“We can throw stones, complain about them, stumble on them, climb over them, or build with them”
~William Arthur Ward
If you've been reading this blog for long, then you already know that one of the autism-related issues that I am most passionate about is the incredible lack of services and support for families dealing with the diagnosis. In fact it is so bad that if I hadn't experienced it personally or witnessed other families struggling desperately, I probably wouldn't believe it.
Insurance companies see the word autism and routinely respond with the knee-jerk "Denied." Children are unable to access the intervention they need. The Department of Education allows various states and school districts to blatantly disregard the federal mandate for a free and appropriate education under The Individuals with Disabilities Education Act. Adults age out of the system at 22 and then have little or no support.
It's a mess.
Somebody somewhere has got to do something.
The fantastic news is that Autism Speaks announced today that it is once again accepting applications for grants that "promote services that will enhance the lives of those affected by autism spectrum disorders."
I encourage anyone and everyone who reads this blog to make sure that providers and educators in your area are aware of this opportunity. For details please see below or simply visit the Autism Speaks web site.
******
Request for Applications: Family Services Community Grants
February 7, 2008 - Autism Speaks invites grant applications that promote services that will enhance the lives of those affected by autism spectrum disorders. Recognizing that there are multiple needs in this expansive and varied community, the focus of these grants will be on proposals that serve to build the field of services for individuals with autism and expand the capacity to effectively serve this growing community. Autism Speaks will accept family services community grant proposals that address one of the following areas of need :
Education
Building the field and scope of educators and trainers, by providing continuing education and training to those working with individuals with autism spectrum disorders
Providing funding for consultation to improveeducation for individuals with autism
Providing funding to increase the capacity of service providers
Sponsoring conferences
Training professionals to interact more effectively with individuals with autism spectrum disorders
Recreation/Community Activities
Funding to organizations that provide respite services.
Social skills training that provides peer modeling and inclusion with typically developing peers
Recreation and athletic programs for individuals with autism spectrum disorders
Equipment/Supportive Technology
Computer programs for schools, centers or agencies
OT and PT equipment
Augmentative communication devices (for schools or agencies, not individuals)
Young Adult/Adults Services
Pre-vocational and vocational training
Transition planning
Residential services
Recreation programs for adults
Life/community integration skills
Autism Speaks Family Services Community Grants will partner with other organizations to provide additional funding for projects that match our objectives.
Autism Speaks will not award grants to individuals or fund an individual or family for participation in personal programs. We encourage individuals to contact local providers and organizations to submit proposals that will meet our stated goals.
Autism Speaks Family Service Community Grants do not fund scientific research projects. For information about science grants funded by Autism Speaks please click on the following link: http://www.autismspeaks.org/science/research/grants/index.php
Awards
The average grant award will be in the $10,000 - $20,000 range. Multi-year grants will not be awarded.
Application Process
Organizations interested in submitting an application must address one of the 4 areas of need. Successful applicants will apply grant funding to support new programs or the expansion of existing projects.
All applications must be submitted on line. Click here for the online application process.
View the Family Services Community Grants RFA (PDF).
On December 20, 2007, Autism Speaks announced more than $565,000 in Family Services Community Grants. Read a press release here and read summaries of the funded grants here.
Friday, February 8, 2008
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9 comments:
Yes you are so right, so much more should and could be done.
thank you, once again, judith!! i am excited to let our school board know about this!
Liz
It's the understatement of the century isn't it... Individuals with autism need help today.
Thanks to Liz and Mother of Shrek (loved the Carrie Weaver reference on your blog by the way...) for taking time to read and to care. :)
02/08/2008
WHILE MINSHEW SHRIEKS, AUTISM SQUEAKS
By J.B. Handley
Nancy Minshew, M.D. sits on the Scientific Advisory Board of, you guessed it, Autism Speaks.
Autism Speaks drives me nuts. On the one hand, they often represent themselves as speaking for our community. On the other hand, no one at Autism Speaks ever seems to speak up for anything that might help our kids today.
Let’s take a pause and look back at Autism Speaks’ moment of shining glory: the passage of the Combating Autism Act (which actually took Don and Deirdre Imus to push through). Bob Wright went down to Washington and addressed the Senate of the United Sates and here, from an Autism Speaks press release, is what he said:
“The public health crisis posed by autism requires an extraordinary response. With every new child diagnosed with autism costing an estimated $3 million over his or her lifetime, we cannot afford to rely on standard, ‘business as usual' practices,” stated Wright in his testimony. “The autism crisis demands a focused, coordinated, and accountable response by our public health agencies, similar to the federal response to the AIDS crisis in the 1990s, with line-item appropriations for autism intervention, surveillance and research tied to a strategic plan.”
A crisis? Similar to the response for AIDS? Wasn’t/Isn’t AIDS an epidemic?
I think most members of Congress would be shocked to learn that Autism Speaks own “experts” actually can’t agree on the most fundamental of issues: whether or not we have a growing prevalence of autism amongst our children. As we all read in the paper this week and last, Dr. Nancy Minshew, a government funded-researcher, someone who spearheads one of the NIH’s nine Centers for Excellence created by Congress, an “expert” on autism as she would tell you, and a member of Bob Wright’s own Scientific Advisory Board, is certain that there is no epidemic whatsoever. In her world, two simple things have happened: we now call schizophrenic kids autistic, and we now diagnose verbal children, too. End of story.
Let’s get back to Bob Wright and Autism Speaks for a moment. If Bob Wright had invited Dr. Nancy Minshew, a member of his own organization, to join him in meeting members of Congress, there’d be no Combating Autism Act because Bob Wright was in D.C. telling Congress we have a GROWING problem, an issue of increased prevalence, an EPIDEMIC that we all need to deal with. And you know what? It resonated with Congress, because it’s what they were hearing in their own districts and states from their own constituencies.
