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NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

20 Sep

The National Council on Disability (NCD) advices the U.S. government on many areas, including civil rights, diversity, employment, housing and education. The NCD has sent a letter to the U.S. Secretary of Education, Arne Duncan, on the subject of “No Child Left Behind” and waivers which allow schools to “shield” some children from the standards of NCLB.

The full letter can be found here.

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

Following a meeting with U.S. Department of Education Secretary Arne Duncan on Monday, the National Council on Disability (NCD) sent the following letter to the Secretary, outlining policy recommendations for the NCLB waiver process:

September 19, 2011

The Honorable Arne Duncan, Secretary of Education
U.S. Department of Education
400 Maryland Avenue, SW
Washington, DC 20202

Dear Secretary Duncan:

It was a pleasure meeting with you and your senior staff to discuss priorities for students with disabilities within the forthcoming waiver applications for state flexibility under the No Child Left Behind (NCLB) amendments to the Elementary and Secondary Education Act. I’m writing as follow up providing you with a number of policy proposals we are putting forward to ensure that the significant progress that students with disabilities have made under No Child Left Behind is not lost as the Department pursues a waiver process. While the achievement gap between students with and without disabilities is still wide, No Child Left Behind’s disaggregation of data and requirement that schools make Adequate Yearly Progress for each subgroup of students has been a critical driver of reform.

We support the “flexibility for reform” model the Department has put forward in its vision for the waiver process. Having said that, it is imperative that the Department consider the needs of students with disabilities both with regards to what it should and should not provide in flexibility from NCLB’s accountability provisions and what it should require states and school districts to offer in return for the aforementioned flexibility.

With regards to flexibility, we urge the Department to ensure that the following provisions of NCLB are not eliminated or weakened through the waiver process:

Maintain NCLB’s requirement to disaggregate data and ensure a 95% participation rate in state assessments, disaggregated by subgroup population;
Maintain accountability for the Students with Disabilities subgroup and avoid the creation of additional rules allowing states and districts to shield certain populations of students from assessment; and
Maintain NCLB’s teacher quality provisions, particularly the requirement that special education teachers be highly qualified in any content area in which they provide direct instruction;

With regards to reform, we urge the Department to ensure that closing the achievement gap faced by students with disabilities is given sufficient emphasis through incorporating reform provisions which specifically relate to this population. As such, we encourage the Department to consider the following proposals for inclusion in the waiver process:

Eliminate the 2% rule allowing states and school districts to shield 2% of all students from their accountability systems through the use of modified assessments;
Reform the 1% rule to ensure that students who take the alternative assessment must first be assessed for and have access to Augmentative and Alternative Communication (AAC) technology;
Require states applying for waiver flexibility to instruct Local Education Agencies (LEA) to create an additional sub-group for the purposes of disaggregation of data when a sufficient numbers of students within an LEA fall into multiple sub-groups (i.e.: African-American students with disabilities, low-income students with disabilities, etc.);
Require states applying for waiver flexibility to set goals for increasing students with disabilities’ access to the general education classroom (as measured through IDEA State Performance Plan Indicator 5a); and
Require states to increase their use of research-validated educational methodologies, such as Universal Design for Learning and Response to Intervention;

NCLB has been a source of tremendous progress for students with disabilities, and we believe that if properly constructed, the waiver process can drive similar reform. We urge you to ensure that closing the achievement gap for students with disabilities is as great an area of emphasis for the Department as closing the achievement gaps faced by other minority groups. To quote from NCD’s 2008 report The No Child Left Behind Act and the Individuals with Disabilities Act: A Progress Report, “Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to high standards and expectations .”

NCD’s Policy and Program Evaluation Committee Chair Ari Ne’eman stands ready to work with you and your staff on these matters. He can be reached at aneeman@ncd.gov or at our office phone number at 202-272-2004. Thank you for your consideration.

Sincerely,

Jonathan M. Young, J.D., Ph.D.
Chairman, National Council on Disability

United States politicians on the campaign trail take up vaccine injury…again

15 Sep

In the last US presidential campaign, prominent candidates made statements about vaccine injury. Specifically autism.

Senator McCain made comments about autism and mercury:

“At a town hall meeting Friday in Texas, Sen. John McCain, R-Ariz., declared that “there’s strong evidence” that thimerosal, a mercury-based preservative that was once in many childhood vaccines, is responsible for the increased diagnoses of autism in the U.S. — a position in stark contrast with the view of the medical establishment.”

Barak Obama made a comment which, without the video to put it in context, seemed to lend support:

“We’ve seen just a skyrocketing autism rate. Some people are suspicious that it’s connected to the vaccines. This person included. The science right now is inconclusive, but we have to research it.” –Barack Obama, Pennsylvania Rally, April 21, 2008.

(“this person” was a person in the audience)

This time it is Michele Bachman. She has made the claim that gardasil (the vaccine against HPV, given to teenage and older women), resulted in “mental retardation”.

Candidate Rick Perry responded to the baseless accusation by Ms. Bachman:

You heard the same arguments about giving our children protections from some of the childhood diseases, and they were, autism was part of that. Now we’ve subsequently found out that was generated and not true.”

As a side note: the Pharyngula blog is reporting that Prof. Steven Miles has put up a $1,000 challenge for proof of Ms. Bachman’s statement.

I am offering $1000 for the name and medical records release of the person who Michele Bachmann says became mentally retarded as a consequence of the HPV. Please share this message.

Ms. Bachman’s comments were just plain wrong. She’d do well to apologize and move on. My own biased suggestion would be for her to move on into discussing some subjects involving the betterment of life for the disabled. This isn’t exactly a big plank in the republican platform but, hey, isn’t this about showing leadership?

‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

7 Sep

It is very interesting to see how disability is viewed in various cultures. Beyond academic interest, there is much we can all learn from each other. A recent paper looks at Down Syndrome and prenatal testing in Pakistan. The paper is ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

To give you an idea of the study, here is the abstract:

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the ‘will of God’ was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more ‘scientific worldview’ of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.

65 people were given cards with a number of questions and asked to sort them into a grid provided:

The method requires participants to consider and respond to a set of statements (the Q-set) using a ranking technique (a Qsort). Responding to the statements allows participants to express their viewpoint on things already written or said about the topic.

Example statements are: “A person with Down Syndrome will always be dependent on others” and “Children with Down Syndrome can achieve a great deal”. How they are sorted is then analyzed.

Some of the participants were removed from analysis. Of those remaining, some were parents and some were professionals:

Five Q-sorts were excluded from the analysis (4 parents, 1 health professional) due to concerns that these individuals had not understood the sorting procedure. The final sample of 60 comprised 26 parents of children with DS (14 mothers and 12 fathers), 28 health professionals/researchers (14 females, 14 males) and 6 female psychologists. The parents of children with DS reported occupations within the following groups: government service, domestic service, tailoring, teaching and ‘business’.

After analysis, the authors grouped the responses into three “accounts” of how Down Syndrome is viewed:

Account 1: a child with DS is ‘the will of God’ and a valued human being
Account 2: a child with DS is ‘the will of god’ but a burden to their family
Account 3: a person with DS is a genetic anomaly in a stigmatizing society

Even though “account 1” is classifies a person with Down Syndrome as “the will of god and a valued human being”:

Almost half of the parents in Account 1 expressed favourable attitudes towards abortion for the condition despite relaying positive experiences with their affected child. In the original UK based study no participant who had a close family member with DS expressed such views (Bryant et al., 2006).

Accounts 1 and 2 are from a mix of parents and professionals. Account 3 is from six professionals (two male doctors, a female doctor, a female psychologist and two women in related professions.)

The authors begin their conclusion with:

The findings of this study support those of previous research, for example, the stigma associated with having a disabled child in a Pakistani community, the co-existence of theological and biomedical explanations for disability, and the rejection of abortion on religious grounds for some, but not all Muslims.

If you will allow me, I will pull a couple of sections from the paper without added comment:

The view expressed by Item 20 (‘To know someone with DS enriches our understanding of what it is to be human’) was endorsed consistently across accounts. Participants’ comments suggested belief in a ‘higher purpose’ for the existence of people with DS; for example, “[It] makes us realize the true worth of being a normal human being” (22: female doctor, Account 1); “It reminds me of the unpredictability that is strongly associated with human life. It teaches the original meaning of what a Man is” (9: female doctor, Account 2); “Because it is something that makes us feel thankful to God” (10: female health professional, Account 3).

and

The origins of the word Islam refer to the act of submitting to the will of God, and a belief in the will of Allah as the determinant of the life-course is commonly held by Muslims (Murata & Chittick, 1994). Most participants in this study, with the exception of some of those exemplifying Account 3, strongly endorsed the item ‘If you have a child with DS it is because God chose you’ although interpretations of the will of God differed by account. Participants in Account 1 believed that Allah ‘sent’ children with DS as a blessing to parents, to be a source of learning and a means to develop a positive acceptance of His will. Participants in Account 2 expressed the view that Allah sent such children as a trial so that parents might learn forbearance and acceptance of God’s will through difficulty and sorrow.

Prof. Paul Shattuck: ASD outcomes in adulthood

2 Sep

Below is a presentation given at the last IACC (Interagency Autism Coordinating Committee) meeting. Prof. Shattuck has done some excellent work in recent years. He’s one of the people looking into the areas I find critical and underserved. If you want to hear about research which can have a real impact on the life of this generation of autistic youth, you should set aside the time to listen to this talk.

Prof. Shattuck is looking at the critical transition from school to adulthood. How well are autistic students making that transition (largely, not so well as it turns out). What are the factors that help make that transition successful? If we don’t look into these questions today the problems will only continue unresolved.


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Interagency Autism Coordinating Committee (IACC) Conference Call

31 Aug

The Interagency Autism Coordinating Committee will hold a conference call on a draft letter to the Secretary of Health and Human Services on issues relating to seclusion and restraint.

The call is September 7, 2011 from 3:00 p.m. to 5:00 p.m. ET.

Please join us for a conference call of the IACC on Wednesday, September 7, 2011 from 3:00 p.m. to 5:00 p.m. ET for a discussion and vote on the draft letter to the Secretary of Health and Human Services on issues related to seclusion and restraint and autism spectrum disorder (ASD).

The conference call will be accessible by the phone number and access code provided below. 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: 800-369-1673
Access code: 2298100

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, remote access information, the agenda 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
IACCpublicinquiries@mail.nih.gov

Scientific fraud in the UK: The time has come for regulation

3 Aug

In a recent article in the Guardian, Brian Deer poses the question of whether regulation needs to be applied to scientific research. The article, Scientific fraud in the UK: The time has come for regulation, Mr. Deer states:

Fellows of the Royal Society aren’t supposed to shriek. But that’s what one did at a public meeting recently when I leapt onto my hobbyhorse: fraud in science. The establishment don’t want to know. An FRS in the audience – a professor of structural biology – practically vaulted across the room in full cry. What got this guy’s goat was my suggestion that scientists are no more trustworthy than restaurant managers or athletes.

Restaurant kitchens are checked because some of them are dirty. Athletes are drug-tested because some of them cheat. Old people’s homes, hospitals and centres for the disabled are subjected to random inspections. But oh-so-lofty scientists plough on unperturbed by the darker suspicions of our time.

