Archive | Politics RSS feed for this section

ABC Nightline video on the Judge Rotenberg Center

1 Jul

“No detrimental effects whatsoever”. That’s what Matthew Isreal has to say about the shocks used as aversives. I somehow remain unconvinced. The Judge Rotenberg Center has now come under the scrutiny of the United Nations Special Rapporteur on Torture, who has called on the Obama administration to investigate the center.

Obviously, major electrical shocks can be quite harmful. The most serious physical damage occurs when current passes through organs, like the heart. The JRC device appears to be designed to keep the shocks local. At about 50 seconds into the video they apply an electric shock from one of the JRC’s devices to the Nightline commentator. The shock is applied to her arm, but watch her leg twitch. The effects aren’t exactly localized, are they? That is troublesome to me because we don’t know what is going on internally from the shock.

As to emotional long term side effects, who knows? Seriously, can Dr. Isreal really make the claim of “no detrimental effects whatsoever”? Based on what evidence?

From a previous press release criticizing the JRC

The Judge Rotenberg Center (JRC) in Canton is believed to be the only facility in the country that uses often painful electric shock therapy on disabled children in order to alter behavior. In 2007, the State launched a criminal investigation into an incident where a prank phone call to the school led to the repeated electric shocking of two individuals in the dead of night. One of them, a child, was shocked 29 times, the other was shocked 77 times – sometimes while restrained, causing burns so severe they needed to be treated at a hospital. That investigation is apparently ongoing. In October 2009, the JRC made headlines again when Director Matthew Israel was fined by the Massachusetts Division of Professional Licensure for allowing 14 unlicensed employees at the school to use the title “psychologist.”

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf

National Council on Disability Newsletter, June 2010

28 Jun

I received the Newsletter for the National Council on Disability via email this morning:

Message from the Chairman:

I am truly honored to have been appointed by President Obama as Chairman of the National Council on Disability (NCD). I am delighted to be joined by seven new Members whose nominations were also confirmed by the U.S. Senate this Spring and our continuing Members appointed by President Bush. To learn more about our Members, please visit: http://www.ncd.gov/newsroom/members/members.htm.

This is the first newsletter of my chairmanship and as such I am actively seeking your input and advice to make NCD more transparent, participatory, and collaborative in implementing the public policy mandate found in NCD’s authorizing statute.

My primary objective is to build a solid foundation for NCD to carry its work into the future and that means being able to coordinate and collaborate effectively across the Federal Government, with state and local governments, and with a variety of stakeholders within the disability community. We are at a critical juncture. There is no longer any mystery about the broad policy objectives for people with disabilities. The uncertainties regard concrete and actionable steps toward implementing our policy objectives. Absent effective leadership and coordination, we will continue to fall short both in improving the lives of people with disabilities and in stabilizing our nation’s fiscal health.

To be an effective agent, NCD must actively engage with the community it was created to serve. Accordingly, NCD will be aggressive, creative, and steadfast in identifying ways to be transparent about its activities and to solicit input from all interested stakeholders. NCD’s engagement will also need to be timely and relevant. NCD will strive to help set the agenda where it can, but our greatest impact will frequently be on issues and topics for which there are windows of opportunity. We need to ensure that NCD is aware of these windows and how best to tailor and present its recommendations so that they make a real difference in advancing disability policy objectives.

I welcome and value your feedback on the Council’s activities, including what you want in future newsletters and communications with the public. The Council is embarking on a new era and we want to reach out to you in this open invitation for suggestions on everything we’re doing. You are our stakeholders and we depend on you to let us know how we can better serve the community. I encourage you to share your thoughts, ideas, and general comments. You can email NCD at ncd@ncd.gov. There is much work to be done and your feedback is key.

Sincerely,

NCD_signaature02.png

Jonathan Young

In the News

Congressional Testimony

On June 15th, Chairman Young had the privilege of testifying before the Subcommittee on Emergency Communications, Preparedness and Response on “Caring for Special Needs during Disasters: What’s being done for Vulnerable Populations.” His testimony can be found at: http://www.ncd.gov/newsroom/news/2010/HS_Subcomm_Young_Testimony_FINAL.htm. The purpose of this hearing was to receive testimony on the actions taken by FEMA, non-profits, and localities to address the needs of vulnerable populations, including people with disabilities, the poor, children, and persons with limited English proficiency, during disasters.

