt someone take my blanket away. I was scared,” Mari said in her letter.
The alleged victim’s former teacher, Guadalupe Hernandez, read a portion of the letter to 10News.
Mari described how her attacker, an administrator and a man she called “papi,” tried to rape her.
“I was crying on my bed and he told me not to say anything,” said Mari.
“I was very upset and very saddened,” the letter said.
Hernandez said other girls have told her of similar experiences. She agreed to help Mari by sending out the letter in the mail.
When Hernandez confronted the orphanage’s supervisors, pastor Mauro Reyes and his wife, Lydia Palomeras, about the allegations, she said she was fired.
“He called me and told me I was fired. He said I had no right to investigate anything about the girls,” said Hernandez.
Hernandez gave a copy of the letter to Scott and mailed the original letter to Robert Fleck in Vancouver, Wash. Fleck runs International Children’s Care and funds the orphanage.
"I've been down there personally. I've talked to children and they haven't told me these things," Fleck told 10News investigators.
Scott said he met with Fleck at the orphanage recently and was told different things.
"In the end, he said, ‘I don't have time to talk to these children.’ He walked away and left them," said Scott.
Scott said he turned to 10News when he realized the seriousness of the problem.
Mari, the little girl who wrote the letter, has disappeared and so have other children, sources told 10News.
10News investigators tried to speak with several child protective agencies, but were not told anything regarding the disappearances.
Missing Orphans Possibly Involved In Sex Trafficking
The Oasis orphanage is in the high desert between Ensenada and San Felipe, but the story took 10News investigators to a side of Tijuana, Mexico most never get to see.
Prostitutes walk the city streets, with some as young as 8 years old.
“About $5,000 minimum price. That’s the going rate to buy a child who can be turned into a prostitute,” said Marissa Ugarte of the Bilateral Safety Corridor Coalition.
Where do many of these kids come from?
Ugarte said orphanages in Mexico and other parts of the world have become feeding grounds for the sexual trafficking industry.
"Some of the orphanages have been caught even doing pornography with the children inside the orphanage," added Ugarte.
She added that thousands of children are led away or mysteriously disappear from orphanages every year.
“There were young girls being molested,” said former Oasis volunteer Roger Brown.
Brown volunteered but was removed when he complained about the cruel punishment he saw.
"Nobody talked, kids or anybody, boys especially they were more afraid of getting their hands burned,” said Brown.
Others saw the same abuses, including Dr. Lane Scott.
"At times, they will put their hands in hot water, at different times, they’ll use fire," said Scott.
A source within federal Mexican law enforcement told 10News that children have been raped and tortured at Oasis. They said 19 girls are unaccounted for and unconfirmed reports said the girls have been placed under state custody.
"This is a problem, these sexual violations, sexual misconduct of various types," said Scott.
Scott said during his volunteer medical care at the orphanage he saw the problems.
“In talking to the administration, they denied it,” said Scott.
Hoping someone would investigate, Scott went to local authorities.
10News learned that several children were brought into a Baja police station and interviewed by members of the district attorney’s office, but nobody seemed to know what happened to those statements or the investigation itself.
10News investigators searched for answers by talking to several Baja police officers, but were turned away. They were told they did not know anything about the investigation.
It was later discovered that an employee in the office took down the reports that have since disappeared.
"They are using these children as commodities. They make money off each child they have here," said Scott.
Scott said the charity that supports the orphanage is raising millions of dollars.
“There have been accusations, but they have all been cleared away,” said Rick Fleck of International Children’s Care.
Fleck runs International Children’s Care, which funds the orphanage. In response to the claims of abuse, rapes and possible trafficking of children, Fleck told 10News, “I think it is unfounded. I don’t think it’s true. Anytime any abuse of children is suspected, we investigate it or the project members investigate it.”
10News investigators obtained tax returns for International Children’s Care. The most recent return from 2005 showed the charity took in $4.6 million for Oasis and other orphanages in places like Congo, Thailand and Ukraine. Many of the orphanages are unregulated or have minimal oversight.
Copyright 2006 by 10News.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
Posted August 23, 2006
Release at http://www.unc.edu/news/archives/jul06/cohen071106.htm
Related article at http://www.unc.edu/~pnc/pubs.html
Dr. Philip Cohen at (919) 966-6537, (919) 843-4791 or pnc@unc.edu
Study: Children with disabilities more likely to live with women
CHAPEL HILL - Children with disabilities are more likely than other
youngsters to live with single mothers or other female caretakers, says a
new study by a sociologist at the University of North Carolina at Chapel
Hill.
The study by Dr. Philip Cohen, associate professor of sociology in UNC's
College of Arts and Sciences, will be published in the Friday (July 14)
issue of the Journal of Marriage and Family. Miruna Petrescu-Prahova, a
doctoral student at the University of California, Irvine, and a former
student of Cohen's, assisted in the research.
The two analyzed 2000 U.S. Census figures, which listed data for about 2.3
million children aged 5 to 15. Among them, more than 130,000 were reported
to have mental and/or physical disabilities.
The researchers found that fewer than half (45.8 percent) of the children
with disabilities live with a married biological parent, compared to 62.3
percent of children without disabilities.
About one in four children with disabilities (24.5 percent) are cared for
by single mothers, compared to 17.4 percent of children without
disabilities. In addition, children with disabilities are more than five
times as likely to live with single mothers as with single fathers.
About 13.5 percent of children with disabilities are raised by other
caretakers (grandparents, other relatives, foster parents or adoptive
parents), compared with 7 percent of other children. The study shows that
these caretakers are significantly more likely to be women than men.
"The implications are that we have to pay attention to the needs and
demands of these families of children with disabilities, which are more
likely to be female-headed households," said Cohen, also a fellow at the
Carolina Population Center at UNC. "The work-family balance issues that so
many people are burdened with are especially challenging for families who
have children with disabilities."
Women shoulder a disproportionate share of the unpaid care for these
children, he said.
"Mothers who care for children with disabilities often perceive a lack of
institutional, community and family support for this work, which is
compounded by poverty and inadequate welfare programs," Cohen said.
The study also shows that children with disabilities are more likely to be
boys, with the gender difference most pronounced for mental disabilities,
and they are more likely to be black or American Indian.
Previous research shows that children's disabilities reduce the chances
that mothers will marry and increase the chances that a marriage will break
up, both of which usually lead to children living with their mothers, Cohen
said.
"Now we have reason to believe that even when these children don't live
with either biological parent, disabilities affect decisions about where
they will live," Cohen said. "When children require more care, it is women
who most often end up with the caretaking role."
Cohen, who came to UNC in 2005, researches work and family issues,
including the division of housework and women's employment. He also
examines inequality, segregation and discrimination by race and gender in
the workplace. In a future study, Cohen will focus on single mothers with
disabilities, "who are in the strongest grip of the work-family vice."\
Posted March 22,2206
Vaccine Study Findings Fuel Debate Over Autism
http://www.contracostatimes.com/mld/cctimes/14157806.htm
Press release:
March 21, 2006, 12:01 a.m. EST
UC DAVIS STUDY WITH MICE LINKS THIMEROSAL WITH IMMUNE SYSTEM DYSFUNCTION
(Sacramento, Calif.) – A team of cell biologists, toxicologists and molecular bioscientists at the University of California, Davis, has published a study connecting thimerosal with disruptions in antigen-presenting cells known as dendritic cells obtained from mice. The study provides the first evidence that dendritic cells show unprecedented sensitivity to thimerosal, resulting in fundamental changes in the immune system’s ability to respond to external factors. The study was published online today and will be available in the July print edition of Environmental Health Perspectives, the peer-reviewed scientific publication of the National Institute of Environmental Health Sciences.
