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Arc of California action alert: call your state representative now

1 Feb

Budgets are tight in California, with a multi billion dollar deficit projected. The current plan is to cut developmental services budgets by $750 million dollars. Now is the time to call or, if you can, attend hearings in Sacramento.

If you can call, here are the instructions:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

If you aren’t from California, my bet is your governments are facing tight budgets too. Now is a good time to find out where and how you can support your communities during these tough times.

Dear Friends,

Thank you sincerely to everyone planning to come to Sacramento this Thursday and again next Thursday, and to everyone who has phoned your local state senator and assemblymember.

For those who haven’t yet planned to come or haven’t called yet — the developmental disability community needs your advocacy now!

If you already know about the very real threat facing our community, please just scroll to the bottom of this Action Alert for the specifics about what you need to do to help fight it. If not, read on ….

Governor Brown’s proposed budget cuts would gut the Lanterman Act’s promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.

If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars — real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. This is more than twice the disatrous cuts we suffered in 2009.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear!

What You Need to Do!

The Legislature has scheduled just two public hearings in the cuts before taking action. Here is when and where:

* 9:30 a.m. or later, this Thursday, February 3, Room 4202, State Capitol, Sacramento. This is the Assembly heating
* 9:30 a.m. or later, next February 10, Room 4203, State Capitol, Sacramento. This is the Senate hearing.

We need to fill the rooms with people who can briefly tell the legislators what elimination of services would mean to you and those you care for.

And whether or not you can come to Sacramento, please make two calls to your local state senator and assemblymember this week. When you call, get the name of the person you’re talking to, so you can cal him or her again next time. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.

If you already know someone who works for the senator or assemblymember, either in Sacramento or in your local area, call him or her. If not, please call their Sacramento offices. here’s How to get their numbers:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

And I hope to see you in this week and next week.

Thank you for your advocacy.

Greg

P.S. Thanks, too, to everyone who forward my last Action Alert to others. Please forward this one to everyone you know too! We need a very strong show of support to reduce the size of these cuts.

Greg deGiere
Public Policy Director
The Arc of California
1225 – 8th Street, Suite 350
Sacramento, CA 95816
916-552-6619 x16 (office)
916-223-7319 (mobile)
916-441-3494 (fax)

More like you than not

25 Jan

Newsweek has a piece, Autism Finds Its Voice, which discusses a documentary about autistic adults, Tracy Thresher and Larry Bissonnette, and their travels and advocacy (which are combined for this film).

In the documentary Wretches & Jabberers, Tracy Thresher and his friend Larry Bissonnette, who is also autistic, travel from Vermont to Sri Lanka, Japan, and Finland to meet with other autistic adults. Both men grew up not speaking: Larry spent his childhood in institutions, while Tracy attended special-education classes where he passed his days doing puzzles. As adults they learned to type and acquired some verbal abilities. Today they are advocates for their condition, speaking (with the aid of their keyboards and assistants) at conferences about the myths and realities of autism. The goal of the tour, Tracy types in the film, is to “make a difference in the lives of people who can’t talk but are intelligent.”

http://c.brightcove.com/services/viewer/federated_f8/271557391

A short, related piece in Newsweek, And if Autism Were a Song, It Might Sound Like This, discusses the music used in the movie.

The music for Wretches & Jabberers was written by composer and musician J. Ralph, who scored the Academy Award–winning documentaries The Cove and Man on Wire. After watching the film, Ralph asked his musician friends to collaborate on the soundtrack. The catch was they couldn’t hear the songs first. Ralph wanted to capture the musicians discovering the music in the same way the subjects of the film discover language as they learn to type and communicate. Several of the songs borrow the phrases of the film’s subjects for their lyrics.

This piece ends with the positive note:

“I have friends that are on the spectrum, but for me this film is about basic human rights.” Including the right to be heard, even when the process is killingly hard.

I hope the film lives up to the message.

The tour so far for the movie is listed here, with more video clips here (which I’ll probably embed soon in a new post, but go look anyway).