National Summit on Disability Policy 2010

Since Chairman Young’s confirmation he has been immersed in preparation for NCD’s National Summit on Disability Policy, which will take place at the Renaissance Washington, DC Hotel, 999 9th Street, NW, Washington, DC, July 25–28, 2010.

The Summit’s cross-cutting theme of Living, Learning & Earning is designed to launch a national dialogue on disability policies and programs in the 21st century. As the invited guests gather in Washington, DC to celebrate the 20th anniversary of the signing of the ADA, we want to begin substantive discussions about the future of disability policies and programs and promote extensive collaboration at all levels of government and among all stakeholders. The Summit now includes an additional half-day, post-Summit discussion session on July 28, where NCD will reflect on the Summit’s proceedings and entertain additional stakeholder input.

White House Launches Celebration Of 20th Anniversary Of Americans With Disabilities Act
On June 8th Valerie Jarrett, Senior Advisor to President Obama, kicked off the White House’s celebration of the 20th Anniversary of the Americans with Disabilities Act, delivering remarks to over 2,000 people from around the world at the VSA International Festival at the Kennedy Center. Read Ms. Jarrett’s full remarks at http://www.whitehouse.gov/blog/2010/06/08/white-house-launches-celebration-20th-anniversary-americans-with-disabilities-act

FCC ADA Anniversary Celebration

As part of its continuing effort to develop and implement consumer-focused policies, including disabilities access, the Federal Communications Commission (FCC) will begin its year-long celebration of the 20th Anniversary of the ADA on Monday, July 19, 2010. The event will be held in the afternoon, in the Commission Meeting Room. The event will include the following:

•Launch of the Commission’s Accessibility and Innovation Forum
•Announcement of FCC initiatives concerning disability access
•Technology Expo of emerging communications equipment and services
•Debut of a video documenting first-person testimonials on disability access
•Performances by Gallaudet University students

Additional information about the event will be released at a later date. The celebration is free and the public is encouraged to attend. Pre-registration is encouraged, but not required. To pre-register or request accommodations, please send an E-mail to: Pam.Gregory@fcc.gov, or call (202) 418-2498 voice; (202) 418-1169 TTY.

NCD Vice Chair Fernando Torres-Gil Addresses Aging

On May 27, NCD Vice Chair Fernando Torres-Gil, Ph.D., provided the keynote address at the 2010 Area 1 Agency on Aging’s “Celebration of Seniors” luncheon and awards ceremony in Eureka, California.

Read the entire advance story from the May 25 Eureka Times-Standard at http://www.times-standard.com/lifestyle/ci_15156690.

NCD Board Member Gary Blumenthal Discusses Center Closure

On May 20, NCD Board Member Gary Blumenthal’s guest column on closing a local developmental center appeared in the Waltham, Massachusetts, Daily News Tribune.

Read the entire column about the closure of Fernald Developmental Center at http://www.dailynewstribune.com/opinions/columnists/x258107902/Fernald-closure-saves-money.

On May 30, the Boston Globe published a letter to the editor by Mr. Blumenthal that discusses the benefits of community-based settings.

The letter can be found at http://www.boston.com/yourtown/sudbury/articles/2010/05/30/disabled_can_find_opportunities_in_the_community/.

Federal Medical Assistance Percentages

On June 7, NCD Chairman Jonathan Young sent a letter to Senate Majority Leader Harry Reid and Senate Minority Leader Mitch McConnell urging swift action in providing a six-month extension of the enhanced Federal Medical Assistance Percentages contained in the Senate-passed American Workers, State, and Business Relief Act of 2010 (H.R. 44213) but omitted from the American Jobs and Closing Tax Loopholes Act passed by the U.S. House of Representatives.

Anniversary of Olmstead v. L.C.

June 22 marked the 11th anniversary of the landmark 1999 U.S. Supreme Court decision in Olmstead v. L.C., in which the Court held that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the ADA.

Since that time, progress has been made. Many individuals have successfully transitioned to community settings, but waiting lists for community services have grown considerably and many individuals who would like to receive community services are not able to obtain them.

NCD believes that continued implementation of Olmstead is of paramount importance to the nation as demographics shift toward older Americans, and is one of the top priorities of the disability community.

