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ASAN Statement on Media Reports Regarding Newtown, CT Shooting

15 Dec

The Autistic Self Advocacy Network (ASAN) has issued a statement on the school shooting in Connecticut yesterday:

ASAN

Statement on Media Reports Regarding Newtown, CT Shooting

December 14, 2012
In response to recent media reports that the perpetrator of today’s shooting in Newtown, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:

“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newtown, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

Media inquiries regarding this shooting may be directed to ASAN at info@autisticadvocacy.org.

—
By Matt Carey

ASAN: Call for Resumes: Freddie Mac Seeks Autistic Intern

14 Dec

This announcement came from the Autistic Self Advocacy Network (ASAN) via email: Call for Resumes: Freddie Mac Seeks Autistic Intern.

In partnership with the Autistic Self Advocacy Network, Freddie Mac, an industry leader in home mortgages, is seeking a paid intern for the third round of a program with ASAN to place qualified Autistic candidates in skilled positions within the company.

Architecture & Data Services

Freddie Mac is a dynamic environment enabling Intern Analysts to grow through a variety of experiences and responsibilities. Interns will start by learning basic core functions to understand how to work within the organization. The goal of working with the Intern program is to provide analysts an environment with learning opportunities through on the job training and courses available to Freddie Mac. This will allow analysts to build and strengthen skills as well as develop a broader set of competencies.

Job Description

Assist team in improving documentation of the department processes. Support organization in creating department reports and metrics against data

Job Function
Create new or updated existing process documentation to reflect organization and process changes.
Where feasible recommend automated solutions that allow for efficiencies within department processes
Submit documentation to team members for review and feedback
Participate in the discussions with team members about found issues with processes and offer potential solutions
Maintain tracking log of issues to ensure the items get addressed for completion
Collect feedback regarding new processes once implemented to adjust where needed
Typical Day
Meeting with team to collect existing process information
Update existing documentation using Microsoft standard tools and Visio.
Interacting with team members, through the employee preferred form of communication, to get the new assignments as well as to receive the feedback of the work products
Learning about existing tools that could be potentially used to automate processes where feasible.
Tools or Technologies Needed For This Role

Knowledge of Microsoft Office Products (Word, Excel, PowerPoint), Visio, IBM Lotus Notes

Skills the Intern will acquire

Process Management, Analysis, tools such as SharePoint, Dreamweaver

If you are interested in this position and live, or are willing to relocate, to the Washington, DC metro area, please send your resume to ASAN at resumes@autisticadvocacy.org.

—
By Matt Carey

FDA issues warning letter: The Judge Rotenberg Educational Center 12/6/12

14 Dec

The Judge Rotenberg Center in Massachusetts is the focus of much criticism for their use of electric shocks as aversives for behavior modification.  FDA approval is required for the shock devices (GED). Apparently JRC has changed the design but not sought FDA approval.

Here is the letter:

VIA UPS Next Day Air
December 6, 2012
Glenda Crookes
Executive Director
The Judge Rotenberg Educational Center
240 Turnpike Street
Canton, Massachusetts 02021-2359

Dear Ms. Crookes:

On October 3, 2012, through October 17, 2012, an investigator from the United States Food and Drug Administration (FDA) inspected your facility located at 250 Turnpike Street, Canton, Massachusetts.  As a result of this inspection, we observed the Graduated Electronic Decelerators (GED) 3A and GED4 devices at your facility.  Our inspection revealed that your firm has an inventory of (b)(4) GED3A devices and (b)(4) GED4 devices, for a total of (b)(4) GED devices.  Furthermore, our inspection revealed that use of the GED devices has been authorized for (b)(4) students through the Massachusetts Probate Court.
In a letter dated May 23, 2011, FDA notified your facility that the changes and modifications to the originally-cleared GED device require a new premarket notification under 21 CFR 807.81(a)(3).  As a result, the GED3A and GED4 devices violate the Federal Food, Drug, and Cosmetic Act (Act) because your facility has failed to obtain FDA clearance or approval.  Specifically, the devices are adulterated under section 501(f)(1)(B) of the Act, 21 U.S.C. § 351(f)(1)(B), because your facility does not have an approved application for premarket approval in effect, pursuant to section 515(a) of the Act, 21 U.S.C. § 360e(a), or an approved application for an investigational device exemption under section 520(g) of the Act, 21 U.S.C. § 360j(g).
In a letter dated June 29, 2012, FDA again notified your facility that the GED3A and GED4 devices are adulterated and require the submission of a premarket notification.  In responses to the letters dated May 23, 2011, and June 29, 2012, your facility stated that it is planning to make a submission under section 510(k) of the Act, 21 U.S.C. § 360(k), for changes and modifications to the GED3A and GED4 devices by December 2012.  We still have not received any submission from your facility.
Your facility should take prompt action to correct the violations addressed in this letter.  Failure to promptly correct these violations may result in regulatory action being initiated by the FDA without further notice.  These actions include, but are not limited to, seizure, injunction, and civil money penalties.  Also, federal agencies may be advised of the issuance of Warning Letters about devices so that they may take this information into account when considering the award of contracts. 
Please notify this office in writing within fifteen business days from the date you receive this letter of the specific steps your firm has taken to correct the noted violations, as well as an explanation of how your firm plans to prevent these violations, or similar violations, from occurring again.  Include documentation of the corrections and/or corrective actions (including any systemic corrective actions) that your firm has taken.  If your firm’s planned corrections and/or corrective actions will occur over time, please include a timetable for implementation of those activities.  If corrections and/or corrective actions cannot be completed within fifteen business days, state the reason for the delay and the time within which these activities will be completed.  Your firm’s response should be comprehensive and address all violations included in this Warning Letter.
Your facility’s response to this letter should be sent to:  Karen Archdeacon, Compliance Officer, Food and Drug Administration, One Montvale Avenue, 4th Floor, Stoneham, Massachusetts 02180.  If you have any questions about the content of this letter, please contact Ms. Archdeacon at (781) 587-7491.
In addition, we have scheduled a meeting at the FDA campus in Silver Spring, Maryland, Building 66 on Wednesday, January 9, 2013, to discuss the contents of this letter and to discuss your proposed 510(k) submission.  The purpose of this meeting will be to discuss an appropriate transition period, as of the date of the meeting, to discontinue use of the violative GED3A and GED4 devices.  Use of violative devices after this transition period may subject those devices and responsible persons at your facility to enforcement action, including product seizure, without further notice.  Please contact Ms. Archdeacon, at the above number to confirm this date or to reschedule a mutually convenient time.

Finally, you should know that this letter is not intended to be an all-inclusive list of the violations at your facility.  It is your facility’s responsibility to ensure compliance with applicable laws and regulations administered by FDA.
Your facility should investigate and determine the causes of the violations noted in this letter, in the Inspectional Observations, Form FDA 483 (FDA 483), issued at the close of the inspection, and in the letters dated May 23, 2011, and June 29, 2012.
Sincerely yours,
/S/
Mutahar S. Shamsi
District Director
New England District

I have to admit, this move reminds me of the US Government bringing All Capone to court for tax evasion.

—
By Matt Carey

The journal Nature hosts autism supplement

14 Dec

Nature has a supplement out with a number of articles on autism. 10 articles in the “outlook” section are available online for free

Autism
Herb Brody
Nature 491, S1 (01 November 2012)

Epidemiology: Complex disorder
Virginia Hughes
Nature 491, S2–S3 (01 November 2012)

Genetics: Searching for answers
Sarah C. P. Williams
Nature 491, S4–S6 (01 November 2012)

Child development: The first steps
Katherine Bourzac
Nature 491, S7–S9 (01 November 2012)

Adulthood: Life lessons
Lindsay Borthwick
Nature 491, S10–S11 (01 November 2012)

Diagnosis: Redefining autism
Emily Singer
Nature 491, S12–S13 (01 November 2012)

Treatments: In the waiting room
Michael Eisenstein
Nature 491, S14–S16 (01 November 2012)

Perspective: Imaging autism
Nicholas Lange
Nature 491, S17 (01 November 2012)

Culture: Diverse diagnostics
Sarah DeWeerdt
Nature 491, S18–S19 (01 November 2012)

Perspective: Brain scans need a rethink
Ben Deen Kevin Pelphrey
Nature 491, S20 (01 November 2012)

The articles are written for a general audience and cover issues ranging from changes with the DSM 5 to possible artifacts in brain imaging studies to cultural aspects of autism. The articles are relatively short and accessible. Some were written by researchers (e.g. Perspective: Brain scans need a rethink) and some by science writers (e.g. Epidemiology: Complex disorder, by Virginia Hughes, one of my favorite writers). For people looking for a little more on what is going on in autism research but not looking for technical papers, this is a great resource.