Mr. Deer’s article mentions a just release UK Government report “Peer review in scientific publications” Here is the final paragraph from the summary for that report:

Finally, we found that the integrity of the peer-review process can only ever be as robust as the integrity of the people involved. Ethical and scientific misconduct—such as in the Wakefield case—damages peer review and science as a whole. Although it is not the role of peer review to police research integrity and identify fraud or misconduct, it does, on occasion, identify suspicious cases. While there is guidance in place for journal editors when ethical misconduct is suspected, we found the general oversight of research integrity in the UK to be unsatisfactory. We note that the UK Research Integrity Futures Working Group report recently made sensible recommendations about the way forward for research integrity in the UK, which have not been adopted. We recommend that the Government revisit the recommendation that the UK should have an oversight body for research integrity that provides “advice and support to research employers and assurance to research funders”, across all disciplines. Furthermore, while employers must take responsibility for the integrity of their employees’ research, we recommend that there be an external regulator overseeing research integrity. We also recommend that all UK research institutions have a specific member of staff leading on research integrity.

I find it odd that they are focusing on peer-review, which seems to me to be a narrow field of research integrity. That said, the report is recommending that “an oversight body for research integrity” be formed.

Back to Mr. Deer’s article. He quotes a Dr. David Taylor on why such oversight might not be needed:

“It is important to recognise that in the long term it matters little if published material is inaccurate, incompetent or even fraudulent, since the advance of the scientific canon only uses that material which turns out to fit the gradually emerging jigsaw,” is how Dr David Taylor, a former executive at AstraZeneca, expressed this tenet in a recent submission to the House of Commons science and technology committee, which publishes a report today.

I think that Dr. Taylor is taking a rather idealistic view of research. Yes, there is a self-correcting nature to research. Those results which are wrong will not be replicated and will, over time, fade.

But, how much time does it take for the self-correction? Autism research provides, unfortunately, a great example of the persistence of poor level, even fraudulent, research. For example, the concept of an epidemic caused by vaccines, either through the MMR vaccine or through thimerosal, was promoted by research which ran the gamut from reasonable speculation to outright fraud. One of the prime examples of research fraud which the committee cited in the report is on the MMR/autism hypothesis.

The problem is that while we wait for this “self correction”, real people suffer the consequences. Aside from the mental anguish it has caused, the vaccine/autism epidemic idea has spawned an industry of alternative medicine practitioners and treatments. These treatments run the gamut from worthless/harmless to powerful medicine and potentially dangerous.

Researchers, especially those who are publicly funded and/or publish, hold a public trust. Certainly, researchers hold a trust to use public funds wisely. Unfortunately, published research, even bad published research, is used to promote non-science agendas. The term “tobacco science” gets thrown around a lot, but the fact is that sometimes journal publications are less about reporting results as making a political or business statement. This happens for both “big pharma” and for “little pharma“. The harm from research fraud, or even just heavily biased research, is not limited to medicine. But I would posit that the most harm is done in the area of medical research.

As an American, I will be only an observer in if/how the UK pursues regulation of research integrity. However, the damage from research fraud knows no boundaries. I don’t know if there is an optimal solution which reduces the damage of research fraud through regulation while still promoting the freedom of self-direction for researcher. Is there a need? I’d say yes. Taking the Wakefield affair as an example, there may be few examples of really damaging fraudulent research, but the damage of even these few examples can be very great.

Congress delays hearing on autism bill

2 Aug

The Santa Monica Dispatch is reporting that committee hearings on the Combating Autism Reauthorization Act have been pushed off to September:

e U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has just announced that it is postponing a meeting on the Combating Autism Reauthorization Act (CARA) until September 7. The meeting had been scheduled for this Wednesday August 3, but Congress is apparently so exhausted by its represensible behavior during the debt ceiling debate that it’s giving itself a five-week recess. With pay.

http://www.santamonicadispatch.com/2011/08/congress-delays-hearing-in-autism-bill/

The Combating Autism Act reinstated the Interagency Autism Coordinating Committee (IACC) which creates a strategic plan for autism research in the US. More importantly, the CAA authorizes congress to appropriate money for autism specific research.

The CAA is set to end (sunset) on September 30. This leaves very little time from committee hearing to any potential vote by the legislature.

My comment to the IACC

19 Jul

The IACC seeks public comment, both in-person and in writing. Below is my comment submitted for today’s meeting. I didn’t get this out until late, so it may not be included with the packets for the IACC members today, but it concerns an issue I find very important:

Dear Interagency Autism Coordinating Committee members:

I would like to thank the IACC members for their work over the recent years. It is my sincere hope that the Combating Autism Act will be reauthorized, allowing this committee to continue to guide autism research goals.

One goal I would hope that would be addressed in future Strategic Plans is the need for adequate medical care for autistics. It is my belief that the current medical system in the U.S. does not incentivize doctors for the care that is required by the disabled. One doctor told me that 70% or more of the information needed to come to a preliminary diagnosis comes from direct communication with the patient. It seems highly likely that individuals with difficulties in communication and sensory issues will require additional effort on the part of physicians. And, yet, insurance assumes that an office visit will be the same time for an autistic individual as for a non-autistic individual.

The questions that I would like to see addressed are straightforward. First, what is the appropriate amount of time doctors need to take to adequately address the needs of their autistic patients? This information could be used to allow for an additional or a different billing code for doctors to use with this population. Second, does the current system disincentivize doctors from taking on disabled patients in general, and autistic patients in specific?

A recent paper gives a view of the importance of these issues: Parenting aggravation and autism spectrum disorders: 2007 National Survey of Children’s Health. Parents without a medical home show much higher levels of aggravation. Addressing this one area could provide much benefit to not only the autistic children, but to the parents as well.

Again, I thank you for your time serving the needs of autistics.

