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Comments for April 17 IACC Meeting

| Ianthe Dempsey
These comments are available as a PDF here. Thank you for the opportunity to submit written comments. The Autistic Self Advocacy Network, in light of the recent 2019 reintroduction of the Autism CARES Act1Autism CARES Act of 2019, H.R. 1058, S. 427, 116th Cong. (2019). and its annual commemoration...

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Find out how YOU can #StopTheShock!

| Ianthe Dempsey
On April 24, 2014, the The Food and Drug Administration (FDA), the government organization in the United States that decides what kinds of medical treatments can be used on people, held a hearing that led them to conclude that there is no way to use the GED without significant...

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White House Fails Autistic Community, Again

| Ianthe Dempsey
The Autistic Self Advocacy Network is disappointed but not surprised by the White House’s continued participation in Autism Speaks’ “Light It Up Blue” campaign. If the Trump administration truly wanted to support autistic people, they would show us through their actions that we are accepted, rather than taking the...

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Disability Day of Mourning 2019

| Noor Pervez
Day of Mourning Vigil Remarks – DC Zoe Gross Peter Berns Victoria M. Rodríguez-Roldán Day of Mourning – Virtual Vigil Virtual Vigil General News Coverage Claremont, CA Syracuse, NY Rochester, NY Christiansburg, VA College Park, MD Collegeville, PA Johnson City, TN Moscow, ID...

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Remarks from Victoria M. Rodríguez-Roldán at Disability Day of Mourning 2019

| Noor Pervez
Human life has a strange nature to it – when we think of those in our community who were taken from us, we acknowledge its tragedy. But often times we fail to internalize it. Anyone who’s been a parent, or for that matter, anyone who’s had conflicts with their...

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Remarks from Peter Berns at Disability Day of Mourning 2019

| Noor Pervez
As the CEO of a disability rights organization, as a parent, and as a human being – I regret that we have to gather today.   This is a difficult, but important, day to be a part of. Thank you to the Autistic Self Advocacy Network for holding this annual...

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Remarks from Zoe Gross at Disability Day of Mourning 2019

| Noor Pervez
A study came out back in December that got some press this week. The headlines were something like “Autistic children are more likely to be abused.” This isn’t new information – if you work in the field of disability, you should know that disabled people are disproportionately likely to...

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Disability Rights Statement On The Deaths At Wanaque Center for Nursing and Rehabilitation

| Ianthe Dempsey
As people with disabilities and loved ones of people with disabilities, as disability rights advocates, and as human beings, we are horrified by the deliberate neglect which led to the deaths of eleven children last fall at the Wanaque Center for Nursing and Rehabilitation, an institution for medically fragile...

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ASAN, 243 Other Orgs Urge FDA to #StopTheShock

| Ianthe Dempsey
This letter is available as a PDF here. March 6th, 2019 Alex M. Azar II Secretary U.S. Department of Health and Human Services Scott GottliebCommissionerFood and Drug Administration John Michael Mulvaney Director Office of Management and Budget Sent via electronic mail Re:  FDA proposed rule banning electrical stimulation devices...

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ASAN Comments on HIPAA Privacy Rule

| Ianthe Dempsey
February 11, 2018 U.S. Department of Health and Human Services Office for Civil Rights Attention: RFI, RIN 0945-AA00Hubert H. Humphrey Building, Room 509F 200 Independence Avenue SWWashington, DC 20201 Re: Department of Health and Human Services, Office for Civil Rights RIN 0945-AA00, Docket HHS-OCR-0945-AA00, “Request for Information on Modifying...

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