CMS Announcement

Our partners at the Centers for Medicare and Medicaid Services (CMS) made a recent announcement that we believe will be of interest to you:

CMS State Medicaid Directors Letter # 10-008 issued May 20, 2010, entitled “Re: Community Living Initiative,” which reminded states of their obligations to implement the Olmstead decision, reported on recent progress made as a part of the Community Living Initiative and highlighted resources and guidance to help states in their compliance efforts.

You can download a PDF of the CMS State Medicaid Directors Letter from http://www.cms.gov/smdl/downloads/SMD10008.pdf.

The Affordable Care Act

A blog, entitled “What the Affordable Care Act Means for Americans with Disabilities” by Henry Claypool, Director of Office on Disability, U.S. Department of Health and Human Services, was posted on May 21, 2010, at http://www.healthreform.gov.

To read the entire blog, please go to http://www.healthreform.gov/forums/blog/disabilities.html.

ODEP Announces National Disability Employment Awareness Month Theme

On May 13, the U.S. Department of Labor’s Office of Disability Employment Policy unveiled the official theme for October’s National Disability Employment Awareness Month: “Talent Has No Boundaries: Workforce Diversity INCLUDES Workers With Disabilities.” The theme serves to inform the public that workers with disabilities represent a diverse and vibrant talent pool for hire.

To read the full announcement, please go to http://www.dol.gov/opa/media/press/odep/ODEP20100630.htm.

FCC and FEMA Announce Workshop on 21st Century Emergency Alerting: Leveraging Multiple Technologies to Bring Alerts and Warnings to the Public

On June 10, the Federal Communications Commission’s Public Safety and Homeland Security Bureau and the Federal Emergency Management Agency’s (FEMA’s) National Continuity Programs held a workshop on 21st Century Emergency Alerting: Leveraging Multiple Technologies to Bring Alerts and Warnings to the Public.

This meeting was important to people with disabilities because emergency warnings still do not adequately reach people with disabilities during disasters. Most disaster warnings broadcast via conventional media avenues only, which may not be accessible to people with hearing or vision disabilities.

For more information, please see the full announcement at http://hraunfoss.fcc.gov/edocs_public/attachmatch/DOC-298198A1.txt.

About the National Council on Disability Newsletter

The Newsletter, which is also available on the Council’s website at www.ncd.gov, brings you the latest issues and news for people with disabilities. To subscribe to the NCD listserv, go to http://listserv.access.gpo.gov, click on online mailing list archives, select NCD-NEWS-L, then join or leave the list, and finally, complete the short subscription form.

Ari Ne’eman’s previous work with the National Council on Disability

23 Jun

Ari Ne’eman has been appointed as a full member of the National Council on Disability. With that announcement came some criticism of the appointment, including comments on this blog indicating that Mr. Ne’eman’s doesn’t have the experience necessary to serve.

Given that, I thought I would share a couple of things I found on the NCD’s website. I was searching for an announcement of the Senate confirmation of his appointment. What I found was a surprise to me: Mr. Ne’eman has been working with the NCD since 2007 in the Youth Advisory Council.

This recent announcement acknowledges some of Mr. Ne’eman’s work bringing together a coalition of disability organizations:

Advisory Committee Member Achievement

NCD’s Youth Advisory Committee policy workgroup leader, Ari Ne’eman (NJ), received recent accolades for his successful leadership of advocacy work that mobilized the broader disability community on an international scale. In his thank-you note to the 22 disability rights organizations and countless individuals whose combined efforts resulted in withdrawal of an ad campaign depicting people with disabilities in a negative way, Ari noted “this is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world” (www.autisticadvocacy.org).

Mr. Ne’eman was a leader of the NCD’s Youth Advisory Council policy workgroup starting in 2007.

With its charter renewed until October 2009, NCD’s YAC met on November 15, 2007, after welcoming seven new members, new officers (Amy Doherty-chair; Carly Fahey -vice chair; Matt Cavedon -Secretary), procedural workgroup leaders (Ari Ne’eman-Policy; Daman Wandke-Outreach and Networking), and mentors (Stephanie Orlando and Miranda Pelikan). The committee reported topics and issues of interest such as aversives and restraints, healthcare accessibility, expanding ways of gathering youth and young adult perspectives, and planning to make a new proposal to NCD about disability history awareness-raising. We welcome aboard in FY2008 Jesutine Breidenbach (MN), Brett Cunningham (OK), Paul Fogle (PA), Eddie Rea (CA), Nicole Schneider (FL), Nathan Turner (OH), and Bryan Ward (DE). YAC meets again on January 17, 2008, at 4:00 p.m. EST. Please e-mail your questions about YAC to Dr. Gerrie Hawkins

Maybe it is time to give Mr. Ne’eman credit for years of service and welcome him to the NCD?