“This is the first time that thimerosal has been shown to selectively alter the normal functions of dendritic cells,” said Isaac Pessah, a toxicologist with the UC Davis School of Veterinary Medicine, director of the Children’s Center for Environmental Health and Disease Prevention and senior author of the study. “Dendritic cells play pivotal roles in overcoming viral and bacterial invaders by coordinating the immune system’s overall combat response.” One dendritic cell can activate as many as 300 T-cells – white blood cells that help find and kill external agents that attack the immune system – making them the most effective immune system activators.
The study shows how intricate connections between calcium channels in dendritic cells change when exposed to thimerosal. “The slightest fluctuation in how calcium channels ‘communicate’ can alter the growth, maturation and activation of dendritic cells,” explained Pessah. “Thimerosal dramatically alters how two key calcium channels, code-named RyR1 and IP3R1, found in dendritic cells function as a team by ‘garbling’ the normal signaling system between them.”
When thimerosal at a concentration as low as 20 parts per billion alters the fidelity of normal calcium signals, dendritic cells show abnormal secretion of IL-6 cytokine – a potent chemical signal that initiates inflammatory responses. Higher concentrations – 200 parts per billion – causes programmed death of dendritic cells, preventing them from maturing and doing their primary job of activating T-cells. Without proper feedback to guide its response, a normal dendritic cell can quickly become “a rogue, producing misinformation that could activate aberrant and harmful immune responses,” Pessah explained. “Even one rogue dendritic cell can activate many inappropriate immune responses.”
The research team conducted the study on cells cultured from a strain of mouse not particularly susceptible to immune dysregulation. Using fluorescent stains and powerful microscopes to study both immature and mature dendritic cells from bone marrow cultured under normal physiological conditions, the researchers discovered that extremely small levels of thimerosal interfere significantly with calcium channel function after just a few minutes of exposure. They also observed that immature dendritic cells are particularly sensitive to thimerosal.
Thimerosal is a cheap and effective mercury-based preservative. Its potential effects on embryonic neuron development led to its removal from many pediatric vaccines, however it is still used in influenza, diphtheria and tetanus vaccines, blood products and many over-the-counter pharmaceuticals. The concentrations of thimerosal used by the UC Davis researchers were comparable to those attained in childhood vaccinations containing the preservative.
Researchers and parents have previously proposed links between childhood vaccines and autism, a neurodevelopmental disorder that affects language skills and social interactions. In addition to being a direct neurotoxicant, the UC Davis study indicates that thimerosal may also be an immunotoxicant, leaving the immune system vulnerable to microbes and other external influences.
“Our findings do not directly implicate thimerosal as a single causative agent for triggering neurodevelopmental disorders such as autism,” Pessah said. “There is growing evidence that autism is several disorders that we now refer to as just one. There is also growing evidence that some children with autism have unique immune cell composition and responses to antigens. The results of our work provide a framework to test the hypothesis that the genetic background of some individuals may render them especially susceptible to thimerosal.”
Other experts also advise drawing no final conclusions regarding thimerosal and autism based on these outcomes.
“These findings should be interpreted cautiously. Although they suggest that thimerosal may affect dendritic cell function, the pathophysiological consequences of thimerosal remain unclear,” said David A. Schwartz, a physician and director of the National Institute of Environmental Health Sciences.
Since cell functions can differ across organisms, Pessah will next study dendritic cells isolated from the blood of children with and without autism to confirm if the intercellular changes are the same in humans. The initial mouse study was funded by the National Institute of Environmental Health Sciences and the UC Davis M.I.N.D. Institute. Joining Pessah on the scientific team were molecular bioscientists Samuel R. Goth, Ruth A. Chu and Gennady Cherednichenko and pathologist Jeffrey P. Gregg.
A copy of “Uncoupling of ATP-mediated Calcium Signaling and Dysregulated IL-6 Secretion in Dendritic Cells by Nanomolar Thimerosal” can be downloaded at http://www.ehponline.org/docs/2006/8881/abstract.html.
# # #
The NIEHS-funded Center for Children’s Environmental Health and Disease Prevention is a multi-disciplinary research organization established to examine how toxic chemicals may influence the development of autism in children. The center’s goal is to contribute knowledge about autism that will lead to new prevention and treatment strategies. For more information, visit www.vetmed.ucdavis.edu/cceh. The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center bringing together parents, scientists, clinicians and educators for research on autism and other neurodevelopmental disorders. For more information, visit www.mindinstitute.org.
Posted March 5, 2006
Hoop Dreams! (YOU MUST WATCH THIS VIDEO)!!!
http://video.google.com/videoplay?docid=-818944862742874918&q=autistic
Posted March 3, 2006
CDCAN Newsclip: San Francisco Chronicle Article
Sunday edition, February 19, 2006 - Front page
CDCAN Note: The San Francisco Chronicle published in their February 19, 2006 Sunday edition, front page, a controversial article on California's special education program. The article has been praised by some school district advocates as an accurate report but strongly criticized by many parent and other disability rights advocates as one-sided and a misrepresentation of what families with children with special needs face. Over 700,000 children with special needs are in California's special education programs, including students in State Special Schools. The issue of special education will be the topic of an upcoming CDCAN Disability Rights Townhall Telemeeting.
Extra-special education at public expense
By Nanette Asimov, San Francisco Chronicle Staff Writer.
At Woodside High in San Mateo County, college-prep classes awaited a 15-year-old boy with learning disabilities and anxiety.
He would blend in with other college-bound students, but also receive daily help from a special education expert. He would get a laptop computer, extra time for tests -- and an advocate to smooth any ripples with teachers. If an anxiety attack came on, he could step out of class.
But Woodside High wasn't what his parents had in mind.
Instead, they enrolled him in a $30,000-a-year prep school in Maine -- then sent the bill to their local public school district.
Similar stories are playing out up and down California as more parents of special education students seek extra-special education at public expense: private day schools, boarding schools, summer camps, aqua therapy, horseback therapy, travel costs, personal aides and more.
Dissatisfied with -- or unwilling to consider -- classes and therapies offered by public schools, growing numbers of parents have learned that demanding more can yield striking benefits, especially when they threaten to sue.
And an expensive legal battle is the last thing district administrators want. So they often give in.
Legal proceedings "are a huge time drain on your administration and your teachers," said Karen Mates, special education director for the Tampalpais Union High School District in Marin County. "You don't want to spend precious dollars on this, so districts will settle a case to avoid it."
The result: Expensive legal judgments and confidential settlements add hundreds of millions of dollars to already soaring special education costs across California, while taxpayers are kept in the dark about how the money is spent.
Meanwhile, California school districts shift more than a billion dollars a year out of their regular school budgets to pay for it all.
"This is not sustainable," said Paul Goldfinger, a California school finance expert. "Special education is a growing portion of budgets in many districts, squeezing out services for other pupils.
Yet to many parents whose children need help, nothing seems more justified than seeking the best.
In the Woodside case, the boy was still a year from finishing middle school when his parents hired a consultant to find them an alternative to Woodside High.
The consultant, Miriam Bodin, suggested several private schools, all outside of California. The parents chose Kents Hill, a bucolic boarding school with one-tenth the enrollment of Woodside High -- and no special education program.
"I didn't care if they had special education," said the boy's mother, who agreed to discuss the case if the family were not identified. "He needed a small classroom on a small campus. This was a very good situation."
He enrolled at Kents Hill in 2000.
Records show the parents had previously gotten their elementary district, Portola Valley, to pay half the tuition of a small private middle school in Vermont for students with learning disabilities.
Now they hoped to get the Sequoia Union High School District, which includes Woodside High, to pay for Kents Hill.
The family hired attorney Kathryn Dobel, an expert in special education cases. She filed papers in 2002 demanding that Sequoia Union pay four years of tuition and the family's costs for travel between Maine and California.
And by the time the boy graduated from high school in 2004, the Woodside case would stand as an icon of the troubled state of special education: parents and educators at odds, inequity in a system meant to equalize, and myriad rules so esoteric they've spawned a new specialty field for lawyers.
