Ehler-Danlos Syndrome should not be used for media titilation

There is a special this week on ABC (Medical Mysteries) about Ehler-Danlos Syndrome which is causing an uproar in the disability community. Read on and go to ABC's website and express your concerns and thoughts...

There is also a pre-formulated Action Alert for response:
https://secure2.convio.net/apf/site/Advocacy?%20%20pagename=homepage&page=SplashPage&id=201&JServSessionIdr001=2i1pn86n52.app6b

Assistive Technology Design Competition

For those who tinker in the basement, or have friends, family that do....
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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...

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

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

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!

ACTION ALERT! STOP THE ASHLEY TREATMENT!

BACKGROUND:

Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Children’s Hospital are having her undergo hormone “therapy” to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The “Ashley Treatment,” as her parents call it, is a medical “fix” to serious social problems we face in America today.

The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, “When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.” Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, urges you to speak out about the “Ashley Treatment.”Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital. We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.

ACTION:

Email OR Call the people below.

Tell them to:

-Oppose their permission of what is now known as the “Ashley Treatment,” and
-Condemn further permission of such “treatments” for children with disabilities.

Dr. Douglas DiekemaPhone: 206-987-2380B-5520 – Emergency Medicine4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Douglas.diekema@seattlechildrens.org

Dr. Daniel F. GuntherPhone: (206) 987-2380M1-3 – Endocrinology4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Dan.gunther@seattlechildrens.org

Melinda GatesPO Box 23350Seattle, WA 98102Phone: (206) 709-3100Fax: (206) 709-3252Email: info@gatesfoundation.org

Susan MacekDirector of Communications, Seattle Children’s HospitalPhone: (206) 987-5201Pager: (206) 469-6310E-mail: susan.macek@seattlechildrens.org

OTHER INFORMATION

To review Ashley’s parents’ blog, please see:http://ashleytreatment.spaces.live.com/

To review other articles on this topic, please see:http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stmhttp://www.dredf.org/news/in_news.shtml

MS General Information

There are some links to a variety of topics about MS. Please feel free to share these with anyone who may need it.
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( http://www.webmd/. <http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Arm Yourself against MS_

( http://www.webmd/. <http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) Learn new therapies to help you_ manage your symptoms._ ( http://www.webmd/.

<http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Vaccine to Reverse the Effects of MS _

( http://www.webmd/. <http://www.webmd.com/content/pages/26/115077.htm> com/content/pages/26/115077.htm) _Get WebMD-trusted information when you Google!_

( http://www.webmd/. <http://www.webmd.com/content/pages/26/114984.htm> com/content/pages/26/114984.htm) _Early Results Promising for MS Drug_

( http://www.webmd/. <http://www.webmd.com/content/article/127/116686.htm> com/content/article/127/116686.htm) _Treating the Patient, Not Just the Pain_

( http://www.webmd/. <http://www.webmd.com/content/article/121/114108.htm> com/content/article/121/114108.htm) _Controlling a Relapse_ ( http://www.webmd/.

<http://www.webmd.com/hw/multiple_sclerosis/hw191022.asp> com/hw/multiple_sclerosis/hw191022.asp) _Join the MS message board_ ( http://boards/.

<http://boards.webmd.com/topic.asp?topic_id=59> webmd.com/topic.asp?topic_id=59) _Quiz: Living Well with MS_ ( http://www.webmd/.

<http://www.webmd.com/content/tools/1/multiple_sclerosis_quiz> com/content/tools/1/multiple_sclerosis_quiz) _Don't Let Overactive Bladder Embarrass You_

( http://www.webmd/. <http://www.webmd.com/content/tools/1/quiz_quality_of_life.htm> com/content/tools/1/quiz_quality_of_life.htm) _Romance, dating with MS: No need to hide_

( http://www.webmd/. <http://www.webmd.com/content/Article/120/113800.htm> com/content/Article/120/113800.htm) _Diagnosis MS: Early Treatment is Best_

( http://www.webmd/. <http://www.webmd.com/solutions/diagnosis-multiple-sclerosis> com/solutions/diagnosis-multiple-sclerosis) _Living With MS: MS in the Workplace_

( http://www.webmd/. <http://www.webmd.com/content/Article/117/112732.htm> com/content/Article/117/112732.htm) _Find a Physician_ ( http://www.webmd/.

