The Disabilities Studies Blog has a post by Stephen Drake of the Autism Self Advocacy Network updating the situation. I am republishing it here...
------------------
I am pleased to inform you that this afternoon the NYU Child Study Center
announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that
announcement here. The thousands of people with disabilities, family members,
professionals and others who have written, called, e-mailed and signed our
petition have been heard. Today is a historic day for the disability community.
Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the
NYU Child Study Center, I have obtained a commitment to pursue real dialogue in
the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.
-------------
Again, this goes to reinforce the power and importance of advocacy and how the Internet can get the word out, and mobilize a constituency group.
Hurrah!
Saturday, December 22, 2007
Tuesday, December 18, 2007
Inspirations on the Internet
I have also started an additional blog-- focused on the motivational, and spiritual. Lots of Thomas Kinkade artwork and poems. It also has a great link for online Christmas Carols-- with sheet music and instrumental music.
Check it out!
Check it out!
"Ransom Notes" Ad Campaign Reinforces Stigma
There is an ad campaign by the New York University Childhood Center that is upsetting quite a few folks in the autism community. These ad presents ransom notes, threatening to 'make' someone autistic. There is an online petition, to speak out against it.
Wednesday, December 12, 2007
The Future Doc Wilson: The Real Meaning of Christmas..
As I was reviewing the traffic on my blog, one posting came up quite a bit. I re-read it, and can not improve on it-- so enjoy!The Future Doc Wilson: The Real Meaning of Christmas..
Fever as a Cure for Autism?
The following NPR story may be of interest:
NPR : Autism Study Lends Credence to Fever Effect
Several parents cite the subsidance of autistic traits when children have a fever. This is being studied further...
--------------------
Morning Edition, December 6, 2007 · For the first three years of his life, Rene Craft's son, Jackson, communicated primarily through screaming tantrums. He never spoke. He didn't point to things. He didn't make eye contact. He had the classic signs of severe autism.
Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.
"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."
Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement.
Craft isn't the first parent to notice the so-called "fever effect." Autism researchers have been hearing reports about it for decades.
Now a team from the Kennedy Krieger Institute in Baltimore has done a study that suggests the fever effect is real.
Laura Curran, Ph.D., is the lead author of the study, which appears in the current issue of the journal Pediatrics.
"We did find fewer autistic-like behaviors when kids had fevers," she says. "And as the fever disappeared, their autistic behaviors returned."
That wasn't true for every child. And the study included just 30 children, and relied on parents to fill out detailed checklists about each child's behavior.
Even so, Curran says it looks like parents have been right all along. She says she's not surprised.
"As a mother myself, I know no one knows their children better than the parents," she says. "And we've been hearing about these anecdotes for many, many years."
Now the question for researchers is how fever affects autism.
Dr. Andy Zimmerman of Kennedy Krieger says the answer probably involves the connections between brain cells — which many researcher believe is one place things go wrong in autism.
Zimmerman says that it's not the rise in a child's temperature that makes the difference. But it may be that brain connections work better in the presence of small proteins called cytokines that are produced by the immune system.
"We'd like to know what those cytokines are in children with autism when they get fevers, to see if one or more of these cytokines might be unusually increased," he says.
That might lead to a treatment that could mimic the beneficial effects of fever without actually making a child sick.
Craft believes researchers will find an answer, and it will help her son.
She says she has noticed that every time Jackson gets a high fever, he undergoes a dramatic change. He may ask to play a game, or make eye contact, or stop biting his hands until they bleed.
"Jackson runs into furniture with his head when he's upset or I question him," Craft says. "When he has a fever, those behaviors disappear."
Craft says she plans to enroll her son in a new study at Kennedy Krieger that will try to explain the fever effect.
. "There is something occurring in his brain that he needs, that he gets when he has a fever," Craft says. "I don't know what it is. That's for the doctors to figure out. But he's in there. He's waiting to come out."
-----------------------------------------
Other autism stories on Morning Edition, on NPR--
In Depth
Nov. 5, 2007
Neuroscientists Focus on Autism
Aug. 21, 2007
Schools Strive to Meet Needs of Autistic Students
Aug. 16, 2007
Parents Fight for Autism Insurance Coverage
Aug. 15, 2007
Public Schools Prepare to Educate Kids with Autism
June 28, 2007
Autism Poses Extra Obstacles for Blacks
June 14, 2007
Vaccines on Trial for Alleged Link to Autism
April 11, 2007
Parents of the Autistic Weigh Lifelong Care Options
April 5, 2007
Online Project Promotes Autism Research
March 15, 2007
Cause of Autism Narrowed Down to 100 Genes
NPR : Autism Study Lends Credence to Fever Effect
Several parents cite the subsidance of autistic traits when children have a fever. This is being studied further...
--------------------
Morning Edition, December 6, 2007 · For the first three years of his life, Rene Craft's son, Jackson, communicated primarily through screaming tantrums. He never spoke. He didn't point to things. He didn't make eye contact. He had the classic signs of severe autism.
Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.
"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."
Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement.
Craft isn't the first parent to notice the so-called "fever effect." Autism researchers have been hearing reports about it for decades.
Now a team from the Kennedy Krieger Institute in Baltimore has done a study that suggests the fever effect is real.
Laura Curran, Ph.D., is the lead author of the study, which appears in the current issue of the journal Pediatrics.
"We did find fewer autistic-like behaviors when kids had fevers," she says. "And as the fever disappeared, their autistic behaviors returned."