"Special ed," as it's widely known, is a hard-won civil right born in the 1970s and designed to correct years of discrimination by giving children with special needs an equal opportunity to learn. When it works as it should, special ed offers a lifeline to kids with a range of disabilities, from speech impairments to brain injuries.
Each child receives an "individualized education plan" specifying the type and amount of extra help they'll get. A team of parents, teachers, therapists -- and, increasingly, lawyers -- meets to update the plan.
The bedrock of the federal law is a "free and appropriate public education" for anyone with disabilities, from birth to age 22.
But the law doesn't define "appropriate" -- an omission that has led to escalating disputes about what public schools must pay for.
Special ed serves nearly 700,000 students in California, and the program appears to be working for most of them. Yet complaints are rising, and fast.
Last year, 3,763 children with disabilities were the subject of formal complaints over educational services, triple what it was a decade ago. Parents open the vast majority of cases, and districts have a built-in financial incentive to settle them because it can cost up to $40,000 to go to a hearing. And then there's the possibility of an expensive judgment against the district.
So districts try not to let a case go that far. Last year, districts participated in 386 full hearings -- just 10 percent of cases opened.
The rest -- 90 percent -- were resolved through secret settlements.
"They really don't want parents out saying, 'Oh, if you just sue this district, you'll get whatever I got,' '' said Elizabeth Estes, an attorney with Miller, Brown, & Dannis, which represents districts.
It's an equation that virtually ensures some children will receive benefits unavailable to those whose parents do not file complaints.
Examples include "dolphin therapy and horseback riding," said Johnny Welton, a special ed coordinator for Contra Costa County. "Things that are beneficial to kids but are not an education-related service."
Welton said such programs cost tens of thousands of dollars and lure parents in with the promise of outstanding results. When parents ask for them, educators are forced to do "risk management."
"Why not pay for a few hours of horseback riding instead of spending $50,000 on attorneys at a hearing?" he said. "In a practical sense, the schools have to pay it."
In recent years, private education at public expense has become a sought-after benefit for children with a wide range of disabilities. The practice of "unilateral placement" -- enrolling a child in a private school, then billing a district for tuition -- is gaining ground, say educators.
In California, private enrollment for students with disabilities has risen nearly five times faster than the overall increase in special ed students, state records show.
Since 1993, the number of students in public special ed programs rose 27 percent, to 681,969 from 539,073. But special ed students placed in private schools at public expense rose nearly five times faster -- 128 percent, to 15,926 from 6,994.
As costs soar, many educators paint a picture of a system financially out of control and increasingly unfair to students whose families can't afford lawyers to win them extra-special education at public expense.
In Sonoma County, for example, a family recently enrolled its child in an out-of-state boarding school, then billed its district not only for tuition, but airfare, car rental, hotel, cell phone calls, meals, tailoring, new clothes, an iBook computer, stamps, tolls, gas and 13 future round-trip visits. Total tab: $67,949.
The district paid "a portion," said a school official who revealed the bill on condition of anonymity.
"Special education is a huge industry now," said Joyce Willett, the Sequoia Union High School District's special ed director. "I don't think the average person realizes what's going on."
Mates, the special education director for the Tampalpais Union High School District, agreed.
"We're looking at a huge crisis heading into our schools," she said. "At a time when education dollars are scarce, my district alone spends hundreds of thousands of dollars each year to pay for private placements for the children of Marin families, where schools often become the enemy. I want to expand our special education programs, but I can't even bring that up."
And as the demands on special education rise, experts say the financial consequences for public schools are staggering. All California students, disabled or not, feel the impact of rising special ed costs.
In 2004, for example, California schools received $4.1 billion from federal, state and local sources for special education.
It wasn't enough. So districts took $1.6 billion more from regular class funds -- double what they took a decade earlier -- according to an analysis by School Services of California, a financial consulting firm.
In all, 28 percent of special ed expenditures in California came from regular education budgets in 2004.
"It's a blank check," said Goldfinger, vice president of School Services. "The system is stacked so that one segment of the population -- disabled children -- has first call on funding, and the others get whatever's left."
If there's one thing parents, lawyers and educators agree on, it's that special education law is about as complicated as it gets.
When President Gerald Ford signed special ed into law in 1975, he did so reluctantly, predicting that the public would wind up paying for "administrative paperwork and not educational programs."
"Holy cow, was he ever right," said Jerry Gross, a retired superintendent in Orange County who helped draft the original law. Gross described the law's myriad requirements as "150 points of potential mistakes" for school districts.
Missing even one step can cause a district to lose its case if a hearing officer finds that a student's education suffered as a result.
"There isn't an attorney who can't find us making a mistake on one of those things," Gross said.
The Woodside case is a good example.
On July 1, 2002, the Woodside boy's attorney filed the papers demanding that the Sequoia district pay for tuition at Kents Hill, family travel, extra classes and psychological testing for the boy, who had just completed his sophomore year at boarding school.
But district administrators balked at paying the boarding school bill; 640 other students with learning disabilities were enrolled in the Sequoia district, and the educators said their public program was good and met all legal standards.
"We have an excellent special education program," said Woodside High Principal Linda Common. "We really help kids."
Nevertheless, in hopes of keeping costs down, the district agreed to try and settle with the family. But talks went nowhere for two years. So in spring 2004, the Woodside case went to a full hearing before state Hearing Officer Michael Arkin, who had to decide whether the Sequoia Union High School District offered the boy an "appropriate education" each school year.
A parade of witnesses took the stand over six days. A speech pathologist, a neuropsychologist, boarding school teachers, and the consultant Bodin all spoke for the student.
On the district's side were teachers and special ed experts, all testifying to the quality of Woodside High's program and the skill of its instructors.
In the end, Arkin ignored it all.
Instead, he looked at whether the district had followed all legal steps and met every deadline.
It had not.
The boy's attorney, Dobel, presented evidence that Sequoia had never prepared a required "transition plan" for the family. That is, district administrators had never filled out the proper form indicating precisely how teachers would ease the boy into bustling Woodside High, either from his private middle school or from Kents Hill.
That misstep meant Sequoia had failed to offer the student a legally appropriate education -- and the family was justified in seeking a school somewhere else.
Not that the family ever requested a transition plan, Arkin noted -- or even visited Woodside before choosing a private school.
"The question arises as to whether Student's parents intended to enroll him at any district school under any circumstances," Arkin wrote in his decision.
Based on that suspicion, Arkin ordered the school district to reimburse half the tuition, not all.
He also denied round-trip airfare, noting that the family had failed to show why their son had to attend school "as far away from his home district as is possible in the continental United States."
By the time Arkin reached his decision, the boy had already graduated and was about to enter college.
In all, the district spent $140,600 -- including legal bills that exceeded the district's share of the Kents Hill tuition, which was $62,600, said Ed La Vigne, who cuts the checks for Sequoia.
The district paid $50,000 for the family's legal bill and $25,000 for its own. From the family's perspective, the battle was justified.
"He was not offered the classes that I thought he needed," the mother said. "If my son didn't get what he needed, my fear was that he would drop out of school.''
She acknowledged he had never been a discipline problem. The hearing records describe him as a "young adult who is likable, friendly, energetic and highly motivated. He is physically active, plays lacrosse and soccer, and enjoys wakeboarding and snowboarding."
"He's a model child," she said. "However, his frustration and anxiety were so high that I could see that this is the type of person who, out of frustration, turns to drugs or something that he shouldn't be doing."
To Sequoia officials, the case exemplifies a system so out of control that a procedural misstep can result in one student attending an exclusive boarding school at public expense while others make do with the standard fare.
"This is an attack on public education," La Vigne said. "Everybody wants the best for every kid. At what point do you say 'enough'?"
Defining 'appropriate'
Federal law says every person with a disability is owed an "appropriate" education, free of charge, from birth to age 22. It doesn't have to be a "Cadillac" education, according to the U.S. Supreme Court. But it must provide a "basic floor of opportunity."
