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Wednesday, August 22, 2012

Controversial stem cell treatment put to test in groundbreaking autism study

Diseases and conditions where stem cell treatm...
Diseases and conditions where stem cell treatment is promising or emerging. (See Wikipedia:Stem cell#Treatments). Bone marrow transplantation is, as of 2009, the only established use of stem cells. Model: Mikael Häggström. To discuss image, please see Template talk:Häggström diagrams (Photo credit: Wikipedia)
Stem cell diagram illustrates a human fetus st...
Stem cell diagram illustrates a human fetus stem cell and possible uses on the circulatory, nervous, and immune systems. (Photo credit: Wikipedia)

In the first such officially-sanctioned study of its kind, investigators are planning to test whether stem cells can effectively treat autism. And they've drawn some quick criticism of their work from researchers who are skeptical about the small number of young patients which will be recruited for the FDA-approved trial.
In the study, investigators at the Sutter Institute for Medical Research in Sacramento, CA, will enroll 30 children between the ages of two and 7. Half will be treated with injections of their own cord blood stem cells drawn from a single stem cell bank over 6 months, while the other half is given a placebo. Then they will switch therapies for the next 6 months.
Diagram of stem cell division and differentiat...
Diagram of stem cell division and differentiation. A - stem cell; B - progenitor cell; C - differentiated cell; 1 - symmetric stem cell division; 2 - asymmetric stem cell division; 3 - progenitor division; 4 - terminal differentiation (Photo credit: Wikipedia)
"This is the start of a new age of research in stem cell therapies for chronic diseases such as autism, ..., said Michael Chez, the director of pediatric neurology with the Sutter Neuroscience Institute and principal study investigator. "I will focus on a select portion of children diagnosed with autism who have no obvious cause for the condition, such as known genetic syndromes or brain injury."

August 21, 2012 | By John Carroll
Read more: Controversial stem cell treatment put to test in groundbreaking autism study - FierceBiotech http://www.fiercebiotech.com/story/controversial-stem-cell-treatment-put-test-groundbreaking-autism-study/2012-08-21#ixzz24KW3pBqt
Subscribe: http://www.fiercebiotech.com/signup?sourceform=Viral-Tynt-FierceBiotech-FierceBiotech

- here's the press release
- and the article from Bloomberg
Special Report: Stem cell research advances in fits and starts


Read more: Controversial stem cell treatment put to test in groundbreaking autism study - FierceBiotech http://www.fiercebiotech.com/story/controversial-stem-cell-treatment-put-test-groundbreaking-autism-study/2012-08-21#ixzz24KWP0IDS
Subscribe: http://www.fiercebiotech.com/signup?sourceform=Viral-Tynt-FierceBiotech-FierceBiotech

FierceBiotech
Controversial stem cell treatment put to test in groundbreaking autism study - FierceBiotech

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Related articles:
autism

Stem cell research may have application to treat autism

SACRAMENTO, Calif. — Rydr Rudgers suffers from cerebral palsy. He couldn’t move or talk before a cord blood stem cell…

 
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Monday, August 13, 2012

Autistic Grief Is Not Like Neurotypical Grief

Autistic Meltdown Model

 


I discovered ASD via grief.It was on my 47th birthday that I actually had the misfortune to witness the death of my father via stroke. Had I entered the room just five minutes later, I would have missed hearing his last words or seeing the terror in his eyes as h

Karla Fisherasdculture.wikispaces.com - The Thinking Person's Guide to Autism: Autistic Grief Is Not Like Neurotypical Grief -

"Life on the Autism Spectrum can be ENJOYable."

5 Steps for Parents to Climb the Mountain of Transition to Middle School

Back to School -


5 Steps for Parents to Climb the Mountain of Transition to Middle School

"Life on the Autism Spectrum can be ENJOYable."

Thursday, August 9, 2012

How to Have a Good Relationship with Your Child's Teacher

Advice from 'Exceptional Children Assistance' - via Learning Disabilities Online, the world's leading websitr on learning disabilities, lesrning disorders and diffetences
  Parents and Teachers (of Students with learning disabilities) will find...


How to Have a Good Relationship with Your Child's Teacher | LD Topics | LD OnLine

"Life on the Autism Spectrum can be ENJOYable."

What Are Special Needs? Children's Disabilities and the Special Needs of Families

What Are Special Needs? Children's Disabilities and the Special Needs of Families

"Life on the Autism Spectrum can be ENJOYable."

Wednesday, August 8, 2012

Back to School Resources

“Don’t you love New York in the fall? It makes me wanna buy school supplies. I would send you a bouquet of newly sharpened pencils if I knew your name and address.” Quote from the movie You've Got Mail.