Arc of California Action Alert: people needed to show support in Sacramento

25 Jan

This is a California local issue. At the same time, it is not. Budgets are tight all over in these tough economic times. My guess is that organizations quite near you are looking for people to help support actions to preserve funding for services for the developmentally disabled. The Arc has chapters all over the country. The U.K. has the National Autistic Society and other excellent organizations. Now is a time when they could use your help.

Greg deGiere of the Arc of California sent out the action alert today. The economic situation in California is poor, and Governor Brown has suggested large cuts in addition to those the Department of Developmental Services has already absorbed under Governor Schwarzenegger.

Now is a time when we should show support for developmental services in California. The Arc is calling for people to come to Sacramento on February 3 and February 10 for public hearings on the developmental services budget.

Dear Friends,

Our community is facing its most serious threat in many years.

Governor Brown’s proposed budget cuts would gut the Lanterman Act’s promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.

If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

I’ll tell you more about the threat, but first, here’s what I’m asking you to do:

· Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.

· Call your local state senator and assemblymember this week and give them the same message.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars — real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. The state could eliminate all the regional centers’ operating budgets and still not cut that much.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear.

Here is the best information I have as of today on the committees’ public hearings:

· Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento.
· Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.

And here’s how to call your local state senator and assemblymember, if you don’t know who they or how to call them:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

When you call, get the name of the person you’re talking to. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.

And I hope to see you in Sacramento next week and the week after.
Thank you for your advocacy.

Greg

P.S. Please forward this Action Alert to everyone you know. We need a very strong show of support this time.

Proposed California budget includes big cut for developmental services

24 Jan

In Governor Brown Proposes Massive Cuts to Social Safety Net, Marty Omoto of the California Disability Community Action Network writes:

$750 Million Reduction For Developmental Services

The Governor’s proposal for a $750 million reduction in state general fund spending for developmental services includes the 21 non-profit regional centers.

The bulk of that cut will most likely come from the 21 non-profit regional centers who coordinate community-based services and supports to over 240,000 children and adults with developmental disabilities. The regional centers contracted under the Department of Developmental Services (DDS) also coordinate the state’s early intervention program – called Early Start – that serves over 25,000 infants.

The proposed $750 million reduction does not include any lost federal matching funds which would like push the total reduction in spending in developmental services to close to $1 billion (all funds). This reduction is on top of 2009’s permanent and on-going $500 million reduction (including federal funds lost) in developmental services (the bulk of it impacting regional center funded services).

The $750 million reduction in State general fund spending proposed by the Governor would include the continuation for at least another year of the existing 4.25% reduction in payments to most regional center providers and to regional center operations which was scheduled to end as of June 30, 2011. That reduction would, under the Governor’s proposal, continue at least through June 30, 2012 – though the savings or reduction amount actually is permanent.

The reduction also would be achieved through several unspecified measures, including imposing new accountability and transparency measures; and implementation of a statewide purchase of services standards – first attempted in 2002 by Governor Gray Davis.

Many readers here will know of the Regional Centers as the source of data used by many to track autism “rates” over time. The Regional Centers (RC) are California’s method of administering support services to developmentally disabled residents. Each RC covers a large territory and is responsible for purchasing services from private vendors. This method would be in place of a system where the state employs the administrators and the service providers directly.

That said, the recent budget proposal includes $750,000,000 in cuts for services for the developmentally disabled. This will incur an estimated $250M in lost matching funds and is in addition to previous cuts already enacted.

Take the numbers and do the math, using just the $750M amount as a start. Use 265,000 people served by the CDDS. That’s about $2,800 per person. These are not small cuts.

And there is no end in site to the economic woes of the State.

Why does it matter what happens to Andrew Wakefield?

8 Jan

People have been questioning the necessity of these latest revelations about Andrew Wakefield and suggesting that enough is enough or maybe that all this latest round of publicity will do nothing except make him a heroic martyr. This is possible.

However, for a number of reasons I really feel it is vitally important that not only is there some response but that that response comes at least partly from the autism community.