California schools serve nearly 700,000 students with disabilities, and the number of formal disputes between families and school districts has risen steadily for 15 years. Last year, there were 3,763 requests for dispute resolution.
Most are settled secretly through mediation, where benefits won by families are never disclosed. But some escalate to legal hearings.
Details of these cases are posted on the Internet, providing a rare glimpse into the battles over special education services that go on behind closed doors every day. Family names are not revealed, and financial figures are generally incomplete because they do not include attorneys' fees or other costs associated with the case.
Below are short summaries of three cases, including financial figures acquired by The Chronicle through the Public Records Act. The full case histories can be found at eit.otan.dni.us/speced/seho/seho_search/sehoSearch.cfm. (The case number and year are required.)
(Case No. 400) San Rafael Elementary District 2003
At issue: If a child makes some academic and behavioral progress at school but exhibits inappropriate and dangerous behavior at home, is the school responsible for addressing the out-of-school problem? And should the district, therefore, pay year-round residential tuition, cross-country transportation, food and lodging costs for six visits by parents and siblings, and interest on the school loan?
What happened: A 10-year-old boy with Tourette's syndrome, diagnosed as emotionally disturbed with aggressive and potentially dangerous behaviors, attended a Bay Area private school for students with similar problems. The district paid the tuition. Although the boy made overall progress at school, he was unable to apply what he learned outside of the classroom. At home, the boy's behavior was "quite frightening," testified Dr. Herbert Schreier, chief of psychiatry at Children's Hospital of Oakland. In 2003, his family enrolled the boy in an out-of-state boarding school and asked the district to pay. Current 12-month tuition: $98,185.
What the parents said: Their son's unique needs could be appropriately addressed only at a 24-hour residential school, such as Devereux in Connecticut, which specializes in helping students with similar disabilities. Because the child did not apply what he learned at private day school and therapeutic programs to the real world, the public school district should pay for more extensive support. In a letter dated Aug. 13, 2002, the mother wrote that although her son did not hit, bite or kick at school, at home such problems were "severe and have not let up at all."
What district administrators said: The family's placement of their son at Devereux was made for family reasons, not educational reasons. "It's understandable that parents want the best for their children, but our society is not willing to provide a Cadillac education for every child - just an education," said attorney Damara Moore of Ruiz & Sperow in Emeryville, who represents the district. "In this situation, the student was violent at home, so they wanted him removed. And they wanted someone to pay for that."
What the hearing officer ruled: The district was responsible for the student's behavior outside of class and that a 24-hour residential school was appropriate. The district had to pay for the family's tuition and cross-country travel to attend two required meetings at the school, but not for other travel or interest payments.
Bottom line: The San Rafael Elementary District has so far paid $356,052, including the family's legal expenses. Elements of the case are being appealed in federal court.
(Case No. 192) San Francisco Unified School District 2002
At issue: Should a kindergarten-age girl with an autism-like condition receive a personal aide, play therapy, psychological therapy and a private education at public expense, and should those services continue after the local public school district has developed a similar program that administrators say is tailored to meet her needs?
What happened: District administrators told the child's family to choose from among several schools with classes appropriate for their daughter, who had a central nervous system disorder causing autism-like symptoms, physical problems and difficulty relating to peers. After looking at a few schools, the family was told that some were full or were for preschool students only. The family then enrolled the child in private school and hired private therapists, including a personal aide. District administrators told them a public program was available, but the family declined it unless an aide was also provided. The district eventually agreed to offer an aide for four months, then re-evaluate the need. The family declined.
What the parents said: The district made insufficient efforts to assess all the educational needs of their daughter, who was 7 during the hearing, and to provide her with appropriate services. The district should compensate for those errors by paying for private tuition and school supplies, as well as reimbursing the cost of a personal aide, play therapy, private testing and services in neuropsychology, occupational therapy, speech and language, psychological help, vision, physical therapy and transportation.
What the district said: A one-to-one personal aide was not necessary for the child to benefit from her education, and could even impede progress toward greater independence. An appropriate public program has always been available, although not necessarily at the family's preferred school. Small-group speech, occupational and physical therapies were also educationally appropriate for her; individual services were not necessary.
What the hearing officer ruled: The district made two significant errors: Educators were four months late in offering the child her individual education plan, and they should have directed her to attend a specific program at a specific school, instead of requiring the parents to participate in the district's school-selection program. As a result of these mistakes, and because the personal aide and play therapy help the child, the district must pay her private tuition and reimburse the family for all other services requested, except the neuro8psychological and vision.
Bottom line: The district has so far paid $313,985, including the family's legal expenses. District administrators say they have since developed a program specifically designed for this child. The family has so far declined to enroll their daughter in the program, nor must they do so. Once the hearing officer rules that a private placement is appropriate, a district must continue to pay for it until a family chooses to make a change or until the district takes the family back to a new hearing and wins.
(Case No. 2087): Ocean View Elementary District in Huntington Beach (Orange County) 2001
At issue: Is a 13-year-old boy with autism entitled to receive horseback riding and aquatic therapies at public expense, and should the school district or the parents decide in what setting to test the student?
What happened: The boy's parents and district officials agreed that he should attend a public middle school so that he could interact with nondisabled peers. But they could not agree on what his academic goals should be, where he should be tested, and whether specialty therapies were necessary for him to make educational progress.
What the parents said: Horseback and swimming pool therapies were essential to meet their son's unique needs. His educational progress should be determined using the "ecological" method, in which tests are conducted in several settings - including a regular education classroom, home and community. Among those testifying for the student was Judith Heumann, who served as assistant secretary for the Office of Special Education and Rehabilitative Services under President Bill Clinton.
What the district said: Horseback and swimming pool therapies were not necessary to meet the student's educational needs. An appropriate program included speech and language services; occupational therapy; physical education adapted for students with special needs; parent training; transportation; and a test of progress every three years, only some of which would be conducted in settings outside of the school's therapy room.
What the hearing officer ruled: The district's educational program and testing method were appropriate for the student, and horseback and aquatic therapies were not necessary.
Bottom line: The district paid $239,044 to defend its position. The expenditures included $93,150 for a 23-day hearing, $108,019 for a federal appeal; $36,875 for "administrative costs"; and $1,000 to hire substitutes for eight days while the boy's teachers testified or prepared for hearing.
Sources: Special Education Hearing Office and San Rafael Elementary, San Francisco Unified and Ocean View Elementary school districts.
CHART (1): A growing class - special education
While the number of public school students in California increased by 20 percent between 1993 and 2004, the number of special education students grew by 27 percent, according to the California Special Education Management Information System. Meanwhile, the number of special education students in private school at public expense has grown by 128 percent - from 6,994 students in 1993 to 15,926 in 2004.
Disabilities of California's 681,969 special education students
Learning disabled*: 48%
Speech/language impairment: 26%
Mental retardation: 7%
Unspecified health impairment: 5%
Emotionally disturbed: 4%
Autistic: 4%
Deaf or hard of hearing: 2%
Orthopedic impairment: 2%
Visual impairment: 1%
Multiple disability: 1%
Brain injury: 0.3%
Deaf-Blind: 0.03%
* The National Institutes of Health define learning disabilities as disorders that affect the ability to understand or use spoken or written language, do mathematical calculations, coordinate movements, or direct attention.
