Pediatricians Recommending Autism Screenings before age two

There is a new movement in the pediatric field for earlier screening for autism.

A new Web site debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. That Web site was profiled on Good Morning America last week, and is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.http://www.autismspeaks.org/

Partnering with Your Child's School: A Guide for Parents

The HSC Foundation, in partnership with George Washington
University's Graduate School of Education and Human Development,
offers a new resource for parents. The booklet available online
and in hard copy in English and in Spanish, is designed to help
parents of children who have been diagnosed with health or mental
health care needs to learn about available resources and to
develop a partnership with their children's schools. The booklet's
content has been reviewed and validated by groups of parents,
youth, and educators and is produced in partnership with the
Council for Exceptional Children and the National Association of
State Directors of Special Education.

For more information, go to:
http://www.hscfoundation.org/whatwedo/familysupports.php

Hapy Columbus Day!

Today is a Federal holiday-- with selected state, local offices and schools closed. You may want to debate the contributions of Christopher Columbus:

- he was trying to find a route to China, and thought he got to India
- modern history states didn't prove the world was flat-- that was the current thinking of the time
- he spread small pox to Native American tribes
- he owned slaves
- he died broke.

He did:

- expanded trade and the influence of Christianity
- made Europe aware there was another continent
- exported foods of the Americans (hot peppers, tomatoes) around the world.

Enjoy your day!

The 911 Modernization & Public Safety Act of 2007

This is important legislation, so that people who are deaf or hard of hearing can use IM and online technology to get 9-1-1 information. Let your Congressman know about this, and that they need to support it!
--------------------------


Emergency Issues: Disability Coalition supports H.R. 3403, The 911
Modernization and Public Safety Act of 2007

The Coalition of Organizations for Accessible Technology (COAT),
comprising over 120 national and local disability groups, sent a
letter of support to the Congressional sponsors of H.R. 3403, "The
911 Modernization and Public Safety Act of 2007." This
legislation, if enacted, will help ensure that people with
disabilities have equal access to 9-1-1 emergency public safety
answering points ("911 centers") as these centers start using
Internet technologies. For instance, barriers must be identified
and solutions implemented for devices and services that connect to
911 centers when using Internet Protocol (IP). The bill would
require also that telecommunications relay service providers must
be involved in the development of the new national 9-1-1 plan and
must have the same protections from liability and
nondiscriminatory access to 9-1-1 centers that currently protect
wireline and wireless telephone carriers.

The Disability Coalition letter can be found on the AAPD website
at http://www.aapd.com/News/tech/070921coat.htm

Action Step: To show support for this effort, please send a letter
to your Congressperson urging them to vote for H.R. 3403 because
of these important disability provisions.

More on the COAT coalition at http://www.coataccess.org

SOURCE: AAPD
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Online Survey to Improve Employment Program for Persons with
Significant Disabilities

NISH is asking our community to participate in its online survey
to obtain feedback on the awareness and familiarity of, as well as
preference for the AbilityOne (formerly Javits-Wagner-O'Day)
Program within the disability community. NISH is a national,
nonprofit agency that provides employment opportunities for people
who are blind or have other severe disabilities by procuring
Federal contracts for goods and services.

NISH encourages you to respond to this brief survey that takes
less than 8-10 minutes, at:
www.surveymonkey.com/s.aspx?sm=xZB5seGvfyekj1FXwNY1LA_3d_3d

The intent of the survey is to help NISH modernize the AbilityOne
program. In addition, NISH will use this feedback to help improve
customer service to the nearly 48,000 individuals with severe
disabilities working in the AbilityOne Program. An alternative
copy of the survey is also available in MS Word format; please
contact Rachel Kelly at (703) 584-3938 or rkelly@... for the
MS Word version of the survey.

NISH contact: Larissa Timmerberg, Director, Workforce Development
at (571) 226-4521 or ltimmerberg@...

Further information at NISH website at http://www.nish.org

SOURCE: AAPD

ADA Restoration Hearing Scheduled in House Judiciary Committee

ADA Restoration Hearing Scheduled in House Judiciary Committee

It's confirmed - the first hearing on ADA Restoration is scheduled
for NEXT THURSDAY, October 4 in the House Judiciary Committee.

If you're available, please plan on packing the room to show your
support! Alternately, the Committee's website indicates that there
will be a live webcast during the hearing into which you can
"tune" from wherever you are, if you're unable to come in person.