Firstly, I believe it is necessary for there to be a response full stop. These might be the same set of _facts_ that were uncovered during the GMC hearing but the difference here is that for the first time it has been established that the facts against Andrew Wakefield came about through what the BMJ refer to as fraudulent. This is a huge difference. Up until now it could’ve been argued that Andrew Wakefield simply made a mistake. After the events of the last two days, that can never be honestly argued again.

Secondly, there are a set of people who have been at the rough end of Wakefield’s fraud for the last 13 years. A set of people who have struggled to make new parents understand that there is no risk of autism from the MMR vaccine. Doctors. Particularly paediatricians and GP’s. It is vital that by establishing what Wakefield has done as fraud, the media ensure that the message is spread far and wide. They (the media) have something to atone for in this respect, being the original spreaders of the message that the MMR caused or contributed to autism. They now need to recognise their role in the past and help the medical establishment by ensuring Wakefield can never again spread his fraudulent claims via their auspices.

Thirdly, there is another set of people who have been at an even rougher end of Wakefield’s fraud. The sufferers of the falling vaccination rates of MMR. Its been well documented in numerous places, including this blog how people – particularly children – have been injured and died in the UK and US. The concept of herd immunity, no matter what some might claim is a real concept and when it falls, the level of protection falls. When it falls to far then the people who suffer are the very young, the very old and those who for genuine medical reasons cannot be vaccinated. Wakefield’s fraud needs to be spread far and wide in order for people to realise what he is, what he tried to do and what the consequences were in order to have some confidence in the MMR jab.

Fourthly, there is another set of people who have suffered heavily. This set of people are the silent victims of Wakefield’s perfidy. Autistic people. Wakefield and his supporters, TACA, NAA, Generation Rescue, SafeMinds, Treating Autism et al have turned autism into a circus. The aim of the last decade amongst serious autism researchers and advocates has been to

a) Raise awareness
b) Find evidence-based therapies that will help the life course and independence of autistic people
c) Protect the educational rights of autistic people

and getting research monies to meet these aims is long, hard and slow. Andrew Wakefield and his hardcore of scientifically illiterate supporters have actively derailed that process, dragging research monies away from these principled activities and towards their core aim of degrading vaccines and ‘proving’ vaccines cause autism. Wakefield himself has taken over US$750,000 worth of money to pursue a legal battle against the UK Gvmt. Just think of how that money could have enriched the life of just one autistic person.

However, this same set of people claim to be representative of the autism community. They write nonsense books about autism. They hold celebrity studded fundraisers for autism. They participate in rant-filled rally’s for autism. But none of them are really about autism. What they’re about is anti-vaccinationism.

Every one of these activities denigrate autism and autistic people. They take attention away from where it is needed.

We, the true autism community, made up of parents, autistic people, professionals of autistic people need to do two things. Firstly, we need to wrest back control of the autism agenda from these one-note people. Secondly, we need to speak to society at large and say ‘yes, some members of the autism community believed the fraudulence of Andrew Wakefield but not all of us did. Please don’t tar us all with one brush.’

What Andrew Wakefield has done has impacted everyone. We need to make sure that he and people like him can never affect us all in this way again. To do that we need to speak out about him, loudly and as long as it takes.

Upcoming IACC Full Committee Meeting – Tuesday, January 18, 2011 – Rockville, MD

29 Dec

The Interagency Autism Coordinating Committee (IACC) creates the “Strategic Plan” which serves as the main roadmap for autism research funding in the United States.

The IACC is going to have a full committee meeting on January 18 to update the Strategic Plan.

Or, to put it simply, this is where the rubber meets the road for the IACC. If you want to have an impact–and, yes, public input does have an impact–now is your chance to submit public comments. One place to send comments is the address given in the announcemt below: IACCpublicinquiries@mail.nih.gov.

Here is a pie chart of the funding breakdown according to the categories that the IACC Strategic Plan uses.

(click to enlarge).

Figure that research takes 5-10 years to bear fruit, in general. When I take a look at that pie chart and think about what segments have the possibility of really impacting my child’s life in the relatively near future, I would like to see more money spent in areas involving older children, adolescents and adults.

