The Future Doc Wilson

Music Therapy on NPR- research and autism

2011-12-16T14:52:00.003-05:00

I am a fan of Science Friday, with Ira Flato.

The December 16, 2011 topic was Music Therapy. There was a nice constellation of MD, Music Therapists, and a parent of a child with autism called in.

Some good information about an international research project that is measuring the efficacy of music therapy for a variety of conditions, including autism.

Disability Awareness Day at Fenway Park

2011-09-05T21:04:00.002-05:00

Autistic Man has Trouble with the National Anthem - But Then Something Amazing Happens

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Saw this posted on Facebook and had to share.

here is the comment that went with it....
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When this autistic man started having trouble singing the national anthem, something happened that could bring you to tears. What an amazing display of humanity. It's great to see that there is still goodness in the world.
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Everyone deserves their moment, and the support for the good intention and doing a job, no matter how difficult!

Fastest Man on No Legs

2011-09-03T16:13:00.003-05:00

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Oscar Pastorius is back-- and determined to be qualify for the Olympics. i think the world needs to be open to this and other opportunities for the differently able to compete.

Don't feel sorry for 'tink, tink'-- strive to emulate his determination and cheer him on!
-----------
Bladerunner: Oscar at the 2004 Athens Paralympics
Oscar Pistorius smiles whenever he is introduced as "the fastest man on no legs" even though some might be offended by the somewhat politically incorrect sobriquet.
For Pistorius, a talented sprinter who had both his legs amputated when he was a baby, it is just an indication of how far he has come ? and how much more he could achieve.
In a groundbreaking race next weekend in Sheffield, 20-year-old Pistorius will take on the current Olympic champion.
Not as some freak show or demonstration race ? but because for the first time in history, a disabled runner has earned his place among the world's elite on merit.
"Already a Paralympic champion and world-record holder in amputee races over 100m, 200m and 400m, Pistorius is now achieving something revolutionary.
With aid of high-tech carbon-fibre legs, he is almost as fast as the best able-bodied runners in the world.
While he could well set yet another world record for amputee athletes next week, that is no longer his goal.
Nothing short of qualifying for the Beijing Olympics next year will satisfy him.
But his case could divide the sport. While many see him as a groundbreaking hero, redefining the very concept of athletic achievement, others claim his artificial legs amount to cheating.
Pistorius himself can't see what all the fuss is about because he considers himself as just another athlete.
"I'm not disabled," he says breezily. "I just don't have any legs."
If this sounds like a story straight out of Hollywood, it will come as no surprise to learn that Tom Hanks is bidding to make a film about Pistorius, nicknamed the Bladerunner because of the carbon-fibre blades he attaches just below the knee.
Made by a specialist firm in Iceland and known as 'Cheetahs', they cost £15,000 a pair and are the Ferraris of artificial legs.

Read more: http://www.dailymail.co.uk/news/article-466904/The-fastest-man-legs-Olympics-sights.html#ixzz1WvVPyw29

Autism and Humanity

2011-07-17T07:33:00.003-05:00

There was a good story this morning on NPR's program On Being. It was about autism, and how and what my friend from Ohio calls those not on the Autism Spectrum but "Leaning heavily on the fence"

Pertinent Posts from the Being Blog» Asperger's, Autism, and Parenting

StoryCorps's animated short of a mother and her son with Asperger's syndrome reminds us of the lessons Paul Collins shared about raising his autistic son.

» Outhumaning the Humans An autistic man illustrates the limitless possibilities of the human mind.

» Hitchcock's Rope, Music for Our Autism Program Hitchcock's cinema classic serves as inspiration for this show's musical selections.

Recommended Video» Television Logo Histories
For their son Morgan and other people with autism, YouTube has fostered a community catering to his interest in television logo histories. So we asked him for links to some of his favorite videos. Here's some of his favorites of PBS and Paramount.

Selected Writings on Autism»

"Five Weeks" by Stephen Jay Gould
The famous scientist recounts a personal story about his autistic son and the charming simplicity of calculating dates.

» "Parallel Play" by Tim Page
The music critic for the Washington Post reflects on living with Asperger's syndrome.

» "The Vanishing Boy" by Paul Collins
Making the difficult decision to put his son on anti-depressants, our guest tells his story and calls it one of the most important things he's ever written.

NYS Groundbreaking Consumer Directed Program Under Attack

2010-07-31T16:33:00.002-05:00

The Center for Disability Rights is under attack - Tell Monroe County Executive Maggie Brooks to Restore the CDPAS Contract by phone and in person!

The Center for Disability Rights is under attack by the Monroe County
Executive, Maggie Brooks. Without warning, on July 22nd, CDR received a
terse, 5 sentence letter informing us of the contract termination with
no explanation included. All of our CDPAS consumers received a letter
the same day telling them that the county is terminating its contract
with CDR and that they have until just August 1st to choose from one of
five for-profit agencies for their Consumer Directed Personal
Assistance.

The next day, CDR received from a friend in the local media, a copy of a
three page letter from the County Executive to the media. The letter
was filled with blatant falsehoods mixed with misunderstandings of the
roles of CDR and the county in the CDPAS program. Here is CDR's letter
to Maggie Brooks debunking her allegations against CDR:

Videos of
consumers refuting the county's charges show the reality of people with disabilities having their personal control and independence taken away.

Share these; make them go viral as meanwhile, Brooks continues to use
the media as a buffer to not have to talk with us. Many more documents
available on CDR's website.

Our consumers and their attendants have been thrown into chaos and Ms.
Brooks refuses to talk to them. Nearly 300 consumers are in danger of
losing their attendants and possibly their services outright.

Currently consumers, supporters and staff have camped out in front of
the County Building on Main Street in Rochester. We have been out there
24/7 since Monday and will continue until this is over.

Medical Marijuana for the Treatment of Autism

2009-12-08T15:12:00.002-05:00

I heard this on a morning radio program-- you decide if this is valid or someone looking for fifteen minutes of fame. Used to address aggression, rage, anorexia symptoms or lack of appetite, some identify medical marijuana as a wrench in toolkit of treatments to address the range of behaviors/issues in the autism spectrum.

French Woman with CP to be webcam internet site

2009-11-08T09:44:00.003-05:00

The parents of Anne Lamic, 32 years old, will be the subject of a cotinuous webcam broadcast in Franch. Her parents feel this is a good opportunity to have people with disabiltieis become more public in France and European society. Seh cannot walk, or talk and have the mental abiltiies comparable to a one month old infant...

What do you think?

Psalm 23- revisited

2009-10-03T15:41:00.001-05:00

The Lord is my Shepherd = That’s Relationship!

He maketh me to lie down in green pastures = That’s Rest!

He leadeth me beside still waters = That’s Refreshment!

He restoreth my soul = That’s Healing!

He leadth me in the paths of righteousness = That’s Guidance!

For His name sake = That’s Purpose

Yea, though I walk through the valley of the shadow of death = That’s Testing!

I will fear no evil = That’s Protection!

For Thou art with me = That’s Faithfulness!

Thy rod and staff they comfort me = That’s Discipline!

Thou preparest a table before me in the presence of mine enemies = That’s Hope!

Thou annointest my head with oil = That’s Consecration!

My cup runneth over = That’s Abundance!

Surely goodness and mercy shall follow me all the days of my life = That’s Blessings!

And I will dwell in the house of the Lord = That’s Security!

Forever = That’s Eternity!

The Amazing Race

2009-10-03T15:34:00.007-05:00

In case people are not followers of reality shows, I wanted to point out that there is a gentleman [on the left] with Asperger's Syndrome who is participating in the fall 2009 season of The Amazing Race 15.

Gender, Calcium and Autism

2009-05-21T17:18:00.004-05:00

There was some new research released today, looking at a correlation between calcium excesses and autism in boys. A summary of this research is available on Autism Speaks website. But this 'new' information is not all that new, as this link shows research from 2007. The American research announced today has delved a bit deeper, looking at calcium, gender correlations and heridity.

Teaching Kids With Autism The Art Of Conversation

2009-01-19T12:44:00.002-05:00

An interesting interview on social conversation training for children with autism on NPR...

Annual Disability Status Reports

2008-12-09T09:31:00.001-05:00

Cornell University has posted the Annual Disability Status Reports, which summarize the most recent demographic and economic statistics on the non-institutionalized population with disabilities.

Disability Status Reports and other statistics are available for each state, at www.DisabilityStatistics.org

Easter Seals' Living with Autism Study

2008-12-09T09:00:00.001-05:00

Autism is one of the most pervasive and perplexing developmental disabilities of our time. Some estimates place the number of people diagnosed with Autism Spectrum Disorders at one in every 150 children. Easter Seals is thrilled to unveil its groundbreaking Living with Autism Study, gathering families living with autism, government leaders, autism organizations and advocates, professional colleagues, volunteers and corporate partners.

By joining us — live — on December 16th, from 9:30-10:30 AM EST, via the technology offered by EP LiveOnLine, you will be among the first to hear the national findings and take away new insights into the ongoing challenges facing individuals and families living with autism, particularly their concerns about the future. Attendance is free of charge thanks to a grant from MassMutual Financial Group.

No other special technology is needed and you will be able to see and hear the information provided in real time just as if you were present at the National Press Club event! EP LiveOnLine will maintain the full content of the presentation on epliveonline.com and will link from the websites of Easter Seals, EP Global Communications, Inc., Vemics-iMedicor for 90 days following the event.

Register to attend this event on EP LiveOnLine now. December 16, 2008
9:30-10:30 AM EST

This event is open to civilian as well as military families. The Easter Seals Living with Autism Study results will be used to raise awareness of, and advocate for the life long services people living with autism and their families desperately need.

National Center for Parents with Disabilities & their Families

2008-11-03T22:43:00.002-05:00

BERKELEY, CA -- October 21, 2008. A new National Center for Parents with
Disabilities and their Families has been established in Berkeley, California
under the auspices of Through the Looking Glass, a non-profit organization
founded in 1982. The Center will oversee several national research studies
concerning parents with disabilities and their families, as well as provide
consultations, trainings and publications to parents, family members and
professionals.

The research and resources of the Center will address the nearly 9 million
U.S. parents with disabilities - 15% of all American families. Parents with
disabilities include mothers and fathers in all disability categories - such
as parents with physical disabilities, deaf parents, blind parents, parents
with psychiatric or cognitive disabilities. The Center is funded by a
$500,000 per year federal grant for three years from the Washington,
DC-based National Institute on Disability and Rehabilitation Research
(NIDRR), U.S. Department of Education.

The new Center will focus its research and resource activities on four
critical areas that impact parents with disabilities: custody, family roles
and personal assistance; paratransit; and, intervention with parents with
cognitive disabilities and their children. One of the notable activities
planned over the next three years is a scholarship program for high school
seniors and college students whose parents have disabilities. The Center
will be staffed by nationally recognized experts regarding parents with
disabilities, most of whom have personal or family experience with
disability or deafness.

More information about the Center and Through the Looking Glass is available
at the organization's website (www.lookingglass.org), through two toll-free
numbers, 800-644-2666 (voice), 800-804-1616 (TDD/TTY), or by email at
tlg@lookingglass.org

ABOUT THE ORGANIZATION. This new National Center will build upon Through
the Looking Glass's nationally and internationally recognized expertise and
leadership in working with parents with disabilities, their families, and
their providers -- 26 years of groundbreaking research, services, training
and resource development. Through the Looking Glass (TLG) has trained more
than 70,000 professionals regarding parents with disabilities and deaf
parents, from all U.S. states and 44 countries. Since 1993 it has provided
technical assistance to over 25,000 parents with disabilities, family
members and professionals. TLG's expertise has contributed to the passage
of legislation in three states to decrease discrimination against parents
with disabilities. TLG is one of seven disability organizations that have
partnered to build the Ed Roberts Campus at the Ashby BART Station in
Berkeley - a national and international model dedicated to disability rights
and universal access(see www.edrobertscampus.org for more details). Opening
in 2010, the campus will house the offices of the collaborating
organizations as well as Through the Looking Glass' new early child
development center.

Contact: Dr. Paul Preston
510-848-1112, x104
Email: ppreston@lookingglass.org

Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA 94710
(800) 644-2666 (voice)
(800) 804-1616 (TDD/TTY)
FAX: (510) 848-4445
tlg@lookingglass.org
www.lookingglass.org

2008-09-24T19:13:00.004-05:00

Tomorrow marks a historical day, and potentially the pinnacle of George W. Bush's legacy-- the signing of the Americans with Disabilities Act amendment. These changes will bring more disabilities into the protected class, and strengthen the laws that are currently on the books. Another ADA (American Diabetes Assocation) has worked hard on advocacy for this legislation, as well as other organizations.

This is a moment of victory and celebration. While all is not equal and the playing field is still not level, by any stretch of the imagination, minority groups always find their incresed membership in the franchaise of democracy is always accessed (and ensured) through legislation.

Autism & Fragile X

2008-09-24T19:09:00.002-05:00

An interesting story on NPR about Fragile X and some tangential research.

The CCA Words

2008-09-01T11:55:00.003-05:00

ADAPT has created a new song to try to rally awareness and (hopefully) buy-in from the McCain camp for the Community Choices Act. (This proposed legislation would provide community based home health care for people with disabilities as the first go-to option. The first option in most communities is nursing home placement-- once you go in, you rarely get well or come out...)

WHY CCA

WE'RE GONNA TELL YOU WHY

YCCA

IT'S NOT EVERYTHING FOR EVERYONE TO ENJOY

BUT IT STILL WILL FREE A LOT OF GIRLS AND BOYS

YCCA

LISTEN UP McCAIN

YCCA

FISCAL CONSERVATIVES WILL SAVE SOME DOUGH

THEN OUR PEOPLE MAY LET YOU GO

THAT'S WHY YOU NEED TO PASS THE C-C-A

IT'S WHAT'S YOU GOTTA DO

C-C-A

ONE MORE CHANCE, TO DO WHAT'S RIGHT

THEN GO HOME AND SLEEP GOOD TONITE

CCA

LISTEN UP McCAIN

PASS THE COMMUNITY CHOICE ACT NOW!

(LYRICS BY LINDA ANTHONY)

Randy Pausch Last Lecture

2008-07-31T10:27:00.001-05:00

Embedded Video

Autism in Switzerland

2008-07-31T09:34:00.002-05:00

This morning I heard an autism version of "A Tale of Two Cities" on NPR. Eventhough I was half asleep, this story grabbed my attention, bringing me fully awake. Two mothers, in two different countries, talk about their children with autism, their sturggles with services through goernments and plans for the future.

