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.
Saturday, March 31, 2007
Friday, March 23, 2007
Emilio's Story
This is a story that is below the radar, but people need to know. A Catholic hopsital wants to deny medical treatment for a child with a rare congential disease, Leigh's Disease, who is blind and deaf, and has a shortened life expectancy. Most kids live until 6-7; Texas doesn't want to find out.
It is interesting to note that because he is young and poor, the concerns focus not on the sanctity of life, but how he can't feel, or think, and how the ventilator is cruelty...
A poor family, on Medicaid is not given other options, so they are fighting it out in court....
------------------------------
Restraining Order Gives Disabled Child Emilio 19 More Days of Life at Catholic Hospital
By Hilary White
AUSTIN,
March 22, 2007 (LifeSiteNews.com) -
Emilio Gonzales has been given a reprieve by a restraining order to prevent a Catholic hospital from removing his respirator in ten days, as planned. Officials at the hospital have agreed to continue his care until at least April 10.The hospital's decision came after Emilio's mother, Catarina Gonzales filed a restraining order to require the hospital to continue her infant son's treatment, which consists of a respirator and feeding tube. She hopes the extra time will be sufficient to find another hospital willing to continue Emilio's care but so far facilities in Texas, Oklahoma, California and New York have all turned down her requests.
Gonzales was told by the Brackenridge Children's Hospital of Austin, March 12, that she had ten days to find another care facility or they would turn off Emilio's respirator. Brackenridge is part of the Seton Catholic health care system.Doctors have said that that Emilio's treatment is "medically inappropriate" although they have admitted that without the assisted breathing and nutrition and hydration, the child, who was born blind and deaf and suffers from Leigh's Disease, would die within days. "This care is medically inappropriate," said committee member Michael Regier. "The aggressive care that this infant is receiving is causing suffering, harm to the infant and without clinical benefit, and that should be discontinued."
Texas is one of two states with a "futile care" law that allows physicians to discontinue life-saving treatment without the consent of patients. Texas legislators are currently considering changing the law to require medical facilities to maintain such treatment until families can find alternate care arrangements. Leigh's disease is an incurable neurometabolic disorder that affects the central nervous system leading to loss of motor control and frequently to eventual respiratory, kidney and heart failure. Sufferers can live as long as may live to be 6 or 7 years of age. Some have survived to their mid-teenage years. Emilio is now 16 months old."I'm scared, because I don't want to lose my son, because I know he's moving," said Catarina. "I wish people could see him.""My biggest concern is the lack of time, which has always been my concern with this particular statute, because 10 days is simply not enough time in a situation like this to find another transfer," said Catarina's attorney, Jerri Ward told KXAN, a local NBC news affiliate.If the hospital does not grant an extension, the next step is a court hearing Wednesday.
Read previous LifeSiteNews.com coverage:
Mother Given 10 Days to Find New Hospital For Sick Child or Hospital Will Remove Respirator http://www.lifesite.net/ldn/2007/mar/07032102.html
It is interesting to note that because he is young and poor, the concerns focus not on the sanctity of life, but how he can't feel, or think, and how the ventilator is cruelty...
A poor family, on Medicaid is not given other options, so they are fighting it out in court....
------------------------------
Restraining Order Gives Disabled Child Emilio 19 More Days of Life at Catholic Hospital
By Hilary White
AUSTIN,
March 22, 2007 (LifeSiteNews.com) -
Emilio Gonzales has been given a reprieve by a restraining order to prevent a Catholic hospital from removing his respirator in ten days, as planned. Officials at the hospital have agreed to continue his care until at least April 10.The hospital's decision came after Emilio's mother, Catarina Gonzales filed a restraining order to require the hospital to continue her infant son's treatment, which consists of a respirator and feeding tube. She hopes the extra time will be sufficient to find another hospital willing to continue Emilio's care but so far facilities in Texas, Oklahoma, California and New York have all turned down her requests.
Gonzales was told by the Brackenridge Children's Hospital of Austin, March 12, that she had ten days to find another care facility or they would turn off Emilio's respirator. Brackenridge is part of the Seton Catholic health care system.Doctors have said that that Emilio's treatment is "medically inappropriate" although they have admitted that without the assisted breathing and nutrition and hydration, the child, who was born blind and deaf and suffers from Leigh's Disease, would die within days. "This care is medically inappropriate," said committee member Michael Regier. "The aggressive care that this infant is receiving is causing suffering, harm to the infant and without clinical benefit, and that should be discontinued."
Texas is one of two states with a "futile care" law that allows physicians to discontinue life-saving treatment without the consent of patients. Texas legislators are currently considering changing the law to require medical facilities to maintain such treatment until families can find alternate care arrangements. Leigh's disease is an incurable neurometabolic disorder that affects the central nervous system leading to loss of motor control and frequently to eventual respiratory, kidney and heart failure. Sufferers can live as long as may live to be 6 or 7 years of age. Some have survived to their mid-teenage years. Emilio is now 16 months old."I'm scared, because I don't want to lose my son, because I know he's moving," said Catarina. "I wish people could see him.""My biggest concern is the lack of time, which has always been my concern with this particular statute, because 10 days is simply not enough time in a situation like this to find another transfer," said Catarina's attorney, Jerri Ward told KXAN, a local NBC news affiliate.If the hospital does not grant an extension, the next step is a court hearing Wednesday.
Read previous LifeSiteNews.com coverage:
Mother Given 10 Days to Find New Hospital For Sick Child or Hospital Will Remove Respirator http://www.lifesite.net/ldn/2007/mar/07032102.html
Monday, March 19, 2007
Autism Updates
There is a good deal of new news on the autism spectrum front. There is info on childhood autism, as well as some medical professionals developing some insight on autism, based upon new technology such as YouTube.
New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)
Here are other hyperlinks:
http://www.troyrecord.com/site/news.cfm?newsid=18042693&BRD=1170&PAG=461&dept_id=7021&rfi=6
http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070306/NEWS01/703060316/1002/NEWS
http://timesunion.com/AspStories/storyprint.asp?StoryID=569247
http://www.timesunion.com/AspStories/story.asp?storyID=568457&category=OPINION&newsdate=3/4/2007
----------------
Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9
Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.
Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.
Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.
New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)
Here are other hyperlinks:
http://www.troyrecord.com/site/news.cfm?newsid=18042693&BRD=1170&PAG=461&dept_id=7021&rfi=6
http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070306/NEWS01/703060316/1002/NEWS
http://timesunion.com/AspStories/storyprint.asp?StoryID=569247
http://www.timesunion.com/AspStories/story.asp?storyID=568457&category=OPINION&newsdate=3/4/2007
----------------
Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9
Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.
Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.
Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.
The Ashley Treatment and Bioethics
This is an interesting article, looking at the discussion around Ashley Treatment, and its ramification for journalism. As an American, we dropped the ball on this one-- the Brits are the ones who put it into the public forum, giving it light and air. However, the American activist community has been diligent in keeping this on the radar, and holding decision makers in the medical professions responsible for devaluation of lives of people with disabilities.
We need to make sure journalist keep to their professional obligations of the public's right to know...
------------------
After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow
The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?
To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.
RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents
"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro
" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan
In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?
Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.
All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.
Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?
So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?
So future coverage ideas:
a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.
What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.
It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.
How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.
How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.
People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.
What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.
We need to make sure journalist keep to their professional obligations of the public's right to know...
------------------
After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow
The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?
To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.
RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents
"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro
" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan
In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?
Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.
All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.
Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?
So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?
So future coverage ideas:
a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.
What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.
It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.
How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.
How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.
People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.
What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.
Tuesday, March 06, 2007
EP Position on the Ashley Treatment & other misguided ideals
Exceptional Parent Magazine Position Statement to Organizations
When the Slippery Slope Becomes a Mudslide
This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor
In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.
Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.
As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.
The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.
EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?
It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.
It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."
Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:
* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.
* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:
- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights
* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.
* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.
* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________
When the Slippery Slope Becomes a Mudslide
This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor
In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.
Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.
As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.
The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.
EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?
It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.
It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."
Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:
* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.
* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:
- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights
* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.
* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.
* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________
Sunday, February 25, 2007
Reauthorize Individuals with Disabilities Education Act [IDEA]-- Comments Sought
Parents, advocates and school staff:
Please send comments on the need to reauthorize Individuals with Disabilities Education Act [IDEA]. This is the basis of most special education plans, programming as well as building based services and accommodations.
Let your legislators know that you want this Act to stay in place to educate children with disabilities.
----------
Improving Youths with Disabilities Outcomes for Postsecondary and Employment
John H. Hager, assistant secretary of the Office of SpecialEducation and Rehabilitative Services (OSERS), U.S. Department ofEducation, is pleased to share with you an important message regarding a Notice of Proposed Priority and Definitions for Special Demonstration Programs-Model Demonstration Projects-Improving the Postsecondary and Employment Outcomes of Youths with Disabilities.
----------------------------------------------------------
The 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA) called for states to set measurable targets for the progress of students with disabilities. Together with the No Child Left Behind Act, the IDEA is holding schools accountable for making sure students with disabilities achieve to high standards. We must ensure that all individuals, including individuals with disabilities, graduate from high school with theskills they need to successfully transition into post secondary education and the workforce.Youths with disabilities face significant challenges both in the school environment and in their transitions to adult life.National studies and reports have shown that, compared to their non-disabled peers, students with disabilities are less likely to receive a regular high school diploma; drop out twice as often; enroll in and complete postsecondary education programs at half the rate; and, up to two years after leaving high school, aboutfour in 10 youths with disabilities are employed as compared to six in 10 same-age out-of-school youths in the general population.
These and other related findings on the secondary and postsecondary outcomes of youths with disabilities have spurred federal and state efforts to improve transition policies and practices.Federal and state efforts to improve the postschool outcomes ofyouths with disabilities have resulted in some important gains over the past decade, including graduation rates, enrollment in postsecondary education and the number of youths entering theworkforce; however, despite these gains, far too many youths with disabilities continue to experience difficulties in achieving successful post-school outcomes. We are making progress, but we still have work to do.
Toward that end, I am excited to share with you the Federal Register notice inviting public comment on the Notice of Proposed Priority and Definitions under the Rehabilitation Services Administration's Special Demonstration Programs Model Demonstration Projects Improving the Postsecondary and Employment Outcomes of Youths With Disabilities. This priority is intended to improve the post-school and employment outcomes of youths with disabilities. We invite you to submit comments to help ensure that it does.
The NPP is open for public comment until Mar. 19, 2007.