Here are the details from the House Judiciary Committee's website:

Thursday 10/04/2007
10:00 AM
2141 Rayburn House Office Building
Subcommittee on the Constitution, Civil
Rights, and Civil Liberties
Hearing on H.R. 3195, the "ADA Restoration Act of 2007"

*Information about the webcast is also available on the House
Judiciary Committee website at:
http://judiciary.house.gov/schedule.aspx
(click on October 4).

To read more about ADA Restoration, visit the ADA Restoration blog
at: www.adarestoration.blogspot.com

The Upside of Autism

There is a good interview on NPR Speaking of Faith, that talks about the autism spectrum. The two parents talk about the family autistic traits, and how these traits lend themselves to specific career choices (i.e. science, computers, research, academia). Jennifer Elder and Paul Collins have a nice discussion on their child, and their insights on the autism spectrum.

I'm Back!

For those you read this blog, sorry I have been away! But life has a habit of getting in the way of reflection, gardening and blogging! The past two months I have:

-settled into a job, managing a free clinic;
-teaching as a new adjunct instructor in public policy;
-continuing as a senior adjunct instructor in creative expression, and
-doing some consulting work as a computer instructor.

Whew!! So, this week I am back to one job.

Time for gardening, contemplation and online advocacy. So, in the words of James Brown

I'm Back!

Misunderstood Minds

PBS Documentary on Learning Disabilities "Misunderstood Minds"

For one in five students, learning is an exhausting and
frustrating struggle. Often mistakenly called "lazy" or "stupid"
by their teachers, classmates, and even their families, these
children may be suffering from debilitating learning problems. If
not addressed, the problems can have a devastating impact on the
students' self-esteem and future academic and social success.

The PBS documentary "Misunderstood Minds" shines a spotlight on
this painful subject, following the stories of five families as,
together with experts, they try to solve the mysteries of their
children's learning difficulties. Produced and directed by Michael
Kirk, this 90-minute special shows the children's problems in a
new light, and serves as a platform to open a nationwide dialogue
on how best to manage young, vulnerable, and misunderstood minds.

Parents, teachers, and students looking for the scientific
explanations behind learning differences and strategies to aid
success in school can find both on the companion website for
"Misunderstood Minds." The site includes profiles of the students
in the documentary, as well as sections on Attention, Reading,
Writing, and Mathematics. Interactive activities, called
Experience Firsthand, are designed to give site visitors a sense
of what it may be like for a student struggling with a basic
skill.

Autism Research in the UK, court case in the US

Here is a story on a court case pending, identifying the cause of a child's autism on vaccines.

http://apnews.myway.com/article/20070612/D8PMUNGO0.html


There is also a story on British research examining the protein imbalance in children with autism.

Interesting....

http://news.bbc.co.uk/2/hi/health/6221064.stm

BOYS WITH AUTISM, RELATED DISORDERS, HAVE HIGH LEVELS OF GROWTH HORMONES

New developments in the ongoing mysteries of autism, and its seeming prevalence in boys....
-----------------

U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute of Child Health and Human Development (NICHD)

FOR IMMEDIATE RELEASE: Friday, June 22, 2007

Boys with autism and autism spectrum disorder had higher levels of
hormones involved with growth in comparison to boys who do not have
autism, reported researchers from the National Institutes of Health, the
Centers for Disease Control and Prevention, the Cincinnati Children's
Hospital and the University Of Cincinnati College Of Medicine.

The researchers believe that the higher hormone levels might explain the
greater head circumference seen in many children with autism. Earlier
studies had reported that many children with autism have very rapid head
growth in early life, leading to a proportionately larger head
circumference than children who do not have autism.

The researchers found that, in addition to a larger head circumference,
the boys with autism and autism spectrum disorder who took part in the
current study were heavier than boys without these conditions.

"The study authors have uncovered a promising new lead in the quest to
understand autism," said Duane Alexander, M.D., Director of the National
Institute of Child Health and Human Development, the NIH institute that
funded the study. "Future research will determine whether the higher
hormone levels the researchers observed are related to abnormal head
growth as well as to other features of autism."

Autism is a complex developmental disorder that includes problems with
social interaction and communication. The term autism spectrum disorder
(ASD) refers to individuals who have a less severe form of autism.

The study was published on line in "Clinical Endocrinology".

The researchers compared the height, weight, head circumference and levels
of growth-related hormones to growth and maturation in 71 boys with autism
and with ASD to a group of 59 boys who did not have these conditions.

The investigators found that the boys with autism had higher levels of two
hormones that directly regulate growth (insulin-like growth factors 1 and
2). These growth-related hormones stimulate cellular growth. The
researchers did not measure the boys' levels of human growth hormone,
which for technical reasons is difficult to evaluate.