Respectfully submitted

IACC Chairman Insel Testifies Before House Committee on the Combating Autism Act and the Accomplishments of the IACC

19 Jul

The Combating Autism Act (CAA) is set to “sunset” at the end of September of this year. With that would be the sunset of the Interagency Autism Coordinating Committee (IACC). The U.S. legislature is considering a re-authorization of the Act. Below is an announcement from the IACC about a congressional hearing, with testimony from Dr. Tom Insel, chair of the IACC and director of the National Institute of Mental Health (NIMH).

Testifying before the U.S. House of Representatives Energy and Commerce Subcommittee on Health on July 11, Dr. Thomas Insel spoke about the Combating Autism Act of 2006 and the successful federal coordination and public-private partnership efforts that have resulted from the Interagency Autism Coordinating Committee (IACC) that was created as part of the legislation. Without reauthorization of the Combating Autism Act, the IACC will sunset in September 2011. Representatives Christopher Smith (R-NJ) and Michael Doyle (D-PA) introduced the Combating Autism Reauthorization Act of 2011 (H.R. 2005) on May 26, 2011, a bill that, if enacted, would reauthorize the IACC and other federal programs that conduct research and provide services for people with autism spectrum disorders (ASD) and their families.

During his testimony, Dr. Insel, who is the director of the National Institute of Mental Health and chair of the IACC, focused on the work of the IACC in the five years since the Act was enacted, noting that the committee has “really served to focus efforts across the federal government by bringing federal agency representatives for research, services, and education, as well as parents, people with ASD, scientists, clinicians, and others together to work as a team…”

He praised the dedication of the members and noted that the collaboration between public and private members has fostered important partnerships and ensured that a range of voices and perspectives were heard. The committee’s strategic plan has guided national research efforts by creating a comprehensive blueprint for autism spectrum disorders (ASD) research.

Since the Combating Autism Act was enacted in 2006, there has been remarkable progress in the identifying symptoms of autism early, in understanding how commonly autism occurs in the community, and in developing effective interventions, particularly for very young children. This research is “moving rapidly toward translation into practical tools that can be used in clinics and community settings to change outcomes for people with ASD,” Dr. Insel said.

Health Subcommittee Members asked Dr. Insel a variety of questions, ranging from estimates of autism’s economic impact on families and society to racial disparities in diagnosis and recent research advances in the field. Asked about a recent study that suggests environmental risk factors may play a greater role in autism risk than previously thought, Dr. Insel stressed the importance of understanding how both genetics and environment interact to influence risk. He noted that, while less is known about environmental risk factors for autism than genetic factors, a number of projects were underway to follow children from before birth to early childhood to study potential environmental exposures.

When asked about the most significant gaps in ASD research, Dr. Insel cited the lack of knowledge on effectively supporting the transition from adolescence to adulthood and fixing the inconsistent service delivery systems across the country.

During the hearing, Dr. Insel was also asked how the IACC has been successful. He pointed to the committee’s achievement in improving coordination between federal agencies as well as between federal agencies and private foundations. He noted the importance of creating specific public-private partnerships around key areas of research interest and community need, citing the Autism Treatment Network (ATN) as an excellent example. The ATN is a partnership between Autism Speaks, the National Institutes of Health (NIH), and the Health Resources and Services Administration (HRSA) that creates a comprehensive model of care for children and adolescents with autism. This network helps involve families in research and provides the latest treatments directly to the community.

In addition, he pointed to the importance of public participation in the committee’s activities, creating a public forum for the community’s needs to be heard. He credited the families of people with ASD for their tireless work on behalf of the autism community, saying , “There’s no group of people that I’ve met that are more inspiring than the families of people with autism. These are really dedicated parents, who make things happen.”

While much has been accomplished, Dr. Insel emphasized the importance of continued Congressional support to build on the advances enabled by the Combating Autism Act of 2006. “While there’s been unequivocal progress, much work remains to be done. The reauthorization will be critical for continuing this momentum and the stability of the IACC over the next three years,” he said. Dr. Insel stated that reauthorization was only one step and that appropriations were critical for continued progress. He likened the reauthorization to obtaining a driver’s license, noting, “The agencies serve as our vehicle. We’ve got a great road map through this strategic plan that the IACC has put together, but at the end of the day, whether we have gas in the car or not depends on [the availability of funds appropriated by Congress].” If enacted, the Combating Autism Reauthorization Act of 2011 (H.R. 2005) would enable the committee to continue coordinating federal agency and private efforts to advance ASD research and enhance services to meet the needs of people with ASD and their families.

Dr. Insel starts at minute 21 in this video:

Here is his testimony:

Good morning Chairman Pitts, Ranking Member Pallone and members of the Committee. I am Tom Insel, Director of the National Institute of Mental Health (NIMH) at the National Institutes of Health (NIH). I have served as the Chair of the Interagency Autism Coordinating Committee (IACC), created by the Children’s Health Act of 2000 and re-established by the Combating Autism Act of 2006 (CAA), since my arrival at NIMH in 2002.

First, let me express my sincere appreciation for the opportunity to give you some background on how the existing CAA has facilitated unprecedented collaboration between federal agencies and private organizations, enabling amazing progress in the field of autism research and serving to sharpen our focus on the need for better services for people with autism and their families. We at NIH are very grateful for the strong support that you in Congress have always shown for NIH and the thousands of researchers around the country that it funds. As chair of the IACC, I’d like to express the gratitude of all the federal agencies that are members for your continued interest and encouragement.