Here are some great online resources for information and tips for Back to School

And here are links to two of our popular previous blog posts about getting ready for Back to School: Back To School: Help I need a placement! and other concerns

Back to School: Get Ready with Organized School Records
Special Education and Disability Rights Blog: Back to School Resources

"Life on the Autism Spectrum can be ENJOYable."

School Uses Olympics to Teach Autistic Students in Manhattan

School Uses Olympics to Teach Autistic Students in Manhattan - NYTimes.com

"Life on the Autism Spectrum can be ENJOYable."

The Amazing Spider-Man: The Animal Farm of the Autism Epidemic?

The Amazing Spider-Man: The Animal Farm of the Autism Epidemic? - AGE OF AUTISM

"Life on the Autism Spectrum can be ENJOYable."

Tuesday, August 7, 2012

iPhone/iPad Apps for AAC

for Back to School, Back to work, back to training, and...
enjoying Life....

iPhone/iPad Apps for AAC : Spectronics - Inclusive Learning Technologies

"Life on the Autism Spectrum can be ENJOYable."

Monday, August 6, 2012

'Special Education Rights and Responsibilities Manual'

Special Education and Disability Rights Blog: Resource of the Week: Special Education Rights an...: Disability Rights California (the Protection and Advocacy, Inc - or PAI - of California) produces many great publications that are user frie...
   Available in Spanish.
   Download PDF version in iBooks.
"Life on the Autism Spectrum can be ENJOYable."

Aspergers and Working

Asperger Syndrome Employment Workbook - An Employment Workbook for Adults with Asperger Syndrome'

By Roger N. Meyer, a forward by Dr. Tony Attwood, Published by Jessica Kingsley Publishings

"Life on the Autism Spectrum can be ENJOYable."

Alexa Posny, Education and Rehabilitative Services | ED.gov Blog

Leaders@ED: Alexa Posny, Assistant Secretary for Special Education and Rehabilitative Services | ED.gov Blog

Dr. Posny addresses Special Education and Rehabilitative Services issues during the annual OSEP Leadership Conference.

Office of Special Education Programs(OSEP) - U.S. Department of Education
The 2012 OSEP Leadership Conference will support
better outcomes for infants, toddlers, children and
youth with disabilities and their families by providing
opportunities for key leaders and partners to interact with
Department staff and OSEP-funded technical assistance
providers.
Time: July 30, 2012 at 8am to August 1, 2012 at 5pm
City/Town: Washington, DC
Event Type: conference
The 2012 OSEP Leadership Conference (previously
named the OSEP Mega Leadership Conference)




2012 OSEP Project Directors' Conference . The 2012 OSEP Project Directors' Conference will be held July 23–25, 2012, at the Marriott Wardman Park Hotel in ...


For more info. on TA&D Network, refer to Michele Rovins .


"Life on the Autism Spectrum can be ENJOYable."


Related info.:


Educating & Learning &Teaching / The sequestration will put at risk all that we ...

twitter:@EnjoyHi5Autism at KBJCosse' - spectrum - TweetMeme 
U.S. Department of Education Secretary Arne Duncan testimony about Sequestration before the U.S. Senate Committee... http://t.co/uppNTvBq




How Sequestration could affect your child's Education -- 'Testimony of Secretary Duncan before the Senate Labor, Health and Human Services and Education Appropriations Subcommittee | U.S. Department of Education '

'Enjoying The Hi-5s of Autism - A Family Experience' at 'Enjoying The Hi-5's of Autism - A Family Experience' - 
*"*Sequestration sends a signal that the United States is backtracking on its commitment to reform and its long-standing promise to promote equity through Title I and the Individuals with Disabilities Education Act, or IDEA." *Fiscal year 2013 is a little more than two months away and sequestration kicks in three months after that on January 2nd -- so it's critically important that we – and the American people – fully understand the consequences of sequestration and take steps to avoid it now.* *The sequestration will put at risk all that we've accomplished in education and weaken ... more »


EnjoyHi5Autism: U.S. Department of Education Secretary Arne Duncan testimony about Sequestration before the U.S. Senate Committee... http://t.co/uppNTvBq



EnjoyHi5Autism: U.S. Department of Education - federal Sequestrations will possibly affect the US Dept. of Education http://t.co/qjMhcgiQ


Sunday, August 5, 2012

...Are you Really Done at 21?!