The boys with autism also had higher levels of other hormones related to
growth, such as insulin-like growth factor binding protein and growth
hormone binding protein.

In addition to greater head circumference, the boys with autism and those
with autism spectrum disorders weighed more and had a higher body mass
index (BMI). BMI is a ratio of a person's weight and height. A higher
BMI often indicates that a person is overweight or obese. The boys'
higher BMI may be related to their higher hormone levels, said the study's
principal investigator, NICHD's James L. Mills, M.D., a senior
investigator in the Division of Epidemiology, Statistics and Prevention
Research's Epidemiology Branch. Dr. Mills and his coworkers also found
that there was no difference in height between the two groups of boys.

The levels of growth-related hormones were significantly higher in the
boys with autism even after the researchers compensated for the fact that
higher levels of these hormones would be expected in children with a
greater BMI.

"The higher growth-related hormone levels are not a result of the boys
with autism simply being heavier," said Dr. Mills.

While it has long been noted that many children with autism have a larger
head circumference than other children, few studies have investigated
whether these children are also taller and heavier, Dr. Mills added.

Researchers analyzed medical records and blood samples from 71 boys
diagnosed with autism and ASD who were patients at Cincinnati Children's
Hospital Medical Center from March 2002 to February 2004. The researchers
compared the information on the boys with autism and autism spectrum
disorders to other boys treated for other conditions at the hospital and
who do not have autism. Children with conditions that may have affected
their growth -- such as being born severely premature, long-term illness,
or the genetic condition Fragile X were not included in the study. Girls
are much less likely to develop autism than are boys, and the researchers
were unable to recruit a sufficient number of girls with autism to
participate in the study.

Dr. Mills explained that the bone age of the boys with autism -- the bone
development assessed by taking X-rays and comparing the size and shape of
the bones to similarly-aged children -- were not more advanced in the
group of boys with autism. For this reason, Dr. Mills and his coworkers
ruled out the possibility that they were merely maturing more rapidly than
were the other boys.

Dr. Mills said that future studies could investigate whether the higher
levels of growth hormones seen in children with autism could be directly
related to the development of the condition itself.

The NICHD sponsors research on development, before and after birth;
maternal, child, and family health; reproductive biology and population
issues; and medical rehabilitation.

The National Institutes of Health (NIH) -- The Nation's Medical Research
Agency -- includes 27 Institutes and Centers and is a component of the U.
S. Department of Health and Human Services. It is the primary federal
agency for conducting and supporting basic, clinical, and translational
medical research, and it investigates the causes, treatments, and cures
for both common and rare diseases. For more information about NIH and its
programs, visit <http://www.nih.gov>.

Public Hearings on Proposed Rules for Part C of IDEA 2004

The Secretary of Education is proposing to make changes to theregulations for the Early Intervention Program for Infants andToddlers with Disabilities. The proposed regulations willimplement changes made to the Individuals with Disabilities Education Act by the Individuals with Disabilities EducationImprovement Act of 2004. You may comment on these regulations by accessing Regulations.gov. Comments must be received by July 23,2007. In addition, public meetings will be held as follows:

June 4, 2007, 4:00 p.m. to 7:30 p.m., Portland, Oregon
June 6, 2007, 4:00 p.m. to 7:30 p.m., Oklahoma City, Oklahoma
June 11, 2007, 4:00 p.m. to 7:30 p.m., Indianapolis, Indiana
June 14, 2007, 3:00 p.m. to 7:30 p.m., Washington, DC

SOURCE: U.S. Department of Education, Office of Special Educationand Rehabilitative Services

Emilio Gonzales- Epilogue

Little Emilio has passed, in the loving arms of his mother-- as it should be. If society can learn anything from this infant's death, it is the importance of the right to value life, all life, and leave as much as we can about end of life decisions in God's hands.
----------------
Toddler at center of Texas legal fight dies

The Associated Press
AUSTIN -- A toddler whose terminal illness started a contentious legal and ethical debate over who decides when life-sustaining treatment should cease has died. Nineteen-month-old Emilio Gonzales died in his mother's arms Saturday night at Children's Hospital of Austin, said family attorney Jerri Ward. He had been on a respirator since December."God chose to take Emilio at this time," Ward said.The family has not requested an autopsy, said Michele Gonzalez, a spokeswoman for the Seton Family of Hospitals. Children's Hospital physicians will make a final determination on the cause of death by the middle of the week, she said.