Sincerely,
John H. Hager
Assistant SecretaryOffice of Special Education and Rehabilitative Services
U.S. Department of Education
--------------------------------
Please send comments on the need to reauthorize Individuals with Disabilities Education Act [IDEA]. This is the basis of most special education plans, programming as well as building based services and accommodations.
Let your legislators know that you want this Act to stay in place to educate children with disabilities.
----------
Improving Youths with Disabilities Outcomes for Postsecondary and Employment
John H. Hager, assistant secretary of the Office of SpecialEducation and Rehabilitative Services (OSERS), U.S. Department ofEducation, is pleased to share with you an important message regarding a Notice of Proposed Priority and Definitions for Special Demonstration Programs-Model Demonstration Projects-Improving the Postsecondary and Employment Outcomes of Youths with Disabilities.
----------------------------------------------------------
The 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA) called for states to set measurable targets for the progress of students with disabilities. Together with the No Child Left Behind Act, the IDEA is holding schools accountable for making sure students with disabilities achieve to high standards. We must ensure that all individuals, including individuals with disabilities, graduate from high school with theskills they need to successfully transition into post secondary education and the workforce.Youths with disabilities face significant challenges both in the school environment and in their transitions to adult life.National studies and reports have shown that, compared to their non-disabled peers, students with disabilities are less likely to receive a regular high school diploma; drop out twice as often; enroll in and complete postsecondary education programs at half the rate; and, up to two years after leaving high school, aboutfour in 10 youths with disabilities are employed as compared to six in 10 same-age out-of-school youths in the general population.
These and other related findings on the secondary and postsecondary outcomes of youths with disabilities have spurred federal and state efforts to improve transition policies and practices.Federal and state efforts to improve the postschool outcomes ofyouths with disabilities have resulted in some important gains over the past decade, including graduation rates, enrollment in postsecondary education and the number of youths entering theworkforce; however, despite these gains, far too many youths with disabilities continue to experience difficulties in achieving successful post-school outcomes. We are making progress, but we still have work to do.
Toward that end, I am excited to share with you the Federal Register notice inviting public comment on the Notice of Proposed Priority and Definitions under the Rehabilitation Services Administration's Special Demonstration Programs Model Demonstration Projects Improving the Postsecondary and Employment Outcomes of Youths With Disabilities. This priority is intended to improve the post-school and employment outcomes of youths with disabilities. We invite you to submit comments to help ensure that it does.
The NPP is open for public comment until Mar. 19, 2007.
Sincerely,
John H. Hager
Assistant SecretaryOffice of Special Education and Rehabilitative Services
U.S. Department of Education
--------------------------------
The World of Autism-- the Dark Side
No matter what services are available, and improvements in quality and quantity, we must be ever vigilant...
-------------------
Men Charged After Autistic Boy Dies in Van
Schenectady Center Resident Allegedly abused in 2004 at previous school
By MICHELE MORGAN BOLTON and TIM O'BRIEN, Staff writers
Friday, Februa 16, 2007
COLONIE -- The 13-year-old child who died while being transported from the O.D. Heck Developmental Center was the same boy who was allegedly abused while a resident of the Anderson School in Dutchess County in 2004, his parents confirmed to the Times Union today.
Mike and Lisa Carey said authorities told them their son, Jonathan, was inappropriately restrained by two O.D. Heck workers in a transport van Thursday night going through Colonie and couldn't be revived.
``We are devastated,'' Mike Carey sobbed. ``He was such a special human being. Jonathan loved Jesus. And maybe this is the Lord's way of getting Jonathan's law passed as soon as possible.'' The two center employees -- identified by town police as Edwin Tirado, 35, of 1634 6th Ave., Schenectady, and Nadeem Mall, 32, 9 Plaske Drive, Schenectady -- have been charged with second-degree manslaughter. The two men drove around for 1 1/2 hours after the boy stopped breathing said Colonie Police Chief Steven Heider in an afternoon press conference. They went to a Hess Mart for drinks and then drove to a toy store in Mohawk Commons, a short distance from O.D. Heck, to buy a video game and drop it off at Tirado's Schenectady home.
Mall was driving a van to take the 13-year-old and a 14-year-old patient from O.D. Heck to Crossgates Mall. They first stopped at the Hannaford on Wolf Road so that Mall could get cash from an ATM. When he returned, Heider said, Tirado was restraining the boy in the back seat of the van. The boy soon stopped breathing. ``The two adults rendered no aid and they did not return to O.D. Heck for an hour and a half,'' Heider said. More than two hours after they left for the mall, they finally returned and told O.D. Heck workers they had a medical emergency. Efforts were made to revive the boy there, and he was then taken to St. Claire's Hospital where he was pronounced dead.
``The 13-year-old succumbed to what we're alleging were improper and wrongful holds placed on him,'' Heider said. Tirado, who had worked at the agency for six years, was the person restraining him, but Mall had an equal responsibility for failing to provide or get medical assistance, he said. The combination of the improper hold, and their failure to either provide or seek medical attention, resulted in the manslaughter charge, he said. The Times Union profiled the Careys earlier this year and their quest to not only learn who had physically abused the severely autistic and mentally retarded boy at the Dutchess County facility but also get his records unsealed. Jonathan was nonverbal and couldn't tell them himself. That law, he said, would give families the right to access their own children's records to be sure the state is held accountable for their care.
-------------------
Men Charged After Autistic Boy Dies in Van
Schenectady Center Resident Allegedly abused in 2004 at previous school
By MICHELE MORGAN BOLTON and TIM O'BRIEN, Staff writers
Friday, Februa 16, 2007
COLONIE -- The 13-year-old child who died while being transported from the O.D. Heck Developmental Center was the same boy who was allegedly abused while a resident of the Anderson School in Dutchess County in 2004, his parents confirmed to the Times Union today.
Mike and Lisa Carey said authorities told them their son, Jonathan, was inappropriately restrained by two O.D. Heck workers in a transport van Thursday night going through Colonie and couldn't be revived.
``We are devastated,'' Mike Carey sobbed. ``He was such a special human being. Jonathan loved Jesus. And maybe this is the Lord's way of getting Jonathan's law passed as soon as possible.'' The two center employees -- identified by town police as Edwin Tirado, 35, of 1634 6th Ave., Schenectady, and Nadeem Mall, 32, 9 Plaske Drive, Schenectady -- have been charged with second-degree manslaughter. The two men drove around for 1 1/2 hours after the boy stopped breathing said Colonie Police Chief Steven Heider in an afternoon press conference. They went to a Hess Mart for drinks and then drove to a toy store in Mohawk Commons, a short distance from O.D. Heck, to buy a video game and drop it off at Tirado's Schenectady home.
Mall was driving a van to take the 13-year-old and a 14-year-old patient from O.D. Heck to Crossgates Mall. They first stopped at the Hannaford on Wolf Road so that Mall could get cash from an ATM. When he returned, Heider said, Tirado was restraining the boy in the back seat of the van. The boy soon stopped breathing. ``The two adults rendered no aid and they did not return to O.D. Heck for an hour and a half,'' Heider said. More than two hours after they left for the mall, they finally returned and told O.D. Heck workers they had a medical emergency. Efforts were made to revive the boy there, and he was then taken to St. Claire's Hospital where he was pronounced dead.
``The 13-year-old succumbed to what we're alleging were improper and wrongful holds placed on him,'' Heider said. Tirado, who had worked at the agency for six years, was the person restraining him, but Mall had an equal responsibility for failing to provide or get medical assistance, he said. The combination of the improper hold, and their failure to either provide or seek medical attention, resulted in the manslaughter charge, he said. The Times Union profiled the Careys earlier this year and their quest to not only learn who had physically abused the severely autistic and mentally retarded boy at the Dutchess County facility but also get his records unsealed. Jonathan was nonverbal and couldn't tell them himself. That law, he said, would give families the right to access their own children's records to be sure the state is held accountable for their care.
Wednesday, February 21, 2007
The World of Autism
There have been a number of articles and updates on the Autism Spectrum Front. Check out the latest research on the genetic level http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://news.bbc.co.uk/2/low/health/6369347.stm
This is progress of a sort, but not really helpful in the short term for parents, family and people with the spectrum. Gene links--genetic markers-- how does that help someone know not to go out a window, fire burns or how to look someone in the eyes when they talk? (Sigh)
60 Minutes also did a piece on autism research, which I didn't get to see. But it looks like more science experiments on people with disabilities. Check it out, and see what you think:
www.cbsnews.com/stories/1998/07/08/60minutes/main13502.shtml
A video and a text version of the story will be posted there as well after it airs.
There is also some good news-- of a sort. A study that being a sibling of a child or children with a disability does not psychologically scar you for life. http://www.nytimes.com/2007/02/18/magazine/18autistic.t.html?ex=1172466000&en=50b0fa56f2c82f04&ei=5065&partner=MYWAY
That was the old rationale for putting kids 'in the home'-- protect the abled bodied children. Now research shows it doesn't hurt, sometimes it makes a more sensitive, caring sibling, and sometimes sibs end of stressed and neurotic.
A mixed bag-- just like being anyone's sibling...
This is progress of a sort, but not really helpful in the short term for parents, family and people with the spectrum. Gene links--genetic markers-- how does that help someone know not to go out a window, fire burns or how to look someone in the eyes when they talk? (Sigh)
60 Minutes also did a piece on autism research, which I didn't get to see. But it looks like more science experiments on people with disabilities. Check it out, and see what you think:
www.cbsnews.com/stories/1998/07/08/60minutes/main13502.shtml
A video and a text version of the story will be posted there as well after it airs.
There is also some good news-- of a sort. A study that being a sibling of a child or children with a disability does not psychologically scar you for life. http://www.nytimes.com/2007/02/18/magazine/18autistic.t.html?ex=1172466000&en=50b0fa56f2c82f04&ei=5065&partner=MYWAY
That was the old rationale for putting kids 'in the home'-- protect the abled bodied children. Now research shows it doesn't hurt, sometimes it makes a more sensitive, caring sibling, and sometimes sibs end of stressed and neurotic.
A mixed bag-- just like being anyone's sibling...
Tuesday, February 13, 2007
Ashley Treatment Update
I had a prior post regarding the protest in Chicago by the activist groups FRIDA. (The group Not Dead Yet and ADAPT, both disability civil rights activist group, protested with FRIDA at the American Medical Association headquarters.)
The latest developments-- the AMA has agreed to a meeting, to discuss concerns over the ethics of the Ashley Treatment.
The latest developments-- the AMA has agreed to a meeting, to discuss concerns over the ethics of the Ashley Treatment.
Thursday, February 08, 2007
A Disability Community Thumbs Up to...