Check it out.

The Artichokes are Coming! The Artichokes are Coming!

2008-07-26T19:04:00.003-05:00

Today was the webcast of the Presidential Disability Forum, which featured Tom Harkin the author of the ADA, and Barak Obama stand-in and Republican Presidential Candidate John McCain. A lot of excitement greeted this event-- and rumors of a 'big Announcement" from McClain.

The 'big announcement' was a great disappointment. The disability community was hoping for his vote and support of the Community Choice Act-- which didn't happen.

However, one woman told a story about Ed Roberts an icon of the Independent Living movement. When told he would end up a vegetable, he told the person that if he was going to be a vegetable, he would like to be an artichoke-- hard and prickly on the outside, with a big heart on the inside. She then encouraged others to be activists, and to be artichokes-- to be persistent, difficult and sometimes prickly-- to get things done.

So, to end a disappointing day on a good note, hats off to the 'artichokes' who are working tirelessly on getting support-- vote-by-vote-- for the Community Choice Act.
-----
The latest co-sponsors include:

Rep Musgrave, Marilyn N. [CO-4] - 6/23/2008 Rep King, Peter T. [NY-3] - 6/23/2008 Rep Biggert, Judy [IL-13] - 7/10/2008 Rep Lipinski, Daniel [IL-3] - 7/14/2008 Rep Moran, James P. [VA-8] - 7/22/2008 Rep Israel, Steve [NY-2] - 7/22/2008 Rep Kirk, Mark Steven [IL-10] - 7/23/2008

**********

And ALL Listed by State:

S.799 / H.R.1621 Community Choice Act
Co-sponsors by state as of 6-20-08

Alabama

Rep Bonner, Jo [AL-1] - 6/14/2007

Alaska

Rep Young, Don [AK] - 7/23/2007

American Samoa

Rep Faleomavaega, Eni F.H. [AS] - 12/12/2007

Arizona

Rep Pastor, Ed [AZ-4] - 12/4/2007
Rep Grijalva, Raul M. [AZ-7] - 12/12/2007

California

Sen Boxer, Barbara [CA] - 7/30/2007

Rep Sanchez, Loretta [CA-47] - 9/5/2007
Rep Farr, Sam [CA-17] - 1/15/2008
Rep Solis, Hilda L. [CA-32] - 1/16/2008
Rep Waxman, Henry A. [CA-30] - 1/16/2008 Rep Davis, Susan A. [CA-53] - 1/28/2008 Rep Waters, Maxine [CA-35] - 2/12/2008 Rep Capps, Lois [CA-23] - 4/10/2008 Rep Filner, Bob [CA-51] - 4/23/2008 Rep Lee, Barbara [CA-9] - 5/13/2008

Colorado

Sen Salazar, Ken [CO] - 3/7/2007

Rep DeGette, Diana [CO-1] 3/29/07
Rep Udall, Mark [CO-2] - 6/14/2007
Rep Perlmutter, Ed [CO-7] - 2/12/2008
Rep Salazar, John T. [CO-3] - 5/21/2008
Rep Musgrave, Marilyn N. [CO-4] - 6/23/2008

Connecticut

Sen Lieberman, Joseph I. [CT] - 3/7/2007 Sen Dodd, Christopher J. [CT] - 3/7/2007

Rep DeLauro, Rosa L. [CT-3] - 6/14/2007
Rep Courtney, Joe [CT-2] - 5/14/2007
Rep Murphy, Christopher S. [CT-5] - 5/14/2007 Rep Larson, John B. [CT-1] - 5/14/07

Delaware

Sen Biden, Joseph R., Jr. [DE] - 3/7/2007

District of Columbia

Rep Norton, Eleanor Holmes [DC] - 12/17/2007

Florida

Rep Hastings, Alcee L. [FL-23] - 10/9/2007

Georgia

Rep Deal, Nathan [GA-9] - 10/9/2007
Rep Marshall, Jim [GA-8] - 8/2/2007
Rep Lewis, John [GA-5] - 1/15/2008

Rep Johnson, Henry C. "Hank," Jr. [GA-4] - 6/3/2008

Hawaii

Sen Inouye, Daniel K. [HI] - 3/7/2007

Rep Abercrombie, Neil [HI-1] - 6/5/2008

Illinois

Sen Durbin, Richard [IL] - 4/12/2007
Sen Obama, Barack [IL] - 7/23/2007

Rep Davis, Danny K. [IL-7]
Rep Weller, Jerry [IL-11] - 5/14/2007
Rep Schakowsky, Janice D. [IL-9] - 5/14/2007 Rep Shimkus, John [IL-19] 3/21/07 Rep Gutierrez, Luis V. [IL-4] - 6/14/07 Rep Emanuel, Rahm [IL-5] - 1/22/2008 Rep Jackson, Jesse L., Jr. [IL-2] - 1/29/2008 Rep Biggert, Judy [IL-13] - 7/10/2008 Rep Lipinski, Daniel [IL-3] - 7/14/2008 Rep Kirk, Mark Steven [IL-10] - 7/23/2008

Indiana

Rep Visclosky, Peter J. [IN-1] - 3/29/2007 Rep Carson, Andre [IN-7] - 5/1/2008 Rep Ellsworth, Brad [IN-8] - 6/19/2008

Iowa

Sen Harkin, Tom [IA]

Rep Loebsack, David [IA-2] - 11/5/2007

Kansas
Sen Roberts, Pat [KS] - 5/13/2008

Rep Boyda, Nancy E. [KS-2] 7/10/07
Rep Moran, Jerry [KS-1] - 9/5/2007
Rep Moore, Dennis [KS-3] - 3/5/2008
Rep Tiahrt, Todd [KS-4] - 5/1/2008

Louisanna

Rep Jefferson, William J. [LA-2] - 3/14/2008

Maine

Rep Allen, Thomas H. [ME-1] - 4/30/2008

Maryland

Rep Wynn, Albert Russell [MD-4] - 7/23/2007 Rep Van Hollen, Chris [MD-8] - 9/5/2007 Rep Cummings, Elijah E. [MD-7] - 1/15/2008

Massachusetts

Sen Kerry, John F. [MA] - 10/2/2007
Sen Kennedy, Edward M. [MA] - 3/7/2007

Rep McGovern, James P. [MA-3] - 12/4/2007 Rep Markey, Edward J. [MA-7] - 2/25/2008 Rep Olver, John W. [MA-1] - 5/1/2008

Michigan

Rep McCotter, Thaddeus G. [MI-11] - 5/6/2008

Minnesota

Rep Peterson, Collin C. [MN-7] - 1/22/2008 Rep McCollum, Betty [MN-4] - 4/30/2008

Montana

Sen Tester, Jon [MT] - 10/2/2007

Nevada

Rep Porter, Jon C. [NV-3] - 5/1/2008

New Jersey

Sen Lautenberg, Frank R. [NJ] - 5/17/2007

Rep Payne, Donald M. [NJ-10] 5/14/07
Rep Smith, Christopher H. [NJ-4] - 5/14/2007 Rep Ferguson, Mike [NJ-7] - 1/17/2008

New York

Sen Clinton, Hillary Rodham [NY] - 3/7/2007 Sen Schumer, Charles E. [NY] - 3/7/2007

Rep Walsh, James T. [NY-25] 5/14/07
Rep McCarthy, Carolyn [NY-4] - 10/9/2007 Rep Nadler, Jerrold [NY-8] - 10/15/2007 Rep Hinchey, Maurice D. [NY-22] - 9/6/2007 Rep Rangel, Charles B. [NY-15] - 10/25/2007 Rep Lowey, Nita M. [NY-18] - 11/15/2007 Rep Towns, Edolphus [NY-10] - 1/15/2008 Rep Maloney, Carolyn B. [NY-14] - 2/25/2008 Rep Kuhl, John R. "Randy", Jr. [NY-29] - 3/3/2008 Rep Bishop, Timothy H. [NY-1] - 3/14/2008 Rep Slaughter, Louise McIntosh [NY-28] - 4/1/2008 Rep Meeks, Gregory W. [NY-6] - 4/30/2008 Rep Clarke, Yvette D. [NY-11] - 5/1/2008 Rep Velazquez, Nydia M. [NY-12] - 5/1/2008 Rep Fossella, Vito [NY-13] - 5/6/2008 Rep Engel, Eliot L. [NY-17] - 5/6/2008 Rep Serrano, Jose E. [NY-16] - 5/21/2008 Rep McHugh, John M. [NY-23] - 5/21/2008 Rep King, Peter T. [NY-3] - 6/23/2008 Rep Israel, Steve [NY-2] - 7/22/2008

North Carolina

Rep Miller, Brad [NC-13] - 1/23/2008

Ohio

Sen Brown, Sherrod [OH] - 5/17/2007

Rep Kaptur, Marcy [OH-9] - 1/15/2008

Pennsylvania

Sen Specter, Arlen [PA] - 3/7/2007
Sen Casey, Robert P., Jr. [PA] - 4/12/2007

Rep Fattah, Chaka [PA-2] - 8/2/2007
Rep Schwartz, Allyson Y. [PA-13] - 9/5/2007 Rep Brady, Robert A. [PA-1] - 10/23/2007 Rep Murtha, John P. [PA-12] - 12/4/2007 Rep English, Phil [PA-3] - 12/5/2007 Rep Doyle, Michael F. [PA-14] - 1/15/2008 Rep Kanjorski, Paul E. [PA-11] - 2/12/2008 Rep Murphy, Patrick J. [PA-8] - 1/28/2008 Rep Platts, Todd Russell [PA-19] - 2/25/2008 Rep Murphy, Tim [PA-18] - 3/4/2008 Rep Dent, Charles W. [PA-15] - 3/10/2008 Rep Gerlach, Jim [PA-6] - 3/31/2008 Rep Altmire, Jason [PA-4] - 4/22/2008 Rep Carney, Christopher P. [PA-10] - 5/1/2008 Rep Sestak, Joe [PA-7] - 5/1/2008

Rhode Island

Rep Langevin, James R. [RI-2] - 10/29/2007 Rep Kennedy, Patrick J. [RI-1] - 1/15/2008

South Dakota

Sen Johnson, Tim [SD] - 2/28/2008

Rep Herseth Sandlin, Stephanie [SD] - 9/5/2007

Tennessee

Rep Cohen, Steve [TN-9] - 5/14/07
Rep Gordon, Bart [TN-6] - 1/23/2008

Texas

Rep Doggett, Lloyd [TX-25] 6/14/07
Rep Sessions, Pete [TX-32] - 7/23/2007
Rep Green, Gene [TX-29] - 8/2/2007
Rep Hinojosa, Ruben [TX-15] - 9/19/2007
Rep Johnson, Eddie Bernice [TX-30] - 11/15/2007 Rep Lampson, Nick [TX-22] - 1/15/2008 Rep Gonzalez, Charles A. [TX-20] - 4/24/2008 Rep Reyes, Silvestre [TX-16] - 6/17/2008

Utah

Rep Bishop, Rob [UT-1] - 6/14/07

Vermont

Sen Sanders, Bernard [VT] - 6/13/2007

Virginia

Rep Scott, Robert C. "Bobby" [VA-3] - 1/28/2008

Rep Moran, James P. [VA-8] - 7/22/2008

Washington

Sen Murray, Patty [WA] - 9/20/2007

West Virginia

Rep Rahall, Nick J., II [WV-3] - 4/17/2008

Wisconsin

Rep Moore, Gwen [WI-4] - 7/12/2007
Baldwin, Rep Tammy [WI-2] - 10/30/2007

PEF Action Alert

2008-07-21T13:15:00.002-05:00

PEF Asks for Action for Blind & Deaf Children:

Help Ensure that Parents of Blind and Deaf Children Are Aware of Valuable State Services. PEF members employed by the State School for the Blind in Batavia and the State School for the Deaf in Rome provide unique services to one of the state?s most vulnerable populations. The schools provide residential and day programs to blind and deaf children with multiple disabilities.

Unfortunately, some parents of eligible children may not even be aware that these exceptional schools exist. A9511, which has passed the Assembly and the Senate, would require reasonable measures be taken so that parents of blind and deaf children are informed about the Schools for the Blind and the Deaf. This will help ensure that parents of disabled children have knowledge of all options available to them when the decision of how best to provide services to their children is made.

Tell Governor Paterson to sign A9511A.

DISTRICT OF COLUMBIA ACCESSIBLE TAXI CAB

2008-07-12T04:12:00.002-05:00

Accessible Taxicabs Will Roll

Federal Funds Back Purchase of 21 Vans for D.C. Fleets

By Michael Birnbaum
Washington Post Staff Writer
Thursday, June 19, 2008; B04

Wheelchair users in the District will have a new way to get around starting in January, thanks to a decision yesterday to fund 21 wheelchair-accessible cabs. Until now, wheelchair users have had to call one of two suburban cab companies, and the taxis are not always available.

"In the District, for emergency evacuations, quick trips, somebody's wheelchair breaks down, what are you going to do?" asked Bobby Coward, 44, a quadriplegic who uses an electric wheelchair. "You don't have an option. So a cab is that solution."

Coward has agitated for accessible cabs and has worked on an accessibility task force under D.C. Council member Jim Graham (D-Ward 1), whose Committee on Public Works and the Environment oversees the D.C. Taxicab Commission.

The decision, made by the National Capital Region Transportation Planning Board, will use $1 million in federal funds to purchase 21 accessible vans and create a centralized dispatch center. Three cab companies will get seven vans each and will pay about 30 percent of the cost of the cabs.

The decision puts the District in line with comparable-size and larger cities, said Wendy Klancher, senior transportation planner with the Metropolitan Washington Council of Governments.

"The hope is that once these companies get up and running, the business will be self-sustaining and they won't need any more funding," Klancher said. Roy Spooner, general manager for Yellow Cab Co. of D.C., said he doesn't expect the accessible taxis to be profitable. "We feel it's something that we need to do as part of our social service offering," he said.

Liberty Cab and the Mohebbi Group also will have the accessible vans.

Not everybody on the transportation board was convinced of the need for the
vans. "If these [taxi] companies were being hit by requests, they'd have come up
with something already," said Charles A. Jenkins, a commissioner in Frederick County , who was one of two members of the 42-member board to oppose the proposal.