That wasn't true for every child. And the study included just 30 children, and relied on parents to fill out detailed checklists about each child's behavior.
Even so, Curran says it looks like parents have been right all along. She says she's not surprised.
"As a mother myself, I know no one knows their children better than the parents," she says. "And we've been hearing about these anecdotes for many, many years."
Now the question for researchers is how fever affects autism.
Dr. Andy Zimmerman of Kennedy Krieger says the answer probably involves the connections between brain cells — which many researcher believe is one place things go wrong in autism.
Zimmerman says that it's not the rise in a child's temperature that makes the difference. But it may be that brain connections work better in the presence of small proteins called cytokines that are produced by the immune system.
"We'd like to know what those cytokines are in children with autism when they get fevers, to see if one or more of these cytokines might be unusually increased," he says.
That might lead to a treatment that could mimic the beneficial effects of fever without actually making a child sick.
Craft believes researchers will find an answer, and it will help her son.
She says she has noticed that every time Jackson gets a high fever, he undergoes a dramatic change. He may ask to play a game, or make eye contact, or stop biting his hands until they bleed.
"Jackson runs into furniture with his head when he's upset or I question him," Craft says. "When he has a fever, those behaviors disappear."
Craft says she plans to enroll her son in a new study at Kennedy Krieger that will try to explain the fever effect.
. "There is something occurring in his brain that he needs, that he gets when he has a fever," Craft says. "I don't know what it is. That's for the doctors to figure out. But he's in there. He's waiting to come out."
-----------------------------------------
Other autism stories on Morning Edition, on NPR--
In Depth
Nov. 5, 2007
Neuroscientists Focus on Autism
Aug. 21, 2007
Schools Strive to Meet Needs of Autistic Students
Aug. 16, 2007
Parents Fight for Autism Insurance Coverage
Aug. 15, 2007
Public Schools Prepare to Educate Kids with Autism
June 28, 2007
Autism Poses Extra Obstacles for Blacks
June 14, 2007
Vaccines on Trial for Alleged Link to Autism
April 11, 2007
Parents of the Autistic Weigh Lifelong Care Options
April 5, 2007
Online Project Promotes Autism Research
March 15, 2007
Cause of Autism Narrowed Down to 100 Genes
Tuesday, December 11, 2007
ADA Disability Law and Policy- A National Audio-Conference
Tuesday December 18
2 - 3:30 pm EST
Speaker
Peter Blanck, JD, Ph.D, Chair, Burton Blatt Institute, Syracuse
University
Reviewing previous research efforts, this session sets out a
blueprint for the role of research, policy, and law in advancing the
civic, economic and social participation of persons with disabilities
in a global society. It reviews past public policy efforts and
research findings regarding workers with disabilities. It discusses
current and future research initiatives on the cutting edge of
promoting successful employment outcomes for people with
disabilities. The discussion presents promising research
methodologies in multidisciplinary field disability and employment
research. Finally, our presenter will put forth challenges and
opportunities for research, policy, and legal initiatives, framing a
blueprint for the next quarter century.
Cost per site (regardless of the number of participants at each site)
$25 for nonprofits, individuals and government agencies
$40 for businesses
Sessions are 90 minutes and delivered by telephone (call in to a toll
free phone number that you can access after you register).
Participants are in a "listen-only" mode until the question and
answer period. The sessions are offered real-time captioned on the web.
Audio conferences are a great way to get information without
traveling. You sit in your office or home or at any telephone and
call in. If you have a speaker phone invite your colleagues to
participate.
Registration is at www.ada-audio.org
If you have problems/questions with registration: the Great Lakes ADA
Center at 312-413-1407 voice/tty
2 - 3:30 pm EST
Speaker
Peter Blanck, JD, Ph.D, Chair, Burton Blatt Institute, Syracuse
University
Reviewing previous research efforts, this session sets out a
blueprint for the role of research, policy, and law in advancing the
civic, economic and social participation of persons with disabilities
in a global society. It reviews past public policy efforts and
research findings regarding workers with disabilities. It discusses
current and future research initiatives on the cutting edge of
promoting successful employment outcomes for people with
disabilities. The discussion presents promising research
methodologies in multidisciplinary field disability and employment
research. Finally, our presenter will put forth challenges and
opportunities for research, policy, and legal initiatives, framing a
blueprint for the next quarter century.
Cost per site (regardless of the number of participants at each site)
$25 for nonprofits, individuals and government agencies
$40 for businesses
Sessions are 90 minutes and delivered by telephone (call in to a toll
free phone number that you can access after you register).
Participants are in a "listen-only" mode until the question and
answer period. The sessions are offered real-time captioned on the web.
Audio conferences are a great way to get information without
traveling. You sit in your office or home or at any telephone and
call in. If you have a speaker phone invite your colleagues to
participate.
Registration is at www.ada-audio.org
If you have problems/questions with registration: the Great Lakes ADA
Center at 312-413-1407 voice/tty
Sunday, November 04, 2007
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/
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/
Tuesday, October 16, 2007
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
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
Monday, October 08, 2007
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!
- 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!
Monday, October 01, 2007
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
--------------------------
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
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
Sunday, September 30, 2007
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.
Monday, August 20, 2007
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!
-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!
Friday, June 22, 2007
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.
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
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>.
-----------------
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>.
Thursday, May 24, 2007
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
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..