Source: California Department of Education
CHART (2): Official sources of funding
In billions of dollars with a breakdown of the origin of funds
Local State Federal
2000 9% 75% 16%
2001 9% 73% 19%
2002 9% 71% 21%
2003 9% 67% 24%
2004 8% 66% 26%
2005 8% 65% 27%
2005: $4.3 billion
Source: California Department of Education
CHART (3):Money diverted by school districts in 2003-04
Percent of Bay Area school district's general fund shifted to pay for special education
San Francisco 10%
($34 million)
Mount Diablo 9%
($23 million)
Oakland 4%
($15 million)
Berkeley 11%
($10 million)
Tamalpais Union High 8%
($2.8 million)
San Rafael City Schools 6.6%
($1.8 million)
Source: School Services of California and individual school districts
CHART (4):The number of disputes and the use of attorneys is rising
Number of disputes
1990 548
1995 1,255
2000 2,197
2005 3,763
Source: Special Education Hearing Office
*************
Posted March 3, 2006
http://www.suntimes.com/output/news/neuro14.html
News Archive
Neurosurgeon sued for fraud
February 14, 2006
BY FROM STAFF REPORTS
The attorney for Daniel Valdovinos, 22, a brain-damaged quadriplegic, filed a lawsuit Tuesday in Cook County Circuit Court alleging fraud against Dr. Tadanori Tomita, head of the Department of Neurosurgery at Children's Memorial Hospital in Chicago and a professor at Northwestern University Medical School.
The suit, filed by attorney Robert Holstein, alleges Tomita intentionally recorded a false observation concerning Valdovinos' brain two weeks after his birth in 1984, Holstein said in a news release. The release states that Tomita admitted 13 years later that his written medical record was incorrect. The suit alleges Tomita intentionally "doctored" that record to cover up his own negligience and that of Children's Memorial for failing to respond to requests for consultation regarding the head injury.
Posted March 3, 2006
AOL Latino Tu Vida: Familia: Tus hijos - El trastorno autista (parte III)
http://tuvida.aol.com/familia/tushijos/canvas?id=20060228181109990001
Posted February 4, 2006
Parents' plea to DFCS: Be more responsive
By CRAIG SCHNEIDER
The Atlanta Journal-Constitution
Published on: 02/02/06
More than 100 people, including several parents who say the state wrongfully placed their children in foster care, protested Wednesday against the child protection agency at the state Capitol.
Some in the crowd toted signs that compared the agency to terrorists. They accused caseworkers of abusing their power over parents, and they chanted "Where is Sonny, Where is Sonny," as they called for Gov. Sonny Perdue to fix the state Division of Family and Children Services.
BEN GRAY / Staff
(ENLARGE)
The case of Jackson Bortz, a 3-year-old in Roswell, has become a lightning rod for those disgruntled with the actions of the state Department of Family and Children Services.
The rally was sparked by the case of Jackson Bortz, a 3-year-old boy removed from his Roswell home after the death of his younger brother Jan. 3. The parents, Don and Rachel Bortz, said 5-month-old Dylan Bortz died after his mother accidentally dropped him.
At the time, doctors at Children's Healthcare of Atlanta at Scottish Rite said the boy's skull fracture might not have been an accident, and DFCS officials said it raised the possibility of child abuse.
On Wednesday, the Fulton County medical examiner ruled the cause of death "undetermined." The autopsy found no link between the skull fracture and the death, officials said.
DFCS initially placed Jackson Bortz in the care of his paternal grandparents, awaiting the outcome of the police investigation. That in- vestigation continues. Don Bortz said DFCS then moved his son to a foster home, asserting that he and his wife had violated their visitation rules. The parents say DFCS never gave them clear visitation rules.
The Bortz family has waged a public battle against DFCS. It created a Web page calling for a state investigation of DFCS, "to keep DFCS from trampling on and violating the constitutional rights of parents and children."
Last month, the family showed up at a state Human Resources Board meeting with 100 protesters. Their cause has become a magnet for other parents who feel wronged by the state child protection system.
DFCS officials declined to comment on the rally Wednesday. And they would not discuss the Bortz case or any other case, citing confidentiality laws. But officials have said they treat parents fairly and remove children when they are at risk of abuse or neglect.
At Wednesday's rally, several parents told stories in which they said they had not abused their children, but DFCS removed their children and then remained largely unresponsive to the parents' side of the story.
"My baby is not an abused baby. She was sick," said Kimberly Gomez of Marietta.
Gomez said DFCS took away her daughter only a few weeks after her birth, claiming the mother had not fed her for days. Gomez said the child, removed five months ago, was ill.
"We are still fighting for my baby," she said. She held a sign saying, "Our baby is a state hostage."
*******
Posted February 1, 2006
SHOOTING IN GOLETA
* Charlotte Colton, Age 44, Shooting Victim Dies
* Mother of 3 Including A Child With Developmental Disabilities
* Served As Board Member of Alpha Resource Center
GOLETA - Charlotte Colton,the mother of three children including a young son with developmental disabilities, and the lone survivor of the shootings at a US Postal Service facility in Goleta, near Santa Barbara, died this morning (February 1) at Santa Barbara Cottage Hospital. She was undergoing treatment for a gunshot wound to the head she suffered Monday night following an attack at the postal facility by a former postal worker that left five other co-workers dead. The former postal worker, identified as Jennifer Sanmarco, killed herself at the facility, leaving a total of 7 people dead. The postal center where the shooting took place, is located just a few blocks from the University of California, Santa Barbara in the town of Goleta, about 100 miles northwest of Los Angeles.
Colton's family has asked that Charlotte Colton's organs be donated and funeral arrangements are pending. [Note: see CDCAN Disability Rights News Report #14 for more details. We will post and forward any information regarding any fund for donations to the family]
Family and friends of Charlotte Colton greeted the news of her death - and the deaths of her co-workers, with tears and what one person said was almost "overwhelming grief" and shock. Local advocates for people with disabilities, including many parents who worked with Charlotte Colton on disability issues in Santa Barbara county, were stunned by the shootings and her death. Her family, including her husband and three children are in seclusion following her death and did not issue any immediate statement.
She previously served as a board member of Alpha Resource Center, a respected and well known community-based organization that provides services and supports to people with developmental disabilities in the Santa Barbara area, and she remained active in special needs activities and local support groups for her son and others.
"Charlotte was a former Alpha board member and mom to 3 great boys. Her son Kyle has CP [cerebral palsy]. Charlotte was in the [Alpha Resource Center] office over the holidays sharing news of her family and their plans for the new year," Kimberly Olson, executive director of the non-profit agency said in a message to friends and workers issued before her death "...I know the Colton family will be in your prayers."
Friends Concerned That Family Receives Immediate Services From Local and State Agencies
Friends of the Colton family including local disability advocates were concerned about making sure that Charlotte Colton's son with developmental disabilities - and the rest of the family - receive immediate needed services and supports from various responsible county and state agencies.
Tri-Counties Regional Center, which funds services and supports for children and adults with developmental disabilities in Santa Barbara, San Luis Obispo and Ventura counties, including services for Charlotte Colton's son, issued a statement of sympathy to the family and a commitment to help the Colton family.
Total Number of Dead Now 7
According to the Santa Barbara County Sheriff's department, those who were shot and killed by Jennifer Sanmarco (in addition to killing herself) were:
* Charlotte Colton, 44 of Santa Barbara
* Zee Fairchild, 37, of Santa Barbara
* Nicola Grant, 42, of Lompoc
* Maleka Higgins, 28, of Santa Barbara
* Dexter Shannon, 57, of Oxnard
* Guadalupe Swartz, 52,of Lompoc
Earlier today (February 1), Santa Barbara County Sheriff Department officials said they were investigating the death of shooter Jennifer Sanmarco's former neighbor, who was found dead at the condo complex where the former postal employee once lived. They believe there is a link between that killing and the shootings at the postal facility.
Posted January 14, 2006
PRESS RELEASE
January 14, 2006
PARENTS LOBBY HOUSE FOR BILL TO PROTECT FAMILIES FROM PSEUDOABUSE
Who: The Family Reclamation Movement
What: A Congressional Lobby for Change and Accountability
When: January 19th and 20th, 2006 , 07:00am
Where: The Capitol, West Front Entrance,
A group of parents calling itself “The Family Reclamation Movement,” led by Dr. Cheryl BryantBruce, M.D. and Atlanta resident Kimberly Gomez is going to Washington, D.C., to lobby the House of Representatives for a bill to protect families from pseudoabuse.