1. The Fallen Heroes Center
A world-class state-of-the-art physical rehabilitation facility for wounded warrior opened January 29, 2007. http://www.fallenheroesfund.org/The Center will serve military personnel who have been catastrophically disabled in operations in Iraq and Afghanistan. The Center will also serve military personnel and veterans severely injured in other operations and in the normal performance of their duties, combat and non-combat related."
2. End of use of term Mental Retardation by influential journal
After almost 5 decades of beingcalled Mental Retardation, this influential journal in special education changed names to Intellectual & Developmental Disabilities under the leadership of Editor Steven J. Taylor. The journal's name change is a microcosm of society's ongoing struggle to find a socially acceptable way of addressing persons with an intellectual disability. The new name comes close on the heels of the name change of its publisher, the American Association onIntellectual and Developmental Disabilities, formerly AAMR, the world's oldest organization representing professionals in developmental disabilities.
For all those who ask, "What's in a name?" Dr. Taylor says, "The term intellectual and developmental disabilities is simply less stigmatizing than mental retardation, mental deficiency, feeble-mindedness, idiocy, imbecility, and other terminology we have cast aside over the years." However, Taylor acknowledges that the crux of the issue here goes beyond language and terminology into the deeper issues of inclusion and acceptance of people with intellectual disabilities in society. He explains, "Anyone whobelieves that we have finally arrived at the perfect terminology will be proven wrong by history. I am sure that at some future point we will find the phrase intellectual and developmental disabilities to be inadequate and demeaning."
3. Braille Making a Comeback
In March 2007, blind grade-school students from across New England will travelto Newton to test their skill in reading Braille. The competition, called the Braille Challenge, measures students' Braille reading speed and accuracy,with the top finishers in the regional events going on to national finals this June in Los Angeles.
The Braille Challenge is in its sixth year, and there's been a steady rise in the number of competitors. It's a sign of a growing resurgence in Braille, a writing system that not so long ago seemed headed toward extinction.
A world-class state-of-the-art physical rehabilitation facility for wounded warrior opened January 29, 2007. http://www.fallenheroesfund.org/The Center will serve military personnel who have been catastrophically disabled in operations in Iraq and Afghanistan. The Center will also serve military personnel and veterans severely injured in other operations and in the normal performance of their duties, combat and non-combat related."
2. End of use of term Mental Retardation by influential journal
After almost 5 decades of beingcalled Mental Retardation, this influential journal in special education changed names to Intellectual & Developmental Disabilities under the leadership of Editor Steven J. Taylor. The journal's name change is a microcosm of society's ongoing struggle to find a socially acceptable way of addressing persons with an intellectual disability. The new name comes close on the heels of the name change of its publisher, the American Association onIntellectual and Developmental Disabilities, formerly AAMR, the world's oldest organization representing professionals in developmental disabilities.
For all those who ask, "What's in a name?" Dr. Taylor says, "The term intellectual and developmental disabilities is simply less stigmatizing than mental retardation, mental deficiency, feeble-mindedness, idiocy, imbecility, and other terminology we have cast aside over the years." However, Taylor acknowledges that the crux of the issue here goes beyond language and terminology into the deeper issues of inclusion and acceptance of people with intellectual disabilities in society. He explains, "Anyone whobelieves that we have finally arrived at the perfect terminology will be proven wrong by history. I am sure that at some future point we will find the phrase intellectual and developmental disabilities to be inadequate and demeaning."
3. Braille Making a Comeback
In March 2007, blind grade-school students from across New England will travelto Newton to test their skill in reading Braille. The competition, called the Braille Challenge, measures students' Braille reading speed and accuracy,with the top finishers in the regional events going on to national finals this June in Los Angeles.
The Braille Challenge is in its sixth year, and there's been a steady rise in the number of competitors. It's a sign of a growing resurgence in Braille, a writing system that not so long ago seemed headed toward extinction.
AAPD Online Forum Launched
Starting February 1, AAPD will join some of the nations leading legal analysts and commentators in regularly weighing in on the issues making headlines in a new online blog and discussion forumcalled Talking Justice, at www.justicetalking.org. The new feature is a project of Justice Talking, the award-winning NPR program that airs in nearly 100 public radio markets and in 140 countries around the globe via NPR Worldwide and Armed ForcesRadio Network.
Each day of the week, a new, timely commentary from a distinguished contributor will be posted at Talking Justice. Bloggers from organizations as diverse as the American Tort ReformAssociation, the Natural Resources Defense Council, the Family Research Council, the National Council of Churches, the Council on American-Islamic Relations, the National District Attorneys Association and the satirical group the Capitol Steps will offer up their views about law and American life. Some of the best legal blogs, websites and newspapers, including SCOTUSBlog, FindLaw, theNational Law Journal and Jurist will post content as well. AAPD will be featured on the 13th day of the month but has also put upan initial post just yesterday.
That initial post, entitledKeeping the World Safe for Disability, can be viewed at:http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://communities.justicetalking.org/blogs/day13/default.aspxListeners and readers also are invited to participate in thedebate via discussion forums centered around topics aired onJustice Talking programs. Justice Talking, hosted by veteran NPR correspondent Margot Adler,has won 18 national journalism awards. Each program features intelligent conversation with activists and analysts, personalstories of those affected by the law, and lively debate on todays legal issues. A project of the Annenberg Public Policy Center ofthe University of Pennsylvania, Justice Talking is made possible with the support of the Annenberg Foundation.We invite you to visit the Talking Justice blogs upon its launch, and offer your feedback at comments@justicetalking.org or 215-573-8919. You can stay up to date on whats happening on the show bysigning up for their weekly podcasts or e-newsletter athttp://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://www.justicetalking.org. And be sure to check in on the 13th of each month to see the latest contribution from AAPD.
Each day of the week, a new, timely commentary from a distinguished contributor will be posted at Talking Justice. Bloggers from organizations as diverse as the American Tort ReformAssociation, the Natural Resources Defense Council, the Family Research Council, the National Council of Churches, the Council on American-Islamic Relations, the National District Attorneys Association and the satirical group the Capitol Steps will offer up their views about law and American life. Some of the best legal blogs, websites and newspapers, including SCOTUSBlog, FindLaw, theNational Law Journal and Jurist will post content as well. AAPD will be featured on the 13th day of the month but has also put upan initial post just yesterday.
That initial post, entitledKeeping the World Safe for Disability, can be viewed at:http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://communities.justicetalking.org/blogs/day13/default.aspxListeners and readers also are invited to participate in thedebate via discussion forums centered around topics aired onJustice Talking programs. Justice Talking, hosted by veteran NPR correspondent Margot Adler,has won 18 national journalism awards. Each program features intelligent conversation with activists and analysts, personalstories of those affected by the law, and lively debate on todays legal issues. A project of the Annenberg Public Policy Center ofthe University of Pennsylvania, Justice Talking is made possible with the support of the Annenberg Foundation.We invite you to visit the Talking Justice blogs upon its launch, and offer your feedback at comments@justicetalking.org or 215-573-8919. You can stay up to date on whats happening on the show bysigning up for their weekly podcasts or e-newsletter athttp://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://www.justicetalking.org. And be sure to check in on the 13th of each month to see the latest contribution from AAPD.
Recruiters Seek Disabled Students
A fad or a real attempt to level the employment playing field for people with disabilities? You decide.
---------------------------------------
Untapped' pool of potential employees called on to fill posts
By Jimmy Tobias
January 30, 2007
As Fortune 500 companies continue to diversify their offices with different types of top-tier students, candidates with disabilities may prove to be the next target audience.Last week, PepsiCo - the parent company of Pepsi, Frito-Lay and Tropicana -visited the University specifically to recruit students with disabilities,both physical and mental, for employment positions.The recruitment effort, which included a dinner and formal presentation, was facilitated by Morris Street Partners, a New York-based organization that currently has projects with PepsiCo and Merrill Lynch and aims to increasethe number of disabled persons in the corporate workplace.To help companies draw in students with disabilities, Morris Street Partnershosts events that are just like standard on-campus recruitment ones but are exclusive - and tailored - to disabled students.Last week's initiative was PepsiCo's first disability-focused recruitment project with Morris Street Partners, said PepsiCo Director of ExecutiveStaffing John Delpino, who heard about Morris Street Partners through a disabled executive at PepsiCo.After deciding to "get [their] tail wet," Delpino said, PepsiCo officials deemed the disabled a "very important population" and decided to go afterit.And those students taking advantage of Morris Street Partners' services are singing the company's praises."The idea behind the company is inspiring," said College freshman Julie Gutowksi, who does marketing for the company on campus."Hopefully, [it] will take hold on college campuses, as well as in the business world," she said.Gutowksi began working at Morris Street Partners after attending one oftheir recruitment sessions last semester with Merrill Lynch.One Wharton senior, who is currently utilizing Morris Street Partners'services - and who refused to disclose her name because of the sensitive nature of her own disability, an auditory- processing disorder that impairshearing - is currently in the early stages of recruitment at PepsiCo. She called Morris Street Partners' work "very insightful," adding that, "aslong as the disability does not affect [the person's] performance as an employee," why not hire them?
Still, officials at Morris Street Partners say they are not offering these services just for the sake of being considerate."It is not about being nice - it is about being smart," said Susan Lang, theCEO of Morris Street Partners.Lang added that the non-profit organization approaches its work from abusiness perspective.Rich Donovan, who started the organization last March, added that "Morris basically aims to bring disabled individuals into the market economy."Donovan, who has cerebral palsy, called the disabled a significant national minority and pointed out that "this is something that hasn't been attempted before in a meaningful way."Morris Street Partners is active on five campuses and is in contact with 15 others. It will return to campus next year with a new, although not-yet-chosen, name.Career Services, which typically organizes on-campus recruitment events,advertised this event, but most of the planning was done by Morris StreetPartners themselves, Barbara Hewitt, associate director of Career Services,wrote in an e-mail.