----------------
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
__________________________________________________________
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
__________________________________________________________
---------------
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
__________________________________________________________
Wednesday, May 09, 2007
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
--------------------------
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
Monday, May 07, 2007
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
Tuesday, May 01, 2007
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!
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!
Monday, April 30, 2007
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...
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...
Friday, April 20, 2007
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
----------------------------------------------------------
"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.
----------------------------------------------------------
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
Elizabeth GrahamDirector
Texas Right to Life
----------------------------------------------------------
"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.
----------------------------------------------------------
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
Tuesday, April 17, 2007
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....
--------------------------------
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
--------------------------------
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
Wednesday, April 11, 2007
Emilio Updates
Emilio lives! And perhaps the right to live can be decided by the family, and not a hospital committee. Sign the petition to let him continue his natural life's progression...
---------------------------
Dear Readers,The following update comes from Diane Coleman of Not Dead Yet:"Bob Kafka just called to let us know that Emilio's attorney wassuccessful in getting a temporary restraining order (TRO) untilApril 19, extending the time during which he will continue toreceive life-sustaining treatment.Bob believes that we should continue our efforts to focus onTexas Governor Perry, including letters, calls and the petition,and he thinks that the political activity around the case impactedthe court."
AAPD is writing a second letter to Governor Perry, a copy of whichwe will be posted on the AAPD website by tomorrow at:http://www.aapd.com/News/bioethics/indexbioethics.phpThe petition is located at:http://www.petitiononline.com/emilio16/petition.html
There is also coverage on CNN at http://www.cnn.com/2007/LAW/04/10/baby.care.ap/
---------------------------
Case Puts Texas Futile-Treatment Law Under a Microscope
Statute Allows for Deadline on Care
By Sylvia Moreno
Washington Post Staff Writer
Wednesday, April 11, 2007; p. A03
AUSTIN, April 10 -- A 17-month-old deaf, blind and terminally ill child on life support is the latest focus in an emotional fight against a Texas law that allows hospitals to withdraw care when a patient's ongoing treatment is declared "medically futile."Since Dec. 28, baby Emilio Gonzales has spent his days in a pediatric intensive care unit, mostly asleep from the powerful drugs he is administered, and breathing with the help of a respirator. Children's Hospital here declared his case hopeless last month and gave his mother 10 days, as legally required, to find another facility to take the baby.
That deadline, extended once already, was due to expire Wednesday, at which time the hospital was to shut off Emilio's respirator. Without the machine, Emilio would die within minutes or hours, hospital officials have said.But the child's mother, Catarina Gonzales, 23, and lawyers representing a coalition of state and national disability rights advocates and groups that favor prolonging life persuaded a Travis County judge Tuesday to force the hospital to maintain Emilio's care while the search for a facility to accept him continues. The group's attempt last week to persuade a federal judge to intervene in the case failed.County Probate Judge Guy Herman appointed a guardian ad litem, or attorney, to represent Emilio's interests and issued a temporary restraining order prohibiting Children's Hospital from removing life-sustaining care from the child.
He set an April 19 hearing on the mother's and lawyers' request for a temporary injunction against the hospital.
----------------------
Here is an article talking about the issue from another perspective-- the rights of the hospital to decide if a life is worth using their resources for...
---------------------
April 9, 2007, 2:23PM
Unusual Texas law at center of fight over baby's life
By KELLEY SHANNON
Associated Press Writer © 2007
The Associated Press AUSTIN -
As 17-month-old Emilio Gonzales lies in a hospital, hooked up to tubes to help him breathe and eat, his mother holds him close and cherishes every movement.Catarina Gonzales knows her baby is terminally ill and that one day she'll have to let go. But it's not yet time, she and her attorneys contend in their legal clash with hospital officials who want to stop Emilio's life-sustaining treatment. An unusual Texas law signed by George W. Bush when he was governor lets the hospital make that life-or-death call.
The latest legal dispute over the law - Emilio's case - goes to court again Tuesday, the day his life support is set to end."The family has made a unified decision" to keep Emilio living through artificial means, said Joshua Carden, an attorney for the Gonzales family. "The hospital is making quality of life value judgments. That's a huge source of concern."Children's Hospital of Austin has been caring for Emilio since Dec. 28. He's believed to have Leigh's Disease, a progressive illness difficult to diagnose, according to both sides.The boy cannot breathe on his own and must have nutrition and water pumped into him. He can't swallow or gag or make purposeful movements, said Michael Regier, general counsel for the Seton Family of Hospitals, which encompasses the children's hospital.Emilio's higher order brain functions are destroyed, and secretions must be vigorously suctioned from his lungs, Regier said."The care is very aggressive and very invasive," Regier said.
Though the treatment is expensive, the hospital contends that money is not part of its decision. Emilio has health coverage through Medicaid.Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, Regier said.So the hospital invoked the state law that allows it to end life-sustaining treatment in medically futile cases after a 10-day notice to the family. That deadline was voluntarily extended while the hospital and family tried to find another facility to care for Emilio, though as of Monday none had been located.
Children's Hospital has contacted 30 different medical facilities in Texas and elsewhere.Lawyers for the Gonzales family said they were continuing to work Monday to find another place for him. Catarina Gonzales, 23, who has no other children and cannot have more, denies that her son is non-responsive, as medical caregivers say, Carden said. She says that the boy smiles and turns his head toward voices."Every day that her son is alive and she gets to hold him and be next to him moving around is a precious day for her," Carden said.Carden is working with the family through the Alliance Defense Fund and lead attorney Jerri Ward, who has represented other Texans in similar disputes with hospitals over life-sustaining treatment.