The CAA dealt with five general provisions: centers of excellence, surveillance, education for early detection and intervention, the IACC, and authorization of funding. The 11 Autism Centers of Excellence, surveillance efforts at the Centers for Disease Control and Prevention (CDC), programs for early detection and intervention, and funding for all of these programs is authorized to continue with or without reauthorization of the CAA. The one provision that requires reauthorization to continue is the IACC, which is scheduled to sunset on September 30, 2011. For this reason, I will focus my remarks today on the IACC, but I welcome your questions about other provisions of the CAA.

In order to give you the most comprehensive yet concise background, I’ll briefly describe the IACC, its membership, its transparent process, its collaborative activities, the influential Strategic Plans that it has developed, and its various areas of intense interest. In short, this description will let you know that the IACC has fulfilled each and every requirement of the CAA. It has provided both an important forum for public discussion of autism issues and a framework for a research agenda that is optimized to take full advantage of scientific opportunities. As time permits, I also hope to share some examples of the very recent research advances that are so exciting in this field, and how these advances have been facilitated by the existence of the Strategic Plans developed by the IACC with considerable public input. Finally, I’ll discuss how the IACC has focused on the need to enhance services for people with autism.

Autism spectrum disorder (ASD) is a diverse collection of disorders that share in common impairments in verbal and nonverbal communication skills and social interactions, as well as restricted, repetitive, and stereotyped patterns of behavior. The degree and specific combination of impairments can vary from one individual to the next, creating a heterogeneous disorder that can range in impact from mild to significantly disabling. Two decades ago, ASD was considered a rare disorder. Today, with CDC’s latest prevalence estimates of 1 in 110 children in the U.S. being diagnosed with ASD, this disorder has become an urgent national health priority. In 2006, Congress passed the CAA to strengthen federal coordination around this issue and, to enhance public-private collaborations in order to accelerate research to improve the lives of people with ASD and their families.
The CAA outlines the membership of the IACC, which includes both representatives of federal agencies and public members representing a diverse set of stakeholder groups within the autism community. Currently, the IACC includes two people with ASD, several parents of children and adults with ASD, members of the advocacy, research, and service provider communities, and officials from the following federal agencies and offices that are involved in ASD research or services provision: Department of Education (ED), HHS’s CDC, Centers for Medicare & Medicaid Services (CMS), Office on Disability (OD), Substance Abuse and Mental Health Services Administration (SAMHSA), Administration on Developmental Disabilities (ADD) in the Administration for Children and Families (ACF) , Health Resources and Services Administration (HRSA), five institutes of NIH, and the NIH Director. Major autism research and services organizations represented on the IACC include Autism Science Foundation, Autistic Self Advocacy Network, Autism Speaks, SafeMinds, Simons Foundation, Southwest Autism Research & Resource Center, and the U.C. Davis M.I.N.D Institute.

In addition to the voices and perspectives added by the members of the IACC, the IACC has fostered public participation by having public comment periods at every full IACC meeting, regularly inviting written public comment, conducting formal requests for information from the public and holding town hall meetings, and has provided a high level of transparency for the public by actively disseminating information about IACC activities via e-mail, the IACC website, webcasts and even Twitter. By including both federal and public members on the committee, and by fostering public engagement through a variety of means, the IACC ensures that a diversity of ideas and perspectives on ASD are brought to the table to inform the IACC’s activities and recommendations. The IACC is a committed group—while the law only requires the committee to meet twice a year, since 2007, the committee has met around 16 times per year, including full committee and subcommittee meetings, workshops and town hall meetings.
Under the CAA, the IACC is charged with developing and annually updating a strategic plan for ASD research. In fulfilling these requirements, the committee produced its first strategic plan in January 2009 and has issued updates in 2010 and 2011. The IACC developed its Strategic Plan with a great deal of input from the public, gathered through planning meetings, town hall meetings, and requests for information. This tremendous public input, combined with that of scientific and subject matter experts and all the major federal agencies and private funders resulted in a plan that provided a clear path to move autism research forward in targeted, innovative ways to help public and private agencies prioritize activities as soon as it was released. The first IACC Strategic Plan was organized into six chapters that reflect the needs expressed by the community: early and accurate diagnosis, better understanding how autism develops, enhanced ability to identify risk factors, development of new and more effective interventions and treatments, more research needed to inform and enhance services, and the development of better approaches to meet the changing needs of people with ASD over the entire lifespan. In 2010, the committee also added a chapter on the infrastructure needed to support a robust research effort. As you can tell, our strategic plan has a broad scope, in part because it was developed through the cooperation of both research and services-focused agencies and private organizations. While the Plan is a research plan, as the law directs, it encompasses a range of research that goes from fundamental biology of ASD to inform new diagnostics and therapies, to the actual development of those needed tools and approaches, and finally to research that can inform and enhance services programs to meet the needs of people with autism across the lifespan.

Fortuitously, the first strategic plan was completed just as NIH received significant additional funding from the American Recovery and Reinvestment Act to help stimulate the economy through the support and advancement of scientific research. With a strategic plan in place to guide priorities, NIH allocated over $122 million of additional funding between FY09 ($64 million) and FY10 ($58 million) to autism research, supporting a variety of projects addressing the most critical research needs highlighted by the IACC. This was in addition to NIH’s investment of base annually appropriated funds for autism research, which was $160 million in 2010. The overall NIH investment in autism research was an unprecedented $218 million in 2010, more than double the funding prior to the CAA.