The Daily Pennsylvanian
---------------------------------------
Untapped' pool of potential employees called on to fill posts
By Jimmy Tobias
January 30, 2007
As Fortune 500 companies continue to diversify their offices with different types of top-tier students, candidates with disabilities may prove to be the next target audience.Last week, PepsiCo - the parent company of Pepsi, Frito-Lay and Tropicana -visited the University specifically to recruit students with disabilities,both physical and mental, for employment positions.The recruitment effort, which included a dinner and formal presentation, was facilitated by Morris Street Partners, a New York-based organization that currently has projects with PepsiCo and Merrill Lynch and aims to increasethe number of disabled persons in the corporate workplace.To help companies draw in students with disabilities, Morris Street Partnershosts events that are just like standard on-campus recruitment ones but are exclusive - and tailored - to disabled students.Last week's initiative was PepsiCo's first disability-focused recruitment project with Morris Street Partners, said PepsiCo Director of ExecutiveStaffing John Delpino, who heard about Morris Street Partners through a disabled executive at PepsiCo.After deciding to "get [their] tail wet," Delpino said, PepsiCo officials deemed the disabled a "very important population" and decided to go afterit.And those students taking advantage of Morris Street Partners' services are singing the company's praises."The idea behind the company is inspiring," said College freshman Julie Gutowksi, who does marketing for the company on campus."Hopefully, [it] will take hold on college campuses, as well as in the business world," she said.Gutowksi began working at Morris Street Partners after attending one oftheir recruitment sessions last semester with Merrill Lynch.One Wharton senior, who is currently utilizing Morris Street Partners'services - and who refused to disclose her name because of the sensitive nature of her own disability, an auditory- processing disorder that impairshearing - is currently in the early stages of recruitment at PepsiCo. She called Morris Street Partners' work "very insightful," adding that, "aslong as the disability does not affect [the person's] performance as an employee," why not hire them?
Still, officials at Morris Street Partners say they are not offering these services just for the sake of being considerate."It is not about being nice - it is about being smart," said Susan Lang, theCEO of Morris Street Partners.Lang added that the non-profit organization approaches its work from abusiness perspective.Rich Donovan, who started the organization last March, added that "Morris basically aims to bring disabled individuals into the market economy."Donovan, who has cerebral palsy, called the disabled a significant national minority and pointed out that "this is something that hasn't been attempted before in a meaningful way."Morris Street Partners is active on five campuses and is in contact with 15 others. It will return to campus next year with a new, although not-yet-chosen, name.Career Services, which typically organizes on-campus recruitment events,advertised this event, but most of the planning was done by Morris StreetPartners themselves, Barbara Hewitt, associate director of Career Services,wrote in an e-mail.
The Daily Pennsylvanian
Saturday, February 03, 2007
Paretal Tool Kit for Children with Disbilities
New CD Released: Tool Kit on Teaching and Assessing StudentsWith Disabilities: Parents' Materials"John H. Hager, assistant secretary of the Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education, is pleased to share with you an important message abouta newly released CD, Tool Kit on Teaching and Assessing Students With Disabilities: Parents' Materials.
----------------------------------------------------------
I am pleased to announce the release of a CD version of the ToolKit on Teaching and Assessing Students with Disabilities: Parents' Materials designed to assist parents and states in their effortsto work together to raise the achievement of all students with disabilities.The Parent Tool Kit compiles materials identified to augment the previously released CD, Tool Kit on Teaching and Assessing Students with Disabilities, and offers a collection of resources on the same substantive areas addressed, including assessment, instructional practices, behavior and accommodations. These new documents were written specifically for parents and include information they need as they work with schools to ensure thattheir children are receiving a quality education. Materials included in the new Parent Tool Kit provide information that willhelp them become active and informed participants in IEP discussions and other decision-making meetings that support students with disabilities and their families.
To encourage broad dissemination of these materials, we havelaunched a new Web site, www.osepideasthatwork.org/index.asp,which includes the materials in the Parent Tool Kit. The website will continue to be updated with additional materials as they become available.This Parent Tool Kit is an example of the Department of Education's ongoing commitment to ensuring that states, local school districts, schools and families have the most current and relevant information about practices that will improve and enhance education opportunities for children with disabilities throughout the nation. We appreciate the time you commit and the work you doevery day to improve the academic achievement of students with disabilities and hope you find these materials useful in advancing achievement through strong accountability and assessments for all students.
John H. Hager
Assistant Secretary
Office of Special Education and Rehabilitative Services
U.S. Department of Education
----------------------------------------------------------
I am pleased to announce the release of a CD version of the ToolKit on Teaching and Assessing Students with Disabilities: Parents' Materials designed to assist parents and states in their effortsto work together to raise the achievement of all students with disabilities.The Parent Tool Kit compiles materials identified to augment the previously released CD, Tool Kit on Teaching and Assessing Students with Disabilities, and offers a collection of resources on the same substantive areas addressed, including assessment, instructional practices, behavior and accommodations. These new documents were written specifically for parents and include information they need as they work with schools to ensure thattheir children are receiving a quality education. Materials included in the new Parent Tool Kit provide information that willhelp them become active and informed participants in IEP discussions and other decision-making meetings that support students with disabilities and their families.
To encourage broad dissemination of these materials, we havelaunched a new Web site, www.osepideasthatwork.org/index.asp,which includes the materials in the Parent Tool Kit. The website will continue to be updated with additional materials as they become available.This Parent Tool Kit is an example of the Department of Education's ongoing commitment to ensuring that states, local school districts, schools and families have the most current and relevant information about practices that will improve and enhance education opportunities for children with disabilities throughout the nation. We appreciate the time you commit and the work you doevery day to improve the academic achievement of students with disabilities and hope you find these materials useful in advancing achievement through strong accountability and assessments for all students.
John H. Hager
Assistant Secretary
Office of Special Education and Rehabilitative Services
U.S. Department of Education
A Mad, Mad, Mad Disability World- A Thumbs Down to...
#1 The Dutch Dating Programme for the Visibly Disfigured
Reuters January 27, 2007
The Netherlands, the country that has pioneered reality shows like Big Brother, is planning a new first - a dating programme for the visibly disfigured. The broadcaster SBS 6 is seeking candidates for its Love at Second Sight show due to be launched on February 20. "Do you have a visible serious handicap and are you looking for a partner?" says an appeal on its website. "The programme is a platform for people with such problems to share experiences and feelings in a positive way with the rest of the Netherlands and to show that they are absolutely not pitiful," the broadcaster said.
"The main aim of the programme is to remove prejudice about these people, to create more acceptance and respect and, of course, to find the love of their lives." But the majority of Dutch viewers are turned off by the show that was initially set to be called Monster Love. A poll by the mass circulation De Telegraaf daily showed 85 per cent do not like the idea, with only 9 per cent in favour.
#2 DC/NYC bus driver Disallows Seeing Eye Dog
The Washington PostSunday, January 28, 2007
"No dog , no dog," shouted the driver and another worker when District resident Joe Orozco and his guide dog tried to board a Todays Bus fromWashington to New York. Orozco protested that the company is required by lawto accommodate service animals, but the workers continued to block his entryand laughed, he says, when he threatened to call police. Once he called police, the workers said he could ride if the dog was put in the bottom ofthe bus with the luggage. They relented after police came.When Orozco tried to board the return bus the next day, a Todays Bus employee in New York yanked his ticket away and tried to return his money,he says.The bus pulled away. After Orozco called police, workers said he could take the next bus but ordered him to sit in the back. He complied, but he is filing a complaint with the Justice Department, which enforces the AmericansWith Disabilities Act (ADA). Todays Bus did not respond to four telephone messages left for the manager and owner.
The ADA guarantees interstate service to disabled passengers; that includes providing access, with advance notice, to people in wheelchairs. But many ofthe companies that pick up passengers curbside -- the so-called "Chinatownbuses" -- simply ignore the law. In 2004, regulators checked 14 companiesthat operate between Washington and New York and cited 11 of them for violating the ADA. The Justice Department launched an investigation inOctober 2004."Wecontinue to work on it," spokeswoman Cynthia Magnuson said last week.Gathering evidence seems quick and easy to CoGo, who recently called Todays to ask about wheelchair access. The man who answered refused to give hisname, but his answer was clear: "No wheelchair."To register a complaint, call the Justice Department, 800-514-0301.__.
------
#3 The US Treasury Department for Keeping Money Inaccessible to the Blind
Hartford Courant, ConnecticutWednesday, January 24, 2007
Why Keep The Blind In Dark About Money?By CYRUS HABIB
Blind Americans may soon find themselves able to use money just like anyone else. That is unless the Treasury Department is successful this month in its appeal of a recent federal court order that paper currency be made recognizable to the blind, who are currently unable to distinguish onedenomination from another.I, for example, rely on the generosity of cab drivers, baristas and storeclerks each time I make a purchase with cash. That I have rarely been ripped off is a testament to their honesty or my charm, but I cannot help butprotest the perpetual necessity for either. After all, there are 180 countries in which this is not the case, because their currency is designed to be distinguishable by all.
U.S. District Judge James Robertson asked the Treasury Department to determine the best means of making money distinguishable by the blind,citing the myriad solutions proposed by the organization that filed thelawsuit, the American Council of the Blind. These included using raised ink, modifying the size of certain bills and producing a tactile mark to indicatea bill's denomination. The Treasury Department has objected to all such solutions, claiming that the $75 million price tag is simply too high. Of course, Treasury's lawyers fail to mention that the cost would have beenfar lower had the department acted voluntarily when the $20 bill was redesigned in 1998 and the $10 bill was modified last year. Instead, it has decided to spend our tax money fighting the blind in court, appealing Judge Robertson's decision even before a final judgment on the nature of asolution could be reached.
Blind people in the United States suffer from a staggering 70 percent unemployment rate, and a disproportionately high percentage of those who are employed work in the low end of the service sector. There is no questionthat the catastrophic poverty of America's blind requires a solution. Why not begin by giving us access to money at the most atomic level? How canblind Americans become truly independent, achieving the success we deserveand leaving behind the stigma of federal and state aid, without being able to differentiate between a dollar bill and a fifty?
The Treasury Department suggests using debit and credit cards, disregarding the fact that the lives of many blind Americans hinge upon financial exchanges for which plastic is often useless, such as catching a crosstown bus, purchasing a cup of coffee or getting change for laundry. These basic day-to-day experiences may not constitute reality for Treasury SecretaryHenry Paulson and his team, but they certainly do for millions of blind andlow-vision Americans. Some have called the lawsuit frivolous, arguing that blind people havemanaged to survive for years by relying on others for help. Such reasoning does more than ignore the overwhelming poverty and hardship that plague the blind community; it dishonors the sacrifices millions of disabled Americans made to help bring about passage of the landmark Americans With Disabilities Act.
Money is essential to a person's participation in society. Its accessibility to blind people should be considered as important as that ofwheelchair ramps or Braille in elevators.When it comes to accommodating disabilities such as blindness, let uscontinue to lead the world in practice as well as in principle. Moreimportant still, let us tell the world that we, too, believe that blindnessshould not be an obstacle to financial independence. In doing so, let usalso take a significant step toward ameliorating the living conditions of blind Americans, now and for years to come.The Treasury Department should obey Judge Robertson's order and show us themoney
Reuters January 27, 2007
The Netherlands, the country that has pioneered reality shows like Big Brother, is planning a new first - a dating programme for the visibly disfigured. The broadcaster SBS 6 is seeking candidates for its Love at Second Sight show due to be launched on February 20. "Do you have a visible serious handicap and are you looking for a partner?" says an appeal on its website. "The programme is a platform for people with such problems to share experiences and feelings in a positive way with the rest of the Netherlands and to show that they are absolutely not pitiful," the broadcaster said.