The 1999 Texas law is increasingly under fire from patient advocates, disability rights groups and Texas Right to Life, best known for its anti-abortion efforts.Those varying interests want to change the so-called futile care law to eliminate the 10-day provision for cutting off life support because they say it's not enough time to transfer a critically ill person to another facility. A state Senate committee plans to hear testimony on proposed changes to the law Thursday.
The powerful Texas Hospital Association and other medical organizations largely support the existing law and say it's not frequently used because families and doctors usually agree on the patient's treatment. Texas Right to Life, which is helping the Gonzales family try to relocate Emilio, said it has been involved in more than two dozen similar cases over the past year and a half.Emilio's situation differs from the case of Terri Schiavo in Florida, who was in a persistent vegetative state and at the center of a legal dispute over whether to remove her feeding tube. In that case, family members disagreed with each other about the course of treatment. Schiavo died after her tube was removed in 2005.
Texas is one of the few states with a timetable allowing hospitals to decide to end life-sustaining treatment, according to studies cited by activist groups. In Emilio Gonzales' case, attorneys for both the family and the hospital say the boy would likely die soon after his ventilator is shut down.Last week, a federal judge refused to intervene and left it to the state court where a lawsuit was pending that seeks to declare the Texas futile care law unconstitutional.
What is immediately at stake before an Austin judge Tuesday is whether a temporary restraining order is granted prohibiting Emilio's life support from being cut off by the end of the day."We feel that the original decision is right, and it's time to proceed," said Regier, the hospital's lawyer.If the hospital is allowed to go forward, the life support equipment would likely be turned off during the day Wednesday when the family can be present and have the aid of social workers and chaplains, he said.Carden argues that Emilio's death by asphyxiation would be painful. He said the law prevents hospital workers from even giving the boy the drugs death row inmates receive to help them as they are executed by lethal injection."It's not like he'll just drift quietly off," he said.
---------------------------
Dear Readers,The following update comes from Diane Coleman of Not Dead Yet:"Bob Kafka just called to let us know that Emilio's attorney wassuccessful in getting a temporary restraining order (TRO) untilApril 19, extending the time during which he will continue toreceive life-sustaining treatment.Bob believes that we should continue our efforts to focus onTexas Governor Perry, including letters, calls and the petition,and he thinks that the political activity around the case impactedthe court."
AAPD is writing a second letter to Governor Perry, a copy of whichwe will be posted on the AAPD website by tomorrow at:http://www.aapd.com/News/bioethics/indexbioethics.phpThe petition is located at:http://www.petitiononline.com/emilio16/petition.html
There is also coverage on CNN at http://www.cnn.com/2007/LAW/04/10/baby.care.ap/
---------------------------
Case Puts Texas Futile-Treatment Law Under a Microscope
Statute Allows for Deadline on Care
By Sylvia Moreno
Washington Post Staff Writer
Wednesday, April 11, 2007; p. A03
AUSTIN, April 10 -- A 17-month-old deaf, blind and terminally ill child on life support is the latest focus in an emotional fight against a Texas law that allows hospitals to withdraw care when a patient's ongoing treatment is declared "medically futile."Since Dec. 28, baby Emilio Gonzales has spent his days in a pediatric intensive care unit, mostly asleep from the powerful drugs he is administered, and breathing with the help of a respirator. Children's Hospital here declared his case hopeless last month and gave his mother 10 days, as legally required, to find another facility to take the baby.
That deadline, extended once already, was due to expire Wednesday, at which time the hospital was to shut off Emilio's respirator. Without the machine, Emilio would die within minutes or hours, hospital officials have said.But the child's mother, Catarina Gonzales, 23, and lawyers representing a coalition of state and national disability rights advocates and groups that favor prolonging life persuaded a Travis County judge Tuesday to force the hospital to maintain Emilio's care while the search for a facility to accept him continues. The group's attempt last week to persuade a federal judge to intervene in the case failed.County Probate Judge Guy Herman appointed a guardian ad litem, or attorney, to represent Emilio's interests and issued a temporary restraining order prohibiting Children's Hospital from removing life-sustaining care from the child.
He set an April 19 hearing on the mother's and lawyers' request for a temporary injunction against the hospital.
----------------------
Here is an article talking about the issue from another perspective-- the rights of the hospital to decide if a life is worth using their resources for...
---------------------
April 9, 2007, 2:23PM
Unusual Texas law at center of fight over baby's life
By KELLEY SHANNON
Associated Press Writer © 2007
The Associated Press AUSTIN -
As 17-month-old Emilio Gonzales lies in a hospital, hooked up to tubes to help him breathe and eat, his mother holds him close and cherishes every movement.Catarina Gonzales knows her baby is terminally ill and that one day she'll have to let go. But it's not yet time, she and her attorneys contend in their legal clash with hospital officials who want to stop Emilio's life-sustaining treatment. An unusual Texas law signed by George W. Bush when he was governor lets the hospital make that life-or-death call.
