There 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.
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.
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.
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.
Access code: 1308901
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.