"The main aim of the programme is to remove prejudice about these people, to create more acceptance and respect and, of course, to find the love of their lives." But the majority of Dutch viewers are turned off by the show that was initially set to be called Monster Love. A poll by the mass circulation De Telegraaf daily showed 85 per cent do not like the idea, with only 9 per cent in favour.
#2 DC/NYC bus driver Disallows Seeing Eye Dog
The Washington PostSunday, January 28, 2007
"No dog , no dog," shouted the driver and another worker when District resident Joe Orozco and his guide dog tried to board a Todays Bus fromWashington to New York. Orozco protested that the company is required by lawto accommodate service animals, but the workers continued to block his entryand laughed, he says, when he threatened to call police. Once he called police, the workers said he could ride if the dog was put in the bottom ofthe bus with the luggage. They relented after police came.When Orozco tried to board the return bus the next day, a Todays Bus employee in New York yanked his ticket away and tried to return his money,he says.The bus pulled away. After Orozco called police, workers said he could take the next bus but ordered him to sit in the back. He complied, but he is filing a complaint with the Justice Department, which enforces the AmericansWith Disabilities Act (ADA). Todays Bus did not respond to four telephone messages left for the manager and owner.
The ADA guarantees interstate service to disabled passengers; that includes providing access, with advance notice, to people in wheelchairs. But many ofthe companies that pick up passengers curbside -- the so-called "Chinatownbuses" -- simply ignore the law. In 2004, regulators checked 14 companiesthat operate between Washington and New York and cited 11 of them for violating the ADA. The Justice Department launched an investigation inOctober 2004."Wecontinue to work on it," spokeswoman Cynthia Magnuson said last week.Gathering evidence seems quick and easy to CoGo, who recently called Todays to ask about wheelchair access. The man who answered refused to give hisname, but his answer was clear: "No wheelchair."To register a complaint, call the Justice Department, 800-514-0301.__.
------
#3 The US Treasury Department for Keeping Money Inaccessible to the Blind
Hartford Courant, ConnecticutWednesday, January 24, 2007
Why Keep The Blind In Dark About Money?By CYRUS HABIB
Blind Americans may soon find themselves able to use money just like anyone else. That is unless the Treasury Department is successful this month in its appeal of a recent federal court order that paper currency be made recognizable to the blind, who are currently unable to distinguish onedenomination from another.I, for example, rely on the generosity of cab drivers, baristas and storeclerks each time I make a purchase with cash. That I have rarely been ripped off is a testament to their honesty or my charm, but I cannot help butprotest the perpetual necessity for either. After all, there are 180 countries in which this is not the case, because their currency is designed to be distinguishable by all.
U.S. District Judge James Robertson asked the Treasury Department to determine the best means of making money distinguishable by the blind,citing the myriad solutions proposed by the organization that filed thelawsuit, the American Council of the Blind. These included using raised ink, modifying the size of certain bills and producing a tactile mark to indicatea bill's denomination. The Treasury Department has objected to all such solutions, claiming that the $75 million price tag is simply too high. Of course, Treasury's lawyers fail to mention that the cost would have beenfar lower had the department acted voluntarily when the $20 bill was redesigned in 1998 and the $10 bill was modified last year. Instead, it has decided to spend our tax money fighting the blind in court, appealing Judge Robertson's decision even before a final judgment on the nature of asolution could be reached.
Blind people in the United States suffer from a staggering 70 percent unemployment rate, and a disproportionately high percentage of those who are employed work in the low end of the service sector. There is no questionthat the catastrophic poverty of America's blind requires a solution. Why not begin by giving us access to money at the most atomic level? How canblind Americans become truly independent, achieving the success we deserveand leaving behind the stigma of federal and state aid, without being able to differentiate between a dollar bill and a fifty?
The Treasury Department suggests using debit and credit cards, disregarding the fact that the lives of many blind Americans hinge upon financial exchanges for which plastic is often useless, such as catching a crosstown bus, purchasing a cup of coffee or getting change for laundry. These basic day-to-day experiences may not constitute reality for Treasury SecretaryHenry Paulson and his team, but they certainly do for millions of blind andlow-vision Americans. Some have called the lawsuit frivolous, arguing that blind people havemanaged to survive for years by relying on others for help. Such reasoning does more than ignore the overwhelming poverty and hardship that plague the blind community; it dishonors the sacrifices millions of disabled Americans made to help bring about passage of the landmark Americans With Disabilities Act.
Money is essential to a person's participation in society. Its accessibility to blind people should be considered as important as that ofwheelchair ramps or Braille in elevators.When it comes to accommodating disabilities such as blindness, let uscontinue to lead the world in practice as well as in principle. Moreimportant still, let us tell the world that we, too, believe that blindnessshould not be an obstacle to financial independence. In doing so, let usalso take a significant step toward ameliorating the living conditions of blind Americans, now and for years to come.The Treasury Department should obey Judge Robertson's order and show us themoney
Sunday, January 28, 2007
Ehler-Danlos Syndrome should not be used for media titilation
There is a special this week on ABC (Medical Mysteries) about Ehler-Danlos Syndrome which is causing an uproar in the disability community. Read on and go to ABC's website and express your concerns and thoughts...
There is also a pre-formulated Action Alert for response:
https://secure2.convio.net/apf/site/Advocacy?%20%20pagename=homepage&page=SplashPage&id=201&JServSessionIdr001=2i1pn86n52.app6b
There is also a pre-formulated Action Alert for response:
https://secure2.convio.net/apf/site/Advocacy?%20%20pagename=homepage&page=SplashPage&id=201&JServSessionIdr001=2i1pn86n52.app6b
Wednesday, January 24, 2007
Assistive Technology Design Competition
For those who tinker in the basement, or have friends, family that do....
---------------------------------
Cash Prizes to be Awarded to Undergrads Designing AssistiveTechnology
First prize $5,000, Second prize $2400, and a Third prize $1200,will go to undergraduate students who successfully create aprototype of a new assistive technology/tool that enables peoplewith cognitive disabilities to accomplish activities of dailyliving more effectively and independently.
Letter of intent is dueThursday Feb. 1, 2007 and prototype is due Friday, June 1, 2007.
For submission instructions and more information follow the linkto the Student Research Competition at http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://www.rerc-act.org.Funded by the National Institute of Disability and RehabilitationResearch.
Source: Rehabilitation Engineering Research Center for theAdvancement of Cognitive Technologies (RERC-ACT)__________________________________________________________
For more news issues, see:http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://www.aapd.com/docs/news.php
---------------------------------
Cash Prizes to be Awarded to Undergrads Designing AssistiveTechnology
First prize $5,000, Second prize $2400, and a Third prize $1200,will go to undergraduate students who successfully create aprototype of a new assistive technology/tool that enables peoplewith cognitive disabilities to accomplish activities of dailyliving more effectively and independently.
Letter of intent is dueThursday Feb. 1, 2007 and prototype is due Friday, June 1, 2007.
For submission instructions and more information follow the linkto the Student Research Competition at http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://www.rerc-act.org.Funded by the National Institute of Disability and RehabilitationResearch.
Source: Rehabilitation Engineering Research Center for theAdvancement of Cognitive Technologies (RERC-ACT)__________________________________________________________
For more news issues, see:http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://www.aapd.com/docs/news.php
Thursday, January 18, 2007
The Importance of Penmanship...
I ran across another interesting article. http://www.time.com/time/health/article/0,8599,1578074,00.html
It has been documented that doctors:
1. do make mistakes
2. their mistakes kill people
Lesson:
1. everyone is accountable
2. the Internet is leveling the playing field of accountability
3. penmanship DOES count...
It has been documented that doctors:
1. do make mistakes
2. their mistakes kill people
Lesson:
1. everyone is accountable
2. the Internet is leveling the playing field of accountability
3. penmanship DOES count...
Disability Rights 2006- the year in review
Here is a list of top disability rights news stories from 2006, I would like to share. (Thanks to the Inclusion Daily Express)
http://www.inclusiondaily.com/news/top2006.htm
http://www.inclusiondaily.com/news/top2006.htm
Monday, January 15, 2007
Martin Luther King Jr. Day
Today is a national holiday, recognizing the contributions of Martin Luther King, Jr. to peace, freedom and Civil Rights. A lot of people think the civil rights era is long gone--ancient history. But there are those who keep the flame of civil rights and non-violent activism alive and well in the disability and activism communities.
Click on some of the links, and learn a bit more about MLK and what you can do to promote peace and justice at home.
Click on some of the links, and learn a bit more about MLK and what you can do to promote peace and justice at home.
Thursday, January 11, 2007
Disability Community is Taking Action on the Ashley Treatment!
ACTION ALERT! STOP THE ASHLEY TREATMENT!
BACKGROUND:
Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Children’s Hospital are having her undergo hormone “therapy” to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The “Ashley Treatment,” as her parents call it, is a medical “fix” to serious social problems we face in America today.
The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, “When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.” Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, urges you to speak out about the “Ashley Treatment.”Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital. We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.
ACTION:
Email OR Call the people below.
Tell them to:
-Oppose their permission of what is now known as the “Ashley Treatment,” and
-Condemn further permission of such “treatments” for children with disabilities.
Dr. Douglas DiekemaPhone: 206-987-2380B-5520 – Emergency Medicine4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Douglas.diekema@seattlechildrens.org
Dr. Daniel F. GuntherPhone: (206) 987-2380M1-3 – Endocrinology4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Dan.gunther@seattlechildrens.org
Melinda GatesPO Box 23350Seattle, WA 98102Phone: (206) 709-3100Fax: (206) 709-3252Email: info@gatesfoundation.org
Susan MacekDirector of Communications, Seattle Children’s HospitalPhone: (206) 987-5201Pager: (206) 469-6310E-mail: susan.macek@seattlechildrens.org
OTHER INFORMATION
To review Ashley’s parents’ blog, please see:http://ashleytreatment.spaces.live.com/
To review other articles on this topic, please see:http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stmhttp://www.dredf.org/news/in_news.shtml
BACKGROUND:
Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Children’s Hospital are having her undergo hormone “therapy” to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The “Ashley Treatment,” as her parents call it, is a medical “fix” to serious social problems we face in America today.