I took a look at Autism Speaks website and I couldn’t find a statement anywhere that dealt with the issue of rising prevalence. Nuetral. Like Switzerland. How can that be? How can you be the largest, most well-funded autism organization in the world and not know if we have a growing problem or not? If you think we do, say so. And, publicly disagree with Dr. Minshew. If you think we don’t, say so. Bob Wright sure as hell shared his point of view in D.C.
And, if you actually aren’t sure if we have a growing problem or not, let me provide some advice: stop everything else you are spending research dollars on and figure it out. Don’t wait for the CDC to publish their backward-looking study 5 years from now to tell you nothing. If you don’t know if we have a growing problem or not, how can you reasonably know where to look for cause?
This is the fundamental issue in the autism debate right now: growing problem, it’s the environment; no increase, genetics. Geneticists like Dr. Minshew need there to be no real rise to keep the genetic funding rolling in. Parents like me, living amongst these kids, can’t believe what some of these “experts” are saying.
So, Autism Speaks, I plead with you: Speak up. You put out a policy statement on Mercury and Autism, do the same for the issue of rising prevalence. Put Dr. Minshew or me in our proper place. Or, admit to the world that you don’t know and that you aren’t doing all that much to find out.
If you are a parent, call Autism Speaks world headquarters (212-252-8584) and politely ask them: “Does Autism Speaks have a position on whether or not they believe there has been a real rise in the prevalence of autism? Yes or no? Does Dr. Minshew, as a member of Autism Speaks’ Scientific Advisory Board, speak for the organization?”
And, please forward this to any members of Congress you may know, I’m sure they would find this fascinating.
And, Bob Wright, I encourage you to go back down to Congress, look the same people in the eye who passed your bill, and explain to them why the organization you founded no longer can compare autism to AIDS.
Because the “experts”, in this case your own “experts”, have spoken.
JB Handley is co-founder of Generation Rescue and Editor at Large for Age of Autism.
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Dr. Minshew is yet another example of too many autism researchers who are frustrated and defensive because parents are no longer buying what they are selling.Because she cannot devise a genetic cause for the autism epidemic despite her lengthy career and generous NIH grants, Dr. Minshew decided there is no epidemic at all. Problem solved! Now she is repositioning herself as a children's crusader against the poor pathetic parents who irresponsibly choose not vaccinate their autistic children and or sibs due to ignorance. Dr. Minshew is so close-minded that she was outraged (put the gloves back on Dr. Minshew, no one is impressed) at a fictional TV show in which a parent dares to question the safety of a fictional vaccine perservative. I wish the Dr. Minshews of the world were half as outraged at the fact my son's immune system is destroyed and that his colon is covered with craters resembling volcanoes. I suppose the doctor would label my belief that too many vaccines too soon triggered my son's autism, in her word "crappola". Don't our kids deserve better than this? We need professional, objective open-minded researchers willing to leave no stone unturned, not Dr. Minshew. What is even more difficult to understand is why AS' website promoted Minshew's "there is no epidemic" interview as the lead "news" story for many days running. Why insult the community like that so intentionally? If the person in charge of the website were smart they would offer room for a rebuttal but I am not holding my breath.
Posted by: katie wright | 02/08/2008 at 08:18 PM
Wow ... I feel like I've officialy arrived as an autism blogger. A JB Handley/Katie Wright reference all in one comment.
Hmmm. The way I see it I have a choice. I can align myself with the bitter(JB Handley et al) or I can throw my support behind an organization that is actually taking action to help those dealing with autism today(as referenced in my blog.) Personally, I'm all about action, not the whole bitter blame game thing.
In the words of Martin Luther King, Jr. "I've decided to stick with love. Hate is too great a burden to bear."
Peace out.
Not to be a "goody two-shoes" but it seems to me that we can disagree about whether autism is or is not an epidemic... whether autism is or is not caused by vaccines... whether Suzanne Wright is or is not a @#$% - and STILL applaud and support the existence of grants to support services for families coping with autism.
To me, this is like the genetics versus vaccines/environment debate. IMHO, it is almost certainly BOTH genetics AND some environmental factor. And if parents' anecdotes are any indication, "some environmental factor" is likely, in some cases, to have been vaccines.
Lisa
Well said Lisa Jo. I had no idea you were a fellow goody two-shoes. :)
I've been so focused on raising my son; it's taken this month and reading lots of other blogs for me to see what appears to be a strong division in the autism camp. Heck, I didn’t realize there was such a big community.
What caused autism in my son? I don't have time to worry about that. Of course I can see his genetic heritage fairly clearly -- so if I didn't, I might question it more. However, why him and not others in my family? Maybe there is an environmental 'trigger.'
Would I cure him now if there were a cure? No.
Sure if a cure is found that is great. But, it'll be his choice, not mine if that ever is the case.
So why do I strive for autism awareness?
My goal is wider in scope than a cure. I want to help influence society to be more inclusive, less prejudiced to those they perceive to be different than themselves.
I’m learning, even if there was a cure there are those who wouldn’t want it. There are sub-groups who want to be considered a minority.
Any group that can help reach millions of people and raise awareness is great. To divide the folks who should be working together for change on specific issues – sounds a lot like politics.
I don’t care if our opinions are different on the specifics – our goal is the same isn’t it? Awareness.
What that would lead to – research, money, support, services, tolerance, education – would support everyone’s specific goals I’d think.
Of course, I’m just one mom adding my two cents.
And your two cents make a LOT of sense to me!
Thank you for visiting Autismville and sharing your experience and perspective.
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