Here is the IACC announcement.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 18, 2011 from 10:00 a.m. to 5:00 p.m. ET in Rockville, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC will review and approve the final 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

Meeting location:
The Neuroscience Center – Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
6001 Executive Boulevard
Conference Rooms C and D
Rockville, MD 20852

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Professor Simon Baron Cohen endorses Neurodiversity

16 Dec

Neurodiversity, that much misunderstood, much maligned concept has been dragged through the mud for years by people determined to misunderstand it and misrepresent it. We all know who these people are.

However, it also has its supporters and people determined to understand it on either a social or personal level. One such person is Professor Simon Baron-Cohen.

In an interview with the Encyclopaedia Britannica blog Professor Baron-Cohen was asked:

Individuals with Asperger syndrome often use the term “neurotypical” to describe normal people, and in an effort to lessen the stigmatization associated with autism as a medical condition, the Asperger community has initiated the so-called neurodiversity movement. Can you briefly describe the neurodiversity movement and its implications on the diagnosis of autism spectrum conditions?

To which he replied:

The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points.

…

Stigmatizing anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.

How nice to see a researcher who _gets_ it.

Society vs Individuals

17 Nov

In amongst yesterdays fun and games, the author of the paranoid piece itself, JB Handley included the following statement:

What parent of an autistic child would write, “my main concern is to create a better world for all people, but especially for people with disabilities. Autism is a great challenge. People with autism deserve respect and support”? Give me a break! A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

I commented briefly on this paragraph by Handley but the more I mulled it over, the more I thought it deserved its own blog entry.

There are those that believe that even though they are parents, they have a responsibility to society and particularly to the society in which their own child belongs. Sullivan’s child, like mine, is autistic and therefore disabled (amongst other things) and so we (and many of our online friends and colleagues) believe that we owe a debt of responsibility in our writing to both this particular society. We believe this for numerous reasons:

1) The betterment of that society is the betterment of the society in which our child resides.
2) Its simply the right thing to do.

However people such as JB Handley clearly believe their own child and no one elses is important. There is no such thing as society in this world view.

This tallies neatly with their other set of beliefs. I’m talking of course about vaccination. To choose to vaccinate is a supremely societal act. When you vaccinate you are saying that not only do you believe in protecting your _own_ child, you believe in protecting the society around him/her. The concept of herd immunity illustrates this perfectly:

More than a hundred years ago, scientists were noting that not everyone had to be vaccinated against smallpox to stop an epidemic in its tracks*. Scientists also noticed that when they were wiping out smallpox, not everyone needed to be vaccinated to have the disease disappear. In many places, it was enough if 80% of the population could be vaccinated and revaccinated in a 4-5 year period.

Why do we do this? Why do we need to protect the herd? We do this because no vaccine is 100% effective. There will always be people who cannot be vaccinated and these people need to be protected. Why? Because its the right thing to do.

Anti-vaccinationism takes the directly opposite path. They claim – as does JB Handley – that it is only ones _own_ child that matters and that society can go hang. By electing not to vaccinate they not only put their own child at risk, they also put the herd at risk. They have forgotten that one of societies greatest accomplishments was learning to work together for the common betterment of us all.

One of the things that speaks most to not just Handley’s set of beliefs but the beliefs of those he speaks to is the idea that anyone could find what Sullivan said as anything but crazy:

A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

Remember that when these parents march ‘together’ they are nothing of the sort. They are a group of individuals looking out for No.1 and No.1 only.

Planting a tree in Isreal

15 Nov

If you read Orac’s blog, Respectful Insolence, you would have seen the post, Requiem for a friend I’ve never met. I too “knew” Mark. I’ve been trading emails with him for a few years now. I’ve never met him in person, or even heard his voice.

Mark was a fighter. He was fighting the good fight before I even knew about it. Mark was working to make life better for my kid before I had a kid. He was intensely proud of his kids.

Mark’s son let a comment on Liz Ditz’ facebook page:

Please plant a tree in my dads honor in Israel. He would want that to show a sign of growth. Thank you

I took Liz’s suggestion and made a donation to the Jewish National Fund.

Farewell Mark. I wish your family peace in these times.