Penn Jillette doesn’t know his ADA from a hole in the ground

23 Jun

Apologies for the title. But watching a Penn and Teller Bull**** episode a few times over has inundated me with profanity.

Penn and Teller are a magician team. They also have a show on American cable TV, Bull*****. They have an upcoming episode on the anti-vaccine movement and because of this Penn has recently put out a short video about Andrew Wakefield. When I blogged that piece, one commenter noted that Penn and Teller have taken on the Americans with Disabilities Act (ADA), claiming it is “bull**** on wheels”. OK, the commenter didn’t quote the “Bull**** on wheels part, but that’s how Penn describes it.

I found that there was an episode of Bull***** called “Handicap Parking”, in which Penn and Teller take on the ADA. The episode is below. Warning, Penn is fluent in profanity.

This is the first episode of “Bull****” I have watched. I will say parts of it are interesting. Watch what is going on in the background. There is a guy who is very adept at getting around in his wheelchair. Certainly more of an athlete than either Penn or Teller (or I, for that matter). Even while is he there to make the point that one can be in a wheelchair and still be quite capable, he also would not be able to get out of his car if someone were to park right next to him–and that is at the very beginning of the episode. No one is free from being poked at. Take the gentleman who most closely tells the story that Penn is promoting. At one point they have a voiceover from that gentleman talking about how with the ADA in place, people are not compassionate and accommodating. In contrast to that message, the video shows strangers pausing to open doors and be polite to him.

But those events are minor compared to some of what is said and done on that show:

Where to begin? I realize that they only had 30 minutes, but the ADA is not just about physical disabilities and certainly not just about parking. Penn’s approach is not so much ableist as libertarian: the government shouldn’t be mandating “compassion”. There’s ableism in there, don’t get me wrong. When discussing accessible buses he comments, “if you were disabled and lived in New York City what more could you ask for…other than not to be handicapped?”

Now here’s the bit of chicanery that got me to blog this. This comes about 4 minutes into the part 2 video.

“Who does the ADA classify as disabled? It starts with people who use a wheelchair, cane, crutches or a walker…” He goes down a list until he gets to “Now it gets a little vague. And here’s where it gets f***ed up. You see, in order to get to that 50 million number, according to the government, also includes people who have difficulty keeping track of money, doing light housework, and using the phone. No s***.”

They then cut to Teller in his car looking quizzically at his cell phone. When he can’t figure it out, he puts up a handicap placard and gets out. Yes, if you can’t use a phone you get to park in a blue space.

They are using the absurd to make a point with Teller and the phone. Sure. But what about Penn’s voice over leading up to that? Is he quoting the ADA? No.

The definition of a disability according to the ADA is:

(1) Disability

The term “disability” means, with respect to an individual

(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment (as described in paragraph (3)).

(2) Major Life Activities

(A) In general

For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.

(B) Major bodily functions

For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.

(3) Regarded as having such an impairment

For purposes of paragraph (1)(C):

(A) An individual meets the requirement of “being regarded as having such an impairment” if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.

(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor. A transitory impairment is an impairment with an actual or expected duration of 6 months or less.

No language “if you can’t use a phone, you get a handicap parking space.”

Where did that come from? They have a visual in place to support Penn’s voice over. That document is here. Did you notice the link? That’s a document from the Census Bureau, not a quote of the ADA at all. It’s a bit of sleight of hand, if I may call it that. He tells us the figures and definition are from the ADA website, but is actually using a document and statistics from another agency (the Census Bureau) created for a different purpose.

Maybe ada.gov has the 50 million disabled statistic Penn refers to. If so, I can’t find it. It doesn’t change things. Penn uses one definition of disability–a broad definition–to make the claim that the ADA is too broad.

This allows Penn to say, “The ADA equates the difficulties of a 21 year old blind girl with severe autism to some a-hole who can’t figure out how to use redial”.

No. The ADA does not equate the two. But that would get in the way of Penn’s narrative–that there are a lot of people without “real” difficulties who are misusing the ADA. One of his guests asserts that “Without this law, the *truly* handicapped would be socially, morally and financially better off than they are today”. Rather than back that statement up with some data Penn goes to comedy, pushing a guy in an iron lung around Hollywood.