Leon J. Swain, chairman of the Taxicab Commission, called the decision "a real victory for D.C." The commission will contribute about $200,000 to the effort.

Though all buses and Metro stations in the District are wheelchair accessible, station elevators are often broken, and bus drivers won't always stop for people in wheelchairs when the bus is crowded, Coward said. There are also MetroAccess paratransit vans, but they must be booked at least 24 hours in advance, and not all wheelchair users are eligible to use them.

Rep. Jim Langevin (D-R.I.), who is quadriplegic and uses an electric wheelchair, usually makes his way around the District in a van and welcomed yesterday's decision.

"There was a day, for example, when my van for whatever reason didn't work, and I had to use the Metro," he said. "It would have been really nice to have that option to call a cab -- using one of the regular cabs around here would never have been an option for me."

Coward, the disability activist, found himself stranded one day last summer when his electric wheelchair broke down near Alabama Avenue and Seventh Street SE.

"I had to call my uncle," Coward said. "He brought his car -- it took him an hour and 20 minutes."

Coward's wheelchair couldn't fit in the car, and it was too heavy to push by hand. So Coward had his uncle push him down the street with the car.

"We would get so many stares," Coward said. And then they passed the 7th Police District station.

"They went ballistic," Coward said. "Like, you can't be pushing a wheelchair with a car. . . . As fate would have it, a MetroAccess vehicle happened to drive by" and offered him a ride.

He would rather have called a taxi.

"Imagine if I was in inclement weather," Coward said. "Good thing it was a great day."
-----------

For more information, check out the following website links:

Disability Blog Carnival #40

2008-07-10T20:14:00.001-05:00

Thi sis the link to the new Disability Blog Carnival.
Enjoy!

Bush Proposal Seeks Greater Access for Disabled

2008-06-20T21:37:00.002-05:00

The Bush administration is about to propose far-reaching new
rules that would give people with disabilities greater access to tens of
thousands of courtrooms, swimming pools, golf courses, stadiums, theaters,
hotels and retail stores.

The proposal would substantially update and rewrite federal standards for
enforcement of the Americans With Disabilities Act, a landmark civil rights
law passed with strong bipartisan support in 1990. The new rules would set
more stringent requirements in many areas and address some issues for the
first time, in an effort to meet the needs of an aging population and
growing numbers of disabled war veterans.

More than seven million businesses and all state and local government
agencies would be affected. The proposal includes some exemptions for parts
of existing buildings, but any new construction or renovations would have to
comply.

The new standards would affect everything from the location of light
switches to the height of retail service counters, to the use of monkeys as
"service animals" for people with disabilities, which would be forbidden.
The White House approved the proposal in May after a five-month review. It
is scheduled to be published in the Federal Register on Tuesday, with 60
days for public comment. After considering those comments, the government
would issue final rules with the force of law.

Already, the proposal is stirring concern. The United States Chamber of
Commerce says it would be onerous and costly, while advocates for disabled
Americans say it does not go far enough.

Since the disability law was signed by the first President Bush, advances in
technology have made services more available to people with disabilities.
But Justice Department officials said they were still receiving large
numbers of complaints. In recent months, the federal government has settled
lawsuits securing more seats for disabled fans at Madison Square Garden in
New York and at the nation's largest college football stadium, at the
University of Michigan.

The Census Bureau says more than 51 million Americans have some kind of
disability, with nearly two-thirds of them reporting severe impairments.
The proposed rules, under development for more than four years, flesh out
the meaning of the 1990 law, which set forth broad objectives. The
215,000-word proposal includes these new requirements:
Courts would have to provide a lift or a ramp to ensure that people in
wheelchairs could get into the witness stand, which is usually elevated from
floor level.

Auditoriums would have to provide a lift or a ramp so wheelchair users
could "participate fully and equally in graduation exercises and other
events" at which members of the audience have direct access to the stage.

-Any sports stadium with a seating capacity of 25,000 or more would have to
provide safety and emergency information by posting written messages on
scoreboards and video monitors. This would alert people who are deaf or hard
of hearing.

Theaters must provide specified numbers of seats for wheelchair users (at
least five in a 300-seat facility). Viewing angles to the screen or stage
must be "equivalent to or better than the average viewing angles provided to
all other spectators.

-Light switches in a hotel room could not be more than 48 inches high. The
current maximum is 54 inches.

-Hotels must allow people with disabilities to reserve accessible guest
rooms, and they must honor these reservations to the same degree they
guarantee other room reservations.

-6At least 25 percent of the railings at fishing piers would have to be no
more than 34 inches high, so that a person in a wheelchair could fish over
the railing.

-At least half of the holes on miniature golf courses must be accessible to
people using wheelchairs, and these holes must be connected by a continuous,
unobstructed path.

-A new swimming pool with a perimeter of more than 300 feet would have to
provide "at least two accessible means of entry," like a gentle sloping ramp
or a chair lift.

-New playgrounds would have to provide access to slides, swings and other
play equipment for children who use wheelchairs.

The Justice Department acknowledged that some of the changes would have
significant costs. But over all, it said, the value of the public benefits,
estimated at $54 billion, exceeds the expected costs of $23 billion.
In an economic analysis of the proposed rules, the Justice Department said
the need for an accessible environment was greater than ever because the
Iraq war was "creating a new generation of young men and women with
disabilities.

John L. Wodatch, chief of the disability rights section of the Justice
Department, said: "Disability is inherent in the human condition. The vast
majority of individuals who are fortunate enough to reach an advanced age
will benefit from the proposed requirements."

By 2010, the department estimates, 2 percent of the adult population will
use wheelchairs, and 4 percent will use crutches, canes, walkers or other
mobility devices. Likewise, it said, as the population ages, the number of
people with hearing loss will increase.

Under the 1990 law, businesses are supposed to remove barriers to people
with disabilities if the changes are "readily achievable," meaning they can
be "carried out without much difficulty or expense."

The Bush administration is proposing a safe harbor for small businesses.
They could meet their obligations in a given year if, in the prior year,
they had spent at least 1 percent of their gross revenues to remove
barriers.

Curtis L. Decker, executive director of the National Disability Rights
Network, a coalition of legal advocates, said: "Safe harbors make us very
nervous. A small business could spend the requisite amount of money and
still not be accessible."

Randel K. Johnson, a vice president of the United States Chamber of
Commerce, said the proposed rules "are so long and technically complex that
even the best-intentioned small business could be found out of compliance by
a clever lawyer looking to force a settlement."

The Justice Department cited the "monetary cost cap" as one of several steps
it was taking to limit the rules' impact on small businesses. But Mr.
Johnson said he feared that courts would view the ceiling as a floor and
tell businesses they should spend 1 percent of their revenues on removing
barriers.

The proposed rules affirm the right of people with disabilities to use guide
dogs and other service animals in public places, but they tighten the
definition to exclude certain species.

When the existing rules were adopted in the early 1990s, the Justice
Department said, few people anticipated the current trend toward "the use of
wild, exotic or unusual species" as service animals.

The proposed rules define a service animal as "any dog or other common
domestic animal individually trained to do work or perform tasks" for a
person with a physical or mental disability.

Under this definition, the administration says, monkeys could not qualify as
service animals, nor would reptiles; amphibians; rabbits, ferrets and
rodents; or most farm animals.

Under the rules, a hotel, restaurant, theater, store or public park could
ask a person with a disability to remove a service animal if the animal was
out of control or not housebroken, or if it posed a direct threat to the
health or safety of others.

By way of example, the rules say that a theater could exclude a dog that
disrupted a live performance by repeated barking.The rules confirm that people with disabilities can use traditional wheelchairs, power wheelchairs and electric scooters in any public areas open to pedestrians.

But shopping centers, amusement parks and other public places could impose
reasonable restrictions on two-wheeled Segway vehicles, golf carts and
"other power-driven mobility devices" used by those with disabilities.

By ROBERT PEAR June 16, 2008 New York Times

Tennessee has seen the Light- thanks to ADAPT!

2008-06-20T21:20:00.004-05:00

People who say activism and civil disobedience are ineffective tools of social change, take note...

The ADAPT Community can celebrate a VICTORY for Tennesseans! Because of the
actions of many, definitely including the 2006 National ADAPT Action in
Nashville and the Real People, Real Voices Day of Testimony the Tennessee
General Assembly has passed and Governor Bredesen has signed the Tennessee
Long Term Care Community Choices Act!

Wednesday June 18, 2008 during the bill signing in Memphis Governor Bredesen saw many
local ADAPTers holding up signs reading "OUR HOMES not nursing homes". (The Governor was beseiged in 2006 by protesters at the Capitol. To his surprised, and the Conserative media, access to community based services is not a racial, age, Democratic or Republican issue. It cuts across all socio-economic lines of demarcation.)He went on to say that, "We must also thank the advocates that worked so hard to keep this issue in the forefront over the years."

To read the bill, as amended go to www.mcil.org

CONGRATULATIONS ALL!!!!

ADAPT Announces 10 Best and Worst States for Community Services

2008-05-29T06:09:00.000-05:00

ADAPT Announces 10 Best and Worst States for Community Services

Washington, D.C.--- In the plaza of the Hall of the States, ADAPT
announced the 2008 Ten Best and Ten Worst States in the delivery of home
and community services to people with disabilities and older Americans.
The Hall of States building is home to the National Governors Association,
an organization that has been very vocal in recent years about the
preference of community services over nursing homes and other
institutions, yet has not been able to inspire its own members to improve
their provision of those services.

Speakers representing states inB both the best and worst categories spoke
at the press conferenceB about the horrors of nursing home life and the
joys of living in the community in those states that provide good
community services. Randy Alexander from Tennessee ADAPT and LaTonya
Reeves from Colorado ADAPT also spoke of the
disability-underground-railroad that assists people in states without
community services to move to states where they can live quality lives in
their own homes with the supports and services they need.

The grouping of states into the top and bottom tenB was based on publicly
available data from highly respected researchers, supplemented by the
results of an informal survey widely distributed across the country by
ADAPT. As has so often been the case over the years, there were few
surprises. Many of the ten states doing the poorest job of providing
services that allow citizens to receive long term care in their own homes
in the community have been on the "worst" list over and over.

The states are listed alphabetically, not ranked numerically;

TEN BEST STATES
Alaska
Colorado
Maine
Massachusetts
Michigan
Minnesota
New Hampshire
Oregon
Rhode Island
Vermont

HONORABLE MENTION
Kansas
New York
Washington
Wisconsin
Wyoming

TEN WORST STATES
Arkansas
Georgia
Florida
Illinois
Indiana
Louisiana
Mississippi
North Dakota
Tennessee
Texas

DISHONORABLE MENTION
Alabama
District of Columbia
New Jersey
Ohio
Pennsylvania

"No state is ideal, and no state is all bad in how it provides home and
community services," said Bob Kafka, ADAPT National Organizer. "This, as
always, is simply a snapshot based on current information from the Kaiser
Commission, the Research and Training Center on Community Living at the
University of Minnesota, Thomson Healthcare, and our survey. People are
welcome to email me at bob.adapt@sbcglobal.net for more information."

# # #
FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org/

NYS Budget Puppet Show

2008-05-29T06:03:00.002-05:00

This is an interesting parody of the politics of decision making in new york state government. Check it out...

http://www.youtube.com/watch?v=zk2pnemUREg

Lobbyist Expendatures Report 2007

2008-04-27T14:32:00.004-05:00

Here is some interesting information about the power of lobbyists. We are seeing a great deal of accusations with the Democratic candidates about who is more beholden to corporate interests. The State Commission on Public Integrity has created a list of lobby groups who spend the most to get the attention of our elected officials by business group...

Health & Mental Hygiene $26,766,948
Real Estate & Construction $21,391,827
Education $13,274,202
Trade Associations $12,394,754
Public, Community Interest $12,266,413
Communications $8,449,809
Marketing & Sales $8,406,970
Insurance $8,234,363
Banking & Financial Services $7,312,382
Environment & Natural Resources $6,935,807
-------
They have also compiled a list by corporations....

Clients and Public Corporations Ranked by Total Lobbying Expenses for 2007*

1. Verizon $3,216,488
2. Trustees of Columbia University in the City of NY(The) $2,260,706
3. United Teachers (NYS) $2,125,226
4. O'Brien & Gere Limited $1,585,113
5. Greater NY Hospital Association $1,562,439
6. Healthcare Association of NYS $1,546,723
7. Medical Society of the State of NY $1,48,128
8. Forest City Ratner Companies $1,160,186
9. Trial Lawyers Association (NYS) $959.733
10. United Federation of Teachers $876,952

*Minimum of figures reported in 2007 Client and Public Corporation Reports as of February 25, 2008

St. Mary's School for The Deaf- Update

2008-04-27T06:40:00.000-05:00

The teachers union at St. Mary’s School for the Deaf in Buffalo has voted “no confidence” in the school’s superintendent, high school principal and Board of Trustees’ executive committee.

Teachers also voted to support opening board meetings to the public and having a staff member and a student attend board meetings.

A union official hailed the vote as a sign of unity among the teachers.

“[Superintendent William P.] Johnson has been saying on the news that it’s only a few people that have a problem with what’s happening, that there’s only a few disgruntled employees. This proves that it’s not just a few people,” said Ron Czech, second vice president of the teachers union.

Forty-one of the union’s 49 members voted last week. The results were announced at a union meeting Monday afternoon, and the union sent certified letters on Wednesday to board members and Johnson, indicating the outcome of the balloting.

“This action was taken with a sense of duty and devotion to the students and the school, and was not motivated by malice toward individuals, but concern regarding administrative decisions,” union officials wrote in the letter to school officials.

Eighty-seven percent of the teachers voted no confidence in Johnson and high school principal Patricia Michalek; and 84 percent voted no confidence in the board’s executive committee, Czech said.

In contrast, 92 percent of the teachers voted in support of elementary principal Patricia Velocci. Ninety-five percent of the teachers favored opening board meetings, and 88 percent would like to see a staff member and student attend the meetings.

Neither Johnson nor Michalek responded to requests to comment.

Johnson’s contract runs through September 2009. However, Johnson or the school can terminate the agreement with no penalty, as long as they provide four months’ written notice.

St. Mary’s has been in turmoil for months, with parents complaining about a series of staff changes they say are taking a toll on the quality of education their children receive. Staff complain of an atmosphere of intimidation and, some say, harassment by Johnson and Michalek.