IACC meeting tomorrow

20 Oct

The Interagency Autism Coordinating Committee (IACC) is holding a regular meeting tomorrow. The announcement is below.

The IACC creates the “Strategic Plan” which guides autism research efforts in the United States. Primarily, the Plan is for use by U.S. governmental groups, but there is input from major private sources of autism research funding as well.

The meeting will be webcast at http://videocast.nih.gov/, and a coference call listen-only line will be available at:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

The IACC had a “Request for Input” (RFI), a call for public comments. Those comments are online here.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Friday, October 22, 2010 from 10:00 a.m. to 5:30 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: Invited speakers will give presentations on various aspects of autism spectrum disorder research and services and the IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research. Speakers include: Dr. Alexa Posny, Dr. Richard Frank, Ms. Wendy Fournier, Ms. Lori McIlwain and Dr. Kevin Pelphrey. The full agenda is available online at: http://iacc.hhs.gov/events/.

Meeting location:
The National Institutes of NIH, Main Campus – Google map imageMap and Directions

The William H. Natcher Conference Center

45 Center Drive

Conference Rooms E1/E2
Bethesda, Maryland 20892

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, public comment instructions and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

The agenda is online, and below.

Time Event
9:00 a.m. Onsite Registration Desk Opens
10:00 Call to Order and Opening Remarks

Thomas Insel, M.D.
Director
National Institute of Mental Health and Chair, IACC
10:10 Review and Approval of July 16, 2010 Minutes
10:15 Alexa Posny, Ph.D.
Assistant Secretary of Special Education and Rehabilitative Services
U.S. Department of Education
10:45 Wandering and Autism: The Need for Data and Resources

Wendy Fournier
President
National Autism Association

Lori McIIwain
Board Chair
National Autism Association
11:15 The CLASS Act

Richard Frank, Ph.D.
Deputy Assistant Secretary for Policy and Evaluation
Department of Health and Human Services
11:45 Neural Signatures of Autism

Kevin Pelphrey, Ph.D.
Harris Associate Professor of Child Psychiatry
Child Study Center and Child Neuroscience Lab, Yale University
12:15 p.m. Lunch
1:00 Public Comments
1:30 Meeting Update: NICHD Workshop “Disparities in the Identification of Children with Autism Spectrum Disorders,” August 19, 2010

Alice Kau, Ph.D.
Health Scientist Administrator
Intellectual and Developmental Disabilities Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development

Regina Smith James, M.D.
Director
Division of Special Populations, Eunice Kennedy Shriver National Institute of Child Health and Human Development
1:40 Meeting Update: NIEHS Workshop “Autism and the Environment: New Ideas for Advancing the Science,” September 8, 2010

David Armstrong, Ph.D.
Senior Investigator, Chief of the Laboratory of Neurobiology
National Institute of Environmental Health Sciences
1:50 Meeting Update: “Genetic Risk Factors for Autism Spectrum Disorders: Translating Genetic Discoveries into Diagnostics” Symposium, September 1-2, 2010

Stephen Scherer, Ph.D.
Director
The Centre for Applied Genomics, The Hospital for Sick Children
Director
McLaughlin Centre for Molecular Medicine, University of Toronto
2:00 Meeting Update: Simons Foundation Autism Research Initiative (SFARI) Annual Meeting, September 12-14, 2010

Gerald Fischbach, M.D.
Scientific Director
Simon’s Foundation Autism Research Initiative
2:10 Research Update: Study of Health Outcomes in Autistic Children and Their Families

Ann Wagner, Ph.D.
Chief
Neurobehavioral Mechanisms of Mental Disorders Branch, National Institute of Mental Health
2:20 Data Sharing Update: National Database for Autism Research (NDAR)

Michael Huerta, Ph.D.
Director
National Database for Autism Research, National Institute of Mental Health
2:25 Committee Business

* Workshop Update – Services Subcommittee

2:30 Break
2:45 Committee Business

* RFI update
* Portfolio Analysis update
* Discussion: Updating the Strategic Plan

5:00 Public Comments Discussion Period
5:30 Closing Comments and Adjournment

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