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!
Monday, August 20, 2007
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
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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.
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