The IACC has also fulfilled the CAA requirements to produce an annual summary of advances in research and to monitor federal research activities. Since 2007, the IACC has issued four Summary of Advances documents, which describe what the committee felt were some of the most exciting advances in autism biomedical and services research each year. The IACC has also been actively monitoring not only federally-funded research, as the CAA requires, but has also tracked the research funded through private organizations, making for a much more complete picture of the research landscape across the U.S. All of the private organizations on the IACC that conduct research provided their data, and we have also collected data from all U.S. federal agencies and additional private groups. The result has been the IACC’s annual “portfolio analysis.” The first year, the data were presented at IACC meetings, but in subsequent years the IACC issued full reports on fiscal years 2008 and 2009 funding; the analysis of 2010 data is currently underway. These portfolio analysis reports have provided the first comprehensive look at autism research being conducted in the U.S. They also have facilitated a better understanding of how current research aligns with the IACC Strategic Plan. The committee has found both the summary of advances and portfolio analysis reports to be valuable tools for updating the Strategic Research Plan and determining the greatest areas of need for further action.

This year, the HHS/NIH office that supports the IACC, the Office of Autism Research Coordination (OARC), published a comprehensive Report to Congress, as required in the CAA, on federal activities that have taken place since the passage of the CAA. That report contains rich information about the programs and projects going on across HHS and the ED to meet the needs of people with autism. I urge you to take a look at this report because it provides the most comprehensive picture to date of how federal agencies are responding to the urgent needs of the autism community. The report contains details of the wide array of autism research, services and supports activities conducted by federal agencies, including biomedical and services research, public health activities, education initiatives, early screening, diagnosis and intervention services, provider training, healthcare delivery, social supports, and vocational training. We have copies of this and the other most recent reports mentioned with us and will be happy to give you copies.

Now I’d like to share with you some of the exciting advances we have seen in ASD research. Since the passage of the CAA in 2006, there has been a groundswell of activity on multiple fronts, from game-changing scientific discoveries reshaping the field of autism research to real-world applications that can help people with ASD and their families now.

As I mentioned earlier, one of the main provisions of the CAA was support for early diagnosis and intervention. CDC reports that the median age for autism diagnosis is 4 and half years of age and varies widely by sociodemographic group and geographic location. With recent advances, diagnosis by age 14 months is now a realistic possibility, and researchers are actively pushing the detection window to even younger ages. In April 2011, NIH-funded researchers demonstrated that a simple, low-cost, practical screening tool that takes only five minutes to administer can be implemented by doctors’ offices to detect ASD around one year of age for many children. More than 100 pediatricians in San Diego County, CA participated and screened over 10,000 one year old children using the checklists. Impressively, all pediatricians who participated in the study are continuing to use the tool because they recognized the tremendous potential it provides to identify autism earlier and direct families toward interventions that can result in significant positive outcomes earlier in life. Another promising diagnostic tool is a simple test that detects eye gaze patterns specific to infants with autism. A group of researchers at University of California, San Diego who have received funding from NIH to develop such a test recently reported that they could identify 1-3 year old children with autism with nearly 100 percent specificity. These promising diagnostic tools, combined with CDC’s health education campaign, “Learn the Signs. Act Early.”, to improve early identification, provide great potential for reducing the age of diagnosis and allowing children and their families to get the services and support they need when it can help the most.

Of course, early diagnosis is only valuable if effective interventions are available. Recently published results from several successful trials of early interventions have validated approaches that are effective in young children, creating real promise of improved health outcomes, and quality of life for children with ASD. In 2010, NIH investigators reported that children with ASD who receive a high intensity behavioral intervention starting by age 18-30 months show improvements in IQ, language, and adaptive behavior, to the point where the autism diagnosis no longer applies to some children who receive treatment. Soon after that groundbreaking study, a group of investigators jointly funded by HRSA and NIH reported that an intervention designed to enhance social engagement in toddlers indeed improved social, language, and cognitive outcomes. Early interventionists have noted an encouraging “problem” – new approaches that are being proven effective are being taken up so quickly by the community that it is difficult to find “control groups” for behavioral intervention trials. While this can complicate efforts to conduct randomized control trials, the real story is that parents and community practitioners are putting innovative strategies into practice quickly. Many of these recent advances in early diagnosis and intervention can be credited to NIH’s Autism Centers of Excellence (ACE), which were expanded under the CAA and now comprise 11 research centers at major research institutions across the country.

We do not know the causes of ASD, but very recent findings comparing identical and fraternal twins suggest the importance of focusing on both environmental and genetics factors. NIH and CDC are continuing to strengthen research investigations into possible environmental causes of autism, establishing expansive research networks with the capability to collect large sets of data on environmental exposures and health outcomes, and to conduct powerful analyses to determine which risk factors may be contributing to the development of autism. Population-based studies are the gold standard in epidemiology research. Large sample sizes and rigorous study designs allow researchers to examine many variables at once. Such networks, like NIH’s Childhood Autism Risks from Genetics and the Environment (CHARGE) and Early Autism Risk Longitudinal Investigation (EARLI) and CDC’s Study to Explore Early Development (SEED), will utilize data from medical records, interviews, questionnaires, developmental assessments, and physical exams to explore a host of possible risk factors, focusing heavily on factors in the environment before, during, and after pregnancy. It will take a few more years for these research networks to fully mature, but already, published findings are helping establish the evidence-base for ruling in and ruling out possible environmental triggers. In the first half of 2011 alone, the CHARGE study has implicated air pollution, mitochondrial dysfunction, and immune dysfunction as potential mechanisms for ASD. Just this month, CHARGE investigators reported that use of prenatal vitamins may reduce the risk of having children with autism. In the past week, another study, funded by CDC and a private group, showed that widely-used antidepressant medications taken during pregnancy can significantly raise the risk of having children with autism. In addition to their work on identifying risk factors for ASD, CDC also continues to provide the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the U.S. through its Autism and Developmental Disabilities Monitoring (ADDM) Network. While great progress is being made for autism, CDC’s prevalence estimates have documented significant increases in autism in the US, which highlights the need to continue research efforts and service advances being made with facilitation by the IACC activities.