Dr. Cheryl BryantBruce and her child, who became known to the world as “Baby Gregory,” became an international household name on February 9, 1995 when she kidnapped her 19 month old son, from the custody of a state-sanctioned foster-care placement in Tennessee to bring the critically ill child to Egleston Children’s Hospital in Atlanta for a second opinion. The baby had been taken from his family when a Tennessee hospital made allegations of child abuse. The findings that the hospital alleged were evidence of child abuse were later shown by doctors at Egleston to be related to the child’s underlying medical condition.
Atlanta resident Kimberly Gomez is the mother of five children, the youngest of whom was removed from her custody when the child was almost three weeks old. Ms. Gomez took her child to The Scottish Rite Children’s Hospital in Atlanta because her baby had been vomiting and was failing to gain weight appropriately. In spite of the fact that Ms. Gomez had expressed concern to medical personnel previously about her baby’s slight frame, the hospital held her baby and an allegation was made of Munchaussen’s, alleging that she had abused her baby by giving it an E.Coli infection. When the hospital was not able to substantiate this, the allegation was changed to neglect, alleging that she had a mental condition called post-partum depression and had failed to feed her child. After multiple attempts through the court system to get her baby returned, the child still remains in the custody of the state, where the child continues to show inappropriately low weight gain and poor feeding ability.
Dr. BryantBruce was contacted by Ms. Gomez and another Atlanta mother Charmaine Smith in December, seeking her assistance in helping them to bring their babies back home. Charmaine, a brand new mom, lost her first baby to the state when the same hospital alleged that the child had multiple fractures. An initial x-ray obtained from the hospital showed no fractures. The state presented a set of x-rays as evidence that showed multiple fractures. A recent second opinion at the Cleveland Clinic in Ohio confirmed that the child had never had a fracture in his life. Ms. Smith who spent time in jail for child abuse was an innocent victim of pseudoabuse. Her child also remains in state custody.
With all of these cases, and many like them, the state social workers, medical personnel and even judges duck behind immunity laws as they wantonly brandish allegations of abuse and then perpetrate the fraud. Parents are made to jump through hoops like animals in a circus in efforts to get their children back, only to find when they get back to court that the rules have been changed and goals have been set which they can never attain. Meanwhile, families are torn apart. Very few parental relationships survive the fiasco. Siblings who are left behind suffer numerous emotional problems and frequently become socially maladjusted. Many develop a disdain for the legal system that they have seen fail them and destroy their family. All suffer from post-traumatic stress to varying degrees.
While The Family Reclamation Movement acknowledges that Child Abuse is real, we are the evidence that pseudoabuse is real and equally devastating to families. Not only is it devastating to families, but the fear of it is weakening the United States as a whole, by rendering American families impotent in our parenting abilities. Families are afraid to discipline their children because of fear of allegations of abuse. Families are afraid to take their children to hospitals, because if the family has not been affected directly by pseudoabuse, most now know of at least one other family that it has negatively impacted. American society is in a crisis!
Posted September 29, 2005
Reprinted with permission from Ragged Edge Online
http://www.raggededgemagazine.com/departments/closerlook/000106.html
Disability Meets The Boom
by Frank Bowe
These are hard times for disability advocates. The nation, and most
states, have other priorities. Hurricanes Rita and Katrina have dominated
the news and our attention in recent weeks. Even without those urgent
concerns, Washington, DC, has federal budget deficits in the hundreds of
billions of dollars. This translates into cuts in programs affecting
people with disabilities. It also means that there is almost no interest
in expanding services -- for anyone. On other fronts, our leaders are
preoccupied with Iraq and Afghanistan. Congress is bitterly divided by
partisan rancor. If anything positive is going on for people with
disabilities in Washington, DC, it's news to me.
In the states, meanwhile, rising costs of public pensions for state
workers, of Medicaid, and, in many areas, of supporting the huge influx
of undocumented persons are similarly crowding out any sparks of interest
in disability services and rights. Helping the many people who were
displaced by Rita and/or Katrina, as urgent and needed as it is, has a
similar effect.
What's an advocate to do? These are large societal forces. They seem to
be too big for our small movement to fight. Not surprisingly, many
advocates are lying low. Some are busy raising funds, preparing for the
day when we can once again make ourselves heard. Others are rediscovering
long-neglected personal needs and interests.
It's my belief that they haven't noticed that there's something not just
big, but humongous, going on underneath the surface. The disability
community is about to become a lot more central in American life.
The Graying of Baby Boomers
Advocates know, but may not realize the significance of, this fact: the
76 million-member baby boom generation is rapidly aging. This year the
leading edge turns 59. In just a few years, millions will reach
retirement age. Between 2010 and 2020, the number of people aged 65-84
will go up 39 percent (by 13 million people). By 2010, there will be 34
million persons 65-84; ten years later, in 2020, there will be 47 million.
So what, you say? Bear with me. In what follows, I am drawing upon data
from the Centers for Disease Control and Prevention (CDC) and the
National Center for Health Statistics (NCHS). I'll cite the sources
later. First, the numbers:
As people get into their 60s and 70s, they become increasingly likely to
develop heath conditions. Take hearing. There was a Newsweek cover story
this summer (the cover, no less!) about this. In the U.S. today, about 31
million people report some level of "trouble" with their hearing. That's
15 percent of all Americans. Now, because hearing loss is most frequent
among older persons, this group is set to explode. Today, among persons
aged 65-74, 30 percent have a hearing loss. Of those 75 years of age or
older, 46 percent have a hearing impairment.
What is happening is that the number of people in these age ranges is
surging, simply because the 76 million baby boom generation is beginning
to move through those age spans. By 2020, if those percentages hold
(which they very likely will), there will be 40 percent more persons with
hearing impairments in these age groups. It's simple math.
The same thing is occurring with respect to vision impairments. Today, 19
million Americans of all ages report "trouble" with their sight. That's 9
percent of the population. Among those aged 65-74, though, the proportion
jumps to 15 percent. Of those 75 years of age or older, 21 percent have a
vision loss. By 2020, you will see 40 percent more in each age range
having impairments of vision.
Or take mobility. Today, 14 percent of American adults report "moderate
mobility difficulty". A total of 28 million of us have physical
conditions of one kind or another. That's about one in every ten. Of
them, 13 million Americans find it very difficult or impossible to walk a
quarter mile. That's 6 percent of the population. Yet again, as the
saying has it ("The legs are first to go"), these numbers rise as people
age.
The sources for all this: "Summary Health Statistics for U.S. Adults,
National Health Interview Survey, 2002" (on the current numbers) --
available online as a PDF file -- and "Projections (2010-2020)" at the
Census Bureau's website.
Implications
The fact that over the next several years tens of millions of older
Americans will begin to have sensory and/or physical conditions is
significant for a number of reasons. While not a lot will actually have
disabilities, they will experience limitations. Accessibility issues will
be, for these people, no longer "someone else's problems" but rather "our
concern". Suddenly, they will have a personal interest in many of the
same things we do.
And it's well-known that seniors vote at a much higher rate than do
people who are younger.
It all adds up to a steadily growing presence.
To appreciate the power of this presence, think back to the history of
the baby boom generation. In the 1950s, these people -- all by themselves
-- created what we later learned to recognize as the market for
children's products. It started with Davy Crocket coonskin caps, and then
went on to the Mouseketeeers, and hula hoops. Later, when the boomers
became teens and young adults, they gave us rock-n-roll, Woodstock, and
the anti-war movement protesting American involvement in Vietnam. This
same generation went on to change the norms of the workplace, as tens of
millions of women entered the work force. Those are the kinds of social
upheavals that occur when you have a "pig in a python" 76-million-strong
cohort moving through different age spans.
