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Autism and Special Education in Israel

IACC Meeting January 16, 2019: Express Your Disappointment and Real Needs

Bang-head-hereThere is a full committee IACC meeting on January 16. Many of us watch these meetings come and go with a disconnected apathy because for so many years, nothing has been done at the Federal level to help people with autism. Our children with autism. Many of whom are now adults with autism who have even LESS to assist them than when they were in school. The future is bleak, friends. Unless we demand change, progress. Admissions of an epidemic that will shatter families, collapse social programs and lead to the death of our loved one at the hands of subpar caregivers, by wandering, drowning and crime against them because of their gentle, naive, autistic, trusting ways.  We need guarantees that Supplemental Social Security and SSDI will be there for this growing population. We need a return to group  housing of multiple residents with proper safety and care and training of all staff - like Memory Care housing.  A good portion of our more affected children will never be able to live in community housing or a group home because of their behaviors. They are at RISK of assault by poorly paid caregivers. They are virtually guaranteed expulsion due to behaviors. They face restraint, seclusion, violence, rape. IACC has failed at every step of the way. Speak up. Get pissed. Submit your comments by Friday - see below. Listen via conference case - also below.

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The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be open to the public and will be accessible by webcast and conference call. Close captioning is provided; for other disabilities accommodations see below.

Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. ET on Friday, January 4, 2019 with their request to present oral comments at the meeting, and a written/electronic copy of the oral presentation/statement must be submitted by 5:00 p.m. ET on Tuesday, January 8, 2019.

A limited number of slots for oral comments are available, and in order to ensure that as many different individuals are able to present throughout the year as possible, any given individual only will be permitted to present oral comments once per calendar year (2019). Only one representative of an organization will be allowed to present oral comments in any given meeting; other representatives of the same group may provide written comments. If the oral comment session is full, individuals who could not be accommodated are welcome to provide written comments instead. Comments to be read or presented in the meeting will be assigned a 3-5 minute time slot depending on the number of comments, but a longer version may be submitted in writing for the record. Commenters going beyond their allotted time in the meeting may be asked to conclude immediately in order to allow other comments and presentations to proceed on schedule.

Any interested person may submit written public comments to the IACC prior to the meeting by e-mailing the comments to IACCPublicInquiries@mail.nih.gov or by submitting comments at the link: https://iacc.hhs.gov/meetings/public-comments/submit/index.jsp by 5:00 p.m. ET on Tuesday, January 8, 2019. The comments should include the name, address, telephone number, and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. ET on Tuesday, January 8, 2019, will be presented to the Committee prior to the meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. ET, January 8, 2019 deadline through January 16, 2019, will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record. Attachments of copyrighted publications are not permitted, but web links or citations for any copyrighted works cited may be provided.

Individuals may also submit public comments to the IACC via a Live Feedback Form accessible from the webcast page on the day of the meeting from 9:00 AM ET to 11:00 AM ET. No pre-registration required. The link will be accessible on the NIH Videocast website and instructions are available on the IACC website: https://iacc.hhs.gov/meetings/iacc-meetings/2019/full-committee-meeting/january16/live-feedback.shtml. This format is best suited for brief questions and comments for the committee. Submissions will be provided to the IACC and will become a part of the public record.


Core Values:
In the 2016-2017 IACC Strategic Plan, the IACC listed the “Spirit of Collaboration” as one of its core values, stating that, “We will treat others with respect, listen with open minds to the diverse views of people on the autism spectrum and their families, thoughtfully consider community input, and foster discussions where participants can comfortably where participants can comfortably offer opposing opinions.” In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.

See all details here.

Conference Call:
Dial: 888-829-8668
Access code: 1308901

Webcast: https://videocast.nih.gov/summary.asp?live=29099&bhcp=1
Members of the public who participate using the conference call phone number will be in listen-only mode. If you experience technical problems with the webcast or conference call, please call 240-668-0302 or e-mail IACCPublicInquiries@mail.nih.gov.

Comments

Benedetta

Bang head here; LOL thanks for a place to do that.

I wrote and suggested that they address the problem of when little kids stop toe walking and start slapping those flat feet on the floor.
It is really rough on hypotonic muscle flat feet to stand and walk on the concrete floors for hours at time.

I thought those on the IACC committee might manage to focus just on that and tell us what would be the best foot insert, to put in steel toed shoes for the brief time that factories needs temporary workers to fill a large order.

Yes, I am blessed that mine can handle a two or three week temp job, but those feet are a real problem.

Jeannette Bishop

https://vaxxter.com/pharma-drug-side-effects-add-half-a-trillion-dollars-to-national-healthcare/

The above study probably doesn't even include vaccinations in the calculation which would probably add costs on a factor of 10 higher. To my view, no matter a somewhat divergent intent of a few members, the IACC committee functioned with it's main mission to protect the above profits.

I fear that even some of those in whom we sometimes hope who tell themselves something should be done about the autism epidemic don't want to rock that pharma profit boat either, especially as we're in a much, much greater precarious financial situation the corporate media has let on for some time.

But if people became healthier, i.e. less drugs in demand, then the money spent there would still go to other industries requiring judicial switching of investment funds, yes (and many pharma toadies could move on to new opportunities and benefit GREATLY from being able to stop being toadies), but there would also be more true wealth creation by a healthier and capably productive population.

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