With the pace of research moving so rapidly, I am confident that our continued investments in novel and innovative biomedical research in ASD will pay large dividends in the future. But there’s a strong imperative to push the best of what we know now out into the community as rapidly as possible.

HHS’s OD and the Assistant Secretary for Planning and Evaluation are creating the infrastructure to support and conduct patient centered research on health services and supports for people with disabilities, including autism. Their new Center of Excellence, authorized under the American Recovery and Reinvestment Act, is part of a national strategy for quality improvement in health care and the expansion of health care delivery system research with a focus on person-centered outcomes research. Expanding on that effort, CMS is testing and implementing family-driven, person-centered and home and community-based service provision models for people with autism.

A common goal across many federal agencies is to support and empower people with autism to live more independently and enjoy an enhanced quality of life. Informed by the IACC Strategic Plan, NIH is making non-traditional investments in novel service and health delivery models, aided by the infusion of additional funds from the Recovery Act. Both the ED’s Rehabilitation Services Administration (RSA) and HHS’s SAMHSA “Supported Employment Toolkit” are helping people with autism secure and maintain jobs in the community. Medicaid continues to fund supported employment and habilitation services through States’ home and community-based waiver programs, which pay for such services for many people with intellectual and developmental disabilities across the nation.

There are also interventions and supports that can help people with autism and their families today. HRSA is helping to pave the road from research to practice. Through funds provided by the Combating Autism Act Initiative (CAAI) under the CAA, HRSA has invested substantially in autism interventions to improve physical and behavioral health of people with ASD, practitioner training, and service provision models. HRSA-funded investigators are examining critical questions, such as the impact of co-occurring health conditions in autistic individuals and the effectiveness of parent-mediated and peer-mediated behavioral interventions. HRSA’s health professionals’ training programs are designed to reduce barriers to screening and diagnosis by increasing professional capacity and raising awareness about ASD among providers in the community. HRSA’s State Implementation Grants represent nearly $2.7 million in funds to assist nine States with improving services for people with ASD. These grants promise to help identify best-practices at the individual, community, and policy level. When possible, partnerships between agencies are being formed – HRSA and CDC have joined to sponsor “Act Early” Summits in all regions of the US and to facilitate the development of professional and community teams to improve the early identification of children with autism at a local level.

The coordination in the autism research community is unparalleled, and the IACC has played a critical role in fostering the growing list of promising public-private partnerships. Last fall, the mother of a child with autism spoke at an IACC meeting about the need to examine the high prevalence of autism in the Somali community in Minnesota reported in a state-funded study based on school data. Working collaboratively, several NIH Institutes, CDC, and Autism Speaks put together a research initiative to support investigation of the reported increase in ASD prevalence in the Minnesota Somali community and to identify the diverse service needs of these Somali-American children and their families.
As the Somali study illustrates, federal agencies recognize the autism challenge is not one we can tackle alone. There are a host of private organizations funding cutting-edge research, including four that hold a seat on the IACC – Autism Science Foundation, the Southwest Autism Research & Resources Center (SARRC) and the organizations identified by the recent IACC Portfolio Analysis as being the 2nd and 3rd largest private funders of research after NIH, Simons Foundation and Autism Speaks. Jointly, NIH, Autism Speaks, and Simons Foundation are driving several significant initiatives poised to accelerate the pace and quality of autism research. By developing the infrastructure and appropriate incentives, these public-private partnerships are encouraging data-sharing on an impressive scale, enabling scientists to do more with less. Additionally, NIH’s National Database for Autism Research (NDAR) is federating with several other autism data repositories such as the Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and the public/private-funded Interactive Autism Network (IAN) to enhance researchers’ access to data. And in the community, programs like AGRE, IAN and the Autism Treatment Network (ATN), that involve direct outreach to and collaboration with the patient community, are bringing together hundreds of researchers and clinicians with tens of thousands of people nationwide affected by ASD in a search for answers.

Federal IACC member, ADD, with the help of non-profit organizations, including the Arc of the United States, the Autistic Self Advocacy Network (ASAN), and the Autism Society, recently launched the AutismNOW Project, an innovative dissemination network to provide access to high-quality resources and information on community-based services and interventions for people with ASD and their families. AutismNOW offers a call center, web-based clearinghouse of resources, twice-weekly webinars on a variety of topics related to autism, and regional events for the community to connect in-person.

Looking back over the past five years since the passage of the CAA, we can see how the establishment of the IACC has served to focus efforts across the federal government, bringing federal agency representatives (research, services, and education), parents, people with ASD, scientists, clinicians and others together to work as a team to address the issues, and bringing a wide variety of expertise to a difficult area. In doing so, it has produced a strategic plan to guide and focus federal research efforts and catalyze public private partnerships, while also providing a forum for public discussion and identification of additional needs from the community.

We have also seen some remarkable progress in the identification of how common ASD is within communities, how ASD develops, how we can detect it at increasingly earlier ages and what types of interventions are most effective, especially in young children. This research is rapidly moving toward translation into practical tools that can be used in the clinic and community settings to change outcomes for people with ASD. In this time span, federal agencies have coordinated efforts to enhance critical services programs, identify best practices to support the education, health and employment needs of people on the spectrum, and develop new mechanisms and strategies to enable broad access to healthcare, services and supports – all leading toward improvement in quality of life for people with ASD and their families.

The CAA established the IACC, to provide advice to the Secretary HHS regarding matters related to ASD, to create a forum where the public could be actively involved in the process, and to develop a strategy to guide national research efforts. While there has been unequivocal progress, much work remains to be done. The reauthorization will be critical for continuing the momentum and stability of the IACC over the next 3 years. It is crucial that members of the IACC—individuals, federal agencies and member private organizations—have stable support to continue their efforts to work together on autism issues.

