Lyn Redwood to Mike Strautmanis on IACC Webcast: We Need to More, Faster
You can now watch the video of the webcast on the IACC website www.iacc.hhs.gov. Lyn Redwood's comments start at (Media player here)40:25 and continue to 47:34, including the administration's response.
She plans to follow-up with Mike Strautmanis in person next Monday the 25th and will continue to push for the administration to follow through on their campaign promise to appoint a Federal ASD coordination (attached) to oversee all federal ASD efforts, to eliminate bureaucratic obstacles that may be delaying implementation of important ASD measures (like wandering and elopement) and to insure that all federal dollars being spent is done in a manner that prioritizes results. She will also push for the establishment of a task force within the White House on autism, just like the one they have now for obesity and for the creation of an Office of National Autism Policy (ONAP) under the White House Domestic Policy Council just like they have for AIDS.
"We need to do more and we need to do it faster".
Dear Lyn,
From our entire family we'd like to express appreciation for your efforts. You are a shining light on the IACC and the voice of reason on most occassions. We need more individuals like you, that are solution oriented and listen to the entire autism community.
As you too are experiencing, our son is now a young man living with autism, and we've waited for a response for much to long.
We only hope that folks will now listen and no more precious time is wasted. Lives are depending on it.
With much appreciation for your tireless efforts for many, many years,
Andrew, Carolyn, Nicholas, and Alex
Posted by: Carolyn Gammicchia | April 23, 2011 at 01:11 PM
Okay I really need to thank Lyn again:
Lyn and Mark Blaxill are the only two that needed and deserved in thanks. Thank You for sitting through this and not spitting paper wads on some people's fore heads. Thankyou for having more self control than I not to throw a paper wad at Dawson of Autism Speaks for opeing up her mouth and saying absolutely nothing of any importance.
Thanks for having more self control than I and not throwing a pencil at the representive of the CDC who wisely was sitting beside silly little Singer!
Only the few minutes of truth, and common sense was spoken in the whole meeting by two people: Lyn and Mark Blaxill.
Lyn: sorry you were patronized,-- your passionate - I can't recall the other two words that Michael used to describe you because I went too emotional and forgot 'em. How can he have a son at home and sit there with no more passion than he exhibited?
Mark Blaxill: Thank You for getting said what has to, needs to be said! After you finished talking (only time I unclenched my fist and did not feel like crying) they put the camera on Tom Insel, and behind him going out of the door was someone in black with POLICE written on their back. Was that presents for you, and those that agreed with you-- to keep the meeting in order and in line?
I listend for three hours and all I wanted to do was either cry, or kill something.
First of all how many ways can you suck up with the words:
Thank you
thankful
grateful
congradulate
appreciate
Praising were no praises are deserved. I don't mean just a thanks for hearing me or letting me be here -and then getting on with important matters - I mean the only reason some one is speaking is to say lengthy thanks with nothing else to say.
"A breath of freah air of which we are thankfully that the President has allowed the the IACC to operate and we are so grateful that IACC exist,and we congraduate all the money that has been given so we can waste it! So very grateful that we have all this money and we sure hope we can continue to waste this money!"
If those words were elimnated from this meeting it would have been shorter and to the point.
Jobs so very helpful.
Job Tips website;
They have made 150 videos for our kids to watch in order to learn the correct and the wrong way to answer questions in a job interview. Out kids can learn this by watching videos. My son can be taught this, will thank you Lord! correct response will help?
I have a headache today - happens when frustration is at its zenith - and God - OH God how am I suppose to get my son down here on JOB TIPS WEBSITE and get him all ready for a job, and then go through all of it to teach him how to keep a job. "OH GOD" (I am not taking his name in vain I am really pleading to him to help me on this)
32 percent federal funds or funding goes to the research for causes. How much or millions is that 32 percent. Give me just a dollar and I will tell you the cause!
And my favorite "The Affortable Care Act" on the 00:19:04 place. In getting health insurance autism cannot be a pre existing condition in getting health insurance - well---- soooo--- does that include all the stuff that goes along with autism: attention deficiet, epilepsy, tourettes, aniexty issues? AND our autism kids can stay on the plan untill it they are 26 years old - the same as all the other kids in this country! WOW!
Someone tell me what Michael meant by Screened autism for adults or children with out any cost sharing for new health insurance??? Is this something that will help my son and my family?
Social Security; Now that was a real help. Every state has its own what ever it accepts to give social security for. My son PDD-NOS does not quailfiy. I know this only because - I went through the process - three times in front of the judge - the last meeting they had hired a psych down in Florida or maybe it was Georgia (we are in Kentucky) and bascially he is PDD-NOS was caused by medication but he can support himself.
I have wasted time here today, I should be on that Job site website and getting my son one of those engineer jobs.
I will take a couple of asprins and get right to it.
I think I may need an anti-depressant too.
Posted by: Benedetta | April 20, 2011 at 05:57 PM
I also watched part of the opening remarks and noted that the administration is considering implementing epidemiology on the issue of wandering. Setting aside most of my uncertain surmises about what the brief mention of epidemiology to determine who is at risk for wandering might mean, I would hope the White House would soon see the need to act more directly and provide families who feel they need additional aid on this issue with the means.
Posted by: JenB | April 20, 2011 at 03:02 PM
Thank you Lyn for being to give our kids and our community a voice.
Posted by: JenB | April 20, 2011 at 02:43 PM
Thanks Lin for doing all this.
I am still waiting for that engineer job that Tom Insel suggested for my son though.
Oh this year, I am billing the NIH for my son's seizure medicine and the doctor's office visits -since we have so far no health insurance and it is beginning to look like we are not going to get any.
Yes, I have put in for health insurance for him and me together since he is not 26 yet, but it has been a month now and I have not heard a word from Anthem health insurance. The last time I heard from them they were reviewing three years worth of doctor records from us.
A 25 year old should be a good gamble all healthy you know at that age.
Posted by: Benedetta | April 20, 2011 at 12:49 PM
Thanks Lin for all the great work you do.
I would like to ask what measures the White House has taken to fulfill their campaign promise to create greater "transparency" for government (CDC, HHS, IOM, etc) regulatory bureaucracies?
Posted by: Bob Moffitt | April 20, 2011 at 09:02 AM