As the episode goes on, they bring up a man who does appear to be misusing the ADA to demand money from businesses he claims are not accessible. Yep, there are bad people of all sorts. I won’t disagree there.

Nothing, including the ADA, should be above criticism. I have no problem with Penn and Teller taking a critical look. The ADA is far from perfect. But it’s important enough to get their facts straight. Also, I would disagree with the claim that society would be as accommodating if the ADA weren’t in existence.

His take, as I mentioned above, is rather libertarian. He quotes part of the purpose of the ADA, “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities”. He then follows with, “How about the government sticks to courts, police, defense and corruption and leaves compassion to the people who f***ing have it!”

Nice straw man there. The ADA isn’t about compassion. The word “compassion” isn’t in the text anywhere. One can be bereft of compassion and not discriminate and one can discriminate while being full of compassion. It isn’t about making people physically equal as Penn asserts.

I’ll leave you with one last segment. One of the guests comments that accessibility is similar to racial discrimination. Penn counters, “Equating handicap access with racial discrimination is bullshit. Black people weren’t allowed in the front of the bus due to Jim Crow laws of segregation. Handicap people can’t get on the bus because of Isaac Newton’s laws of physics”.

What a strange comment. Here’s a hint for Penn: lift mechanisms on buses use Isaac Newton’s laws of physics.

The Court–part of what the government is supposed to do in his libertarian view–can require buses use Newton’s laws to allow access. Frankly, buses aren’t included in Penn’s litany of what the government should do anyway, but don’t let that get in the way of a good narrative.

Ari Ne’eman appointed to National Council on Disability

22 Jun

Ari Ne’eman has been appointed to the National Council on Disability. This will make him the first autistic member of the Council. Mr. Ne’eman is the Founding President of the Autistic Self Advocacy Network (ASAN).

I have been checking the Senate Calendar periodically to monitor the status of his nomination, which was on hold. When I found his name was no longer on the calendar, I did a quick google search and round Senate Confirms Controversial Autism Self-Advocate To National Disability Council. Disability Scoop notes that Mr. Ne’eman’s appointment was unanimously approved by the Senate.

Earlier this year, Mr. Ne’eman was appointed to the Interagency Autism Coordinating Committee.

Interagency Autism Coordinating Committee (IACC) wants your input

18 Jun

The Interagency Autism Coordinating Committee creates the Strategic Plan for the US Government’s research efforts in autism. They update this every year. They are seeking input from the public.

What do you think should autism research should focus on in the future? Now’s your chance to let your voice be heard. Public comments can be entered here: http://iacc.hhs.gov/public-comment/2010/index.shtml.

The website will take you through the entire Strategic Plan, section by section. You don’t have to respond to everything. If you just have a few short messages for the IACC, go ahead and let them know.

IACC Issues New RFI to Solicit Public Input to Inform the 2011 Update of the Strategic Plan

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 20, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

To access the RFI, please go to: http://iacc.hhs.gov/public-comment/2010/index.shtml.

Upcoming Joint Conference Call of IACC Subcommittee for Planning the Annual Strategic Plan Updating Process and IACC Services Subcommittee – June 18, 2010

14 Jun

I just received this notice. The Interagency Autism Coordinating Committee (IACC) prepares the “Strategic Plan” for the government’s efforts in autism research and is charged with advising the Secretary of Health and Human Services on issues involving autism

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process and the IACC Services Subcommittee will be holding a joint conference call to discuss plans for a fall 2010 IACC Scientific Workshop on the topic of ASD services on Friday, June 18, 2010 from 10:00 AM – 12:00 PM ET.

The purpose of the conference call is to discuss plans for a fall 2010 IACC Scientific Workshop on ASD services research.

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. This phone call may end prior to or later than 12:00 PM, depending on the needs of the subcommittees.

To access the conference call:

USA/Canada Phone Number: (800) 369-3340
Access code: 8415008

The latest information about the meeting can be found at: http://iacc.hhs.gov/events/2010/subcommittee-for-planning-the-annual-strategic-plan-updating-process-mtg-announcement-June18.shtml

You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit: http://iacc.hhs.gov/

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

Please note: The meeting may end prior to or after 12:00 PM, depending on the needs of the committee.