I thank you for this opportunity to speak with you and look forward to addressing any questions that you may have.

Letter to Massachusetts DDS Commissioner Urging Elimination of Electric Shock, Other Aversives

19 Jul

The National Council on Disability (NCD) has sent a letter to the Massachusetts Department of Developmental Services Commissioner on electric shocks and other aversives. Massachusetts is the home of the Judge Rotenberg Center which uses electric shocks as a main part of their program.

July 18, 2011

Elin Howe, Commissioner
Department of Developmental Services
500 Harrison Avenue
Boston, Massachusetts 02118

COMMENTS OF THE NATIONAL COUNCIL ON DISABILITY IN SUPPORT OF PROPOSED AMENDMENTS TO REGULATIONS ON BEHAVIOR MODIFICATION AT 115 CMR 5.14[i]

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other Federal agencies regarding laws, policies, practices, and procedures affecting people with disabilities. NCD strongly opposes the use of aversive treatments and accordingly submits these comments.

NCD has a longstanding history of opposing aversive treatments.[ii] As stated in NCD’s 1995 Report Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children,

While it is possible to understand the desperation of these parents, to share their exasperation with ineffective programs and treatments, and to sympathize with them in their frustration to locate appropriate programs, there are limits to what society can permit in the name of treatment. There are those in our society who would advocate for severe physical punishment or even the mutilation of prisoners convicted of what everyone would agree are heinous crimes. Yet these prisoners are afforded protection under the law from this treatment, even though there are those who would claim that such treatment would “teach them a lesson.” Students with severe behavioral disabilities are not criminals, and yet present law allows them to be subjected to procedures which cannot be used on the most hardened criminals, or, in some cases, even on animals.[iii]

NCD applauds the Massachusetts Department of Developmental Services (DDS) for taking steps toward drastically restricting use of aversive punishment, and we urge complete elimination of such methods. The use of electric shock is not a legitimate method of treatment for any person. Such measures – whose use against non-disabled individuals is already recognized as illegal and immoral – are contrary to the letter and the spirit of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We urge the Department of Developmental Services to protect both future students and current ones from the use of contingent electric shock and all other such aversive techniques.

In light of the effect on children and youth and with disabilities nationwide, NCD is gravely concerned by the use of aversive treatments at the Judge Rotenberg Center (JRC), in Canton, Massachusetts — the only known school in the United States to provide such treatment. We are aware that students from an estimated 17 other states and the District of Columbia attend JRC and are therefore potential recipients of such aversive treatments.[iv] As such, NCD views this as a significant issue of national importance.

The treatment being provided at JRC is contrary to federal policy and the findings of mental health research. The 2003 President’s New Freedom Commission on Mental Health stated that restraint will be used only as safety interventions of last resort, not as treatment interventions.[v] Similarly, the US Department of Health and Human Services Substance Abuse (HHS) and Mental Health Administration (SAMHSA) has found that seclusion and restraints are detrimental to the recovery of persons with mental illnesses.[vi]

The practices of JRC are equally contrary to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which states in part:

“…The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that… meet minimum standards relating to- provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population… and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program…” (emphasis added).[vii]

The objectionable practices at JRC have not only attracted national attention but have also been scrutinized internationally. According to the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, “. . . the term torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted . . . for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with consent or acquiescence of a public official or other person acting in an official capacity.”[viii]

In April 2010, Disability Rights International (formerly Mental Disability Rights International) issued an urgent appeal to the United Nations Special Rapporteur on Torture concerning the practices at JRC.[ix] Subsequently, in June 2010, the United Nations Special Rapporteur on Torture stated that the practices of the Judge Rotenberg Center in Canton, Massachusetts equate to torture and urged the US government to appeal.[x] The US Department of Justice (DOJ) is now investigating these, and other, allegations.[xi]

The regulations proposed by the Department of Developmental Services (DDS) send a strong message that aversive treatment should not be readily provided, but they must go further. It is critical that the DDS address the concerns identified here and supplement its regulations accordingly.

Thank you for considering our comments and recommendations. NCD stands ready to assist you in ways that our collaboration can best benefit students with disabilities and their families while promoting safe learning environments for all students across America. We are available to discuss these matters at your earliest convenience. Please contact me through NCD’s offices at (202) 272-2004.

Respectfully,

Ari Ne’eman
Policy and Program Evaluation Committee Chair
National Council on Disability

[i] With thanks to NCD Council Member Marylyn Howe and NCD Staff Robyn Powell for their invaluable support and assistance in research and drafting.

[ii] National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (2002), available at http://www.ncd.gov/publications/2000/Jan202000; National Council on Disability, Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children (1995), available at http://www.ncd.gov/publications/1995/09051995.

[iii] Id.

[iv] CNN, New York Education Officials Ban Shock Therapy (2006), available at http://articles.cnn.com/2006-06-21/politics/shock.therapy.school_1_shock-therapy-electric-shock-geds?_s=PM:EDUCATION.

[v] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[vi] Id.

[vii] 42 U.S.C. § 15009(a)(3)(B)(i-iii) (2000).

[viii] UN General Assembly, Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Article 1(1), 10 December 1984, United Nations, Treaty Series, vol. 1465, p. 85, available at http://www.unhcr.org/refworld/docid/3ae6b3a94.html.

[ix] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[x] ABC News/Nightline, UN Calls Treatment at Mass. School ‘Torture’ (2010), available at http://abcnews.go.com/Nightline/shock-therapy-massachussetts-school/story?id=11047334.

[xi] US Department of Justice, Assistant Attorney General for the Civil Rights Division Thomas E. Perez Speaks at the National Council on Independent Living Annual Conference (2010), available at http://www.justice.gov/crt/opa/pr/speeches/2010/crt-speech-100719.html.

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