Emilio was believed to have Leigh's disease, which destroys brain functions. Doctors wanted to invoke a state law allowing them to stop life support for patients deemed medically futile after a 10-day notice. Emilio's mother, Catarina Gonzales of Lockhart, said she knew that her son would die but wanted doctors to continue care, pointing out that he smiled and turned his head when he heard voices. In April, a judge agreed to temporarily block the hospital's move to end life support.

In legal filings, Gonzales' attorney contended that the state law allowing doctors to overrule the treatment decisions of loved ones when conflicts arise is unconstitutional. A hearing had been set for May 30.The Senate approved legislation this month to give patients' families more time before ending life-sustaining treatment.

Cheryl Eckstein
Founder President
Compassionate Healthcare Network
(CHN)CHN is a not for profit organization, formed 1990. CHN - 11563 Bailey Cres., Surrey, B.C. V3V 2V4 Canada Phone - 604 582 3844 Visit us at / www.chninternational.com/default.html CHN is member of the World Federation of Doctors Who Respect Human Life (WFDWRHL) Dr. Karl Gunning, Pres..

Autism Update- Supreme Court Sides with Parental Rights in Schools

Supreme Court: Parents Don't Need Lawyer in Ed Cases
Monday, May 21, 2007
By Mark Sherman
The Associated Press
WASHINGTON, D.C. -

Parents need not hire a lawyer to sue publicschool districts over their children's special education needs,the Supreme Court ruled Monday.The decision came in the case of an autistic boy from Ohio, whose parents argued they were effectively denied access to the courts because they could not afford a lawyer.Federal law gives every child the right to a free appropriate public education, which in the case of special needs children sometimes means enrollment in a private facility.But most federal courts had concluded that parents who are not lawyers and who want to challenge decisions have to hire an attorney to represent them.

Justice Anthony Kennedy, writing for the court, said parents have legal rights under the Individuals With Disabilities in Education Act, the main federal special education law."They are, as a result, entitled to prosecute IDEA claims on theirown behalf," Kennedy said. The court sided with Jeff and Sandee Winkelman and their son,Jacob, in their fight against the Parma, Ohio school district.The Winkelmans can't afford a lawyer or the cost of private schooling for Jacob. Neither parent is a lawyer.The parents objected to the Parma schools' plan to educate Jacobat a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes in educating autistic children.

The Winkelmans have spent about $30,000 in legal fees since firstcontesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulingsand written her own filings.It is unclear how many parents forgo lawsuits because they can'tafford them, although advocates for disabled children said incourt papers that most parents of disabled children lack the meansto hire a lawyer.

Parents unhappy with a district's plan can appeal the decision through an administrative process. If they remain dissatisfied, they can file a civil lawsuit on their child's behalf, federal courts have said. At that point, however, most courts have saidthe parents must hire a lawyer.Whether Jacob should have private schooling at public expense wasnot before the Supreme Court, only his parents' right to go into federal court without a lawyer.The 6th U.S. Circuit Court of Appeals had ruled in the school district's favor. Monday's ruling overturned that decision.The case number is Winkelman v. Parma City School District, 05-983.

Source: Washington Post
__________________________________________________________

Autism Update- Supreme Court Sides with Parental Rights in Schools

Some positive news on the parental school advocacy battlefront....
---------------
Supreme Court: Parents Don't Need Lawyer in Ed Cases
Monday, May 21, 2007
By Mark Sherman
The Associated Press
WASHINGTON, D.C. -

Parents need not hire a lawyer to sue public school districts over their children's special education needs, the Supreme Court ruled Monday.The decision came in the case of an autistic boy from Ohio, whose parents argued they were effectively denied access to the courts because they could not afford a lawyer. Federal law gives every child the right to a free appropriate public education, which in the case of special needs children sometimes means enrollment in a private facility. But most federal courts had concluded that parents who are not lawyers and who want to challenge decisions have to hire anattorney to represent them.

Justice Anthony Kennedy, writing for the court, said parents have legal rights under the Individuals With Disabilities in Education Act, the main federal special education law."They are, as a result, entitled to prosecute IDEA claims on theirown behalf," Kennedy said. The court sided with Jeff and Sandee Winkelman and their son, Jacob, in their fight against the Parma, Ohio school district. The Winkelmans can't afford a lawyer or the cost of private schooling for Jacob. Neither parent is a lawyer.

The parents objected to the Parma schools' plan to educate Jacob at a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes ineducating autistic children. The Winkelmans have spent about $30,000 in legal fees since first contesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulings and written her own filings. It is unclear how many parents forgo lawsuits because they can't afford them, although advocates for disabled children said in court papers that most parents of disabled children lack the means to hire a lawyer.