The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, “When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.” Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, urges you to speak out about the “Ashley Treatment.”Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital. We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.
ACTION:
Email OR Call the people below.
Tell them to:
-Oppose their permission of what is now known as the “Ashley Treatment,” and
-Condemn further permission of such “treatments” for children with disabilities.
Dr. Douglas DiekemaPhone: 206-987-2380B-5520 – Emergency Medicine4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Douglas.diekema@seattlechildrens.org
Dr. Daniel F. GuntherPhone: (206) 987-2380M1-3 – Endocrinology4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Dan.gunther@seattlechildrens.org
Melinda GatesPO Box 23350Seattle, WA 98102Phone: (206) 709-3100Fax: (206) 709-3252Email: info@gatesfoundation.org
Susan MacekDirector of Communications, Seattle Children’s HospitalPhone: (206) 987-5201Pager: (206) 469-6310E-mail: susan.macek@seattlechildrens.org
OTHER INFORMATION
To review Ashley’s parents’ blog, please see:http://ashleytreatment.spaces.live.com/
To review other articles on this topic, please see:http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stmhttp://www.dredf.org/news/in_news.shtml
Wednesday, January 10, 2007
MS General Information
There are some links to a variety of topics about MS. Please feel free to share these with anyone who may need it.
----
( http://www.webmd/. <http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Arm Yourself against MS_
( http://www.webmd/. <http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) Learn new therapies to help you_ manage your symptoms._ ( http://www.webmd/.
<http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Vaccine to Reverse the Effects of MS _
( http://www.webmd/. <http://www.webmd.com/content/pages/26/115077.htm> com/content/pages/26/115077.htm) _Get WebMD-trusted information when you Google!_
( http://www.webmd/. <http://www.webmd.com/content/pages/26/114984.htm> com/content/pages/26/114984.htm) _Early Results Promising for MS Drug_
( http://www.webmd/. <http://www.webmd.com/content/article/127/116686.htm> com/content/article/127/116686.htm) _Treating the Patient, Not Just the Pain_
( http://www.webmd/. <http://www.webmd.com/content/article/121/114108.htm> com/content/article/121/114108.htm) _Controlling a Relapse_ ( http://www.webmd/.
<http://www.webmd.com/hw/multiple_sclerosis/hw191022.asp> com/hw/multiple_sclerosis/hw191022.asp) _Join the MS message board_ ( http://boards/.
<http://boards.webmd.com/topic.asp?topic_id=59> webmd.com/topic.asp?topic_id=59) _Quiz: Living Well with MS_ ( http://www.webmd/.
<http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Don't Let Overactive Bladder Embarrass You_
( http://www.webmd/. <http://www.webmd.com/content/tools/1/quiz_quality_of_life.htm> com/content/tools/1/quiz_quality_of_life.htm) _Romance, dating with MS: No need to hide_
( http://www.webmd/. <http://www.webmd.com/content/Article/120/113800.htm> com/content/Article/120/113800.htm) _Diagnosis MS: Early Treatment is Best_
( http://www.webmd/. <http://www.webmd.com/solutions/diagnosis-multiple-sclerosis> com/solutions/diagnosis-multiple-sclerosis) _Living With MS: MS in the Workplace_
( http://www.webmd/. <http://www.webmd.com/content/Article/117/112732.htm> com/content/Article/117/112732.htm) _Find a Physician_ ( http://www.webmd/.
<http://www.webmd.com/pages/dir/toc.asp?sponsor=core&z=1827_00000_2209_wk_03> com/pages/dir/toc.asp?sponsor=core&z=1827_00000_2209_wk_03) _ How Does Geography Affect MS?_ ( http://www.webmd/. <http://www.webmd.com/content/healthwise/60/15015.htm> com/content/healthwise/60/15015.htm) _Resources for Caring for Someone with MS._
( http://www.webmd/. <http://www.webmd.com/content/article/57/66149.htm> com/content/article/57/66149.htm) Questions about your medication?
----
( http://www.webmd/. <http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Arm Yourself against MS_
( http://www.webmd/. <http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) Learn new therapies to help you_ manage your symptoms._ ( http://www.webmd/.
<http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Vaccine to Reverse the Effects of MS _
( http://www.webmd/. <http://www.webmd.com/content/pages/26/115077.htm> com/content/pages/26/115077.htm) _Get WebMD-trusted information when you Google!_
( http://www.webmd/. <http://www.webmd.com/content/pages/26/114984.htm> com/content/pages/26/114984.htm) _Early Results Promising for MS Drug_
( http://www.webmd/. <http://www.webmd.com/content/article/127/116686.htm> com/content/article/127/116686.htm) _Treating the Patient, Not Just the Pain_
( http://www.webmd/. <http://www.webmd.com/content/article/121/114108.htm> com/content/article/121/114108.htm) _Controlling a Relapse_ ( http://www.webmd/.
<http://www.webmd.com/hw/multiple_sclerosis/hw191022.asp> com/hw/multiple_sclerosis/hw191022.asp) _Join the MS message board_ ( http://boards/.
<http://boards.webmd.com/topic.asp?topic_id=59> webmd.com/topic.asp?topic_id=59) _Quiz: Living Well with MS_ ( http://www.webmd/.
<http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Don't Let Overactive Bladder Embarrass You_
( http://www.webmd/. <http://www.webmd.com/content/tools/1/quiz_quality_of_life.htm> com/content/tools/1/quiz_quality_of_life.htm) _Romance, dating with MS: No need to hide_
( http://www.webmd/. <http://www.webmd.com/content/Article/120/113800.htm> com/content/Article/120/113800.htm) _Diagnosis MS: Early Treatment is Best_
( http://www.webmd/. <http://www.webmd.com/solutions/diagnosis-multiple-sclerosis> com/solutions/diagnosis-multiple-sclerosis) _Living With MS: MS in the Workplace_
( http://www.webmd/. <http://www.webmd.com/content/Article/117/112732.htm> com/content/Article/117/112732.htm) _Find a Physician_ ( http://www.webmd/.
<http://www.webmd.com/pages/dir/toc.asp?sponsor=core&z=1827_00000_2209_wk_03> com/pages/dir/toc.asp?sponsor=core&z=1827_00000_2209_wk_03) _ How Does Geography Affect MS?_ ( http://www.webmd/. <http://www.webmd.com/content/healthwise/60/15015.htm> com/content/healthwise/60/15015.htm) _Resources for Caring for Someone with MS._
( http://www.webmd/. <http://www.webmd.com/content/article/57/66149.htm> com/content/article/57/66149.htm) Questions about your medication?
Guide Dog for Deaf/Hard of Hearing in Need of a Home
Is there anyone who needs a hearing/service dog? This pup is in a shelter. Here's a copy of the e-mail I received and I agreed to passon info Please forward the announcement.
http://search.petfinder.com/petnote/displaypet.cgi?petid=6365572
This dog is a Katrina survivor and is an owner surrender. that hasbeen checked out. This dog knows sign language and should go to someone who needs a hearing dog. He is far too big for Fay she only weights about a 100 lbs. I did talk to her about him she still wants her Hunter. I thought maybe you would know some one or a group thecould place this dog with someone who could really use him.Thanks for your help.
http://search.petfinder.com/petnote/displaypet.cgi?petid=6365572
This dog is a Katrina survivor and is an owner surrender. that hasbeen checked out. This dog knows sign language and should go to someone who needs a hearing dog. He is far too big for Fay she only weights about a 100 lbs. I did talk to her about him she still wants her Hunter. I thought maybe you would know some one or a group thecould place this dog with someone who could really use him.Thanks for your help.
Friday, January 05, 2007
How to Legally Mutate Your Child--Pillow Angel
I donot have the words for this article. But read, click and decide how far it too far for elective surgeries and treatment for children with disabilities.... I posted some comments here
Frozen In Time: The Disabled Nine-Year-Old Girl Who Will Remain A Child All Her Life*
Parents fiercely criticised over 'offensive' surgery* Disability groups say case raises troubling issues. (The Guardian Ed Pilkington in New York Thursday January 4, 2007.)
Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth.She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow."Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond.
Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size. Although she has a normal life expectancy, she will, physically, always be nine years old.
Her growth has been suspended at 4ft 5in(1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth.
It is the first time they have given a public account oftheir actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug. She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmentallevel since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life.
In discussions with doctors at Seattle Children's hospital they devised the treatment: removal ofAshley's uterus to prevent fertility, excision of early buds onher chest so that she would not develop breasts, and medicationwith high doses of oestrogen to limit her growth by prematurelyfusing the growth plates of her bones.The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease orconvenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.
But as news about the treatment became known, Ashley's parents were surprised by the virulence of some of the response. Comments on chatboards have included:
"Ouch - this smacks of eugenics";
"I find this offensive, truly a milestone in our convenience society";
"This smells, I can't agree with this".
Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. "People have been horrified by the discrepancy," said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists. She said she felt for Ashley's parents and could understand why they had made the decision. But she feared that the treatment would open a Pandora's box that could have adverse effects for other children.
"What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning? This is very troubling."Debate has raged among doctors and medical ethicists. JeffreyBrosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. "This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families,but what we need most is better federal funding so that they canbe cared for properly."State help for caring for disabled people is available throughMedicaid, which is restricted to poor families. Ashley's parents would not qualify, and say it is impossible to find carers they can afford.
The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee. The doctors accept that Ashley's hysterectomy was contentious, given the dark history of sterilization ofdisabled people in Europe and America, and that there were risks involved in the operations and estrogen doses. But they argue the benefits outweigh the risks.
Ashley has, they admit, been "infantilised" but question the harm that would do a person whose mental capacity "will always be that of a young child".Ashley cannot say what she thinks. But in a telephone interviewwith the Guardian last night, her father said that many people had assumed he and his wife had to agonise over their decision."We didn't. It was easy," he said. "We clearly saw the benefits toAshley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."
Hormones
There is a long history of hormones being used to control growth in children. In some cases they are used to counteract a hormonal imbalance or genetic disorder. But there have also been sustained attempts to control body size for cosmetic reasons.In 1956 MA Goldzieher became the first to report using high doses of estrogen to treat exceptionally tall girls. Over ensuing years thousands of tall girls were prescribed estrogen to prevent them tipping over the 6ft mark, protecting their marriage prospects. As the stigma against tallness in women has declined, so has the practice, though it still continues. Boys considered to be shorter than the norm have recently begun tobe treated with a growth hormone, often for cosmetic reasons. US federal restrictions have been loosened, allowing private paediatricians to offer the treatment that can cost up to $40,000a year.