In response to the parent complaints, the board of trustees in March created a parent advisory group that began meeting last week. Parents met with three board members, who are promising to bring parent concerns to the full board.

Also, after the last board meeting, chairman Joseph S. DePaolo resigned, citing health concerns. The board is expected to meet Monday to elect a new chairman.

Negotiations are continuing with Nettie Brewer, the popular math teacher who was fired in early March. The board at its last meeting voted in favor of reinstating Brewer, and the school made an initial offer. Brewer and the union are working on a counter-offer.

Meanwhile, Assemblyman Sam Hoyt, D-Buffalo, a member of St. Mary’s board, said his office is still researching issues related to a bill he is considering introducing that would force St. Mary’s School and similar schools around the state to open their meetings to the public.

April is Autism Awareness Month

2008-04-06T19:31:00.005-05:00

Yesterday I watched Autism, the Musical on HBO. I was pleased at the variety of children displayed in the autism diaspora. It has been reviewed by Autism Speaks, the Boston Globe and also has a few videos on YouTube.

It is a strong, powerful story of the Miracle Project-- a theatre experience for children with autism. It was not preachy, focused on causation, therapeutic interventions, nor gave a 'happy ending'. Instead, it focused on being a person with autism and the parent of a person with autism. The HBO website has some good resource links, and background on the film makers, the families, etc.

Spot on HBO!

'Twas cool.

RatifyNow CRPD Blog Swarm 2008!

2008-03-30T14:26:00.002-05:00

There is an international movement to gain ratification of the International disability rights convention. Through medium of the Internet and world opinion, called the Convention on the Rights of Persons with Disabilities (CRPD).

This effort has not met with much success, particularly in the US. The hope is that an international response would increase awareness and develop sensitivity to full inclusion of people with disabilities in society. There is a link for data and statistics on people with disability.

St. Mary's School of The Deaf Protests

2008-03-20T05:36:00.004-05:00

Students, faculty, alumni and parents picket Tuesday outside St. Mary’s School for the Deaf, their only recourse because they are barred from meetings of the board that runs the educational facility on Main Street.

Parents and staff will air their concerns at the St. Mary’s School for the Deaf board meeting this afternoon — by picketing with placards outside the front entrance of the Main Street school.

That’s the closest they are likely to get to the board meeting, since they are not allowed in.

Along with 10 other such schools serving the blind and deaf in New York State, St. Mary’s is state-funded but is run as a nonprofit private institution. Decades ago, the State Legislature exempted such schools from the state’s Freedom of Information Law.

That means St. Mary’s enjoys the funding of a public school and the shroud from public scrutiny of a private school.

Like any public school, St. Mary’s gets nearly all its money from taxpayers, in this case about $11.65 million annually.

But unlike public schools, St. Mary’s conducts all its business out of public view. Among actions the board has taken in recent years behind closed doors:

• Extending the superintendent’s contract, with an immediate 10 percent pay hike to $159,000 this year, as well as a car, lifetime health coverage and a six-month consultant stint upon retirement.
• Hiring the current superintendent’s son as a teacher. A previous superintendent’s wife and daughter had been hired to oversee the school’s video repository.
• Enacting a policy putting more authority in the hands of the board’s executive committee, while, at the same time, making it more difficult for employees to bring concerns to individual board members.
• Considering removal of two members — including a nun who had worked at the school for 44 years — from the board for talking to employees. The motion was on the agenda but never brought to a vote.

The school’s board meetings are closed. No parents, staff or students are allowed in. The 15-member board is not required to release minutes from its meetings or even to tell what was voted on.

What’s more, the board basically appoints itself. When a member leaves, the board appoints a replacement. Recently, for example, attorney John P. DePaolo, the son of board Chairman Joseph S. DePaolo, was appointed to a three-year term.

With parents, students and staff concerned about recent decisions by the school’s superintendent, William P. Johnson — including staff reassignments and the dismissal of a popular math teacher — there have been requests for open board meetings.

“It’s a huge disservice to the board as well as the parents and staff that they cannot attend meetings,” parent Jane Wilkes said during a meeting parents had with school officials.

Some employees agree. “CSEA supports having open board of trustee meetings and direct access or communication with members of the board of trustees if we feel Superintendent Dr. Johnson is ignoring or neglecting our concerns,” Local 891, Civil Service Employees Association, wrote to the board.

Board chairman DePaolo said the board has considered opening its meetings but has consistently rejected the idea.

“We have discussed it many times and decided to keep our meetings closed,” he said.

But at least one board member — Assemblyman Sam Hoyt — says he wants the meetings open.

“While it may be statutorily or legally a private school, in essence it is a public school, with large public funding. The parents and taxpayers ought to have access to what is going on at the meetings,” Hoyt said.

As an assemblyman, he could propose legislation requiring St. Mary’s to open its meetings, but he would prefer not to.

“I’d rather we make a decision as a board [to open the meetings],” Hoyt said.

St. Mary’s finances are also exempt from public scrutiny. Not even the state Education Department knows exactly who’s on the payroll or how much each employee earns.

The state spends about $111 million on all the schools for the deaf and blind in New York State but only loosely oversees how the money is spent. Each school is required to submit an annual report to the state detailing spending by category, rather than providing the specifics that public schools are required to provide.

The most recent financial statement St. Mary’s submitted to the state — for 2006-07 — shows 37 teachers making a total of $3.1 million and 20 teacher’s aides making $765,437. State aid to the school, which serves 130 students — including 35 residential students — was $11.65 million that year.

The statement does not list all employees. It does not, for example, show Johnson’s son was hired part time last year and full time this school year.

But it does state that Superintendent Johnson was paid $145,000 in 2006-07.

His salary jumped to $159,000 this school year after the board, at a closed-door meeting, extended his contract until September 2009, when he plans to retire.

That contract says Johnson could receive another merit raise next year. It also allows him, upon retiring, to work as a consultant for six months — at his full rate of pay — training a new superintendent.

Prior to retirement, Johnson gets a car and seven weeks’ vacation. Upon retirement, he gets lifetime health insurance.

His contract is not public information, but The Buffalo News obtained a copy of it.

Beyond the money the school gets from the state, St. Mary’s also has a foundation that raises money for expenses the state doesn’t cover.

The Foundation for Deaf Education is not required to detail its finances. However, as a nonprofit, it must, like the school itself, file federal tax reports.

The foundation raised about $26,000 last year, had net assets of more than $900,000 and gave the school $147,356 last year for the purpose of “education,” according to the report. Harry Scull Jr./Buffalo News

mpasciak@buffnews.com and sschulman@buffnews.com
----------
The following is an on the ground report from Dean DeRusso, Deaf Systems Advocate at the Regional Center for Independent Living out of Rochester, NY:
------------------
Anita Cameron, Frank Kimmes and I were there. Yesterday from 3 to 5 pm. They need people wearing white and supporting them with funds to continue their work.

Based on my understanding from speaking with staff, people and students, the students were tired of the system being changed for worst than ever.

For one, they were given an Athetic Director who they do not want and can not communicate with them. They were given new teachers who they claim was not certificated and did not know how to communicate the resources to them. They even claimed that one of the teacher played Chess in the class rather than teach them anything.

This teacher Nettie did not do any of above, she gave them full lecture in ASL helping them. She even brought visual aids of resources to classrooms to help them understand math better than ever in their lifes. She gave them all education they needed. They can not figure why the teacher was fired. And, they still do not understand why they were given an Athetic Director who can not sign or communicate with them.

I spoke with some people about the Dr. Johnson of St. Mary School for the Deaf wants to hire staff and board officers who will not speak up to him. That's the only reason they suspect that he requested that this teacher was released was because she can speak up to him. Nettie had a strong relationship with the students and she would always stand for the students and it appears that he did not appricate that.

The students are going to fight. And from an Advocate point of view it's sad that the newspapers reporters did not contact any deaf people while they were interviewing. They are getting information from the union or hearing people who are in favor of the students.

More information about it can be found below:

St. Mary’s School for the Deaf board keeps its meetings closed
By Mary B. Pasciak and Susan Schulman
Updated: 03/19/08 9:10 AM

Thank you,

Dean DeRusso
Deaf Systems Advocate
Regional Center for Independent Living
Advocacy and Independent Living Services for Individuals
497 State Street
Rochester, NY 14608

Sorenson VP: 585 546-7598
VP: 74.39.189.195
Voice Callers 1: (877) 467-4877 ext 07598
Voice Callers 2: 866-327-8877 ext 585.546.7598
TTY: (585) 697-1604
Fax: 585.546.7577
E-Mail: dderusso@rcil.org

-------------------

Below is an email from Tom Coughlin:
-------------------
Hello Millie and friends: thanks for sending me news about SMSD. It is
shocking to hear about Mr. Johnson not showing respect to our beloved
Sisters. Please see the attached Open Letter I have written to our
Alumni. Please share this letter with all who you know via your email
as I do not have many of their email address. the more this letter is
circulated the better we can defend our Sisters. We must defend Sister
Virginia and Sister Loretta. Sr. Mary Delaney would have done the
same. Fr. Tom C.

---------------
Online articles about this controversy are availabe on the following websites:

http://www.wivb.com/global/story.asp?s=7977682

http://www.buffalonews.com/cityregion/story/297185.html

http://www.buffalonews.com/cityregion/buffaloerie/story/298127.html

http://www.buffalonews.com/cityregion/buffaloerie/story/298794.html

2008-03-14T08:43:00.004-05:00

Well, dear readers, New York State is making history. A man who is African American and legally blind will be sworn in Monday March 17th (St. Patrick's Day) as our Governor. It is unfortunate that is is under such inauspicious circumstances-- in sports they call this an 'ugly win'. But it is a momentous occasion.

What will this bode for the future of people with disabilities in New York State? Or African Americans? How will Governor-elect Patterson ride out the local, state and national media storm and gossip-column type frenzy of his predecessor? We can read some of his speeches, to get an indication of his perspective.

Stay tuned.

GOVERNOR SPITZER & LIEUTENANT GOVERNOR PATERSON DISABILITY PROCLAMATION

2008-03-09T12:06:00.001-05:00

Month-Long Celebration of "Success Stories" of Individuals with Disabilities
to be Held in Albany
_____

Governor Eliot Spitzer and Lieutenant Governor David A. Paterson today
proclaimed March Developmental Disabilities Awareness Month, honoring the
tens of thousands of people in New York State who live with developmental
disabilities, their contributions to the state, and the families, friends,
caregivers, and advocates who support them.

The New York State Office of Mental Retardation and Developmental
Disabilities (OMRDD) will host a month-long exhibit in Albany chronicling
the history of disabilities in New York State and celebrating the "success
stories" of individuals with developmental disabilities.

"New York leads the nation in ensuring that persons with d evelopmental
disabilities are provided critical support through carefully designed and
innovative programs," said Governor Spitzer. "We have seen bold advancements
in the rights of people with developmental disabilities and we must continue
working to expand opportunities. As we applaud these achievements we must
also commend the family members and caregivers who play an integral role
every day in helping individuals with developmental disabilities lead
productive lives."

The exhibit will run from March 5 through March 31 in the Empire State
Plaza's South Concourse in Albany. It will feature displays from the Museum
of disABILITY History near Buffalo and profiles of accomplished individuals
with developmental disabilities.

Lieutenant Governor David A. Paterson said: "As a society we now know that a
developmental disability no longer means that an individual cannot achieve
his or her dreams and contribute to society. In fact , we have come to
realize the exceptional contributions people with disabilities can, and do,
make every day. This awareness month established by Governor Spitzer is a
time to reflect on these contributions."

OMRDD Commissioner Diana Jones Ritter said: "We applaud the Governor for his
leadership in continuing New York's State's extraordinary legacy of
supporting people with developmental disabilities and for commissioning this
month-long celebration and observance. Our goal is to help the community
at-large see the merits and abilities of the whole person - not simply a
disability."

Ramon Aldecoa, Co-Vice President of the Board for the Self-Advocacy
Association of New York State, Inc. (an organization run by and for people
with developmental disabilities) and a subject of one of the exhibits at the
Empire Plaza said: "For me, it was very important to learn about my rights
as a person with a developmental disability. No w, it's time for me to use
all I've learned to help teach other people with disabilities to do the same
thing. We all have the same rights. I feel it's my job as an advocate to
make sure all individuals know this, so they can act on those rights."

Nearly 350,000 New Yorkers live with a developmental disability. Initiatives
like NYS-CARES III, which provides out-of-home community residential
alternatives for adults, and other programs such as supported employment,
which helps individuals enter the workforce and become productive members of
society, are vitally important in creating opportunities for New Yorkers
with developmental disabilities.

For more information about the exhibit or about programs and services offered through OMRDD, visit the OMRDD website at http://www.omr.state.ny.us/state.ny.us.

Presidential forum on Disability

2008-03-09T11:09:00.000-05:00

FEEL THE POWER OF THE DISABILITY VOTE!

Celebrate the 18th Anniversary of the ADA at a National Presidential Candidate Forum on Disability Issues

Saturday, July 26, 2008

Veteran's Memorial, Columbus OH

Free! Everyone welcome!

Hosted by: Ohio Disability Vote Coalition and major national sponsors

Additional information will be posted on JFActivist Blog.

Ashley Treatment- Update

2008-02-03T09:33:00.000-05:00

The Roving Activist has an update on her blog on the Ashley X issue. Some ADAPT activists protested a presentation by the Head of the Seattle Children's Hospital's Institutional Review Board (which makes decisions on medical research and experimentation).

Voluntary Suicide Bomber with Down's Syndrome?

2008-02-03T09:13:00.000-05:00

I felt the need to express my anger and revulsion at the Iraqi people this week. There was another suicide bombing last week. This one was of note to me, as more information trickled in The suicide bomber mistimed the US convoy-- no damage occurred to Americans, only to herself. Subsequent information disclosed that it was two women with a disability-- believed to be Down's Syndrome.

Shame on the Iraqi insurgents-- the whole suicide bomber thing is a cultural orientation that we do not share. (I get that.) However, it is based upon personal choice and the ability to knowingly understand and consent. I am not so sure that the persons recruited were able to give consent and fully understand what it was they were suppose to do. (Evidenced by the person watching the convoy, letting it all go by, and then blowing themselves up.)

Or maybe they DID understand what was wanted of them, and did not want to do it. They may have seen they had no other option- failure would not be tolerated. There is a posting about this on JFActivist blog (on the left margin under Disability Diaspora)-- and some additional research which shows this is not an abboration, but an ongoing strategy.