Tom Insel faces scrutiny

8 Jun

Dr. Tom Insel is the director of the U.S. National Institute of Mental Health (NIMH) and also chairs the Interagency Autism Coordinating Committee (IACC). As such, he has been placed under a lot of scrutiny and criticism from some sectors of the autism community.

He now faces scrutiny from other quarters.

Science Insider has a story, NIH Conflicts Overhaul Bumps Up Against Psychiatry’s Old Boys Network. The story is also in the Chronicle of Higher Education as As He Worked to Strengthen Ethics Rules, NIMH Director Aided a Leading Transgressor.

The scrutiny involves Dr. Insel’s actions in possibly supporting a former colleague from Emory Universiy, Dr. Charles B. Nemeroff, in his effort to find a new position at the University of Miami. Dr. Nemeroff was sanctioned at the time for conflict of interest issues, including a two year ban by Emory on applying for NIH funding.

From the Chronicle:

A yearlong effort by the National Institutes of Health to toughen its policies against financial conflicts of interest was led by an administrator who quietly helped one of the most prominent transgressors get hired by the University of Miami after a decade of undisclosed corporate payments led to his departure from Emory University, a Chronicle investigation has found.

The administrator, Thomas R. Insel, director of the National Institute of Mental Health, also encouraged the researcher, Charles B. Nemeroff, to apply for new NIH grants, even though Emory had agreed on its own to restrict Dr. Nemeroff from NIH grant eligibility for two years. The NIH also allowed Dr. Nemeroff uninterrupted eligibility to serve on NIH advisory panels that help decide who receives NIH grant money.

From Science Insider:

Nemeroff then applied for a job at the University of Miami’s medical school. According to e-mails that The Chronicle obtained, the school’s dean, Pascal Goldschimidt, e-mailed Insel in July 2009 to ask for a “confidential opinion” regarding Nemeroff. Insel replied that he could not provide a written recommendation but could talk to Goldschmidt informally by phone, which he apparently did, according to the e-mails. (Goldschimdt told The Chronicle he wanted to be sure Nemeroff could receive NIH grants and that Insel assured him “that Charlie was absolutely in fine standing.”) At the time, Insel co-chaired a new NIH committee to revise federal COI regulations; NIH proposed changes in those rules last month.

Addendum:

Dr. Insel discusses issues involved in the above in his blog post NIMH – Reducing Conflict of Interest, Ensuring Public Trust. Given that his post in to a U.S. Government website, I don’t see a problem reproducing it in whole here:

Over the past five years, there have been several psychiatrists implicated in financial conflicts of interest (fCOI). Some of these psychiatrists were funded by NIMH. Two questions have been raised: is fCOI a greater problem for psychiatrists than other medical specialties? And is NIMH part of the problem or part of the solution? I addressed the first question in a recent JAMA commentary.

The second question – what is NIMH’s role? – is raised by allegations that NIMH has not taken this problem seriously and that as Director, I have failed to take action against those who have been accused. These allegations are particularly surprising to me because the Institute has done so much to ensure that the research we fund meets the highest standards of integrity—free of bias or hidden agendas. Beginning in August 2008, NIMH established a new internal process to review all grants prior to funding and all nominees for advisory panels prior to appointment to identify potential fCOI issues. When concerns arise, we require the institutions involved to provide additional information regarding compliance with the current fCOI Regulations to ensure the fCOI has been managed, reduced or eliminated.

The Institute is taking additional steps to preserve the integrity of NIMH-supported research. NIMH is developing a training course to help those in academic psychiatry understand the reasons for Regulations regarding fCOI.

In addition, as part of our mission, NIMH supports research to study problems in the use of evidence based practices, such as the continued under-utilization of psychosocial treatments and the ways by which certain medications may become overused.

Concurrently with the Institute’s aggressive stance to address fCOI, NIH (with NIMH in a leading role) has proposed a new approach towards strengthening Federal Regulations. A Notice of Proposed Rulemaking was published on May 21, 2010 outlining a more rigorous approach to investigator disclosure, management of conflict by universities, and federal oversight. Available for public comment until July 20, 2010, we urge our many partners to review and comment on these proposed revisions to the current fCOI Regulations. We are hopeful that with strengthened Regulations, the Institute will be more efficient and proactive in minimizing potential sources of bias in research.