----------------------------
There are several message boards and blogs on this story; some are so full they have been closed, but messages can still be read:
Wheelchair Dancer
Penny Richards at Disability Studies, Temple U.
Mary Johnson of Ragged Edge
Cory SilverbergArthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania
Thirza Cuthand at Fit of PiqueI'm Funny Too at Did I Miss Something?
Frozen In Time: The Disabled Nine-Year-Old Girl Who Will Remain A Child All Her Life*
Parents fiercely criticised over 'offensive' surgery* Disability groups say case raises troubling issues. (The Guardian Ed Pilkington in New York Thursday January 4, 2007.)
Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth.She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow."Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond.
Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size. Although she has a normal life expectancy, she will, physically, always be nine years old.
Her growth has been suspended at 4ft 5in(1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth.
It is the first time they have given a public account oftheir actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug. She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmentallevel since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life.
In discussions with doctors at Seattle Children's hospital they devised the treatment: removal ofAshley's uterus to prevent fertility, excision of early buds onher chest so that she would not develop breasts, and medicationwith high doses of oestrogen to limit her growth by prematurelyfusing the growth plates of her bones.The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease orconvenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.
But as news about the treatment became known, Ashley's parents were surprised by the virulence of some of the response. Comments on chatboards have included:
"Ouch - this smacks of eugenics";
"I find this offensive, truly a milestone in our convenience society";
"This smells, I can't agree with this".
Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. "People have been horrified by the discrepancy," said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists. She said she felt for Ashley's parents and could understand why they had made the decision. But she feared that the treatment would open a Pandora's box that could have adverse effects for other children.
"What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning? This is very troubling."Debate has raged among doctors and medical ethicists. JeffreyBrosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. "This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families,but what we need most is better federal funding so that they canbe cared for properly."State help for caring for disabled people is available throughMedicaid, which is restricted to poor families. Ashley's parents would not qualify, and say it is impossible to find carers they can afford.
The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee. The doctors accept that Ashley's hysterectomy was contentious, given the dark history of sterilization ofdisabled people in Europe and America, and that there were risks involved in the operations and estrogen doses. But they argue the benefits outweigh the risks.
Ashley has, they admit, been "infantilised" but question the harm that would do a person whose mental capacity "will always be that of a young child".Ashley cannot say what she thinks. But in a telephone interviewwith the Guardian last night, her father said that many people had assumed he and his wife had to agonise over their decision."We didn't. It was easy," he said. "We clearly saw the benefits toAshley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."
Hormones
There is a long history of hormones being used to control growth in children. In some cases they are used to counteract a hormonal imbalance or genetic disorder. But there have also been sustained attempts to control body size for cosmetic reasons.In 1956 MA Goldzieher became the first to report using high doses of estrogen to treat exceptionally tall girls. Over ensuing years thousands of tall girls were prescribed estrogen to prevent them tipping over the 6ft mark, protecting their marriage prospects. As the stigma against tallness in women has declined, so has the practice, though it still continues. Boys considered to be shorter than the norm have recently begun tobe treated with a growth hormone, often for cosmetic reasons. US federal restrictions have been loosened, allowing private paediatricians to offer the treatment that can cost up to $40,000a year.
----------------------------
There are several message boards and blogs on this story; some are so full they have been closed, but messages can still be read:
Wheelchair Dancer
Penny Richards at Disability Studies, Temple U.
Mary Johnson of Ragged Edge
Cory SilverbergArthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania
Thirza Cuthand at Fit of PiqueI'm Funny Too at Did I Miss Something?
Thursday, January 04, 2007
Least Restrictive Environment LRE
Everyone loves freebies, so here is one
---------------------
Guide to Resources for Promoting Least Restrictive Environment (LRE) Practices
http://www.tacommunities.org/ev_en.php?ID=7564_201&ID2=DO_PRINTPAGE
Please also share with others you know who might find this useful --- Thank you.
Best regards ~ RWS
PLEASE FORWARD/CIRCULATE WIDELY WITHOUT FURTHER PERMISSION FROM THE AUTHOR:Folks - Below is link to a really gorgeous new resource - produced for OSEP - and it relates to a ton of things, not just "LRE" per se. There is a section in here on PBIS which includes a piece on how to evaluate a school-wide PBIS project/program; much on curriculum-based measurement (i.e., frequent objective tests/quizzes/"probes" to see if a student is learning what s/he is supposed to be learning ...These materials can be used in two distinctly different ways: 1) Since they're "official," i.e., OSEP-sponsored, they can be used to help convince school/district/SEA folks to do what's in them, the way they suggest, and 2) They can be used in hearings and litigations to show that a school/district (or even individual teacher) is NOT using a best practice, or recommended method/procedure ... There's even a link to a web page which tells parents how to go about getting curriculum-based measurement (objective!) implemented for their children ..Since these materials are written for school folk, they're pretty much done in very plain language, with complicated concepts explained in very simple, easily-comprehensible ways.Dee Alpert, PublisherSpecialEducationMuckraker.comhttp://www.specialeducationmuckraker.com
http://www.tacommunities.org/ev_en.php?ID=7564_201&ID2=DO_PRINTPAGE
Readers are encouraged to review materials developed by and/or shared through:
OSEP's Regional Resource, Regional Parent TA Center, and Federal TA&D Network, (http://www.rrfcnetwork.org)
The Office of Elementary and Secondary Education's Comprehensive Center Network (http://www.ed.gov/rschstat/research/pubs/oieresearch/edresources_5.html)
The Office of Elementary and Secondary Education's Equity Assistance Center Network (http://www.edgateway.net/pub/docs/262)
---------------------
Guide to Resources for Promoting Least Restrictive Environment (LRE) Practices
http://www.tacommunities.org/ev_en.php?ID=7564_201&ID2=DO_PRINTPAGE
Please also share with others you know who might find this useful --- Thank you.
Best regards ~ RWS
PLEASE FORWARD/CIRCULATE WIDELY WITHOUT FURTHER PERMISSION FROM THE AUTHOR:Folks - Below is link to a really gorgeous new resource - produced for OSEP - and it relates to a ton of things, not just "LRE" per se. There is a section in here on PBIS which includes a piece on how to evaluate a school-wide PBIS project/program; much on curriculum-based measurement (i.e., frequent objective tests/quizzes/"probes" to see if a student is learning what s/he is supposed to be learning ...These materials can be used in two distinctly different ways: 1) Since they're "official," i.e., OSEP-sponsored, they can be used to help convince school/district/SEA folks to do what's in them, the way they suggest, and 2) They can be used in hearings and litigations to show that a school/district (or even individual teacher) is NOT using a best practice, or recommended method/procedure ... There's even a link to a web page which tells parents how to go about getting curriculum-based measurement (objective!) implemented for their children ..Since these materials are written for school folk, they're pretty much done in very plain language, with complicated concepts explained in very simple, easily-comprehensible ways.Dee Alpert, PublisherSpecialEducationMuckraker.comhttp://www.specialeducationmuckraker.com
http://www.tacommunities.org/ev_en.php?ID=7564_201&ID2=DO_PRINTPAGE
Readers are encouraged to review materials developed by and/or shared through:
OSEP's Regional Resource, Regional Parent TA Center, and Federal TA&D Network, (http://www.rrfcnetwork.org)
The Office of Elementary and Secondary Education's Comprehensive Center Network (http://www.ed.gov/rschstat/research/pubs/oieresearch/edresources_5.html)
The Office of Elementary and Secondary Education's Equity Assistance Center Network (http://www.edgateway.net/pub/docs/262)
Wednesday, January 03, 2007
Eliot Spitzer and Day One- the Short Version
New York State governor, Eliot Spitzer, gave his first State-of-the-State address - similar to the presidential State of the Union. As far as disability issues go, it was pretty light. He spoke about the needs of seniors to get out of nursing homes and into community care.He never mentioned PWD (persons with disabilities).
The pols were so busy trying to impress and stay on his good side, there was no critical discussion, questions or debate. The Governor even heckled the audience, when he thought they were not applauding and cheering enough.
Sigh...
So much for One New York.
Sunday, December 24, 2006
Christmas Tales from the Disability World
I have no new thoughts on Christmas. But while the huband and kids are out doing last minute holiday errands (taking chairs and disposable party tableware to relatives) I wanted to share some excellent disability Christmas carols and Christmas tales from some of BBC message board's most illustrious disability bloggers.
The Real Meaning of Christmas..
There is a compliation CD that has a song entitled, "The Real Meaning of Christmas". I heard it this morning and it was a nice reminder as we finish up the last minute shopping, holiday eating, festivities and post Christmas Boxing Day, that we should take a few minutes to rest, reflect and be greatful for all we have. We forget and overlook our many blessings--so, give someone a call, send one of those sloppy sentimental email cards and practice random acts of kindness.
Peace
Wednesday, December 13, 2006
Don't Mess with Me-- I have a 504 Plan!
I have created a Teenage Advocacy Monster!
He prowls the hall of a public school, that shall not be named:
He marks his territory:
He prowls the hall of a public school, that shall not be named:
- seeking lairs to use for private test taking
- bouncing other kids from the library study carrels
- running teachers from unofficial break areas
He marks his territory:
- setting up time to use the computer lab for his test modification that can be administered
- setting up time after school or during study halls to have his extended time test modification
He stalks him prey:
- commanding the Building Specialist (code language for Special Education Teacher) to get get him out of class based tests
- ratting out teacher non compliance to the Building Coordinator of Special Education
- demanding his test modifications from teachers
- reminding teachers about his test modifications
- demanding again his test modifications
He takes his prize:
- He gets his test modifications
- He doesn't feel the need to explain his test modifications to peers
- He brags about his test modifications when he gets good grades and others fail
- He brings home his test and quiz grades-- WITHOUT BEING ASKED
I have created a monster.
I am so proud!!
How do you spell Elliot (Spitzer)?
Today was the last day of the legislative calendar in New York State. Legislators returned to the Capitol Building Complex (euphemistically called 'The Egg') to pass a flurry of end-of-the-session, go-out-with-a-bang, give-ourselves-a-quick-raise, and not-pass-too-much-that-while-l make-those-who-didn't re-elect a lot of us happy.
So, we are left, like a prom date, after the big fanfare, hoopla, and romance are done, wondering "What comes next?"
We have a New Governor (Eliot is spelled with one L) and Lieutenant Governor Patterson-- the first blind or visually impaired official at this level. There are more websites (election, write in your opinion, transition team, inauguration, online ads, and Hevesi spin doctoring) and levels of social marketing in this administration than you can shake a stick at. The inauguration is shaping up to be uber PC-- with representation from organizations, vendors, business across the state, to make Jesse Jackson's concept of the rainbow coalition look monochromatic.