—
Matt Carey

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

13 Dec

A recent paper addresses an issue I personally have considered very important and understudied: health care delivery for autistics. The current paper is: Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership (pubmed link, full paper at AASPIRE).

From the AASPIRE press release:

AASPIRE Co-Director and principle investigator of the study, Dr. Christina Nicolaidis, said, “As a primary care provider, I know that our healthcare system is not always set up to offer high quality care to adults on the autism spectrum. However, I was saddened to see how large the disparities were. We really need to find better ways to serve them.”

While it is not surprising, it is sad that the healthcare system is not adequately serving autistic adults. Most of the survey respondents (68%) identified as having Asperger syndrome. Also, half (50%) identified as having disability in the areas of learning/remembering.

One side point, but an important one of this study: the involvement of AASPIRE and of autistic adults in the study. AASPIRE stands for the “Academic Autistic Spectrum Partnership In Research and Education (AASPIRE)”.

Autistic adult and AASPIRE Co-Director Dora Raymaker is also quoted in the press release:

AASPIRE’s community Co-Director, Dora Raymaker, noted “While I am discouraged by the findings, I am also encouraged by the direct involvement of the Autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process.”

I’ve already discussed the participation of AASPIRE, but it is worth noting the author list and affiliations:

Christina Nicolaidis, MD, MPH1, Dora Raymaker, MS1,2, Katherine McDonald, PhD3, Sebastian Dern4, W. Cody Boisclair, PhD4, Elesia Ashkenazy2, and Amanda Baggs4

1Departments of Medicine and Public Health & Preventive Medicine, Oregon Health & Science University, Portland, OR, USA; 2Autistic Self Advocacy Network, Washington, DC, USA; 3Department of Public Health, Food Studies & Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY, USA; 4AASPIRE Community Partner at Large, Portland, USA.

The names that jumped out at me right away were Dora Raymaker and Amanda Baggs. Autistic adults and some of the best people I know discussing rights and ethics of autism.

Here is a press release from Syracuse:

Katherine McDonald, Falk College of Sport and Human Dynamics associate professor and BBI faculty fellow, and other researchers with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) have found that autistic adults report significantly worse health care experiences than their non-autistic peers.

The article, Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership, is published in the Journal of General Internal Medicine.

AASPIRE is an academic-community partnership where academic researchers, autistic adults, and other community members work together throughout the project. AASPIRE is based at Oregon Health and Science University and partners with community organizations including the Autistic Self-Advocacy Network and the Autism Society of Oregon, as well as academic institutions including Syracuse University, Portland State University, and University of Indiana.

Read AASPIRE’s news release about the study

The AASPIRE press release is also available on the Thinking Person’s Guide to Autism.

Here is the abstract:

BACKGROUND: Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.

OBJECTIVE: To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS: We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.

RESULTS: Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8).

CONCLUSION: A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

I would love to see more work on this, and solutions to these issues. I would love to see more work on how the medical system as it stands disincentivises doctors from taking on developmentally disabled patients. I would love to see work on how best to serve the medical needs of individuals with communication and sensory issues which make it much more difficult to perform a standard office visit. I would love to see solutions to problems that almost certainly exist.

—
By Matt Carey

UJA Adult with ASD Survey: the time is now to let yourself be heard

11 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation are working together to gather data on ASD Adults using an online survey.

Below is the text of the introduction page. I don’t see anything limiting this to U.S. participants. If you want to see action on issues of importance to ASD adults, this will be a good step.

Welcome to IAN registration and the UJA Adult with ASD Survey.

We will be asking you to complete the following:

1) IAN Registration: Complete demographic and autism spectrum diagnosis questions to register with the Interactive Autism Network (IAN) – the world’s largest online autism research project. By registering with IAN you will have the opportunity to participate in adult-focused surveys (like the UJA Adult with ASD Survey) and will also learn about other studies hoping to invite adults with ASD to participate. We still know very little about the situation or needs of adults with ASD, and IAN hopes to change this by making adult-focused ASD research easier for participants and researchers alike.