Parents unhappy with a district's plan can appeal the decision through an administrative process. If they remain dissatisfied, they can file a civil lawsuit on their child's behalf, federal courts have said. At that point, however, most courts have said the parents must hire a lawyer.Whether Jacob should have private schooling at public expense was not before the Supreme Court, only his parents' right to go intofederal court without a lawyer.The 6th U.S. Circuit Court of Appeals had ruled in the school district's favor. Monday's ruling overturned that decision.

The case number is Winkelman v. Parma City School District, 05-983.
Source: Washington Post
__________________________________________________________

Ashley X Update

The Federal Government has finally weighed in on the Ashley Treatment issue. Read on and see what you think....
--------------------------
HHS Response Regarding the "Ashley Treatment"

Dear Readers,

The letter that follows is from the U.S. Department of Health
and Human Services and comes in response to a letter of concern
written by Kelly Buckland and John Lancaster of the National
Council on Independent Living regarding the growth attenuation
treatment, breast bud removal, and hysterectomy of "Ashley" a
nine year-old girl from Washington.

To read more about Ashley and the so-called "Ashley Treatment,"
visit AAPD's website at:
http://www.aapd.com/News/bioethics/indexbioethics.php
________________________________________________________________

Department of Health & Human Services

May 30, 2007

Kelly Buckland, President
John Lancaster, Executive Director
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, D.C. 20036

Dear Mr. Buckland and Mr. Lancaster:

Administration for Children and Families
Office of the Assistant Secretary, Suite 600
370 L'Enfant Promenade, S.W.
Washington, D.C. 20447

Secretary Leavitt has asked me to thank you for your letter
expressing concern about the disabled nine-year-old child known as
Ashley X. We agree that the well-being of children with
disabilities is of paramount importance.

Secretary Leavitt uses a 500-Day Plan as a management tool to
guide our Department's energies in fulfilling the President's
vision of a healthier and more hopeful America. In that plan, the
Secretary has a section called "Protect Life, Family, and Human
Dignity," which includes priorities that "Children are protected
from abuse and neglect" and "Seniors and persons with disabilities
are cared for with dignity and respect." Children with
developmental disabilities, including Ashley, are human beings
with inherent human dignity, and they are due all the rights and
respect that come with that status.

That is why the Department of Health and Human Services, through
the Administration on Developmental Disabilities within the
Administration for Children and Families, funds 57 protection and
advocacy (P&A) systems in the states and territories to protect
the civil and human rights of individuals with developmental
disabilities. The Washington Protection and Advocacy System opened
an investigation in January 2007 into the "Ashley Treatment"
interventions and the role of Seattle's Children's Hospital. On
Tuesday, May 8, 2007, the P&A released the findings of that
investigation. You may view the findings and entire report on the
Washington P&A website:
www.disabilityrightswa.org/news-1/ashley-treatment-investigation

I hope this information is helpful to you. Please call me if I can
be of further assistance.

Sincerely,

Daniel C. Schneider
Acting Assistant Secretary for Children and Families

Source: U.S. Department of Health and Human Services
________________________________________________________________

For more news issues, see:
http://www.aapd.com/docs/news.php


--------------------------

Margaret Mead once said that it only takes a few people to change the world. That is so true, today and everyday. It is applicable in this situation, as a few diligent disability advocates have been following this story, investigating the legality of the situation, and have put a few people's feel to the fire.

Maybe the next time someone gets an idea like 'the Ashley Treatment' they will hestitate, and think twice...

---------------------------

The Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW), opened an investigation in January 2007 into the "Ashley Treatment" interventions and the role of Seattle's Children's Hospital. Today, they released their findings of that investigation.

The view the full report, complete with appendix items, please visit our website www.DisabilityRightsWA.org .

You should know:

1. Children's Hospital violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment " which resulted in the violation of Ashley's constitutional and common law rights;

2. The Hospital has acknowledged the violation and accepted full responsibility;

3. The Hospital has entered into an enforceable, written five (5) year agreement with WPAS to take corrective action and other proactive steps; and

4, We have included a list of next steps in the Executive Summary that we hope will be a part of a nationwide collaborative effort of the disability community that will result in Ashley being the last person to receive "treatment" named for her.

Seattle Children's Hospital acknowledged the following in our five (5) year, enforceable agreement:

"Children’s has received and reviewed the WPAS report on Ashley and the treatment she received. In general, Children’s accepts the WPAS report. Specifically, Children’s agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."

Some of you may think having a court order is a procedural matter easily overcome. That is not the case. We encourage you to carefully read the legal requirements section of our report to gain a full understanding of this critical safeguard of the rights of children for whom this treatment may be proposed.