What's different now is that, for the first time, this huge social force
is about to boost the disability movement. Our challenge is to recognize
their emerging needs and interests, and to align those with ours.
Telling the Story
With numbers this large, the story changes. Especially with respect to
hearing, vision, and mobility, issues of accessibility become general,
rather than special, interests.
Our job is going to be to convince the mass media of this. The statistics
above will help. Then, working with editors and reporters, we need to
point out the needs those of us with disabilities share with baby boomers
who have health conditions that fall short of being disabilities. Writers
among us need to be submitting stories to mass media outlets, tolerating
as we do the inevitable rejection slips. Our goal: as boomers watch
television, surf the Web, read newspapers and magazines, listen to the
radio, they are made aware of those shared concerns.
Think, for example, about cell phones. An astonishing 160 million
Americans now use wireless phones every day. The phones are so small
already that older people have difficulty with the controls and even with
the buttons. Much easier is to just say the number and have the phone
dial it. This feature is available on a couple of cell phones. We need to
make ita regular feature. Or think about GPS. Today, if you want global
positioning satellite location service on your cell phone, it's only
available on a few models, and then at some $20 extra a month. It should
be standard and free. Many people with disabilities would be much safer
if their 9-1-1 calls automatically told dispatchers where they were.
Medicare's durable medical equipment policies and Medicaid's personal
care attendant policies are about to affect millions more people. This
means that our complaints are going to be echoed by a lot more people --
and finally get policy makers' attention -- if and only if aging baby
boomers become aware of our issues and align themselves with us to
advocate for change. Same with MiCASSA. Boomers with health-care needs
will want to continue living in the community, and if made aware of
federal and state Medicaid bias in favor of institutional care, will join
us in protesting it.
Yeah, but....
Won't boomers resist identifying with people having life-long
disabilities? Yes, many will.
We can anticipate that most will resist acknowledging their new
limitations of activity, hearing, and speech. As my parents and in-laws
began losing their hearing, their first reaction was not to identify with
me. They insisted, for long periods of time, that they were not in fact
losing their hearing. Rather, they thought the rest of us were whispering
or mumbling. Even after they reluctantly acknowledged impairment of
hearing, they still held back from turning on TV captions. It took time.
Baby boomers who begin to sustain limitations of vision and mobility,
too, will not immediately begin to identify with "the blind" and
"wheelchair users". We need to be patient and understanding. After all,
these people have five or six or seven decades of life history during
which they were "temporarily able bodied" -- understandably, their
self-concept is one of a person who does not have a disability.
This doesn't bother me. I don't think we actually need to alter their
sense of self. Rather, the focus, I think, should be on the issues. We
need to get them to buy into the idea that accessibility in all its many
variations is now a practical and important issue for them. Even if they
insist "I'm not disabled!" they can still say "This is wrong!" or "This
is dumb!" or "This is unnecessary" or words to that effect as they
experience the many, often small, ways in which society places barriers
in their paths.
That is, we need to get them to care about, talk about, and act about the
same issues we do. Two things happen when they do. First, politics
change. Elected officials everywhere will pick up on the fact that their
constituents care a lot more about hearing, vision and mobility than they
once did. Second, the marketplace changes. Companies that make consumer
products, transportation systems, buildings, and arenas, and the
designers and architects they hire will become a lot more interested in
the A117.1 accessibility standards (for buildings), W3C/WAI guidelines
(for Web sites and pages), and other specifications. All of this
eventually leads to a higher quality of life for Americans with
disabilities -- all without boomers changing their self-concepts.
Strange Bedfellows?
A related need: Forging alliances with senior groups and using mass media
to create large communities of interest.
I'm partial to the Gray Panthers myself, but AARP has recently shown a
lot more interest than it used to in issues that matter to us. It also
means bringing our older siblings and parents with us to City Hall, to
visibly show that we are making common cause.
The baby boom generation is so humongous that reaching out one-on-one, or
retail, won't suffice. We need mass-market, or wholesale, outreach. For
Web-based outlets like The Rag, this reaching out means registering with
Google, Yahoo! and other search engines. It even means purchasing paid
advertising at those search sites. We are trying to connect to potential
brothers and sisters who are just awakening to the fact that they have
interests in common with ours.
For the deaf, it means linking up more with the hard of hearing. The
National Association of the Deaf is already doing this. For the blind,
similarly, it means reaching out much more to people who have low vision.
We need to make the less-severe versions of our disabilities prominent in
the American mind. That's where the numbers will be.
And, as the 2006 midterm election season gets underway, it means becoming
active in general, and not just special, interest political events. It's
a matter of thinking a bit differently, then acting differently.
Advocates should begin citing a new mantra: "There are tens of millions
of aging boomers. In time, the size of our interest group will double,
and then double again." We need to begin acting like it.
Will all this be worth it? I certainly think so. As a member of the baby
boom generation myself, I have a lifetime of experience telling me that
the 76 million baby boomers have changed society at every turn since the
late 1940s. They will change it again, this time carrying us along.
Frank Bowe, often called "The Father of Section 504" and "An Advocate's
Advocate," has a 40-year history of activism. He led the 1977 nationwide
protest that gave us section 504, worked with Justin Dart and others on
ADA, and helped to make TV captioning available everywhere. A professor
at Long Island's Hofstra University, his newest book is Making Inclusion
Work (Prentice Hall, 2005).
Posted August 30, 2005
EDF brings to life Ad supporting the Disabled
http://www.edf.fr/html/pubtv_2005/diversites/edf_en.html
Posted August 30, 2005
“ASAGGC BECOMES OFFICIAL BENEFICIARY OF DARE TO SHARE FOR 2005”
DARE TO SHARE
“Kids are our future”
Dare to Share is a fund raising organization dedicated to helping children with special needs from all walks of life. DTS supports individuals and organizations that focus on the well being of these children. The DTS Board meets annually to evaluate the various candidates to receive DTS funding. All potential recipients are subjected to rigorous screening before qualifying as a beneficiary.
This year’s major fundraiser for DTS is “The Black and White Gala” sponsored and produced by Event Acuity, Inc in cooperation with Jezebel Magazine. The event will be held at The Inn at Chateau Elan in Braselton, GA on Saturday, September 10, 2005 in the Hotel’s Debussy Ballroom. The festivities begin with a cocktail reception at 6 PM followed by an exquisite dinner and dance from 7 PM – 1 AM. The excitement will include a Live Auction, Fashion Show, and Raffle for a “one of a kind” Panoz Experanta Sports Car valued at over $95,000. Special guests include actors Patrick Dempsey (Sweet Home Alabama), Ivan Sergie (Crossing Jordan) and Deangelo Hall of the Atlanta Falcons. Anyone interested in attending to Gala can obtain tickets through empiretickets.com or by calling 404 467-4132.
We are pleased to announce that The Autism Society of America-Greater Georgia Chapter is an official beneficiary of Dare To Share for 2005. The official list of beneficiaries for 2005 are:
St Jude’s Children’s Hospital
Autism Society of America-Greater Georgia Chapter
Hemophilia of Georgia
The Tree House
Challenged Child and Friends
Boy’s & Girl’s Clubof Barrow County
Boy’s & Girl’s Club of Jackson County
Gwinnett Children’s Shelter
Dare To Share, Inc. is a 501 (c) (3) non-profit organization recognized by the IRS. For more information about DTS please visit their website at www.dare-to-share.org
“ASAGGC BECOMES OFFICIAL BENEFICIARY OF DARE TO SHARE FOR 2005”
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Posted August 09, 2005
*Family Wins $460,000 Autism Lawsuit Against West Virginia Schools
http://tinyurl.com/b9dyx
AP - A Hampshire County mother whose autistic daughter was restrained at preschool in a device that resembled "a miniature electric chair" has won a $460,000 verdict against the school system.
