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...

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

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

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....
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Medical guidance from the church
In Gonzales case, church teachings are interpreted differently

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

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

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

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

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

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

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

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...
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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/
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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.
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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...
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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=

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Here is some new research on the Autism front:

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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