We know privacy is important to you. The IAN privacy policy begins on page 5 of the consent document which appears here and will also be available when you view the consent question in a few minutes.

You will need Adobe Reader to open and/or print the research consent document. If you don’t have Adobe Reader, you can get it here: http://get.adobe.com/reader/

2) Consent: After answering the demographic and diagnosis questions, you will be asked to consent to participate in the IAN Research project. Click “yes” or “no” to provide your consent (or not) as you choose. (If you click “no” we will not keep the information you shared in the earlier demographic/diagnosis section.)

3) UJA Adult with ASD Survey: After you consent to participate in IAN, the UJA Adult with ASD Survey will begin. Simply answer the questions to the best of your ability. We thank you for your time and your input.

—
By Matt Carey

Interagency Autism Coordinating Committee’s (IACC) Conference Call

11 Dec

The U.S. Interagency Autism Coordinating Committee (IACC) will be holding their final meeting of 2012 next week via conference call. Details, including how to submit comments, are below.

Interagency Autism Coordinating Committee’s (IACC) Conference Call
 
Please join us for a conference call of the IACC Full Committee on Tuesday, December 18, 2012 from 10:00a.m. to 4:00p.m. ET. The committee will review and approve the final 2012 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.
 
The committee will be meeting via conference call, but oral public comments may be made in person at the location specified below and will be webcast live so that the committee members and members of the public can view the session. The other portions of the meeting will be conducted via conference call only.
 
Individuals and representatives of organizations interested in providing public comments must submit a written/electronic copy of the oral statement/comments including a brief description of the organization represented by 12:00 PM ET on Friday, December 14, 2012. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments, and presentations will be limited to three to five minutes per speaker, depending on the number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.
 
In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 12:00 PM ET, Friday, December 14, 2012. The comments should include the name and, when applicable, the business or professional affiliation of the interested person. All written comments received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.
 
The conference call and in-person oral public comment session will be open to the public. The phone number and access code for the call is 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: 800-369-1881
Access code: 9976437
 
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 prior to the meeting.  If you experience any technical problems with the conference call, please e-mail iacchelpdesk2012@gmail.com or call 301-339-3840 for assistance.
 
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 6182A
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

Which Congressman Is Blocking Bill That Would Protect Kids with Autism?

11 Dec

ABC News and a few other sources have had stories recently on the Seclusion and Restraint bill that is currently in the U.S. Congress. One can gather a great deal from the title of the ABC News story: Which Congressman Is Blocking Bill That Would Protect Kids with Autism?

The story starts out:

Legislation aimed at protecting children with autism and other disabilities from being injured in school has stalled in the House of Representatives at the hands of a single member who objects to federal intervention.

Minnesota Republican Rep. John Kline, who chairs the House’s education committee, has frozen action in the House on a proposal to institute national standards for how teachers and school staff can safely restrain students.

“Chairman Kline believes state officials and school leaders are best equipped to determine appropriate policies that should be in place to protect students and to hold those who violate those policies accountable,” said Alexandra Haynes Sollberger, the communications director for the House Committee on Education and the Workforce. “For this reason, the committee has not scheduled any action on seclusion and restraint legislation at this time.”

The “Latest Major Action” for this bill was on 4/15/2011 when it was “Referred to House subcommittee. Status: Referred to the Subcommittee on Early Childhood, Elementary, and Secondary Education” where it has stalled.

Congressman Miller, the sponsor of the bill is quoted by ABC News:

“There is no excuse for inaction,” Miller said. “In the past, this Committee has worked tirelessly on behalf of children’s safety. Our investigations made clear that a federal law is necessary to protect all children across the country and ensure that children’s safety does not depend on the state in which they live. I hope that we can put aside politics and ideologies, tackle these issues together, and do what we can legislatively to save children from abuse.”

This has not been a great month for the U.S. legislature and autism/disability issues. We had the Senate vote not ratifying the Convention on the Rights of Persons with Disabilities (CRPD) a hearing which tried to revive the old failed vaccine-epidemic and now this. I admit, the seclusion and restraint bill has been stalled for 8 months, but it’s coming to a head now with congress about to depart. At that point, this bill will die and the process will have to start all over again. Because one person won’t let it go to a vote.