Man who uses Prosthetic Limbs disqualified from Olympics

2008-01-27T21:08:00.000-05:00

Oscar Pistorius has been disqualified for Olympic competition due to his prosthetic limbs. These have been identified as giving him an unfair advantage over those without prosthetics.

Bob's House

2008-01-27T20:48:00.000-05:00

Pepsi is running a 60 second spot, at the beginning of Super Bowl XLII, featuring deaf actors. The commercial has no sound, and tells a story of two guys trying to find the house of a friend, to watch the Super Bowl. This is unique in that it is centered around a deaf culture joke.. check it out!

Culturally sensitive and cool? Culturally cheesy? You decide!!

Disability Blog Carnival #30

2008-01-27T20:44:00.000-05:00

Disability Blog Carnival #30 is up for your viewing, reading and listening pleasure.

uppity disability dot net: 1-14-08 Blogging Against Aversives

2008-01-18T17:33:00.000-05:00

Uppity Disability has an excellent posting about public hearings in Mass. against aversives (legalized torture, physical pain and humiliation in the name of behavior control and correction).

uppity disability dot net: 1-14-08 Blogging Against Aversives

Please share your stories and support this initiative to recognize and respect the humanity of people with disabilities.

The Death of Brent Martin

2008-01-13T13:49:00.000-05:00

The following story has been brought to my attention from the Disability Studies blog:

A young man was the victim of random ugly violence in the UK. The tragedy of this situation was that he was targeted because he had a mental disability-- who could knock him down first-- on a bet. These three youth beat Brent Martin to death....

Please:

1. Share this information with as many people as you can. Education and awareness is a 24/7 job...evil never sleeps

2. Consider wearing a black armband in his memory-- and share the story when asked.

3. Post a comment to the online condolence book of his local newspaper

4. UK residents-- advocate for the full measure of the law to be applied. Send a message that all life is valuable-- all violence again all life must have grave consequences.

Ransom Notes Ad Pulled!

2007-12-22T23:13:00.000-05:00

The Disabilities Studies Blog has a post by Stephen Drake of the Autism Self Advocacy Network updating the situation. I am republishing it here...
------------------
I am pleased to inform you that this afternoon the NYU Child Study Center
announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that
announcement here. The thousands of people with disabilities, family members,
professionals and others who have written, called, e-mailed and signed our
petition have been heard. Today is a historic day for the disability community.
Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the
NYU Child Study Center, I have obtained a commitment to pursue real dialogue in
the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.
-------------

Again, this goes to reinforce the power and importance of advocacy and how the Internet can get the word out, and mobilize a constituency group.

Hurrah!

Inspirations on the Internet

2007-12-18T15:37:00.000-05:00

I have also started an additional blog-- focused on the motivational, and spiritual. Lots of Thomas Kinkade artwork and poems. It also has a great link for online Christmas Carols-- with sheet music and instrumental music.

Check it out!

"Ransom Notes" Ad Campaign Reinforces Stigma

2007-12-18T14:11:00.000-05:00

There is an ad campaign by the New York University Childhood Center that is upsetting quite a few folks in the autism community. These ad presents ransom notes, threatening to 'make' someone autistic. There is an online petition, to speak out against it.

The Future Doc Wilson: The Real Meaning of Christmas..

2007-12-12T01:49:00.000-05:00

As I was reviewing the traffic on my blog, one posting came up quite a bit. I re-read it, and can not improve on it-- so enjoy!The Future Doc Wilson: The Real Meaning of Christmas..

Fever as a Cure for Autism?

2007-12-12T00:21:00.000-05:00

The following NPR story may be of interest:

NPR : Autism Study Lends Credence to Fever Effect

Several parents cite the subsidance of autistic traits when children have a fever. This is being studied further...
--------------------

Morning Edition, December 6, 2007 · For the first three years of his life, Rene Craft's son, Jackson, communicated primarily through screaming tantrums. He never spoke. He didn't point to things. He didn't make eye contact. He had the classic signs of severe autism.

Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.

"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."

Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement.

Craft isn't the first parent to notice the so-called "fever effect." Autism researchers have been hearing reports about it for decades.

Now a team from the Kennedy Krieger Institute in Baltimore has done a study that suggests the fever effect is real.

Laura Curran, Ph.D., is the lead author of the study, which appears in the current issue of the journal Pediatrics.

"We did find fewer autistic-like behaviors when kids had fevers," she says. "And as the fever disappeared, their autistic behaviors returned."

That wasn't true for every child. And the study included just 30 children, and relied on parents to fill out detailed checklists about each child's behavior.

Even so, Curran says it looks like parents have been right all along. She says she's not surprised.

"As a mother myself, I know no one knows their children better than the parents," she says. "And we've been hearing about these anecdotes for many, many years."

Now the question for researchers is how fever affects autism.

Dr. Andy Zimmerman of Kennedy Krieger says the answer probably involves the connections between brain cells — which many researcher believe is one place things go wrong in autism.

Zimmerman says that it's not the rise in a child's temperature that makes the difference. But it may be that brain connections work better in the presence of small proteins called cytokines that are produced by the immune system.

"We'd like to know what those cytokines are in children with autism when they get fevers, to see if one or more of these cytokines might be unusually increased," he says.

That might lead to a treatment that could mimic the beneficial effects of fever without actually making a child sick.

Craft believes researchers will find an answer, and it will help her son.

She says she has noticed that every time Jackson gets a high fever, he undergoes a dramatic change. He may ask to play a game, or make eye contact, or stop biting his hands until they bleed.

"Jackson runs into furniture with his head when he's upset or I question him," Craft says. "When he has a fever, those behaviors disappear."

Craft says she plans to enroll her son in a new study at Kennedy Krieger that will try to explain the fever effect.

. "There is something occurring in his brain that he needs, that he gets when he has a fever," Craft says. "I don't know what it is. That's for the doctors to figure out. But he's in there. He's waiting to come out."
-----------------------------------------

Other autism stories on Morning Edition, on NPR--

In Depth
Nov. 5, 2007
Neuroscientists Focus on Autism
Aug. 21, 2007
Schools Strive to Meet Needs of Autistic Students
Aug. 16, 2007
Parents Fight for Autism Insurance Coverage
Aug. 15, 2007
Public Schools Prepare to Educate Kids with Autism
June 28, 2007
Autism Poses Extra Obstacles for Blacks
June 14, 2007
Vaccines on Trial for Alleged Link to Autism
April 11, 2007
Parents of the Autistic Weigh Lifelong Care Options
April 5, 2007
Online Project Promotes Autism Research
March 15, 2007
Cause of Autism Narrowed Down to 100 Genes

ADA Disability Law and Policy- A National Audio-Conference

2007-12-11T11:02:00.000-05:00

Tuesday December 18

2 - 3:30 pm EST

Speaker
Peter Blanck, JD, Ph.D, Chair, Burton Blatt Institute, Syracuse
University

Reviewing previous research efforts, this session sets out a
blueprint for the role of research, policy, and law in advancing the
civic, economic and social participation of persons with disabilities
in a global society. It reviews past public policy efforts and
research findings regarding workers with disabilities. It discusses
current and future research initiatives on the cutting edge of
promoting successful employment outcomes for people with
disabilities. The discussion presents promising research
methodologies in multidisciplinary field disability and employment
research. Finally, our presenter will put forth challenges and
opportunities for research, policy, and legal initiatives, framing a
blueprint for the next quarter century.

Cost per site (regardless of the number of participants at each site)
$25 for nonprofits, individuals and government agencies
$40 for businesses

Sessions are 90 minutes and delivered by telephone (call in to a toll
free phone number that you can access after you register).
Participants are in a "listen-only" mode until the question and
answer period. The sessions are offered real-time captioned on the web.

Audio conferences are a great way to get information without
traveling. You sit in your office or home or at any telephone and
call in. If you have a speaker phone invite your colleagues to
participate.

Registration is at www.ada-audio.org

If you have problems/questions with registration: the Great Lakes ADA
Center at 312-413-1407 voice/tty

Pediatricians Recommending Autism Screenings before age two

2007-11-04T22:42:00.000-05:00

There is a new movement in the pediatric field for earlier screening for autism.

A new Web site debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. That Web site was profiled on Good Morning America last week, and is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.http://www.autismspeaks.org/

Partnering with Your Child's School: A Guide for Parents

2007-10-16T07:25:00.000-05:00

The HSC Foundation, in partnership with George Washington
University's Graduate School of Education and Human Development,
offers a new resource for parents. The booklet available online
and in hard copy in English and in Spanish, is designed to help
parents of children who have been diagnosed with health or mental
health care needs to learn about available resources and to
develop a partnership with their children's schools. The booklet's
content has been reviewed and validated by groups of parents,
youth, and educators and is produced in partnership with the
Council for Exceptional Children and the National Association of
State Directors of Special Education.

For more information, go to:
http://www.hscfoundation.org/whatwedo/familysupports.php

Hapy Columbus Day!

2007-10-08T11:34:00.001-05:00

Today is a Federal holiday-- with selected state, local offices and schools closed. You may want to debate the contributions of Christopher Columbus:

- he was trying to find a route to China, and thought he got to India
- modern history states didn't prove the world was flat-- that was the current thinking of the time
- he spread small pox to Native American tribes
- he owned slaves
- he died broke.

He did:

- expanded trade and the influence of Christianity
- made Europe aware there was another continent
- exported foods of the Americans (hot peppers, tomatoes) around the world.

Enjoy your day!

The 911 Modernization & Public Safety Act of 2007

2007-10-01T06:02:00.000-05:00

This is important legislation, so that people who are deaf or hard of hearing can use IM and online technology to get 9-1-1 information. Let your Congressman know about this, and that they need to support it!
--------------------------

Emergency Issues: Disability Coalition supports H.R. 3403, The 911
Modernization and Public Safety Act of 2007

The Coalition of Organizations for Accessible Technology (COAT),
comprising over 120 national and local disability groups, sent a
letter of support to the Congressional sponsors of H.R. 3403, "The
911 Modernization and Public Safety Act of 2007." This
legislation, if enacted, will help ensure that people with
disabilities have equal access to 9-1-1 emergency public safety
answering points ("911 centers") as these centers start using
Internet technologies. For instance, barriers must be identified
and solutions implemented for devices and services that connect to
911 centers when using Internet Protocol (IP). The bill would
require also that telecommunications relay service providers must
be involved in the development of the new national 9-1-1 plan and
must have the same protections from liability and
nondiscriminatory access to 9-1-1 centers that currently protect
wireline and wireless telephone carriers.

The Disability Coalition letter can be found on the AAPD website
at http://www.aapd.com/News/tech/070921coat.htm

Action Step: To show support for this effort, please send a letter
to your Congressperson urging them to vote for H.R. 3403 because
of these important disability provisions.

More on the COAT coalition at http://www.coataccess.org

SOURCE: AAPD
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Online Survey to Improve Employment Program for Persons with
Significant Disabilities

NISH is asking our community to participate in its online survey
to obtain feedback on the awareness and familiarity of, as well as
preference for the AbilityOne (formerly Javits-Wagner-O'Day)
Program within the disability community. NISH is a national,
nonprofit agency that provides employment opportunities for people
who are blind or have other severe disabilities by procuring
Federal contracts for goods and services.

NISH encourages you to respond to this brief survey that takes
less than 8-10 minutes, at:
www.surveymonkey.com/s.aspx?sm=xZB5seGvfyekj1FXwNY1LA_3d_3d

The intent of the survey is to help NISH modernize the AbilityOne
program. In addition, NISH will use this feedback to help improve
customer service to the nearly 48,000 individuals with severe
disabilities working in the AbilityOne Program. An alternative
copy of the survey is also available in MS Word format; please
contact Rachel Kelly at (703) 584-3938 or rkelly@... for the
MS Word version of the survey.

NISH contact: Larissa Timmerberg, Director, Workforce Development
at (571) 226-4521 or ltimmerberg@...

Further information at NISH website at http://www.nish.org

SOURCE: AAPD

ADA Restoration Hearing Scheduled in House Judiciary Committee

2007-10-01T05:42:00.000-05:00

ADA Restoration Hearing Scheduled in House Judiciary Committee

It's confirmed - the first hearing on ADA Restoration is scheduled
for NEXT THURSDAY, October 4 in the House Judiciary Committee.

If you're available, please plan on packing the room to show your
support! Alternately, the Committee's website indicates that there
will be a live webcast during the hearing into which you can
"tune" from wherever you are, if you're unable to come in person.

Here are the details from the House Judiciary Committee's website:

Thursday 10/04/2007
10:00 AM
2141 Rayburn House Office Building
Subcommittee on the Constitution, Civil
Rights, and Civil Liberties
Hearing on H.R. 3195, the "ADA Restoration Act of 2007"

*Information about the webcast is also available on the House
Judiciary Committee website at:
http://judiciary.house.gov/schedule.aspx
(click on October 4).

To read more about ADA Restoration, visit the ADA Restoration blog
at: www.adarestoration.blogspot.com

The Upside of Autism

2007-09-30T06:32:00.000-05:00

There is a good interview on NPR Speaking of Faith, that talks about the autism spectrum. The two parents talk about the family autistic traits, and how these traits lend themselves to specific career choices (i.e. science, computers, research, academia). Jennifer Elder and Paul Collins have a nice discussion on their child, and their insights on the autism spectrum.

I'm Back!

2007-08-20T14:31:00.000-05:00

For those you read this blog, sorry I have been away! But life has a habit of getting in the way of reflection, gardening and blogging! The past two months I have:

-settled into a job, managing a free clinic;
-teaching as a new adjunct instructor in public policy;
-continuing as a senior adjunct instructor in creative expression, and
-doing some consulting work as a computer instructor.

Whew!! So, this week I am back to one job.

Time for gardening, contemplation and online advocacy. So, in the words of James Brown

I'm Back!

Misunderstood Minds

2007-06-22T14:15:00.000-05:00

PBS Documentary on Learning Disabilities "Misunderstood Minds"

For one in five students, learning is an exhausting and
frustrating struggle. Often mistakenly called "lazy" or "stupid"
by their teachers, classmates, and even their families, these
children may be suffering from debilitating learning problems. If
not addressed, the problems can have a devastating impact on the
students' self-esteem and future academic and social success.