There is an additional question being asked of those who have violated existing policies: Will they be permitted to apply for grants? Any scientist can apply for NIH funding unless he or she has been “debarred”, the result of an official process via the HHS Office of Research Integrity. Absent this, all applicants must be treated fairly and equally.

NIMH has a critical national mission: to transform our understanding and treatment of the nation’s most disabling disorders (WHO 2008). This will require the best minds from government, academia, and the private sector working for the public good and not for personal gain. As the steward of public funds at NIMH, I am committed to ensuring that we support science that is unequivocally in the public’s interest, unambiguously supported by the public trust.

The second-to-the-last paragraph addresses one issue raised in the Chronicle story–that of the status of Dr. Nemeroff’s ban from applying for NIH grants. He was banned by his University, Emory, not the NIH. Dr. Insel informed U. Miami that Dr. Nemeroff was not banned or “debarred” by NIH.

Dr. Tom Insel on Demystifying Autism

12 May

Dr. Tom Insel wears many hats, as they say. He is the director of the National Institute of Mental Health (NIMH), one of the National Institutes of Health run by the US Government. As part of his function there, he chairs the Interagency Autism Coordinating Committee (IACC). The IACC prepares the “Strategic Plan” for the government’s activities in autism research.

Dr. Insel has obviously taken autism research very seriously. He doesn’t just chair the IACC, he obviously spends a lot of time reviewing autism research. I doubt many people at the Director level at NIH would spend the amount of time Dr. Insel obviously spends on autism.

He has recently given a few talks on autism, the current state of knowledge and the directions for research. One such talk was at NIH and was titled Demystifying Autism . Another talk was given at MIT and was hosted by the Simons Foundation. (sorry, I can’t find embed code for those talks)

Dr. Insel talks about how there is a large diversity in the autism population. The “spectrum” is broad, as likely most readers to this blog will already know. In both talks, Dr. Insel uses video from Dov Shestak (son of Portia Iverson and Jon Shestak, founders of Cure Autism Now, which is now part of Autism Speaks). This is used to give an example of regression in autistics.

Of course one large section is devoted to the increasing autism prevalence. Dr. Insel mentions the epidemiological work of Peter Bearman, which shows that much of the increase in the California Department of Developmental Services autism caseload can be accounted for by diagnostic changes and social factors. But, not all of the increase has been accounted for. Dr. Insel uses the term that the burden of proof is on those who would say that the increase is not “real”. I would put it differently–that given the lack of definitive information on the causes of the rise, we should continue to look for possible environmental causes. Many use the term “environmental cause” to mean “vaccines”. That’s not what I, or it appears, Dr. Insel mean though.

Dr. Insel discusses one yet-unpublished study: the California Twin Study.

Here is his power point slide (which you can click to enlarge if you wish):

Slide showing results of yet unpublished twin study

Dr. Insel's slide on Twin Study

or–

Narrow criteria:
monozygotic (“identical”)–80% concordance
dizygotic (“fraternal”)– 26% concordance
.
broad criteria
monozygotic–87% concordance
dizygotic– 39% concordance

This is consistent with a recent study from the Kennedy Kreiger Institute at Johns Hopkins. While this wasn’t discussed by Dr. Insel, I include the abstract for that study below:

OBJECTIVES: To examine patterns of autism spectrum disorder (ASD) inheritance and other features in twin pairs by zygosity, sex, and specific ASD diagnosis. DESIGN: Cross-sectional study. SETTING: Internet-based autism registry for US residents. PARTICIPANTS: Survey results from 277 twin pairs (210 dizygotic [DZ] and 67 monozygotic [MZ]) aged 18 years or younger with at least 1 affected twin. MAIN EXPOSURES: Zygosity and sex. OUTCOME MEASURES: Concordance within twin pairs of diagnosis, natural history, and results from standardized autism screening. RESULTS: Pairwise ASD concordance was 31% for DZ and 88% for MZ twins. Female and male MZ twins were 100% and 86% concordant, respectively, and DZ twin pairs with at least 1 female were less likely to be concordant (20%) than were male-male DZ twin pairs (40%). The hazard ratio for ASD diagnosis of the second twin after a first-twin diagnosis was 7.48 for MZ vs DZ twins (95% confidence interval, 3.8-14.7). Affected DZ individual twins had an earlier age at first parental concern and more frequent diagnoses of intellectual disability than did MZ twins; MZ twins had a higher prevalence of bipolar disorder and Asperger syndrome and higher concordance of the latter. Results of autism screening correlated with parent-reported ASD status in more than 90% of cases. CONCLUSIONS: Our data support greater ASD concordance in MZ vs DZ twins. Overall higher functioning, psychiatric comorbidity, and Asperger syndrome concordance among affected MZ vs DZ twins may also suggest differential heritability for different ASDs. For families in which one MZ twin is diagnosed with ASD, the second twin is unlikely to receive an ASD diagnosis after 12 months. In addition, Internet parent report of ASD status is valid.

