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So, there was apparently a big meeting yesterday, between “interested” groups, to assess a course of action related to the death of Ethan Saylor. Based on what we know so far from that meeting, there is just a lot of talk – and very little action.

Let’s keep the fire stoked – join our March for Ethan. Go to that post and tell us what you can and will do to help ensure that no citizen with Down Syndrome will die because Law Enforcement and First Responders were not trained in Use of Force and De-escalation techniques specific to Down Syndrome.

Also, a HUGE shout out and THANK YOU to Chief Scott Silverii over at the “Bright Blue Line” who IMMEDIATELY started walking the talk: he has taken on the enormous task of putting together a Training Cadre at the International Association of Chiefs of Police (IACP) – an organization that, among other things, trains law enforcement personnel in the U.S.

The Response from National Down Syndrome Advocates.

Here’s what our various “advocates” said about the Big Meeting on Tuesday, March 26, 2013:

National Down Syndrome Society (NDSS): In a cryptic press release, the NDSS said that their “….ultimate goal of this collaborative effort will be to create a training program that can be easily accessed and flexible enough that all law enforcement and first responders nationwide can participate.”

(Sounds like political safe-speak, if you ask me). NDSS, tell us exactly what and how you are going to do. The NDSS has already locked DS bloggers in the basement – do you plan on doing the same thing with those of us who March for Ethan?

To the folks at the NDSS – the DS community strongly encourages that you join efforts already started in the DS community…Chief Scott Silverri (who serves on the IACP Research and Advisory Committee) has graciously volunteered to take the lead and has already started putting together a Training Cadre.

As of April 2, 2013: Still no word from the NDSS. Do they need a name-change? I recommend the “Not-Doing-S**t-Society”. [Sorry for the swear word, but NDSS, when are you going to advocate for our children and families?]

National Down Syndrome Congress (NDSC): In its press release, the NDSC called for an independent investigation of what happened: “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”

We’ve emailed David Tolleson, the Executive Director – will he respond?

[Author’s Note. On Friday, 3/29/2013, we received a brief response to our request for assistance and support from NDSC, and hope that they are able to lend their name and resources to support the effort to develop DS Specific Training for Law Enforcement Professionals:

“That’s terrific, Chris! Thanks to you and Chief Silverii for volunteering to help. I’ll share your information with the others before leaving today.

With best wishes,

David”]

Family Resource, Information & Education Network for Down Syndrome (F.R.I.E.N.D.S.) – The group, of which Ethan’s mother is an integral member, published its Press Release, calling for specific steps to effectuate police training.

Down Syndrome Achieves: This national organization has issued a press release stating:

“We stand with other advocacy groups and organizations seeking justice for Robert Ethan Saylor and his family, and support an independent investigation into his death. Moreover, we support efforts to educate law enforcement on specific guidelines when working with people with Down syndrome or other developmental differences”

Department of Justice: Confusing matters even more, the Department of Justice issued this statement through Lou Ruffino, spokesperson for the Department of Justice’s community relations service: “There are no concrete action steps at this time,” Ruffino said. “It’s a little bit early for us. We’re trying to assess the situation and see how much community tension there is.” (Translation: As long as things keep quiet, we’ll keep sitting on our arses.)

International Down Syndrome Coalition (IDSC): So far, the only advocacy group that seems to “get” the issue, and be actively advocating for immediate and specific change. Read their news release here.

They have also added the White House Petition link to their press release page, helping hundreds and thousands more people realize that action is being taken

The Response from the DS Community.

The DS Community is very concerned about this situation.

SHARE THESE POSTS on Facebook, Twitter, Pinterest, your blog…spread the word everywhere you can.

(Email me at dad at littlebirdsdad dot com if you are blogging about Ethan Saylor and we’ll post your link here too)’

Bloom: Parenting Kids with Disabilities: Stigma and Ethan Saylor.

Walkersville Mom: I will continue to talk about Justice for Ethan.

Down Wit Dat: Dream.

Treyton’s Posse: Robert Ethan Saylor’s Death is terrifying the Down Syndrome Community

AllParenting.Com: Wake up Down Syndrome Organizations, We Need You!

Operation Have It All: A Message to all Down Syndrome Organizations

Walk on the Happy Side: Robert Saylor, a death in the Down Syndrome Community.

Our Journey through Life: Rest in Peace, Robert Saylor.

Knight Shift: Police Murder Man with Down Syndrome

Lawyer Offers $1,000 to International Down Syndrome Coalition (IDSC) if the DS Community can get Ethan’s Mom on the Daily Show.

My Happy Endings: It’s Time to Change the World

Jen Dawns Cowgirl Up: Jesus Cried out for his father, Robert Ethan Saylor Cried Out For His Mother — Please Help!

Big Blueberry Eyes: The Death of Robert Saylor.

Bates Motel: The Death of Robert Saylor – was it worth it?

Bright Blue Line: Death by Down Syndrome.

Kimchilatkes: Robert Saylor’s Death is NOT about lack of Down Syndrome Awareness.

Washington Post: Calm, Common Sense, and Compassion Would have Saved Ethan Saylor’s Life (Learn how REGAL theaters should be boycotted for its shameful lies about this incident)

With a Little Moxie “He Deserved to Die: He had the Temerity to Die with Down Syndrome”

She Knows: “Down Syndrome Advocates Call for Justice, Training”

Crystal R. Staley: Robert Ethan Saylor: It’s Not Your Fault.

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