The PBS documentary "Misunderstood Minds" shines a spotlight on
this painful subject, following the stories of five families as,
together with experts, they try to solve the mysteries of their
children's learning difficulties. Produced and directed by Michael
Kirk, this 90-minute special shows the children's problems in a
new light, and serves as a platform to open a nationwide dialogue
on how best to manage young, vulnerable, and misunderstood minds.

Parents, teachers, and students looking for the scientific
explanations behind learning differences and strategies to aid
success in school can find both on the companion website for
"Misunderstood Minds." The site includes profiles of the students
in the documentary, as well as sections on Attention, Reading,
Writing, and Mathematics. Interactive activities, called
Experience Firsthand, are designed to give site visitors a sense
of what it may be like for a student struggling with a basic
skill.

Autism Research in the UK, court case in the US

2007-06-22T14:08:00.000-05:00

Here is a story on a court case pending, identifying the cause of a child's autism on vaccines.

http://apnews.myway.com/article/20070612/D8PMUNGO0.html

There is also a story on British research examining the protein imbalance in children with autism.

Interesting....

http://news.bbc.co.uk/2/hi/health/6221064.stm

BOYS WITH AUTISM, RELATED DISORDERS, HAVE HIGH LEVELS OF GROWTH HORMONES

2007-06-22T12:28:00.000-05:00

New developments in the ongoing mysteries of autism, and its seeming prevalence in boys....
-----------------

U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute of Child Health and Human Development (NICHD)

FOR IMMEDIATE RELEASE: Friday, June 22, 2007

Boys with autism and autism spectrum disorder had higher levels of
hormones involved with growth in comparison to boys who do not have
autism, reported researchers from the National Institutes of Health, the
Centers for Disease Control and Prevention, the Cincinnati Children's
Hospital and the University Of Cincinnati College Of Medicine.

The researchers believe that the higher hormone levels might explain the
greater head circumference seen in many children with autism. Earlier
studies had reported that many children with autism have very rapid head
growth in early life, leading to a proportionately larger head
circumference than children who do not have autism.

The researchers found that, in addition to a larger head circumference,
the boys with autism and autism spectrum disorder who took part in the
current study were heavier than boys without these conditions.

"The study authors have uncovered a promising new lead in the quest to
understand autism," said Duane Alexander, M.D., Director of the National
Institute of Child Health and Human Development, the NIH institute that
funded the study. "Future research will determine whether the higher
hormone levels the researchers observed are related to abnormal head
growth as well as to other features of autism."

Autism is a complex developmental disorder that includes problems with
social interaction and communication. The term autism spectrum disorder
(ASD) refers to individuals who have a less severe form of autism.

The study was published on line in "Clinical Endocrinology".

The researchers compared the height, weight, head circumference and levels
of growth-related hormones to growth and maturation in 71 boys with autism
and with ASD to a group of 59 boys who did not have these conditions.

The investigators found that the boys with autism had higher levels of two
hormones that directly regulate growth (insulin-like growth factors 1 and
2). These growth-related hormones stimulate cellular growth. The
researchers did not measure the boys' levels of human growth hormone,
which for technical reasons is difficult to evaluate.

The boys with autism also had higher levels of other hormones related to
growth, such as insulin-like growth factor binding protein and growth
hormone binding protein.

In addition to greater head circumference, the boys with autism and those
with autism spectrum disorders weighed more and had a higher body mass
index (BMI). BMI is a ratio of a person's weight and height. A higher
BMI often indicates that a person is overweight or obese. The boys'
higher BMI may be related to their higher hormone levels, said the study's
principal investigator, NICHD's James L. Mills, M.D., a senior
investigator in the Division of Epidemiology, Statistics and Prevention
Research's Epidemiology Branch. Dr. Mills and his coworkers also found
that there was no difference in height between the two groups of boys.

The levels of growth-related hormones were significantly higher in the
boys with autism even after the researchers compensated for the fact that
higher levels of these hormones would be expected in children with a
greater BMI.

"The higher growth-related hormone levels are not a result of the boys
with autism simply being heavier," said Dr. Mills.

While it has long been noted that many children with autism have a larger
head circumference than other children, few studies have investigated
whether these children are also taller and heavier, Dr. Mills added.

Researchers analyzed medical records and blood samples from 71 boys
diagnosed with autism and ASD who were patients at Cincinnati Children's
Hospital Medical Center from March 2002 to February 2004. The researchers
compared the information on the boys with autism and autism spectrum
disorders to other boys treated for other conditions at the hospital and
who do not have autism. Children with conditions that may have affected
their growth -- such as being born severely premature, long-term illness,
or the genetic condition Fragile X were not included in the study. Girls
are much less likely to develop autism than are boys, and the researchers
were unable to recruit a sufficient number of girls with autism to
participate in the study.

Dr. Mills explained that the bone age of the boys with autism -- the bone
development assessed by taking X-rays and comparing the size and shape of
the bones to similarly-aged children -- were not more advanced in the
group of boys with autism. For this reason, Dr. Mills and his coworkers
ruled out the possibility that they were merely maturing more rapidly than
were the other boys.

Dr. Mills said that future studies could investigate whether the higher
levels of growth hormones seen in children with autism could be directly
related to the development of the condition itself.

The NICHD sponsors research on development, before and after birth;
maternal, child, and family health; reproductive biology and population
issues; and medical rehabilitation.

The National Institutes of Health (NIH) -- The Nation's Medical Research
Agency -- includes 27 Institutes and Centers and is a component of the U.
S. Department of Health and Human Services. It is the primary federal
agency for conducting and supporting basic, clinical, and translational
medical research, and it investigates the causes, treatments, and cures
for both common and rare diseases. For more information about NIH and its
programs, visit <http://www.nih.gov>.

Public Hearings on Proposed Rules for Part C of IDEA 2004

2007-05-24T13:15:00.000-05:00

The Secretary of Education is proposing to make changes to theregulations for the Early Intervention Program for Infants andToddlers with Disabilities. The proposed regulations willimplement changes made to the Individuals with Disabilities Education Act by the Individuals with Disabilities EducationImprovement Act of 2004. You may comment on these regulations by accessing Regulations.gov. Comments must be received by July 23,2007. In addition, public meetings will be held as follows:

June 4, 2007, 4:00 p.m. to 7:30 p.m., Portland, Oregon
June 6, 2007, 4:00 p.m. to 7:30 p.m., Oklahoma City, Oklahoma
June 11, 2007, 4:00 p.m. to 7:30 p.m., Indianapolis, Indiana
June 14, 2007, 3:00 p.m. to 7:30 p.m., Washington, DC

SOURCE: U.S. Department of Education, Office of Special Educationand Rehabilitative Services

Emilio Gonzales- Epilogue

2007-05-24T13:10:00.000-05:00

Little Emilio has passed, in the loving arms of his mother-- as it should be. If society can learn anything from this infant's death, it is the importance of the right to value life, all life, and leave as much as we can about end of life decisions in God's hands.
----------------
Toddler at center of Texas legal fight dies

The Associated Press
AUSTIN -- A toddler whose terminal illness started a contentious legal and ethical debate over who decides when life-sustaining treatment should cease has died. Nineteen-month-old Emilio Gonzales died in his mother's arms Saturday night at Children's Hospital of Austin, said family attorney Jerri Ward. He had been on a respirator since December."God chose to take Emilio at this time," Ward said.The family has not requested an autopsy, said Michele Gonzalez, a spokeswoman for the Seton Family of Hospitals. Children's Hospital physicians will make a final determination on the cause of death by the middle of the week, she said.

Emilio was believed to have Leigh's disease, which destroys brain functions. Doctors wanted to invoke a state law allowing them to stop life support for patients deemed medically futile after a 10-day notice. Emilio's mother, Catarina Gonzales of Lockhart, said she knew that her son would die but wanted doctors to continue care, pointing out that he smiled and turned his head when he heard voices. In April, a judge agreed to temporarily block the hospital's move to end life support.

In legal filings, Gonzales' attorney contended that the state law allowing doctors to overrule the treatment decisions of loved ones when conflicts arise is unconstitutional. A hearing had been set for May 30.The Senate approved legislation this month to give patients' families more time before ending life-sustaining treatment.

Cheryl Eckstein
Founder President
Compassionate Healthcare Network
(CHN)CHN is a not for profit organization, formed 1990. CHN - 11563 Bailey Cres., Surrey, B.C. V3V 2V4 Canada Phone - 604 582 3844 Visit us at / www.chninternational.com/default.html CHN is member of the World Federation of Doctors Who Respect Human Life (WFDWRHL) Dr. Karl Gunning, Pres..

Autism Update- Supreme Court Sides with Parental Rights in Schools

2007-05-24T10:20:00.001-05:00

Supreme Court: Parents Don't Need Lawyer in Ed Cases
Monday, May 21, 2007
By Mark Sherman
The Associated Press
WASHINGTON, D.C. -

Parents need not hire a lawyer to sue publicschool districts over their children's special education needs,the Supreme Court ruled Monday.The decision came in the case of an autistic boy from Ohio, whose parents argued they were effectively denied access to the courts because they could not afford a lawyer.Federal law gives every child the right to a free appropriate public education, which in the case of special needs children sometimes means enrollment in a private facility.But most federal courts had concluded that parents who are not lawyers and who want to challenge decisions have to hire an attorney to represent them.

Justice Anthony Kennedy, writing for the court, said parents have legal rights under the Individuals With Disabilities in Education Act, the main federal special education law."They are, as a result, entitled to prosecute IDEA claims on theirown behalf," Kennedy said. The court sided with Jeff and Sandee Winkelman and their son,Jacob, in their fight against the Parma, Ohio school district.The Winkelmans can't afford a lawyer or the cost of private schooling for Jacob. Neither parent is a lawyer.The parents objected to the Parma schools' plan to educate Jacobat a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes in educating autistic children.

The Winkelmans have spent about $30,000 in legal fees since firstcontesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulingsand written her own filings.It is unclear how many parents forgo lawsuits because they can'tafford them, although advocates for disabled children said incourt papers that most parents of disabled children lack the meansto hire a lawyer.

Parents unhappy with a district's plan can appeal the decision through an administrative process. If they remain dissatisfied, they can file a civil lawsuit on their child's behalf, federal courts have said. At that point, however, most courts have saidthe parents must hire a lawyer.Whether Jacob should have private schooling at public expense wasnot before the Supreme Court, only his parents' right to go into federal court without a lawyer.The 6th U.S. Circuit Court of Appeals had ruled in the school district's favor. Monday's ruling overturned that decision.The case number is Winkelman v. Parma City School District, 05-983.

Source: Washington Post
__________________________________________________________

Autism Update- Supreme Court Sides with Parental Rights in Schools

2007-05-24T10:20:00.000-05:00

Some positive news on the parental school advocacy battlefront....
---------------
Supreme Court: Parents Don't Need Lawyer in Ed Cases
Monday, May 21, 2007
By Mark Sherman
The Associated Press
WASHINGTON, D.C. -

Parents need not hire a lawyer to sue public school districts over their children's special education needs, the Supreme Court ruled Monday.The decision came in the case of an autistic boy from Ohio, whose parents argued they were effectively denied access to the courts because they could not afford a lawyer. Federal law gives every child the right to a free appropriate public education, which in the case of special needs children sometimes means enrollment in a private facility. But most federal courts had concluded that parents who are not lawyers and who want to challenge decisions have to hire anattorney to represent them.

Justice Anthony Kennedy, writing for the court, said parents have legal rights under the Individuals With Disabilities in Education Act, the main federal special education law."They are, as a result, entitled to prosecute IDEA claims on theirown behalf," Kennedy said. The court sided with Jeff and Sandee Winkelman and their son, Jacob, in their fight against the Parma, Ohio school district. The Winkelmans can't afford a lawyer or the cost of private schooling for Jacob. Neither parent is a lawyer.

The parents objected to the Parma schools' plan to educate Jacob at a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes ineducating autistic children. The Winkelmans have spent about $30,000 in legal fees since first contesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulings and written her own filings. It is unclear how many parents forgo lawsuits because they can't afford them, although advocates for disabled children said in court papers that most parents of disabled children lack the means to hire a lawyer.

Parents unhappy with a district's plan can appeal the decision through an administrative process. If they remain dissatisfied, they can file a civil lawsuit on their child's behalf, federal courts have said. At that point, however, most courts have said the parents must hire a lawyer.Whether Jacob should have private schooling at public expense was not before the Supreme Court, only his parents' right to go intofederal court without a lawyer.The 6th U.S. Circuit Court of Appeals had ruled in the school district's favor. Monday's ruling overturned that decision.

The case number is Winkelman v. Parma City School District, 05-983.
Source: Washington Post
__________________________________________________________

Ashley X Update

2007-05-09T16:55:00.000-05:00

The Federal Government has finally weighed in on the Ashley Treatment issue. Read on and see what you think....
--------------------------
HHS Response Regarding the "Ashley Treatment"

Dear Readers,

The letter that follows is from the U.S. Department of Health
and Human Services and comes in response to a letter of concern
written by Kelly Buckland and John Lancaster of the National
Council on Independent Living regarding the growth attenuation
treatment, breast bud removal, and hysterectomy of "Ashley" a
nine year-old girl from Washington.

To read more about Ashley and the so-called "Ashley Treatment,"
visit AAPD's website at:
http://www.aapd.com/News/bioethics/indexbioethics.php
________________________________________________________________

Department of Health & Human Services

May 30, 2007

Kelly Buckland, President
John Lancaster, Executive Director
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, D.C. 20036

Dear Mr. Buckland and Mr. Lancaster:

Administration for Children and Families
Office of the Assistant Secretary, Suite 600
370 L'Enfant Promenade, S.W.
Washington, D.C. 20447

Secretary Leavitt has asked me to thank you for your letter
expressing concern about the disabled nine-year-old child known as
Ashley X. We agree that the well-being of children with
disabilities is of paramount importance.

Secretary Leavitt uses a 500-Day Plan as a management tool to
guide our Department's energies in fulfilling the President's
vision of a healthier and more hopeful America. In that plan, the
Secretary has a section called "Protect Life, Family, and Human
Dignity," which includes priorities that "Children are protected
from abuse and neglect" and "Seniors and persons with disabilities
are cared for with dignity and respect." Children with
developmental disabilities, including Ashley, are human beings
with inherent human dignity, and they are due all the rights and
respect that come with that status.