The latest legal dispute over the law - Emilio's case - goes to court again Tuesday, the day his life support is set to end."The family has made a unified decision" to keep Emilio living through artificial means, said Joshua Carden, an attorney for the Gonzales family. "The hospital is making quality of life value judgments. That's a huge source of concern."Children's Hospital of Austin has been caring for Emilio since Dec. 28. He's believed to have Leigh's Disease, a progressive illness difficult to diagnose, according to both sides.The boy cannot breathe on his own and must have nutrition and water pumped into him. He can't swallow or gag or make purposeful movements, said Michael Regier, general counsel for the Seton Family of Hospitals, which encompasses the children's hospital.Emilio's higher order brain functions are destroyed, and secretions must be vigorously suctioned from his lungs, Regier said."The care is very aggressive and very invasive," Regier said.
Though the treatment is expensive, the hospital contends that money is not part of its decision. Emilio has health coverage through Medicaid.Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, Regier said.So the hospital invoked the state law that allows it to end life-sustaining treatment in medically futile cases after a 10-day notice to the family. That deadline was voluntarily extended while the hospital and family tried to find another facility to care for Emilio, though as of Monday none had been located.
Children's Hospital has contacted 30 different medical facilities in Texas and elsewhere.Lawyers for the Gonzales family said they were continuing to work Monday to find another place for him. Catarina Gonzales, 23, who has no other children and cannot have more, denies that her son is non-responsive, as medical caregivers say, Carden said. She says that the boy smiles and turns his head toward voices."Every day that her son is alive and she gets to hold him and be next to him moving around is a precious day for her," Carden said.Carden is working with the family through the Alliance Defense Fund and lead attorney Jerri Ward, who has represented other Texans in similar disputes with hospitals over life-sustaining treatment.
The 1999 Texas law is increasingly under fire from patient advocates, disability rights groups and Texas Right to Life, best known for its anti-abortion efforts.Those varying interests want to change the so-called futile care law to eliminate the 10-day provision for cutting off life support because they say it's not enough time to transfer a critically ill person to another facility. A state Senate committee plans to hear testimony on proposed changes to the law Thursday.
The powerful Texas Hospital Association and other medical organizations largely support the existing law and say it's not frequently used because families and doctors usually agree on the patient's treatment. Texas Right to Life, which is helping the Gonzales family try to relocate Emilio, said it has been involved in more than two dozen similar cases over the past year and a half.Emilio's situation differs from the case of Terri Schiavo in Florida, who was in a persistent vegetative state and at the center of a legal dispute over whether to remove her feeding tube. In that case, family members disagreed with each other about the course of treatment. Schiavo died after her tube was removed in 2005.
Texas is one of the few states with a timetable allowing hospitals to decide to end life-sustaining treatment, according to studies cited by activist groups. In Emilio Gonzales' case, attorneys for both the family and the hospital say the boy would likely die soon after his ventilator is shut down.Last week, a federal judge refused to intervene and left it to the state court where a lawsuit was pending that seeks to declare the Texas futile care law unconstitutional.
What is immediately at stake before an Austin judge Tuesday is whether a temporary restraining order is granted prohibiting Emilio's life support from being cut off by the end of the day."We feel that the original decision is right, and it's time to proceed," said Regier, the hospital's lawyer.If the hospital is allowed to go forward, the life support equipment would likely be turned off during the day Wednesday when the family can be present and have the aid of social workers and chaplains, he said.Carden argues that Emilio's death by asphyxiation would be painful. He said the law prevents hospital workers from even giving the boy the drugs death row inmates receive to help them as they are executed by lethal injection."It's not like he'll just drift quietly off," he said.
Sunday, April 01, 2007
Autism Awareness Month
April is Autism Awareness Month. I will be posting interesting facts, activities and tidbits throughout the month. I also have some previous posts in February and March 2007 tht you can review.
Here are a few home movies on the topic from You Tube;
http://www.youtube.com/watch?v=BKgU2okU8Wo
and some PSA's
http://www.youtube.com/watch?v=QivPTrtu9_Q&mode=related&search=
http://www.youtube.com/watch?v=ANoK3eGkUc4&mode=related&search=
and debate on potential legislation
http://www.youtube.com/watch?v=cLdXcb5Pc6Q&mode=related&search=
and cultural heroes
http://www.youtube.com/watch?v=g6laOv94VUU&mode=related&search=
http://www.youtube.com/watch?v=1fw1CcxCUgg&mode=related&search=
http://www.youtube.com/watch?v=dmhfm81Vxuo&mode=related&search=
and poetic expression
http://www.youtube.com/watch?v=RUTFIuayPJY&mode=related&search=
--------------
Here is some new research on the Autism front:
------------------------
Moms of autistic kids report close bond
Staff report
(May 9, 2007) — Rochester researchers found that mothers of children with autism were more likely to say they had a close relationship with their child and less anger than moms of children without autism.Guillermo Montes at the Children’s Institute in Rochester and Dr. Jill Halterman at Golisano Children’s Hospital at Strong took data from the 2003 National Survey of Children’s Health, in which moms of kids ages 4 to 17 were surveyed. The study, published in the May edition of Pediatrics, said moms of kids with autism also were more likely to report that they had better coping skills.However, those same moms also said they had more stress and had poor or fair mental health when compared with mothers of non-autistic children.“This is good news for mothers of children with autism,” said Montes in a press release. “These mothers show remarkable resilience in the context of high stress level and poorer mental health.”The national survey included 61,722 moms, 364 of which had autistic children.