If you are wondering about the applicable law in your state the first appendix section includes contacts from many states who have agreed to share their knowledge of the law in their states.

Let us know if you have any questions.

Mark Stroh, Executive Director
Washington Protection & Advocacy System*
315 - 5th Ave South, Suite 850
Seattle, WA 98104
mstroh@wpas-rights.org
ph: (206) 324-1521 / 800-562-2702
tty: (206) 957-0728
fax: (206) 957-0729

Ashley Hearing & Emilio Gonzales Decision- 9am tomorrow May 8th

Below, you will find several important updates, including events occurring TOMORROW, Tuesday, May 8th, regarding both Emilio Gonzales in Austin, TX and Ashley X in Seattle, WA. The first update and call to action is in reference to a 9am hearing for Emilio that takes place tomorrow morning. The second is in regard to a report due to be released tomorrow by the Washington Protection and Advocacy System that reveals how the Seattle Childrens Hospital broke the law when it performed Ashleys hysterectomy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The following update and call to action comes to AAPD from Bob Kafka (Not Dead Yet of Texas, ADAPT
Advocates: The life and death struggle of Emilio is now in the hands of the Court.

There will be a hearing on Tuesday, May 8th at 9am, CourtHouse, Room 201 (Between 11th and 12th St just west of Gualadupe) Austin, Texas. The legal issues are complex but it is believed if Emilio had a tracheotomy he could leave the hospital and be with his mother and die in a more dignified setting. If you are on a respirator or your child is, please come to the Court House and show that living on a respirator in the community is possible.

If you support the rights of people with significant disabilities please attend this hearing. This is a human and disability rights issue. Doctors should not be able to override our expressed wishes. Ironically the Catholic Church (Sisters of Charity run the hospital) and the Austin Bishop are supporting the killing of Emiliio. Orwellian speak has made them describe treatment of Emilio as "prolonging dying" rather than what it is "infanticide."Protecting the zygote seems more important than protection of the life of a 17 month child. Doctors are not infallible and should not play _ _ _ !

Please come to the Court House on Tuesday and support Emilio.
SOURCE: NOT DEAD YET of Texas ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The following update comes to AAPD from Amber Smock of Feminist Response in Disability Activism (FRIDA)

Thanks to Steve Drake of Not Dead Yet, FRIDA has learned that the Washington Protection and Advocacy System found that Seattle Children's Hospital failed to secure a court order for Ashley X's hysterectomy. (Please read below for the full announcement.) The report will be released on Tuesday. FRIDA thanks the WPAS for their exposure of this systemic breakdown. We encourage anyone who may be in the area on Tuesday to go to Seattle Children's for the report release at 10 am PST to represent for our community.FRIDA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thursday, May 03, 2007

WPAS Finds Hospital That Performed "Ashley Treatment" Violated Law by Not Having Court Order Hospital Takes Full Responsibility and Implements New Safeguards

SEATTLE, WA - An investigative report released today by the Washington Protection and Advocacy System* (WPAS) about the much-publicized "Ashley Treatment" finds that Children's Hospital and Regional Medical Center, as a result of a communication breakdown, violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment" on a 6-year old with a developmental disability without a court order. This resulted in a violation of Ashley's constitutional and common law rights. Children's Hospital has acknowledged that Washington law requires a court order for the sterilization of a child with a developmental disability and has entered into an agreement with the Washington Protection and Advocacy System (WPAS) to take corrective action to assure that the sterilization of a child with a development disability does not happen again without a court order. Above and beyond the corrective action, Children's Hospital is taking additional steps to protect the rights of their patients with developmental disabilities.

WHAT: Release of WPAS' Investigation Report into "Ashley's Treatment" & Discussion of the Children's Hospital Response***also available to interview are disability advocates, parents of children with disabilities, and hospital officials***

WHO: David Carlson, WPAS Associate Director of Legal Advocacy;
Deborah A. Dorfman, WPAS Dir. of Legal Advocacy and Assoc.Executive Director;
Dr. David Fisher, Children's Hospital Medical Director;
Gail Lainhart-Rivas, Parent;
Corinna Lang Fale, SelfAdvocate;
and Curt Decker, Executive Director National DisabilityRights Network (NDRN) based in Washington, DC.