That is why the Department of Health and Human Services, through
the Administration on Developmental Disabilities within the
Administration for Children and Families, funds 57 protection and
advocacy (P&A) systems in the states and territories to protect
the civil and human rights of individuals with developmental
disabilities. The Washington Protection and Advocacy System opened
an investigation in January 2007 into the "Ashley Treatment"
interventions and the role of Seattle's Children's Hospital. On
Tuesday, May 8, 2007, the P&A released the findings of that
investigation. You may view the findings and entire report on the
Washington P&A website:
www.disabilityrightswa.org/news-1/ashley-treatment-investigation

I hope this information is helpful to you. Please call me if I can
be of further assistance.

Sincerely,

Daniel C. Schneider
Acting Assistant Secretary for Children and Families

Source: U.S. Department of Health and Human Services
________________________________________________________________

For more news issues, see:
http://www.aapd.com/docs/news.php

--------------------------

Margaret Mead once said that it only takes a few people to change the world. That is so true, today and everyday. It is applicable in this situation, as a few diligent disability advocates have been following this story, investigating the legality of the situation, and have put a few people's feel to the fire.

Maybe the next time someone gets an idea like 'the Ashley Treatment' they will hestitate, and think twice...

---------------------------

The Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW), opened an investigation in January 2007 into the "Ashley Treatment" interventions and the role of Seattle's Children's Hospital. Today, they released their findings of that investigation.

The view the full report, complete with appendix items, please visit our website www.DisabilityRightsWA.org .

You should know:

1. Children's Hospital violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment " which resulted in the violation of Ashley's constitutional and common law rights;

2. The Hospital has acknowledged the violation and accepted full responsibility;

3. The Hospital has entered into an enforceable, written five (5) year agreement with WPAS to take corrective action and other proactive steps; and

4, We have included a list of next steps in the Executive Summary that we hope will be a part of a nationwide collaborative effort of the disability community that will result in Ashley being the last person to receive "treatment" named for her.

Seattle Children's Hospital acknowledged the following in our five (5) year, enforceable agreement:

"Children’s has received and reviewed the WPAS report on Ashley and the treatment she received. In general, Children’s accepts the WPAS report. Specifically, Children’s agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."

Some of you may think having a court order is a procedural matter easily overcome. That is not the case. We encourage you to carefully read the legal requirements section of our report to gain a full understanding of this critical safeguard of the rights of children for whom this treatment may be proposed.

If you are wondering about the applicable law in your state the first appendix section includes contacts from many states who have agreed to share their knowledge of the law in their states.

Let us know if you have any questions.

Mark Stroh, Executive Director
Washington Protection & Advocacy System*
315 - 5th Ave South, Suite 850
Seattle, WA 98104
mstroh@wpas-rights.org
ph: (206) 324-1521 / 800-562-2702
tty: (206) 957-0728
fax: (206) 957-0729

Ashley Hearing & Emilio Gonzales Decision- 9am tomorrow May 8th

2007-05-07T16:17:00.000-05:00

Below, you will find several important updates, including events occurring TOMORROW, Tuesday, May 8th, regarding both Emilio Gonzales in Austin, TX and Ashley X in Seattle, WA. The first update and call to action is in reference to a 9am hearing for Emilio that takes place tomorrow morning. The second is in regard to a report due to be released tomorrow by the Washington Protection and Advocacy System that reveals how the Seattle Childrens Hospital broke the law when it performed Ashleys hysterectomy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The following update and call to action comes to AAPD from Bob Kafka (Not Dead Yet of Texas, ADAPT
Advocates: The life and death struggle of Emilio is now in the hands of the Court.

There will be a hearing on Tuesday, May 8th at 9am, CourtHouse, Room 201 (Between 11th and 12th St just west of Gualadupe) Austin, Texas. The legal issues are complex but it is believed if Emilio had a tracheotomy he could leave the hospital and be with his mother and die in a more dignified setting. If you are on a respirator or your child is, please come to the Court House and show that living on a respirator in the community is possible.

If you support the rights of people with significant disabilities please attend this hearing. This is a human and disability rights issue. Doctors should not be able to override our expressed wishes. Ironically the Catholic Church (Sisters of Charity run the hospital) and the Austin Bishop are supporting the killing of Emiliio. Orwellian speak has made them describe treatment of Emilio as "prolonging dying" rather than what it is "infanticide."Protecting the zygote seems more important than protection of the life of a 17 month child. Doctors are not infallible and should not play _ _ _ !

Please come to the Court House on Tuesday and support Emilio.
SOURCE: NOT DEAD YET of Texas ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The following update comes to AAPD from Amber Smock of Feminist Response in Disability Activism (FRIDA)

Thanks to Steve Drake of Not Dead Yet, FRIDA has learned that the Washington Protection and Advocacy System found that Seattle Children's Hospital failed to secure a court order for Ashley X's hysterectomy. (Please read below for the full announcement.) The report will be released on Tuesday. FRIDA thanks the WPAS for their exposure of this systemic breakdown. We encourage anyone who may be in the area on Tuesday to go to Seattle Children's for the report release at 10 am PST to represent for our community.FRIDA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thursday, May 03, 2007

WPAS Finds Hospital That Performed "Ashley Treatment" Violated Law by Not Having Court Order Hospital Takes Full Responsibility and Implements New Safeguards

SEATTLE, WA - An investigative report released today by the Washington Protection and Advocacy System* (WPAS) about the much-publicized "Ashley Treatment" finds that Children's Hospital and Regional Medical Center, as a result of a communication breakdown, violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment" on a 6-year old with a developmental disability without a court order. This resulted in a violation of Ashley's constitutional and common law rights. Children's Hospital has acknowledged that Washington law requires a court order for the sterilization of a child with a developmental disability and has entered into an agreement with the Washington Protection and Advocacy System (WPAS) to take corrective action to assure that the sterilization of a child with a development disability does not happen again without a court order. Above and beyond the corrective action, Children's Hospital is taking additional steps to protect the rights of their patients with developmental disabilities.

WHAT: Release of WPAS' Investigation Report into "Ashley's Treatment" & Discussion of the Children's Hospital Response***also available to interview are disability advocates, parents of children with disabilities, and hospital officials***

WHO: David Carlson, WPAS Associate Director of Legal Advocacy;
Deborah A. Dorfman, WPAS Dir. of Legal Advocacy and Assoc.Executive Director;
Dr. David Fisher, Children's Hospital Medical Director;
Gail Lainhart-Rivas, Parent;
Corinna Lang Fale, SelfAdvocate;
and Curt Decker, Executive Director National DisabilityRights Network (NDRN) based in Washington, DC.

WHEN: 10:00 a.m. PST - Tuesday, May 8, 2007

WHERE: Auditorium, Seattle Children's Hospital and Regional Medical Center, 4800 Sand Point Way NE Seattle WA 98105
Park in Giraffe garage and check-in at Giraffe entrance
For the Main Campus directions, visit:www.seattlechildrens.org/home/about_childrens/maps_directions/

Washington Protection and Advocacy System (WPAS) is a private non-profit organization that protects the rights of people with disabilities statewide. The mission of WPAS is to advance the dignity, equality, and self-determination of people with disabilities. WPAS works to pursue justice on matters related to human and legal rights.

As part of a national trend with protection and advocacyagencies, WPAS is changing its name to Disability Rights Washington effective June 1, 2007.315 - Fifth Avenue South, Suite 850* Seattle, WA 98104tel: (206) 324-1521 * tty: (206) 957-0728 * fax: (206) 957-0729wpas@wpas-rights.org * www.wpas-rights.orgSource: FRIDA, Not Dead Yet

ADAPT Shuts down the American Hospital Association

2007-05-01T21:13:00.000-05:00

On May 1st, 2007, two hundred activists hit the streets of Washington, D.C. The focual point of todays Washginton, D.C. tour was the American Hospital Association. This organization's practice of direct nursing home placement, without consumer assitance in returning to home, or knowing of community based service options perpetuates the instiuttuional bias of the medical profesison. this group of protesters fuilled the lobby of the building, seeking to talk to the the CEO. The group was able to have a meeting brokered by the Capitol Police. A promise of a meeting within thrity days was arranged, with the topic of discussion revamping the hospital discharge prosess, and the philosophy of it.

Before leaving, one of the Capitol police commended us for our work, being civil in our disobedience and shared his personal experience about a family member with a head injury. He wished us luck in our pursuit of a meeting, and stated that if they did not meet with us, he expects to see us back again next year.

Hurrah!

Disability Activists Arrested

2007-04-30T22:37:00.000-05:00

The Rayburn House was the scene of disability power today, April 30, 2007, in Washignton DC. ADAPT, a disability civil rights group, was in full effect. The group was calling on the House of Representative to have hearings on the Community Choice Act. This bill has sponsors in the US Senate, but has received a tepid reception in the House. The Community Choice Act would fund home based, consumed directed care, as a viabile alternative to nursing home placement. This alternative would save millions of dollars, and improve the quality of life for people with disabilities stuck in nursing homes.

The House of Representative police offerred no dialogue or discussion-- three quick warnings, and they were arresting people in wheelchairs. Over one hundred people were taken into custody. (I found it interesting that they took more time to discuss using rubber gloves, in case of 'contact', than actual dialogue with the crowd or its representatives.)

The balance of the group-- about three hundred people- gathered in a park across from the detainment center, and cheered on those who were brave enough to stand up for freedom and be arrested. As the afternoon heated up, into the 80's, a small contingent braved the heat and humidity, to stand vigil.

The PD started to release group members at about 10:00pm, Supporters and well wishers were on hand to encourage and welcome them with cheers, whistles, and cold pizza! The last activists were released at 3:30pm...

Save Emilio Gonzales Petition

2007-04-20T08:56:00.000-05:00

Judge Herman postponed the hearing on Emilio until May 8t . He will receive treatment at least until then.

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

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

Emilio Gonzales and the Implications to Catholic Hospital

2007-04-17T09:15:00.000-05:00

The Emilio debate rages on, as the Catholic Church weighs in on its moral obligations versus its legal requirements....
--------------------------------
Medical guidance from the church
In Gonzales case, church teachings are interpreted differently

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

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

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

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

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

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

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

Emilio Updates

2007-04-11T12:26:00.000-05:00

Emilio lives! And perhaps the right to live can be decided by the family, and not a hospital committee. Sign the petition to let him continue his natural life's progression...
---------------------------
Dear Readers,The following update comes from Diane Coleman of Not Dead Yet:"Bob Kafka just called to let us know that Emilio's attorney wassuccessful in getting a temporary restraining order (TRO) untilApril 19, extending the time during which he will continue toreceive life-sustaining treatment.Bob believes that we should continue our efforts to focus onTexas Governor Perry, including letters, calls and the petition,and he thinks that the political activity around the case impactedthe court."

AAPD is writing a second letter to Governor Perry, a copy of whichwe will be posted on the AAPD website by tomorrow at:http://www.aapd.com/News/bioethics/indexbioethics.phpThe petition is located at:http://www.petitiononline.com/emilio16/petition.html

There is also coverage on CNN at http://www.cnn.com/2007/LAW/04/10/baby.care.ap/
---------------------------
Case Puts Texas Futile-Treatment Law Under a Microscope
Statute Allows for Deadline on Care
By Sylvia Moreno
Washington Post Staff Writer
Wednesday, April 11, 2007; p. A03

AUSTIN, April 10 -- A 17-month-old deaf, blind and terminally ill child on life support is the latest focus in an emotional fight against a Texas law that allows hospitals to withdraw care when a patient's ongoing treatment is declared "medically futile."Since Dec. 28, baby Emilio Gonzales has spent his days in a pediatric intensive care unit, mostly asleep from the powerful drugs he is administered, and breathing with the help of a respirator. Children's Hospital here declared his case hopeless last month and gave his mother 10 days, as legally required, to find another facility to take the baby.

That deadline, extended once already, was due to expire Wednesday, at which time the hospital was to shut off Emilio's respirator. Without the machine, Emilio would die within minutes or hours, hospital officials have said.But the child's mother, Catarina Gonzales, 23, and lawyers representing a coalition of state and national disability rights advocates and groups that favor prolonging life persuaded a Travis County judge Tuesday to force the hospital to maintain Emilio's care while the search for a facility to accept him continues. The group's attempt last week to persuade a federal judge to intervene in the case failed.County Probate Judge Guy Herman appointed a guardian ad litem, or attorney, to represent Emilio's interests and issued a temporary restraining order prohibiting Children's Hospital from removing life-sustaining care from the child.

He set an April 19 hearing on the mother's and lawyers' request for a temporary injunction against the hospital.
----------------------
Here is an article talking about the issue from another perspective-- the rights of the hospital to decide if a life is worth using their resources for...
---------------------

April 9, 2007, 2:23PM
Unusual Texas law at center of fight over baby's life
By KELLEY SHANNON
Associated Press Writer © 2007
The Associated Press AUSTIN -

As 17-month-old Emilio Gonzales lies in a hospital, hooked up to tubes to help him breathe and eat, his mother holds him close and cherishes every movement.Catarina Gonzales knows her baby is terminally ill and that one day she'll have to let go. But it's not yet time, she and her attorneys contend in their legal clash with hospital officials who want to stop Emilio's life-sustaining treatment. An unusual Texas law signed by George W. Bush when he was governor lets the hospital make that life-or-death call.

The latest legal dispute over the law - Emilio's case - goes to court again Tuesday, the day his life support is set to end."The family has made a unified decision" to keep Emilio living through artificial means, said Joshua Carden, an attorney for the Gonzales family. "The hospital is making quality of life value judgments. That's a huge source of concern."Children's Hospital of Austin has been caring for Emilio since Dec. 28. He's believed to have Leigh's Disease, a progressive illness difficult to diagnose, according to both sides.The boy cannot breathe on his own and must have nutrition and water pumped into him. He can't swallow or gag or make purposeful movements, said Michael Regier, general counsel for the Seton Family of Hospitals, which encompasses the children's hospital.Emilio's higher order brain functions are destroyed, and secretions must be vigorously suctioned from his lungs, Regier said."The care is very aggressive and very invasive," Regier said.

Though the treatment is expensive, the hospital contends that money is not part of its decision. Emilio has health coverage through Medicaid.Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, Regier said.So the hospital invoked the state law that allows it to end life-sustaining treatment in medically futile cases after a 10-day notice to the family. That deadline was voluntarily extended while the hospital and family tried to find another facility to care for Emilio, though as of Monday none had been located.