Rochester Democrat and Chronicle. May 9, 2007
Retrieved from http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070509/NEWS01/70509034/-1/UPDATES
Here are a few home movies on the topic from You Tube;
http://www.youtube.com/watch?v=BKgU2okU8Wo
and some PSA's
http://www.youtube.com/watch?v=QivPTrtu9_Q&mode=related&search=
http://www.youtube.com/watch?v=ANoK3eGkUc4&mode=related&search=
and debate on potential legislation
http://www.youtube.com/watch?v=cLdXcb5Pc6Q&mode=related&search=
and cultural heroes
http://www.youtube.com/watch?v=g6laOv94VUU&mode=related&search=
http://www.youtube.com/watch?v=1fw1CcxCUgg&mode=related&search=
http://www.youtube.com/watch?v=dmhfm81Vxuo&mode=related&search=
and poetic expression
http://www.youtube.com/watch?v=RUTFIuayPJY&mode=related&search=
--------------
Here is some new research on the Autism front:
------------------------
Moms of autistic kids report close bond
Staff report
(May 9, 2007) — Rochester researchers found that mothers of children with autism were more likely to say they had a close relationship with their child and less anger than moms of children without autism.Guillermo Montes at the Children’s Institute in Rochester and Dr. Jill Halterman at Golisano Children’s Hospital at Strong took data from the 2003 National Survey of Children’s Health, in which moms of kids ages 4 to 17 were surveyed. The study, published in the May edition of Pediatrics, said moms of kids with autism also were more likely to report that they had better coping skills.However, those same moms also said they had more stress and had poor or fair mental health when compared with mothers of non-autistic children.“This is good news for mothers of children with autism,” said Montes in a press release. “These mothers show remarkable resilience in the context of high stress level and poorer mental health.”The national survey included 61,722 moms, 364 of which had autistic children.
Rochester Democrat and Chronicle. May 9, 2007
Retrieved from http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070509/NEWS01/70509034/-1/UPDATES
Saturday, March 31, 2007
Oh Come and Give Ohio Praise...
I am definately a fair weather fan, but I have to give acknoledgement to one of my alma maters for a win against the basketball machine Georgetown University. Ohio State is in the NCAA basketball (no, that is NOT a typo-baseketball) finals!
A Disability Community Thumbs Up To...
1. House Passes Bill to Improve Veterans' Care
March 29, 2007
WASHINGTON, D.C. (AP) Reacting to shabby treatment of wounded service members at Walter Reed Army Medical Center, the House on Wednesday created a coterie of case managers, advocates and counselors for injured troops returning from Iraq and Afghanistan.
The Wounded Warrior Assistance Act, approved 426 to 0, also establishes a hot line for medical patients to report problems in their treatment and demands an end to the red tape that has frustrated disabled service members as they move from Pentagon care to care by the Veterans Affairs Department.
-------------------
Definately a two thumbs up! Sometimes government sees the obvious, grasps the obvious, and does the right thing!
------------------
2. Independent Living Centers (ILC's) Freeing People Trapped in Nursing Homes
In 2004, a reporting by ILCs showed that they "successfully relocated" 2,864 persons.
In 2005, they reported only 2,867 persons were "relocated,"a/k/a were freed from unnecessary institutionalization! [Source: Steve Gold, The Disability Odyssey continues]
----------------
The work continues-- I am looking forward to a continued increase in people with disabilities, living in the community. Better quality of life, and cheapter-- could it get any better?
3. Susan & Hillary Pushing for War Injured- Establishing TBI Legitimacy
March 29, 2007
Washington, DC - U.S. Senator Susan Collins today announced that she has joined with Senator Hillary Rodham Clinton (D-NY) in introducing legislation to improve the detection, assessment, and treatment of Traumatic Brain Injury (TBI) among wounded service members and to expand support for the victims of TBI and their families.
The “Heroes at Home Act” would authorize $3.75 million for the Secretary of Defense to implement and (sic) objective, computer-based assessment protocol to measure cognitive functioning, both prior to and after deployment, in order to facilitate the accurate diagnosis and treatment of mild and moderate TBI.
----------
A bit of pandering to the disability community? Probably.
What do I think? Sometimes its better to do the right thing, for the wrong reason, than to do nothing at all!
--------
4. Sen. Tom Harkin (D-IA) introduced the Promoting Wellness for Individuals with Disabilities Act of 2007 (S. 1050) which:
Amends the Public Health Services Act to require medical and dental schools and residency programs to increase training to improve competency and clinical skills in providing care to patients with disabilities, including those with intellectual disabilities;
Authorizes wellness grant programs to fund programs for smoking cessation, weight control, nutrition and fitness that focus on the unique challenges faced by individuals with disabilities; preventative health screening programs; and athletic or sports programs that provide individuals with disabilities an opportunity to increase their physical activity; and
Establishes accessibility standards for medical diagnostic equipment.
------------------------
Yeah! acknowledgement of medical community deficits and a measurable remediation plan!
-----------------------
5. The Senate expanded the small business tax package
Why is this good news? The Senate small business tax package includes a five year extension of the Work Opportunity Tax Credit (WOTC). This tax credit can be claimed by employers who hire from certain targeted populations including people with disabilities.
----------------------
OK House-- now its your turn.
March 29, 2007
WASHINGTON, D.C. (AP) Reacting to shabby treatment of wounded service members at Walter Reed Army Medical Center, the House on Wednesday created a coterie of case managers, advocates and counselors for injured troops returning from Iraq and Afghanistan.
