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.
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Definately a two thumbs up! Sometimes government sees the obvious, grasps the obvious, and does the right thing!
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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]
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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.
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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!
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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!
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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....
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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.
The Ashley Treatment and Bioethics
This is an interesting article, looking at the discussion around Ashley Treatment, and its ramification for journalism. As an American, we dropped the ball on this one-- the Brits are the ones who put it into the public forum, giving it light and air. However, the American activist community has been diligent in keeping this on the radar, and holding decision makers in the medical professions responsible for devaluation of lives of people with disabilities.
We need to make sure journalist keep to their professional obligations of the public's right to know...
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After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow
The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?
To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.
RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents
"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro
" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan
In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?
Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.
All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.
Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?
So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?
So future coverage ideas:
a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.
What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.
It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.
How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.
How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.
People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.
What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.
We need to make sure journalist keep to their professional obligations of the public's right to know...
------------------
After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow
The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?
To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.
RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents
"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro
" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan
In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?
Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.
All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.
Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?
So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?
So future coverage ideas:
a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.
What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.
It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.
How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.
How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.
People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.
What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.
Tuesday, March 06, 2007
EP Position on the Ashley Treatment & other misguided ideals
Exceptional Parent Magazine Position Statement to Organizations
When the Slippery Slope Becomes a Mudslide
This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor
In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.
Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.
As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.
The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.
EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?
It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.
It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."
Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:
* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.
* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:
- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights
* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.
* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.
* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________
When the Slippery Slope Becomes a Mudslide
This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor
In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.
Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.
As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.
The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.
EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?
It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.
It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."
Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:
* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.
* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:
- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights
* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.
* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.
* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________
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