<http://www.webmd.com/pages/dir/toc.asp?sponsor=core&z=1827_00000_2209_wk_03> com/pages/dir/toc.asp?sponsor=core&z=1827_00000_2209_wk_03) _ How Does Geography Affect MS?_ ( http://www.webmd/. <http://www.webmd.com/content/healthwise/60/15015.htm> com/content/healthwise/60/15015.htm) _Resources for Caring for Someone with MS._

( http://www.webmd/. <http://www.webmd.com/content/article/57/66149.htm> com/content/article/57/66149.htm) Questions about your medication?

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

Is there anyone who needs a hearing/service dog? This pup is in a shelter. Here's a copy of the e-mail I received and I agreed to passon info Please forward the announcement.

http://search.petfinder.com/petnote/displaypet.cgi?petid=6365572

This dog is a Katrina survivor and is an owner surrender. that hasbeen checked out. This dog knows sign language and should go to someone who needs a hearing dog. He is far too big for Fay she only weights about a 100 lbs. I did talk to her about him she still wants her Hunter. I thought maybe you would know some one or a group thecould place this dog with someone who could really use him.Thanks for your help.

How to Legally Mutate Your Child--Pillow Angel

I donot have the words for this article. But read, click and decide how far it too far for elective surgeries and treatment for children with disabilities.... I posted some comments here

Frozen In Time: The Disabled Nine-Year-Old Girl Who Will Remain A Child All Her Life*

Parents fiercely criticised over 'offensive' surgery* Disability groups say case raises troubling issues. (The Guardian Ed Pilkington in New York Thursday January 4, 2007.)

Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth.She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow."Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond.

Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size. Although she has a normal life expectancy, she will, physically, always be nine years old.

Her growth has been suspended at 4ft 5in(1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth.

It is the first time they have given a public account oftheir actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug. She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmentallevel since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life.

In discussions with doctors at Seattle Children's hospital they devised the treatment: removal ofAshley's uterus to prevent fertility, excision of early buds onher chest so that she would not develop breasts, and medicationwith high doses of oestrogen to limit her growth by prematurelyfusing the growth plates of her bones.The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease orconvenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.

But as news about the treatment became known, Ashley's parents were surprised by the virulence of some of the response. Comments on chatboards have included:

"Ouch - this smacks of eugenics";

"I find this offensive, truly a milestone in our convenience society";

"This smells, I can't agree with this".

Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. "People have been horrified by the discrepancy," said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists. She said she felt for Ashley's parents and could understand why they had made the decision. But she feared that the treatment would open a Pandora's box that could have adverse effects for other children.

"What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning? This is very troubling."Debate has raged among doctors and medical ethicists. JeffreyBrosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. "This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families,but what we need most is better federal funding so that they canbe cared for properly."State help for caring for disabled people is available throughMedicaid, which is restricted to poor families. Ashley's parents would not qualify, and say it is impossible to find carers they can afford.

The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee. The doctors accept that Ashley's hysterectomy was contentious, given the dark history of sterilization ofdisabled people in Europe and America, and that there were risks involved in the operations and estrogen doses. But they argue the benefits outweigh the risks.

Ashley has, they admit, been "infantilised" but question the harm that would do a person whose mental capacity "will always be that of a young child".Ashley cannot say what she thinks. But in a telephone interviewwith the Guardian last night, her father said that many people had assumed he and his wife had to agonise over their decision."We didn't. It was easy," he said. "We clearly saw the benefits toAshley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."

Hormones
There is a long history of hormones being used to control growth in children. In some cases they are used to counteract a hormonal imbalance or genetic disorder. But there have also been sustained attempts to control body size for cosmetic reasons.In 1956 MA Goldzieher became the first to report using high doses of estrogen to treat exceptionally tall girls. Over ensuing years thousands of tall girls were prescribed estrogen to prevent them tipping over the 6ft mark, protecting their marriage prospects. As the stigma against tallness in women has declined, so has the practice, though it still continues. Boys considered to be shorter than the norm have recently begun tobe treated with a growth hormone, often for cosmetic reasons. US federal restrictions have been loosened, allowing private paediatricians to offer the treatment that can cost up to $40,000a year.
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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 SilverbergArthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania
Thirza Cuthand at Fit of PiqueI'm Funny Too at Did I Miss Something?

Least Restrictive Environment LRE

Everyone loves freebies, so here is one
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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

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.