The Wounded Warrior Assistance Act, approved 426 to 0, also establishes a hot line for medical patients to report problems in their treatment and demands an end to the red tape that has frustrated disabled service members as they move from Pentagon care to care by the Veterans Affairs Department.
-------------------
Definately a two thumbs up! Sometimes government sees the obvious, grasps the obvious, and does the right thing!
------------------
2. Independent Living Centers (ILC's) Freeing People Trapped in Nursing Homes
In 2004, a reporting by ILCs showed that they "successfully relocated" 2,864 persons.
In 2005, they reported only 2,867 persons were "relocated,"a/k/a were freed from unnecessary institutionalization! [Source: Steve Gold, The Disability Odyssey continues]
----------------
The work continues-- I am looking forward to a continued increase in people with disabilities, living in the community. Better quality of life, and cheapter-- could it get any better?
3. Susan & Hillary Pushing for War Injured- Establishing TBI Legitimacy
March 29, 2007
Washington, DC - U.S. Senator Susan Collins today announced that she has joined with Senator Hillary Rodham Clinton (D-NY) in introducing legislation to improve the detection, assessment, and treatment of Traumatic Brain Injury (TBI) among wounded service members and to expand support for the victims of TBI and their families.
The “Heroes at Home Act” would authorize $3.75 million for the Secretary of Defense to implement and (sic) objective, computer-based assessment protocol to measure cognitive functioning, both prior to and after deployment, in order to facilitate the accurate diagnosis and treatment of mild and moderate TBI.
----------
A bit of pandering to the disability community? Probably.
What do I think? Sometimes its better to do the right thing, for the wrong reason, than to do nothing at all!
--------
4. Sen. Tom Harkin (D-IA) introduced the Promoting Wellness for Individuals with Disabilities Act of 2007 (S. 1050) which:
Amends the Public Health Services Act to require medical and dental schools and residency programs to increase training to improve competency and clinical skills in providing care to patients with disabilities, including those with intellectual disabilities;
Authorizes wellness grant programs to fund programs for smoking cessation, weight control, nutrition and fitness that focus on the unique challenges faced by individuals with disabilities; preventative health screening programs; and athletic or sports programs that provide individuals with disabilities an opportunity to increase their physical activity; and
Establishes accessibility standards for medical diagnostic equipment.
------------------------
Yeah! acknowledgement of medical community deficits and a measurable remediation plan!
-----------------------
5. The Senate expanded the small business tax package
Why is this good news? The Senate small business tax package includes a five year extension of the Work Opportunity Tax Credit (WOTC). This tax credit can be claimed by employers who hire from certain targeted populations including people with disabilities.
----------------------
OK House-- now its your turn.
Friday, March 23, 2007
Emilio's Story
This is a story that is below the radar, but people need to know. A Catholic hopsital wants to deny medical treatment for a child with a rare congential disease, Leigh's Disease, who is blind and deaf, and has a shortened life expectancy. Most kids live until 6-7; Texas doesn't want to find out.
It is interesting to note that because he is young and poor, the concerns focus not on the sanctity of life, but how he can't feel, or think, and how the ventilator is cruelty...
A poor family, on Medicaid is not given other options, so they are fighting it out in court....
------------------------------
Restraining Order Gives Disabled Child Emilio 19 More Days of Life at Catholic Hospital
By Hilary White
AUSTIN,
March 22, 2007 (LifeSiteNews.com) -
Emilio Gonzales has been given a reprieve by a restraining order to prevent a Catholic hospital from removing his respirator in ten days, as planned. Officials at the hospital have agreed to continue his care until at least April 10.The hospital's decision came after Emilio's mother, Catarina Gonzales filed a restraining order to require the hospital to continue her infant son's treatment, which consists of a respirator and feeding tube. She hopes the extra time will be sufficient to find another hospital willing to continue Emilio's care but so far facilities in Texas, Oklahoma, California and New York have all turned down her requests.
Gonzales was told by the Brackenridge Children's Hospital of Austin, March 12, that she had ten days to find another care facility or they would turn off Emilio's respirator. Brackenridge is part of the Seton Catholic health care system.Doctors have said that that Emilio's treatment is "medically inappropriate" although they have admitted that without the assisted breathing and nutrition and hydration, the child, who was born blind and deaf and suffers from Leigh's Disease, would die within days. "This care is medically inappropriate," said committee member Michael Regier. "The aggressive care that this infant is receiving is causing suffering, harm to the infant and without clinical benefit, and that should be discontinued."
Texas is one of two states with a "futile care" law that allows physicians to discontinue life-saving treatment without the consent of patients. Texas legislators are currently considering changing the law to require medical facilities to maintain such treatment until families can find alternate care arrangements. Leigh's disease is an incurable neurometabolic disorder that affects the central nervous system leading to loss of motor control and frequently to eventual respiratory, kidney and heart failure. Sufferers can live as long as may live to be 6 or 7 years of age. Some have survived to their mid-teenage years. Emilio is now 16 months old."I'm scared, because I don't want to lose my son, because I know he's moving," said Catarina. "I wish people could see him.""My biggest concern is the lack of time, which has always been my concern with this particular statute, because 10 days is simply not enough time in a situation like this to find another transfer," said Catarina's attorney, Jerri Ward told KXAN, a local NBC news affiliate.If the hospital does not grant an extension, the next step is a court hearing Wednesday.