Concordance is when one child has an ASD, does the other one? 100% concordance would mean that if one twin has an ASD, the other twin does as well. That would indicate that autism is purely genetic.

Most people will concentrate on the monozygotic concordance. Even with the broad criteria, there is 87% concordance. That would indicate that at least some fraction of the cause of autism is not genetic. This is a very complicated question, as Joseph at the Autism Natural Variation blog has discussed.

What is astounding to me is the dyzogotic concordance. Take the 39% for the broad criteria. My recollection is that the concordance for siblings is about 4% if one sibling is male, and about 10% if one sibling is female. I’m trying to find the study on this. But, is there a higher concordance for dizygotic twins than for siblings in general?

Dr. Insel spends a fair amount of time on the genetic studies involved in autism. He attributes about 15% of the current autistic population as being linked to known genetic conditions. This is a pretty common estimate in the community.

One interesting fact: the known genes associated with autism are neurodevelopmental and involved with synapses. He even titles the slide as “Autism as a synaptic disease” and proposes that synaptic function might be the unifying feature of autism.

Dr. Insel notes that there are many chemicals whose neurotoxicity have not been determined. He also notes that there are some known chemicals which increase the risk of autism–valproic acid, Thalidomide and misoprostal. For all of these there is a critical window of time–in the first or early second trimester of pregnancy–where the autism risk is increased. Thalidomide, for example, is considered to be causal in a short period of time–from 20 to 24 days gestation.

If you want to see the direction Dr. Insel may take autism research in the future, these talks are worth listening to. I think it safe to say that autism research will continue to look for causes, genetic and environmental. Environmental cause research will likely focus on prenatal exposures. Study will continue on the physical structure of the brain, the “circuitry” to help define what autism is and what the phenotypes may be. Study will continue on interventions, with a look towards earlier interventions (before age 1, possibly before symptoms are visible). Intervention research will look to be tailored to the individual, which will require some way to phenotype autism.

As I noted above, I think Dr. Insel is taking a close interest in autism. He doesn’t dictate the goals for autism research, but I think listening to what he has to say gives in interesting insight into the directions it may be going.

Trends in US autism research funding: more money going to clinical and translational research

11 May

Where money is being spent on autism research is changing. Basic science, which still gets most of the money, is decreasing and clinical and translational research is increasing.

If you are like me, you have to look up “translational research”. From the link above, “To improve human health, scientific discoveries must be translated into practical applications.” I.e. this is research to “translate” basic findings into practical applications.

This was analyzed in a paper published last year by a team at Stanford University in California:

Trends in US autism research funding.

Singh J, Illes J, Lazzeroni L, Hallmayer J.

Stanford Center for Biomedical Ethics, Center for Integration of Research on Genetics and Ethics, Stanford University, Palo Alto, CA, USA.
Abstract

This study shows that the number of autism research grants funded in the US from 1997 to 2006 significantly increased 15% per year. Although the majority of projects were concentrated in basic science (65%) compared to clinical (15%) and translational research (20%), there is a significant decrease in the proportion of basic research grants per year and a significant increase in the proportion of translational projects per year. The number of translational projects funded by the National Alliance for Autism Research and Cure Autism Now increased significantly, whereas the number of clinical projects significantly increased for the National Institutes of Health. In conclusion, this study demonstrates the shifting landscape of autism research from basic science to clinical and translational research.

The study analyzed grants up to 2006. This is before the increase in funding through the Combating Autism Act. The current budget for IACC proposes projects is about $220,000,000 per year, with a total for all years of over one billion dollars. Over $230 million are dedicated to “Which treatments and interventions will help?”

As noted here on LeftBrainRightBrain, funding levels for areas such as environmental causation have increased, overtaking genetic only causation research in funding levels.

← Older Entries
Newer Entries →