Adults - Ongoing Services Throughout The Lifespan: Are You Really Done at 21


Suzanne Grimshaw MSW, LCSW
 Your children were most likely diagnosed when they were young. Now, they are becoming an adult or soon will reach that age where they might need ongoing services throughout their lifespan. While some adults with autism will likely live in homes of their own with only a little support, many more will require a range of ongoing and even intensive services throughout their lifespan. The sad reality at this time is that there is a tremendous lack of adult residential supports and pro... 
Suzette Bartlett MSW, LCSW




 Suzette Bartlett, MSW, LCSW and Suzanne Grimshaw, MSW, LCSW present, "Adults - Ongoing Services Throughout The Lifespan: Are You Really Done at 21", Thursday evening, September 6 at 7:00pm at the USAAA 2012 World Conference.  
   more »  For adults with Autism and Asperger's 
transitioning into adulthood can be very difficult.


A Residential/Day Program Model will be presented.





CEU ACCREDITATIONQUICK FACTSThe US Autism & Asperger Association 5th Annual World Conference, held October 1-3, 2010, became the most viewed Autism/Asperger conference in the world. This was the first ever Autism and Asperger conference streamed lived in its entirety.

















  AUTISM IS A DISABILITY...
and not just because it gets you a 'Disabilty' Parking Spot! 

Friday, August 3, 2012

ignored


AUTISM
the ignored
EPIDEMIC
is pinned on
Pinterest
Where's the t-shirt, bumper sticker, cap, button, etc...?



Happy Pinning with 'EnjoyHi5Autism' on Pinterest!
Boards to pin on include:  I am the 'I' in IEP.; 'Parents do understand...'; 'Apps for kids with Special Needs'; 'Therapies and Treatments'; 'Educating & Learning & Teaching';  'picky-eaters'; 'Sensory relief'; 'AUTISTImotions'; and 'AUTsumers!'.





AUTISM IS A DISABILITY... and not just because it gets you a 'Disabilty' Parking Spot! http://t.co/rGDg8Eic



Thursday, August 2, 2012

Voting Rights & People with disabilities

     Here are a few views from several countries on Voting Rights & People with disabilities:
Autism & Oughtisms
Today I came across a story from Minnesota, where voting rights for the mentally disabled has become a hot topic. Currently the law there presupposes their right to vote, unless a judge determines otherwise. There is a movement – and a legal challenge – that would like to see the presumption go against those existing rights; specifically that those under guardianship should not be allowed to vote unless a judge rules otherwise.
Besides the questions this raises about discrimination and any legitimate reasons for excluding a group of people from voting, it made me wonder what the situation was here in New Zealand. Do we also take away people’s rights to vote if a judge says so, solely on the grounds of intellectual or mental disability? The answer appears to be “no:” In New Zealand, people excluded from voting (besides those who are under 18 or do not qualify as citizens in the relevant sense), are only those who are either currently in prison, or “who have been in a psychiatric hospital for more than three years after being charged with a criminal offence.” This website further explains the relevance and function of this exclusion:
Voting discrimination, and do the disabled get a right to vote in NZ? | Autism & Oughtisms#subscribe-blog

 

  Next dispute: Should all the disabled have voting rights ...

The summer of Minnesota's discontent over voting rules has spun off a related fight: whether disabled people who cannot handle their own affairs should ...



www.disabilityscoop.com
With the presidential campaign season heading into high gear, concerns are being raised about whether all people with disabilities should have the right to vote.


 Voting-rights debate sets off alarms among disabled people and their advocates

"I want to vote," said Dave McMahan, a 61-year-old military veteran with mental illness who lives in a Minneapolis group home and has his affairs controlled by a legal guardian. "I've been through sweat and blood to vote. I don't want my rights taken away, because I fought for my rights here in the United States and expect to keep them that way."
At stake are the voting rights of an estimated 22,000 people whose affairs are controlled in varying degrees under guardianships. Under current law, they retain the right to vote unless a judge takes it away. That presumption, and its apparent conflict with the state Constitution, has been questioned in the lawsuit and in debate at the Legislature earlier this year.
Lawyer Robert McLeod, a guardianship expert who helped write the current law, argued against Kiffmeyer's bill and against the court petition.
"We're talking about taking a fundamental liberty and stripping it from 22,000 people," he said.
While abuse may occur, he said, that does not justify penalizing the disabled people who may be victimized.
Brian Erickson, a 40-year-old Army veteran, is another of Grisham's guardianship clients who has a mental illness. ...,  who lives his life by the orderly schedule worked out by his guardians and Veterans Affairs.
He didn't want to give up his right to vote. "As a vulnerable adult, the only way we can speak is by voting. I don't want them making laws that take that right taken away from me," he said.