Children's Hospital has contacted 30 different medical facilities in Texas and elsewhere.Lawyers for the Gonzales family said they were continuing to work Monday to find another place for him. Catarina Gonzales, 23, who has no other children and cannot have more, denies that her son is non-responsive, as medical caregivers say, Carden said. She says that the boy smiles and turns his head toward voices."Every day that her son is alive and she gets to hold him and be next to him moving around is a precious day for her," Carden said.Carden is working with the family through the Alliance Defense Fund and lead attorney Jerri Ward, who has represented other Texans in similar disputes with hospitals over life-sustaining treatment.

The 1999 Texas law is increasingly under fire from patient advocates, disability rights groups and Texas Right to Life, best known for its anti-abortion efforts.Those varying interests want to change the so-called futile care law to eliminate the 10-day provision for cutting off life support because they say it's not enough time to transfer a critically ill person to another facility. A state Senate committee plans to hear testimony on proposed changes to the law Thursday.

The powerful Texas Hospital Association and other medical organizations largely support the existing law and say it's not frequently used because families and doctors usually agree on the patient's treatment. Texas Right to Life, which is helping the Gonzales family try to relocate Emilio, said it has been involved in more than two dozen similar cases over the past year and a half.Emilio's situation differs from the case of Terri Schiavo in Florida, who was in a persistent vegetative state and at the center of a legal dispute over whether to remove her feeding tube. In that case, family members disagreed with each other about the course of treatment. Schiavo died after her tube was removed in 2005.

Texas is one of the few states with a timetable allowing hospitals to decide to end life-sustaining treatment, according to studies cited by activist groups. In Emilio Gonzales' case, attorneys for both the family and the hospital say the boy would likely die soon after his ventilator is shut down.Last week, a federal judge refused to intervene and left it to the state court where a lawsuit was pending that seeks to declare the Texas futile care law unconstitutional.

What is immediately at stake before an Austin judge Tuesday is whether a temporary restraining order is granted prohibiting Emilio's life support from being cut off by the end of the day."We feel that the original decision is right, and it's time to proceed," said Regier, the hospital's lawyer.If the hospital is allowed to go forward, the life support equipment would likely be turned off during the day Wednesday when the family can be present and have the aid of social workers and chaplains, he said.Carden argues that Emilio's death by asphyxiation would be painful. He said the law prevents hospital workers from even giving the boy the drugs death row inmates receive to help them as they are executed by lethal injection."It's not like he'll just drift quietly off," he said.

Autism Awareness Month

2007-04-01T23:11:00.000-05:00

April is Autism Awareness Month. I will be posting interesting facts, activities and tidbits throughout the month. I also have some previous posts in February and March 2007 tht you can review.

Here are a few home movies on the topic from You Tube;

http://www.youtube.com/watch?v=BKgU2okU8Wo

and some PSA's

http://www.youtube.com/watch?v=QivPTrtu9_Q&mode=related&search=

http://www.youtube.com/watch?v=ANoK3eGkUc4&mode=related&search=

and debate on potential legislation

http://www.youtube.com/watch?v=cLdXcb5Pc6Q&mode=related&search=

and cultural heroes

http://www.youtube.com/watch?v=g6laOv94VUU&mode=related&search=
http://www.youtube.com/watch?v=1fw1CcxCUgg&mode=related&search=
http://www.youtube.com/watch?v=dmhfm81Vxuo&mode=related&search=

and poetic expression

http://www.youtube.com/watch?v=RUTFIuayPJY&mode=related&search=

--------------

Here is some new research on the Autism front:

------------------------

Moms of autistic kids report close bond

Staff report

(May 9, 2007) — Rochester researchers found that mothers of children with autism were more likely to say they had a close relationship with their child and less anger than moms of children without autism.Guillermo Montes at the Children’s Institute in Rochester and Dr. Jill Halterman at Golisano Children’s Hospital at Strong took data from the 2003 National Survey of Children’s Health, in which moms of kids ages 4 to 17 were surveyed. The study, published in the May edition of Pediatrics, said moms of kids with autism also were more likely to report that they had better coping skills.However, those same moms also said they had more stress and had poor or fair mental health when compared with mothers of non-autistic children.“This is good news for mothers of children with autism,” said Montes in a press release. “These mothers show remarkable resilience in the context of high stress level and poorer mental health.”The national survey included 61,722 moms, 364 of which had autistic children.

Rochester Democrat and Chronicle. May 9, 2007
Retrieved from http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070509/NEWS01/70509034/-1/UPDATES

Oh Come and Give Ohio Praise...

2007-03-31T22:53:00.000-05:00

I am definately a fair weather fan, but I have to give acknoledgement to one of my alma maters for a win against the basketball machine Georgetown University. Ohio State is in the NCAA basketball (no, that is NOT a typo-baseketball) finals!

A Disability Community Thumbs Up To...

2007-03-31T21:32:00.000-05:00

1. House Passes Bill to Improve Veterans' Care
March 29, 2007
WASHINGTON, D.C. (AP) Reacting to shabby treatment of wounded service members at Walter Reed Army Medical Center, the House on Wednesday created a coterie of case managers, advocates and counselors for injured troops returning from Iraq and Afghanistan.

The Wounded Warrior Assistance Act, approved 426 to 0, also establishes a hot line for medical patients to report problems in their treatment and demands an end to the red tape that has frustrated disabled service members as they move from Pentagon care to care by the Veterans Affairs Department.
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Definately a two thumbs up! Sometimes government sees the obvious, grasps the obvious, and does the right thing!
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2. Independent Living Centers (ILC's) Freeing People Trapped in Nursing Homes

In 2004, a reporting by ILCs showed that they "successfully relocated" 2,864 persons.
In 2005, they reported only 2,867 persons were "relocated,"a/k/a were freed from unnecessary institutionalization! [Source: Steve Gold, The Disability Odyssey continues]
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The work continues-- I am looking forward to a continued increase in people with disabilities, living in the community. Better quality of life, and cheapter-- could it get any better?

3. Susan & Hillary Pushing for War Injured- Establishing TBI Legitimacy

March 29, 2007
Washington, DC - U.S. Senator Susan Collins today announced that she has joined with Senator Hillary Rodham Clinton (D-NY) in introducing legislation to improve the detection, assessment, and treatment of Traumatic Brain Injury (TBI) among wounded service members and to expand support for the victims of TBI and their families.

The “Heroes at Home Act” would authorize $3.75 million for the Secretary of Defense to implement and (sic) objective, computer-based assessment protocol to measure cognitive functioning, both prior to and after deployment, in order to facilitate the accurate diagnosis and treatment of mild and moderate TBI.
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A bit of pandering to the disability community? Probably.
What do I think? Sometimes its better to do the right thing, for the wrong reason, than to do nothing at all!
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4. Sen. Tom Harkin (D-IA) introduced the Promoting Wellness for Individuals with Disabilities Act of 2007 (S. 1050) which:

Amends the Public Health Services Act to require medical and dental schools and residency programs to increase training to improve competency and clinical skills in providing care to patients with disabilities, including those with intellectual disabilities;

Authorizes wellness grant programs to fund programs for smoking cessation, weight control, nutrition and fitness that focus on the unique challenges faced by individuals with disabilities; preventative health screening programs; and athletic or sports programs that provide individuals with disabilities an opportunity to increase their physical activity; and

Establishes accessibility standards for medical diagnostic equipment.
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Yeah! acknowledgement of medical community deficits and a measurable remediation plan!
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5. The Senate expanded the small business tax package

Why is this good news? The Senate small business tax package includes a five year extension of the Work Opportunity Tax Credit (WOTC). This tax credit can be claimed by employers who hire from certain targeted populations including people with disabilities.
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OK House-- now its your turn.

Emilio's Story

2007-03-23T22:22:00.000-05:00

This is a story that is below the radar, but people need to know. A Catholic hopsital wants to deny medical treatment for a child with a rare congential disease, Leigh's Disease, who is blind and deaf, and has a shortened life expectancy. Most kids live until 6-7; Texas doesn't want to find out.

It is interesting to note that because he is young and poor, the concerns focus not on the sanctity of life, but how he can't feel, or think, and how the ventilator is cruelty...

A poor family, on Medicaid is not given other options, so they are fighting it out in court....

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Restraining Order Gives Disabled Child Emilio 19 More Days of Life at Catholic Hospital

By Hilary White
AUSTIN,
March 22, 2007 (LifeSiteNews.com) -

Emilio Gonzales has been given a reprieve by a restraining order to prevent a Catholic hospital from removing his respirator in ten days, as planned. Officials at the hospital have agreed to continue his care until at least April 10.The hospital's decision came after Emilio's mother, Catarina Gonzales filed a restraining order to require the hospital to continue her infant son's treatment, which consists of a respirator and feeding tube. She hopes the extra time will be sufficient to find another hospital willing to continue Emilio's care but so far facilities in Texas, Oklahoma, California and New York have all turned down her requests.

Gonzales was told by the Brackenridge Children's Hospital of Austin, March 12, that she had ten days to find another care facility or they would turn off Emilio's respirator. Brackenridge is part of the Seton Catholic health care system.Doctors have said that that Emilio's treatment is "medically inappropriate" although they have admitted that without the assisted breathing and nutrition and hydration, the child, who was born blind and deaf and suffers from Leigh's Disease, would die within days. "This care is medically inappropriate," said committee member Michael Regier. "The aggressive care that this infant is receiving is causing suffering, harm to the infant and without clinical benefit, and that should be discontinued."

Texas is one of two states with a "futile care" law that allows physicians to discontinue life-saving treatment without the consent of patients. Texas legislators are currently considering changing the law to require medical facilities to maintain such treatment until families can find alternate care arrangements. Leigh's disease is an incurable neurometabolic disorder that affects the central nervous system leading to loss of motor control and frequently to eventual respiratory, kidney and heart failure. Sufferers can live as long as may live to be 6 or 7 years of age. Some have survived to their mid-teenage years. Emilio is now 16 months old."I'm scared, because I don't want to lose my son, because I know he's moving," said Catarina. "I wish people could see him.""My biggest concern is the lack of time, which has always been my concern with this particular statute, because 10 days is simply not enough time in a situation like this to find another transfer," said Catarina's attorney, Jerri Ward told KXAN, a local NBC news affiliate.If the hospital does not grant an extension, the next step is a court hearing Wednesday.

Read previous LifeSiteNews.com coverage:

Mother Given 10 Days to Find New Hospital For Sick Child or Hospital Will Remove Respirator http://www.lifesite.net/ldn/2007/mar/07032102.html

Autism Updates

2007-03-19T06:45:00.000-05:00

There is a good deal of new news on the autism spectrum front. There is info on childhood autism, as well as some medical professionals developing some insight on autism, based upon new technology such as YouTube.

New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)

Here are other hyperlinks:

http://www.troyrecord.com/site/news.cfm?newsid=18042693&BRD=1170&PAG=461&dept_id=7021&rfi=6

http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070306/NEWS01/703060316/1002/NEWS

http://timesunion.com/AspStories/storyprint.asp?StoryID=569247

http://www.timesunion.com/AspStories/story.asp?storyID=568457&category=OPINION&newsdate=3/4/2007
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Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9

Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.

Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.

Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.

The Ashley Treatment and Bioethics

2007-03-19T06:23:00.000-05:00

This is an interesting article, looking at the discussion around Ashley Treatment, and its ramification for journalism. As an American, we dropped the ball on this one-- the Brits are the ones who put it into the public forum, giving it light and air. However, the American activist community has been diligent in keeping this on the radar, and holding decision makers in the medical professions responsible for devaluation of lives of people with disabilities.

We need to make sure journalist keep to their professional obligations of the public's right to know...

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After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow

The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?

To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.

RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents

"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro

" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan

In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?

Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.

All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.

Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?

So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?

So future coverage ideas:

a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.

What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.

It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.

How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.

How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.

People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.

What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.

EP Position on the Ashley Treatment & other misguided ideals

2007-03-06T19:40:00.000-05:00

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________________________________________________________________

Reauthorize Individuals with Disabilities Education Act [IDEA]-- Comments Sought

2007-02-25T15:04:00.000-05:00

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.

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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.
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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
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The World of Autism-- the Dark Side

2007-02-25T14:39:00.000-05:00

No matter what services are available, and improvements in quality and quantity, we must be ever vigilant...

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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.

The World of Autism

2007-02-21T08:15:00.000-05:00

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...

Ashley Treatment Update

2007-02-13T22:34:00.000-05:00

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.

A Disability Community Thumbs Up to...

2007-02-08T08:00:00.001-05:00

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.

AAPD Online Forum Launched

2007-02-08T07:46:00.000-05:00

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.

Recruiters Seek Disabled Students

2007-02-08T07:26:00.000-05:00

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

Paretal Tool Kit for Children with Disbilities

2007-02-03T20:06:00.000-05:00

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

A Mad, Mad, Mad Disability World- A Thumbs Down to...

2007-02-03T19:41:00.000-05:00

#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.__.
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#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

Ehler-Danlos Syndrome should not be used for media titilation

2007-01-28T14:11:00.000-05:00

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

Assistive Technology Design Competition

2007-01-24T20:35:00.000-05:00

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

The Importance of Penmanship...

2007-01-18T23:08:00.000-05:00

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...

Disability Rights 2006- the year in review

2007-01-18T23:03:00.000-05:00

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

Martin Luther King Jr. Day

2007-01-15T15:04:00.000-05:00

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.

Disability Community is Taking Action on the Ashley Treatment!

2007-01-11T10:24:00.000-05:00

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.stm http://www.dredf.org/news/in_news.shtml

MS General Information

2007-01-10T21:59:00.000-05:00

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?

Guide Dog for Deaf/Hard of Hearing in Need of a Home

2007-01-10T09:23:00.000-05:00

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.

How to Legally Mutate Your Child--Pillow Angel

2007-01-05T15:14:00.000-05:00

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.
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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 Silverberg Arthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania
Thirza Cuthand at Fit of Pique I'm Funny Too at Did I Miss Something?

Least Restrictive Environment LRE

2007-01-04T09:35:00.000-05:00

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)

Eliot Spitzer and Day One- the Short Version

2007-01-03T19:13:00.000-05:00

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.

Christmas Tales from the Disability World

2006-12-24T15:59:00.000-05:00

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..

2006-12-24T15:12:00.000-05:00

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

Don't Mess with Me-- I have a 504 Plan!

2006-12-13T21:36:00.000-05:00

I have created a Teenage Advocacy Monster!

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)?

2006-12-13T20:36:00.000-05:00

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.