WHEN: 10:00 a.m. PST - Tuesday, May 8, 2007

WHERE: Auditorium, Seattle Children's Hospital and Regional Medical Center, 4800 Sand Point Way NE Seattle WA 98105
Park in Giraffe garage and check-in at Giraffe entrance
For the Main Campus directions, visit:www.seattlechildrens.org/home/about_childrens/maps_directions/

Washington Protection and Advocacy System (WPAS) is a private non-profit organization that protects the rights of people with disabilities statewide. The mission of WPAS is to advance the dignity, equality, and self-determination of people with disabilities. WPAS works to pursue justice on matters related to human and legal rights.

As part of a national trend with protection and advocacyagencies, WPAS is changing its name to Disability Rights Washington effective June 1, 2007.315 - Fifth Avenue South, Suite 850* Seattle, WA 98104tel: (206) 324-1521 * tty: (206) 957-0728 * fax: (206) 957-0729wpas@wpas-rights.org * www.wpas-rights.orgSource: FRIDA, Not Dead Yet

ADAPT Shuts down the American Hospital Association

On May 1st, 2007, two hundred activists hit the streets of Washington, D.C. The focual point of todays Washginton, D.C. tour was the American Hospital Association. This organization's practice of direct nursing home placement, without consumer assitance in returning to home, or knowing of community based service options perpetuates the instiuttuional bias of the medical profesison. this group of protesters fuilled the lobby of the building, seeking to talk to the the CEO. The group was able to have a meeting brokered by the Capitol Police. A promise of a meeting within thrity days was arranged, with the topic of discussion revamping the hospital discharge prosess, and the philosophy of it.

Before leaving, one of the Capitol police commended us for our work, being civil in our disobedience and shared his personal experience about a family member with a head injury. He wished us luck in our pursuit of a meeting, and stated that if they did not meet with us, he expects to see us back again next year.

Hurrah!

Disability Activists Arrested

The Rayburn House was the scene of disability power today, April 30, 2007, in Washignton DC. ADAPT, a disability civil rights group, was in full effect. The group was calling on the House of Representative to have hearings on the Community Choice Act. This bill has sponsors in the US Senate, but has received a tepid reception in the House. The Community Choice Act would fund home based, consumed directed care, as a viabile alternative to nursing home placement. This alternative would save millions of dollars, and improve the quality of life for people with disabilities stuck in nursing homes.

The House of Representative police offerred no dialogue or discussion-- three quick warnings, and they were arresting people in wheelchairs. Over one hundred people were taken into custody. (I found it interesting that they took more time to discuss using rubber gloves, in case of 'contact', than actual dialogue with the crowd or its representatives.)

The balance of the group-- about three hundred people- gathered in a park across from the detainment center, and cheered on those who were brave enough to stand up for freedom and be arrested. As the afternoon heated up, into the 80's, a small contingent braved the heat and humidity, to stand vigil.

The PD started to release group members at about 10:00pm, Supporters and well wishers were on hand to encourage and welcome them with cheers, whistles, and cold pizza! The last activists were released at 3:30pm...

Save Emilio Gonzales Petition

Judge Herman postponed the hearing on Emilio until May 8t . He will receive treatment at least until then.

Elizabeth GrahamDirector
Texas Right to Life
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"He could possibly be cared for at home if he has a tracheotomy," said Vitadamo, who added that the operation would take away the need for Emilio's respirator.
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There is a petition online to continue Emilio's stay of execution by the hospital. I encourage you to read it and sign on.

http://www.petitiononline.com/emilio16/petition.html
Sign the Petition:http://www.petitiononline.com/emilio16/petition-sign.html

Emilio Gonzales and the Implications to Catholic Hospital

The Emilio debate rages on, as the Catholic Church weighs in on its moral obligations versus its legal requirements....
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Medical guidance from the church
In Gonzales case, church teachings are interpreted differently

By Eileen E. Flynn
AMERICAN-STATESMAN STAFF
Sunday, April 15, 2007

The mother says it's murder. The doctors call it mercy. Each claims that Catholic teachings on end-of-life care support their positions.In the case of Emilio Gonzales, the 17-month-old boy with a terminal disease at Children's Hospital of Austin, the decision over whether to remove him from a respirator has been steeped in legal maneuverings and court rulings. But because both Emilio's mother, Catarina Gonzales, and the Seton Family of Hospitals rely on the Roman Catholic Church for guidance, theological questions on the boy's care have generated another layer of debate over Catholic doctrine that permits ending medical care for dying patients.