"disAbilityVOICE - Disability Rights Advocate" ‎(in the UK) Getting Voting Rights - http://www.disabilitynow.org.uk/living/features/getting-voting-rights/

People have fought and died for it. Governments constantly tell us it’s a right ...
we should exercise. So why is voting so difficult for so many disabled people. Paul Carter investigates...
   Polls Apart campaign - http://www.timetogetequal.org.uk/vote
Polls Apart: Opening elections to disabled people
... to improve accessibility For all disabled people to vote independently and in secret, real change is needed – a wider range of ...
Remember, Autism is considered a developmental Disability.

Happy Pinning with 'EnjoyHi5Autism' on Pinterest!
Boards to pin on include:  I am the 'I' in IEP.; 'Parents do understand...'; 'Apps for kids with Special Needs'; 'Therapies and Treatments'; 'Educating & Learning & Teaching';  'picky-eaters'; 'Sensory relief'; 'AUTISTImotions'; and 'AUTsumers!'.





AUTISM IS A DISABILITY... and not just because it gets you a 'Disabilty' Parking Spot! http://t.co/rGDg8Eic



Eight Fun Oral Sensory Activities to Improve Your Child’s Regulation

Eight Fun Oral Sensory Activities to Improve Your Child’s Regulation

"Life on the Autism Spectrum can be ENJOYable."

Transition - Least Restrictive Environment beyond the Classroom



OSEP issues favorable transition LRE letter

Q & A with Office of Special Education Programs Director Melody Musgrove
Re:  Least Restrictive Environment applying to Transition and the Workplace

Question: Is the individualized education program (IEP) Team required to include work placement in a transition-age student's IEP?


Question:  Is the IEP Team required to provide parents with "notice of placement" when determining a student;s work placement?

Question:  Can segregated work be considered an appropriate outcome, particularly with appropriate assessment in a LRE before such a placement occurs?

Question:  Is the LEA required to provide suppplemental aids and services to allow the student to participate in the least restrictive work placement possible?

How must LRE for work placements be monitored?

Are State required to consider a student's work placement when they report the number of students participating in regular education?

This Q & A was prompted in response to a letter 'Disability Rights Wisconsin' sent to OSEP Director Musgrove on December 22, 2011.  They had a conversation about it on December 2, 2011, in which 'Disability Rights Wisconsin' requested an opinion from OSEP on the applicability of the least restrictive environment (LRE) requirements under Part B of the Individuals with Disabilities Education Act (IDEA) to transition work placement.  Director Musgrove addressed her response letter to Jeffrey Spitzer-Resnick, Beth Swedeen, and Lisa Pugh.  The letterhead states:  United States Department of Education Office of Special Education and Rehabilitative Services, along with the official seal of the United States of America Department of Education.

OSEP Policy Letter dated June 22, 2012 (MS Word)

Disability Rights Wisconsin. 131 W. Wilson St. Suite 700 ... This is in response to your letter to me, dated December ... /s/ Melody Musgrove. Melody Musgrove, Ed.D. Director
www2.ed.gov/policy/speced/guid/idea/memosdcltrs/062212...
OSEP Policy Letter dated June 22, 2012 (MS Word)
Jeffrey Spitzer-Resnick, Beth Swedeen, Lisa Pugh. Disability Rights Wisconsin. 131 W. Wilson St. Suite 700. Madison, Wisconsin 53703. Dear Mr. Spitzer-Resnick, Ms ...
www2.ed.gov/policy/speced/guid/idea/memosdcltrs/062212...

Disability Rights Wisconsin

DRW and the Board for People with Developmental Disabilities (BPDD) wrote a letter to the federal Office of Special Education Programs (OSEP) seeking better guidance about the least restrictive environment (LRE) impact on community based transition services. OSEP responded with a favorable letter on June 22, 2012. Click here for the letter. [ http://www.disabilityrightswi.org/wp-content/uploads/2012/06/OSEP-transition-letter.0622121.pdf ]