Meanwhile, we are still wondering if this 'relationship' with Eliot is going to work out or not.....
Stay tuned.
So, we are left, like a prom date, after the big fanfare, hoopla, and romance are done, wondering "What comes next?"
We have a New Governor (Eliot is spelled with one L) and Lieutenant Governor Patterson-- the first blind or visually impaired official at this level. There are more websites (election, write in your opinion, transition team, inauguration, online ads, and Hevesi spin doctoring) and levels of social marketing in this administration than you can shake a stick at. The inauguration is shaping up to be uber PC-- with representation from organizations, vendors, business across the state, to make Jesse Jackson's concept of the rainbow coalition look monochromatic.
Meanwhile, we are still wondering if this 'relationship' with Eliot is going to work out or not.....
Stay tuned.
Tuesday, November 14, 2006
Disability Carnival #3
Check out the Disaiblity Carnival #3. There are several great poems, and essays on the theme of Spirituality.
Wednesday, October 04, 2006
How to Engage a politician-- Part IX
On Friday September 22, 2006 a band of forty ADAPT members met at Rundell Library, in downtown Rochester. Under the ADAPT ‘invisibility cloak’, we were ‘hidden in plain sight’-- just a group of people with disabilities on a field trip, chatting amicably while watching the Dick Cheney motorcade of regional law enforcement, come to town. Vice President Cheney was coming to Rochester to support Congressman Randy Kuhl at a fundraiser. There were sharpshooters on the roofs of the Convention Center, police on all floors of the parking garage, and four square blocks were cut off to pedestrian and car traffic. A protest action looked impossible. Nevertheless, ADAPTers tightly lined up, and marched across the police line at South Avenue and Broad Street, in to the Vice Presidential Security Zone. RPD met protesters, physically moving wheelchair users and grabbing people by the arm, to pull them back behind the line. Bruce Darling was restrained, face down, on a police car, but that did not stop the ADAPT crew. Norita Darling, Bruce’s mom, saw the incident, but kept on walking. Aware that there were larger issues at stake, she focused upon what needed to get done by ADAPT. Unable to get through the police barricade, the ADAPTers did an about face, and marched off, down the Broad Street Bridge.
We headed for Main Street, wheelchairs leading the way. The group attempted to cross over Main Street, to enter the Convention Center, but was met in the middle of the street by police, effectively stopping traffic. RPD redirected protesters, routing wheelchairs back to the yellow line, in the middle of the street. The ADAPT contingent filled in, urging the group forward, but the police brought in barricade fences. Eventually, the group agreed to go onto the sidewalk, next to other quiet protesters, where we stayed. Several officers were assigned to ‘watch’ us, to make sure we did not attempt to cross the street and enter the Convention Center. (One person literally "took it on the nose" for ADAPT, getting ‘bumped’ in the face with her camera, from a hostile employee of the Rochester Convention and Visitor’s Bureau. In the true spirit of non-violent protest, she did not respond in kind, but she has his picture!)
Q: What does ADAPT do when we are going to be somewhere for awhile?
A: Chant!
Anita ‘O’Brien and Susan Norwood led the group in a variety of chants including:
What do we want? MiCASSA!
When do we want it? Now!
Our homes, not nursing homes!
Free our brothers, free our sisters, free our people now!
Settled into a tight group on the sidewalk, we continued chanting. RPD brought in the mounted patrol, forming a Line of Five in front of the Convention Center. Several Cheney reception attendees and Convention Center staff peered out the windows at the demonstrators. Rochester ADAPT was situated in the front of the crowd. Users of power chairs/scooters were on the frontline, facing the Convention Center. Meanwhile, in the rear of the crowd, members of Rochester ADAPT passed out flyers about the need for Randy Kuhl to sign onto MiCASSA. After about an hour, the anti-war groups in Washington Square Park marched down Main Street, and joined us, in front of the Convention Center. This group was composed of Metro Justice members, college students, gay activists, and anti war activists. Cars driving by honked their horn, in support of our demonstration.
As the protests continued in the non-violent manner, the police became friendlier, asking questions about MiCASSA, tapping their toes in time with our chants, and nodding their heads in support of our cause! At the end of the fundraiser/picture event with Dick Cheney, a special bus was brought in for the Republican fundraiser guests, so they could scurry to safety, fearful that people across the street, behind barricades might ‘get’ them!! While leaving the event, Kuhl staffers and others leaving received a rousing round of “Boo’s!!” from the anti-war protesters.
While the protest was in its last hour, others hit the parking garage with MiCASSA leaflets. The Convention Center was empty, as Vice President Cheney and fundraiser guests were gone. However, a group conversation was in progress in one of the meeting rooms. Being curious, both Mike and Bruce walked in to see Randy Kuhl doing a press conference. Ever ready with a question, Bruce Darling cut off a reporter to ask why Kuhl did not support MiCASSA and would not meet with ADAPT. (Mike Volkmer added that it was much more cost effective than nursing home placements.) Congressman Kuhl replied that this was a staffer oversight and he would be interested in getting more information and MiCASSA sounds like something he would like to support! Bruce got his business card and agreed to follow up.
In reflection, this action was another ADAPT victory! The karma of success in unexpected places continues for Rochester ADAPT!
Question: How do you spell power?
Answer: A-D-A-P-T!
We headed for Main Street, wheelchairs leading the way. The group attempted to cross over Main Street, to enter the Convention Center, but was met in the middle of the street by police, effectively stopping traffic. RPD redirected protesters, routing wheelchairs back to the yellow line, in the middle of the street. The ADAPT contingent filled in, urging the group forward, but the police brought in barricade fences. Eventually, the group agreed to go onto the sidewalk, next to other quiet protesters, where we stayed. Several officers were assigned to ‘watch’ us, to make sure we did not attempt to cross the street and enter the Convention Center. (One person literally "took it on the nose" for ADAPT, getting ‘bumped’ in the face with her camera, from a hostile employee of the Rochester Convention and Visitor’s Bureau. In the true spirit of non-violent protest, she did not respond in kind, but she has his picture!)
Q: What does ADAPT do when we are going to be somewhere for awhile?
A: Chant!
Anita ‘O’Brien and Susan Norwood led the group in a variety of chants including:
What do we want? MiCASSA!
When do we want it? Now!
Our homes, not nursing homes!
Free our brothers, free our sisters, free our people now!
Settled into a tight group on the sidewalk, we continued chanting. RPD brought in the mounted patrol, forming a Line of Five in front of the Convention Center. Several Cheney reception attendees and Convention Center staff peered out the windows at the demonstrators. Rochester ADAPT was situated in the front of the crowd. Users of power chairs/scooters were on the frontline, facing the Convention Center. Meanwhile, in the rear of the crowd, members of Rochester ADAPT passed out flyers about the need for Randy Kuhl to sign onto MiCASSA. After about an hour, the anti-war groups in Washington Square Park marched down Main Street, and joined us, in front of the Convention Center. This group was composed of Metro Justice members, college students, gay activists, and anti war activists. Cars driving by honked their horn, in support of our demonstration.
As the protests continued in the non-violent manner, the police became friendlier, asking questions about MiCASSA, tapping their toes in time with our chants, and nodding their heads in support of our cause! At the end of the fundraiser/picture event with Dick Cheney, a special bus was brought in for the Republican fundraiser guests, so they could scurry to safety, fearful that people across the street, behind barricades might ‘get’ them!! While leaving the event, Kuhl staffers and others leaving received a rousing round of “Boo’s!!” from the anti-war protesters.
While the protest was in its last hour, others hit the parking garage with MiCASSA leaflets. The Convention Center was empty, as Vice President Cheney and fundraiser guests were gone. However, a group conversation was in progress in one of the meeting rooms. Being curious, both Mike and Bruce walked in to see Randy Kuhl doing a press conference. Ever ready with a question, Bruce Darling cut off a reporter to ask why Kuhl did not support MiCASSA and would not meet with ADAPT. (Mike Volkmer added that it was much more cost effective than nursing home placements.) Congressman Kuhl replied that this was a staffer oversight and he would be interested in getting more information and MiCASSA sounds like something he would like to support! Bruce got his business card and agreed to follow up.
In reflection, this action was another ADAPT victory! The karma of success in unexpected places continues for Rochester ADAPT!
Question: How do you spell power?
Answer: A-D-A-P-T!
Candidate Forums and Elected Officials
The Center for Disability Rights is hosting an Election 2006 Forum, not a debate. Each person get four to five minutes, to come and explain their platforms, and how it impacts people with disabilities.
-----------------
The Center for Disability Rights and The Regional Center for Independent Living will be hosting a Candidate Forum on Disability Issues for Election 2006. This forum will focus upon key issues that impact people with disabilities.
Do Housing, transportation, and healthcare and education matter to you?
Do you want to know more about the Candidates views on disability issues?
Then come join us!
Monday, October 23, 2006
5:30PM-8PM
Kate Gleason Auditorium
Bausch and Lomb Public Library Building
115 South Avenue
Rochester, New York.
The forum will present Candidates for the offices of:
NY Governor, NY Attorney General, US Congress and NYS Legislature.
The Bausch and Lomb Public Library Building is wheelchair accessible.
Sign language interpreters will be provided.
If you have any questions, or need more information, contact Arlene Wilson at (585) 546-7510 or awilson@rochestercdr.org.
-----------------
This should be interesting, as many never thought through a platform to this degree, even the Gubenatorial candidates. But, as most politicians, they are fast on their feet, and seeking to make hay while the sun shines.
-----------------
The Center for Disability Rights and The Regional Center for Independent Living will be hosting a Candidate Forum on Disability Issues for Election 2006. This forum will focus upon key issues that impact people with disabilities.
Do Housing, transportation, and healthcare and education matter to you?
Do you want to know more about the Candidates views on disability issues?
Then come join us!
Monday, October 23, 2006
5:30PM-8PM
Kate Gleason Auditorium
Bausch and Lomb Public Library Building
115 South Avenue
Rochester, New York.
The forum will present Candidates for the offices of:
NY Governor, NY Attorney General, US Congress and NYS Legislature.
The Bausch and Lomb Public Library Building is wheelchair accessible.
Sign language interpreters will be provided.
If you have any questions, or need more information, contact Arlene Wilson at (585) 546-7510 or awilson@rochestercdr.org.
-----------------
This should be interesting, as many never thought through a platform to this degree, even the Gubenatorial candidates. But, as most politicians, they are fast on their feet, and seeking to make hay while the sun shines.
Subscribe to:
Posts (Atom)