Gonzales brought her son to the Seton-run Children's Hospital with a collapsed lung on Dec. 27. Emilio was put on life support in the pediatric intensive care unit the next day, then doctors told her that Emilio suffered from a rare, incurable disorder that causes the central nervous system to break down. Since then Gonzales, doctors and hospital officials have clashed over how to care for Emilio, with Gonzales seeking more aggressive treatment and doctors recommending withdrawal of life support. In trying to weigh the sanctity of life against the desire for a dignified death, Bishop Gregory Aymond supports the doctors' decision."It is my responsibility as a shepherd to make sure we are respecting human life and that we are not in any way carelessly taking human life or not respecting the dignity of human life," he said.

Meanwhile, Gonzales has said that she's sought counsel from her Lockhart priest and believes that God will take her son when it's time. Her conscience tells her to keep fighting to keep Emilio alive until that time comes. And she's found support from organizations that say Catholic teaching backs her position, not the hospital's. The conflict is now before Travis County Probate Judge Guy Herman, who has scheduled a hearing for Thursday to decide whether to require the doctors to continue treating Emilio while his mother looks for another facility that will take him.

As medical technology evolves, the church continually reviews its position on medical ethics, striving to balance the Catholic view that life is sacred with the desire to provide dignity in natural death.In 1980, the Congregation for the Doctrine of the Faith, the Vatican department that oversees Catholic doctrine, released a declaration on euthanasia that said it's morally acceptable to discontinue extraordinary, or disproportionate, care when a patient's death is imminent. In his 1995 encyclical "The Gospel of Life," Pope John Paul II wrote that such a step was not equivalent to euthanasia or suicide, that "it rather expresses acceptance of the human condition in the face of death."The U.S. Conference of Catholic Bishops echoes those sentiments in its directives for health care services, the guidelines Seton's ethics committee used in its review. Abortion, euthanasia and assisted suicide clearly violate Catholic teaching, the document states, but the rules on withdrawing treatment reveal the complexities of weighing medical technology, family desires and what's best for the patient."The use of life-sustaining technology is judged in light of the Christian meaning of life, suffering, and death," the directives state. "Only in this way are two extremes avoided: on the one hand, an insistence on useless or burdensome technology even when a patient may legitimately wish to forgo it and, on the other hand, the withdrawal of technology with the intention of causing death."Determining when not to use available technology is the difficult part, said the Rev. Tadeusz Pacholczyk, a neuroscientist on staff at the National Catholic Bioethics Center in Philadelphia, who has been following the Gonzales case closely."There is a clear downward trajectory here," he said. "This child is dying. The question is what do we have to do in order to provide proper care to a dying individual."In cases like these, he said, the church teachings are clear that removing Emilio from life support would be morally acceptable.Though some have drawn comparisons between Emilio and Terri Schiavo, the brain-damaged Florida woman whose feeding tube was removed in 2005, the church sees the situations as distinctly different, Pacholczyk said."Terri Schiavo was not dying of anything," he said, which is why church leaders rallied to try to prevent ending her care. She was a disabled person who died because she was denied nutrition and hydration, a step the Catholic Church would never sanction, he said.

But that's what Emilio's doctors are proposing, argues Burke Balch, director of the Robert Powell Center for Medical Ethics, which handles euthanasia issues. The boy is receiving nutrition and breathing assistance, which he believes the church would consider ordinary care."In Catholic teaching, if you omit treatment with the intent of bringing about death, that is considered euthanasia, which is forbidden," he said. "And in this case, that seems to be the object aimed at."

On Feb. 19, Emilio's doctors consulted with the pediatric and neonatal ethics committee, a group of people from the community who review difficult cases and make sure Seton adheres to Catholic teaching in its health care practices.The hospital was founded by the Daughters of Charity and preserves the mission of those nuns. The committee first advised doctors to pursue more options for the boy. But the following month, after Emilio's condition worsened, members determined that continued treatment was futile. Between meetings with doctors and the Gonzales family, the committee also met with Aymond, said Michael Regier, general counsel for the Seton hospital system."We regularly consult with the bishop," he said, "particularly on issues where we think there may be some likelihood that the issues could be (the topic of) public discussion or debate."Aymond turned to national and international bioethicists and theologians and said he tried to weigh the details of Emilio's situation against the overall philosophy issued from the Vatican. Aymond said he's satisfied with the hospital's conclusion."From the documentation I have read from the doctors and the ethics committee," he said, "the hospital staff and administration have acted responsibly and what they are suggesting to do is in accordance with church teaching."But he would not say that Catarina Gonzales is wrong to seek continued treatment, and he said he would like to meet with her to talk about the church's teachings."The difficulty that we always run into is that very often for any of us, whether it's a bishop, a priest, a lay person, we may understand something theologically and theoretically, what we feel about it is very different," Aymond said.
eflynn@statesman.com; 445-3812