Cynthia Kilmer of Augusta filed the lawsuit in Kanawha County Circuit Court in 2000 on behalf of her daughter, Christina, who was 4 years old in 1998 when she was injured at Romney Elementary School.
Kilmer said her daughter came home from school with bruises on her calves, chest, wrists and legs and experienced intense behavior changes and wet her pants at the mention of the word teacher or school. She also began having uncontrollable tantrums and sleeplessness. A doctor later diagnosed post traumatic stress syndrome. The problems started after the child was restrained in a wooden chair with a high back and leather straps and buckles across the chest, arms, wrists, legs and ankles, similar to those once used in mental institutions.
"I'll never forget the day I saw that chair and knew I sent my daughter to a torture chamber every day,” Kilmer said Friday. "I have a lot of guilt because I sent my baby to school and trusted these people. Her behavior kept changing and I knew something was not right that was above and beyond autism.
"The school said she was going through an adjustment. Then they said it was the home environment because I'm a lesbian.”
A jury in June found the Hampshire County Board of Education negligently trained and supervised teacher Delores Delawder, aide Loretta Hott and speech therapist Pam Skiff. The jury awarded Christina Kilmer $400,000 for mental pain and suffering and $60,000 in lost wages to Cynthia Kilmer. The award is one of the largest in Kanawha County this year.
"We won but in a sense we didn't win because the teachers where not held responsible,” Kilmer said. "They morally and ethically knew what they did was wrong. You don't strap a child in a chair because she won't sit still.”
The lawsuit also named former superintendent Gerald Mathias, former Romney Elementary School Principal Stephen Keener, director of special education Paula O'Brien, former state superintendent Hank Marockie and state coordinator Sandra McQuain. All five were later dropped as defendants, according to court documents.
O'Brien, who is now Hampshire County's acting superintendent, said Friday she could not comment on the verdict but there likely would be an appeal. She referred questions to the board's attorney, Jan Fox, who did not immediately return a telephone message Friday seeking comment.
The jury's decision mirrors a $339,000 verdict awarded in 1999 in Kanawha County Circuit Court to Ron and Kathy Spaulding, whose autistic son was strapped to his chair by teachers at Williamson Elementary and later at Lenore Elementary from 1991 until 1993.
Charleston lawyers Mary Downey and Beverly Selby represented both families in court.
Kilmer's award also matches a $460,000 settlement Anne Gentry reached with the Kanawha County School Board in April 2004, for her 16-year-old autistic son, Logan. He attended Sissonville High School until behavior and other problems surfaced after students goaded him into licking bird droppings off a car window.
Autism is a neurological spectrum disorder that affects social interaction and communication. Its symptoms and characteristics vary from mild to severe.
Christina was home-schooled until last year when she told her mother one day she wanted to go to school with her twin brother, Charlie, who attended Augusta Elementary.
"Augusta Elementary has been wonderful,” Kilmer said. "Her worse day today is not nearly as bad as an easy day was seven years ago.”
Still, Kilmer worries about regression this fall when Christina is expected to move to Romney Middle School. She also worries that without written policies, other children will be harmed.
Neither the state Board of Education nor the Hampshire County Board of Education has adopted a policy governing the use of restraints despite the large verdicts and settlement.
"More parents need to be aware of what's going on with their children,” Kilmer said. "Don't always listen to the teacher if your gut tells you something isn't right. This has got to stop. Restraining children is not right."
Posted March 31, 2005
March 31, 2005
We mourn the death of Terri Schiavo.
For many of us in the disability community this event underscores the
devaluing of the lives of people with disabilities, especially people with
significant disabilities.
With radical reforms in store for Medicaid, Medicare and Social Security we
cannot help but remember that the cheapest way to serve people with
disabilities is to kill us.
The double standards and inconsistent positions of both the right and the
left leave many of us feeling vulnerable at best.
Disabled should not mean disposable.
Nat Hentoff recently wrote in the Village Voice:
".a 41-year old woman, who has committed no crime, will die of dehydration
and starvation in the longest public execution in American history."
That this event was allowed to take place is deeply disturbing to us.
That some would sweep it away as nobody's business is equally disturbing.
Many immoral decisions have been made by the Courts. The Dred Scott
decision and Buck vs. Bell are just two historic Supreme Court examples of
judicial indifference to the rights of minorities.
Terri's death will hopefully bring to light the discrimination all people
with disabilities experience and the need for society to
address solutions so this never happens again.
Disabled people and Proud of it!
The ADAPT Community
http://www.adapt.org
Posted March 23, 2005
Terri Schiavo News-http://terrisfight.org/
Posted Oct. 14,2004
Response from Timothy Shriver, Chairman and CEO of Special Olympics
http://releases.usnewswire.com/GetRelease.asp?id=38079
We at Special Olympics are astounded and appalled by a political
flyer being distributed in Tennessee, showing the head of President
Bush superimposed on the body of a Special Olympics athlete,
saying, "Even if you win, you're still retarded."
We see this communication as an egregious, gratuitous insult to our
almost 2 million athletes in over 150 countries around the world and
a stunning affront to the more than 200 million people in the world
who have intellectual disabilities.
We cringe at the thought that any one of these capable and courageous
athletes would ever have to endure the agony, embarrassment, pain
and suffering that this flyer would certainly cause.
We hope that the person or persons responsible for this outrageous
political advertisement would come forward, identify themselves, and
explain to the people of Tennessee and everywhere else why they
would choose to denigrate the spirit, courage, and accomplishments
of the Special Olympics athletes.
Sadly, this type of ignorance and bigotry is not uncommon. Comedians
in the United States regularly mock people with intellectual disabilities;
a common playground taunt even today is "retard"; people with
intellectual disability remain the last to be respected or included in
our schools, health care institutions, and society at large.
Our commitment in this political season and in every other is to reverse
this ignorance and bigotry and to replace them with the stunning
realization that many people with intellectual disability are, in fact,
among the most gifted within our communities. Their valuable skills
for promoting acceptance and understanding are most desperately
needed in the political process and in the world today.
There is no reasonable and legitimate defense of this hateful material.
We would expect those responsible to make an abject public apology
and a sincere, determined effort to clear the public domain of this
offensive material.
Posted October 11, 2004
October 11, 2004
(Springfield, NJ) On behalf of the entire Board of Directors and staff of the Christopher Reeve Paralysis Foundation, we are deeply saddened and shocked by the sudden death of our Chairman, Christopher Reeve, said Lewis.
Mr. Reeve passed away yesterday of heart failure. He was 52 years old. Mr. Reeve fell into a coma after going into cardiac arrest while at home. Reeve was being treated for a pressure wound that he developed, a common complication for people living with paralysis. In the past week, the wound had become severely infected, resulting in a serious systemic infection.
Mr. Reeve's death was not a direct result of his spinal cord injury, but an example of how secondary complications can have fatal consequences for people living with paralysis.
Christopher was a hero to many people, yet he always said it was the ordinary people living with disability who were truly extraordinary, said Lewis. His memory will serve as inspiration for the work of the Christopher Reeve Paralysis Foundation and we will continue in his honor to be steadfast in our goal of finding treatments and cures for paralysis.
The Foundation extends condolences to the entire Reeve Family. Our thoughts are with all those who mourn in the passing of our Chairman. He will be missed for his life, his work, his passion and his ceaseless courage in the face of adversity that brought hope to millions around the world, added Lewis.
For those who care to do so, the family has requested that donations be made in his honor to the Foundation. Cards may be sent to the family in care of the Foundation at 500 Morris Avenue, Springfield, New Jersey 07081.
For updated information, please visit http://www.ChristopherReeve.org .
All media inquires should be directed to:
Maggie Goldberg
Vice President of Communications
Christopher Reeve Paralysis Foundation
800-225-0292x115
MGoldberg@crpf.org
Wesley Combs
President
Witeck Combs Communications
202-887-0500 ext. 14
wcombs@witeckcombs.com
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