DRW and BPDD believe:
The letter provides more guidance to states on how to apply Least Restrictive Environment (LRE) requirements under Part B of IDEA to transition work placements. There has been confusion among states, school districts, IEP teams (including parents and youth) about how transition services can facilitate integrated employment. USDOE clearly states that transitions services are a coordinated set of activities for a child with a disability that are designed as part of a results-oriented process. This process is meant to help the child move to post-school activities, which include integrated employment (including supported employment).
Transition services (including work placements) should be based on a child’s strengths and interests.
USDOE clearly state that a work placement, if it is included as part of a youth’s transition services, must be included in the child’s IEP and then is subject to the provisions of a Free and Appropriate Public Education (FAPE) and Least Restrictive Environment (LRE).
USDOE clearly states that when work placements are part of transition services, they must meet the LRE test, which includes the IEPs team’s determination that the youth is only receiving services in a segregated setting (segregated work placement) if the use of supplementary aids and services could not support the youth in a less restrictive setting. We believe those supplementary aids and services should include things like job coaches and assistive technology.
USDOE clearly states that, just as the LRE test applies in the classroom, supplementary aids and services based on peer reviewed research – must be provided to the youth to help him or her make progress in the work placement setting. An IEP team must consider those aids and services the can help the student participate with non-disabled peers.
USDOE clearly states that SEAs (DPI) has the responsibility to monitor whether LRE is being met for youth in work placements. Therefore a district would be expected to show a variety of work placements based on the strengths and interests of the youth in their district.
Posted in DRW Announcements, Public Policy on Thursday, June 28th, 2012

DRW Managing Attorney Jeff Spitzer-Resnick is quoted in an Education Week blog post on this topic: On Special Education Click here to read the blog post. [Spitzer-Resnick said these conversations must happen more often, because often for students with disabilities, especially severe disabilities, the job they get after high school is the job they have for the rest of their lives.
Otherwise, while a lot has been done to improve the education of students with disabilities, serve them more inclusively at school, and demand more of them academically, that effort may be going to waste.
"It is clearly the IDEA's goal that children get an education so they can lead a productive adult life," he said. "If we are doing a good job in the earlier years... and we end like this, what a waste of resources."

'Least-Restrictive Environment' Must Be Considered at Workplace, Too

http://blogs.edweek.org/edweek/speced/2012/07/least-restrictive_environment_.html?cmp=ENL-EU-NEWS2 ]

 Disability Scoop, 'The Premier Source on Developmental Disabilities News', reported:

Feds: Least Restrictive Environment Applies To Transition Too

By  
By law, students with disabilities are supposed to be included in general education to the greatest extent possible. Now, federal officials say the same tenet of inclusion should apply to transition as well.
Informal guidance issued recently from the U.S. Department of Education indicates that the requirement in the Individuals with Disabilities Education Act, or IDEA, that students be placed in the “least restrictive environment” extends beyond the confines of the classroom.
Specifically, the concept should apply to work placements if such experiences are part of a student’s individualized education program, or IEP, officials at the Education Department said.
“Placement decisions, including those related to transition services (including work placements), must be based on these (least restrictive environment) principles and made by the IEP team,” wrote Melody Musgrove, director of the Office of Special Education Programs at the Department of Education. “The IDEA does not prohibit segregated employment, but the (least restrictive environment) provisions would apply equally to the employment portion of the student’s program and placement.”

News of Musgrove’s letter was first reported by Education Week.
Read the entire article:
Feds: Least Restrictive Environment Applies To Transition Too - Disability Scoop

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'Enjoyable School Year'
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"disAbilityVOICE - Disability Rights Advocate"


"Life on the Autism Spectrum can be Enjoyable."
Happy Pinning with 'EnjoyHi5Autism' on Pinterest!
Boards to pin on include:  I am the 'I' in IEP.; 'Parents do understand...'; 'Apps for kids with Special Needs'; 'Therapies and Treatments'; 'Educating & Learning & Teaching';  'picky-eaters'; 'Sensory relief'; 'AUTISTImotions'; and 'AUTsumers!'.

AUTISM IS A DISABILITY... and not just because it gets you a 'Disabilty' Parking Spot! http://t.co/rGDg8Eic






Related information:


Disability Rights Wisconsin Externship | University of ...

Disability Rights Wisconsin (DRW) is the state's protection and advocacy agency for people with all types of serious disabilities. It provides a wide variety of ...
law.wisc.edu/academics/clinics/drw_externship.html

Disability Rights Wisconsin

Disability Rights Wisconsin has learned that the Wisconsin Department of Health Services (DHS) received a July 20 letter from the Center for Medicaid and Medicaid ...

Disability Rights Wisconsin: Disability.gov

A statewide resource for individuals, families, service professionals and others concerned with disability issues. Works to ensure the rights of all state citizens ...

The Affordable Care Act and People with Disabilities

Read this informational paper from the Survival Coalition of Wisconsin Disability Organizations to understand what the Affordable Care Act means for people with disabilities, how it can promote employment of people with disabilities and next steps for implementation in the state. Click here to read the informational paper.