Read previous LifeSiteNews.com coverage:
Mother Given 10 Days to Find New Hospital For Sick Child or Hospital Will Remove Respirator http://www.lifesite.net/ldn/2007/mar/07032102.html
It is interesting to note that because he is young and poor, the concerns focus not on the sanctity of life, but how he can't feel, or think, and how the ventilator is cruelty...
A poor family, on Medicaid is not given other options, so they are fighting it out in court....
------------------------------
Restraining Order Gives Disabled Child Emilio 19 More Days of Life at Catholic Hospital
By Hilary White
AUSTIN,
March 22, 2007 (LifeSiteNews.com) -
Emilio Gonzales has been given a reprieve by a restraining order to prevent a Catholic hospital from removing his respirator in ten days, as planned. Officials at the hospital have agreed to continue his care until at least April 10.The hospital's decision came after Emilio's mother, Catarina Gonzales filed a restraining order to require the hospital to continue her infant son's treatment, which consists of a respirator and feeding tube. She hopes the extra time will be sufficient to find another hospital willing to continue Emilio's care but so far facilities in Texas, Oklahoma, California and New York have all turned down her requests.
Gonzales was told by the Brackenridge Children's Hospital of Austin, March 12, that she had ten days to find another care facility or they would turn off Emilio's respirator. Brackenridge is part of the Seton Catholic health care system.Doctors have said that that Emilio's treatment is "medically inappropriate" although they have admitted that without the assisted breathing and nutrition and hydration, the child, who was born blind and deaf and suffers from Leigh's Disease, would die within days. "This care is medically inappropriate," said committee member Michael Regier. "The aggressive care that this infant is receiving is causing suffering, harm to the infant and without clinical benefit, and that should be discontinued."
Texas is one of two states with a "futile care" law that allows physicians to discontinue life-saving treatment without the consent of patients. Texas legislators are currently considering changing the law to require medical facilities to maintain such treatment until families can find alternate care arrangements. Leigh's disease is an incurable neurometabolic disorder that affects the central nervous system leading to loss of motor control and frequently to eventual respiratory, kidney and heart failure. Sufferers can live as long as may live to be 6 or 7 years of age. Some have survived to their mid-teenage years. Emilio is now 16 months old."I'm scared, because I don't want to lose my son, because I know he's moving," said Catarina. "I wish people could see him.""My biggest concern is the lack of time, which has always been my concern with this particular statute, because 10 days is simply not enough time in a situation like this to find another transfer," said Catarina's attorney, Jerri Ward told KXAN, a local NBC news affiliate.If the hospital does not grant an extension, the next step is a court hearing Wednesday.
Read previous LifeSiteNews.com coverage:
Mother Given 10 Days to Find New Hospital For Sick Child or Hospital Will Remove Respirator http://www.lifesite.net/ldn/2007/mar/07032102.html
Monday, March 19, 2007
Autism Updates
There is a good deal of new news on the autism spectrum front. There is info on childhood autism, as well as some medical professionals developing some insight on autism, based upon new technology such as YouTube.
New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)
Here are other hyperlinks:
http://www.troyrecord.com/site/news.cfm?newsid=18042693&BRD=1170&PAG=461&dept_id=7021&rfi=6
http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070306/NEWS01/703060316/1002/NEWS
http://timesunion.com/AspStories/storyprint.asp?StoryID=569247
http://www.timesunion.com/AspStories/story.asp?storyID=568457&category=OPINION&newsdate=3/4/2007
----------------
Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9
Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.
Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.
Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.
New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)
Here are other hyperlinks:
http://www.troyrecord.com/site/news.cfm?newsid=18042693&BRD=1170&PAG=461&dept_id=7021&rfi=6
http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070306/NEWS01/703060316/1002/NEWS
http://timesunion.com/AspStories/storyprint.asp?StoryID=569247
http://www.timesunion.com/AspStories/story.asp?storyID=568457&category=OPINION&newsdate=3/4/2007
----------------
Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9
Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.
Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.
Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.
The Ashley Treatment and Bioethics
This is an interesting article, looking at the discussion around Ashley Treatment, and its ramification for journalism. As an American, we dropped the ball on this one-- the Brits are the ones who put it into the public forum, giving it light and air. However, the American activist community has been diligent in keeping this on the radar, and holding decision makers in the medical professions responsible for devaluation of lives of people with disabilities.
We need to make sure journalist keep to their professional obligations of the public's right to know...
------------------
After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow
The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?
To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.
RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents
"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro
" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan
In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?
Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.
All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.
Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?
So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?
So future coverage ideas:
a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.
What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.
It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.
How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.
How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.
People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.
What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.
We need to make sure journalist keep to their professional obligations of the public's right to know...
------------------
After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow
The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?
To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.
RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents
"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro
" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan
In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?
Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.
All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.
Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?
So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?
So future coverage ideas:
a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.
What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.
It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.
How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.
How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.
People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.
What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.
Tuesday, March 06, 2007
EP Position on the Ashley Treatment & other misguided ideals
Exceptional Parent Magazine Position Statement to Organizations
When the Slippery Slope Becomes a Mudslide
This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor
In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.
Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.
As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.
The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.
EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?
It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.
It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."
Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:
* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.
* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:
- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights
* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.
* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.
* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________
When the Slippery Slope Becomes a Mudslide
This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor
In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.
Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.
As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.
The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.
EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?
It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.
It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."
Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:
* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.
* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:
- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights
* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.
* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.
* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________
Subscribe to:
Posts (Atom)