Here is the text of H.R. 1381.:

SECTION 1. SHORT TITLE

This Act may be cited as the `Keeping All Students Safe Act’.
SEC. 2. FINDINGS.

Congress finds the following:
(1) Physical restraint and seclusion have resulted in physical injury, psychological trauma, and death to children in public and private schools. National research shows students have been subjected to physical restraint and seclusion in schools as a means of discipline, to force compliance, or as a substitute for appropriate educational support.
(2) Behavioral interventions for children must promote the right of all children to be treated with dignity. All children have the right to be free from physical or mental abuse, aversive behavioral interventions that compromise health and safety, and any physical restraint or seclusion imposed solely for purposes of discipline or convenience.
(3) Safe, effective, evidence-based strategies are available to support children who display challenging behaviors in school settings. Staff training focused on the dangers of physical restraint and seclusion as well as training in evidence-based positive behavior supports, de-escalation techniques, and physical restraint and seclusion prevention, can reduce the incidence of injury, trauma, and death.
(4) School personnel have the right to work in a safe environment and should be provided training and support to prevent injury and trauma to themselves and others.
(5) Despite the widely recognized risks of physical restraint and seclusion, a substantial disparity exists among many States and localities with regard to the protection and oversight of the rights of children and school personnel to a safe learning environment.
(6) Children are subjected to physical restraint and seclusion at higher rates than adults. Physical restraint which restricts breathing or causes other body trauma, as well as seclusion in the absence of continuous face-to-face monitoring, have resulted in the deaths of children in schools.
(7) Children are protected from inappropriate physical restraint and seclusion in other settings, such as hospitals, health facilities, and non-medical community-based facilities. Similar protections are needed in schools, yet such protections must acknowledge the differences of the school environment.
(8) Research confirms that physical restraint and seclusion are not therapeutic, nor are these practices effective means to calm or teach children, and may have an opposite effect while simultaneously decreasing a child’s ability to learn.
(9) The effective implementation of school-wide positive behavior supports is linked to greater academic achievement, significantly fewer disciplinary problems, increased instruction time, and staff perception of a safer teaching environment.
SEC. 3. PURPOSES.

The purposes of this Act are to–
(1) prevent and reduce the use of physical restraint and seclusion in schools;
(2) ensure the safety of all students and school personnel in schools and promote a positive school culture and climate;
(3) protect students from–
(A) physical or mental abuse;
(B) aversive behavioral interventions that compromise health and safety; and
(C) any physical restraint or seclusion imposed solely for purposes of discipline or convenience;
(4) ensure that physical restraint and seclusion are imposed in school only when a student’s behavior poses an imminent danger of physical injury to the student, school personnel, or others; and
(5) assist States, local educational agencies, and schools in–
(A) establishing policies and procedures to keep all students, including students with the most complex and intensive behavioral needs, and school personnel safe;
(B) providing school personnel with the necessary tools, training, and support to ensure the safety of all students and school personnel;
(C) collecting and analyzing data on physical restraint and seclusion in schools; and
(D) identifying and implementing effective evidence-based models to prevent and reduce physical restraint and seclusion in schools.
SEC. 4. DEFINITIONS.

In this Act:
(1) CHEMICAL RESTRAINT- The term `chemical restraint’ means a drug or medication used on a student to control behavior or restrict freedom of movement that is not–
(A) prescribed by a licensed physician, or other qualified health professional acting under the scope of the professional’s authority under State law, for the standard treatment of a student’s medical or psychiatric condition; and
(B) administered as prescribed by the licensed physician or other qualified health professional acting under the scope of the professional’s authority under State law.
(2) EDUCATIONAL SERVICE AGENCY- The term `educational service agency’ has the meaning given such term in section 9101(17) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(17)).
(3) ELEMENTARY SCHOOL- The term `elementary school’ has the meaning given the term in section 9101(18) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(18)).
(4) LOCAL EDUCATIONAL AGENCY- The term `local educational agency’ has the meaning given the term in section 9101(26) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(26)).
(5) MECHANICAL RESTRAINT- The term `mechanical restraint’ has the meaning given the term in section 595(d)(1) of the Public Health Service Act (42 U.S.C. 290jj(d)(1)), except that the meaning shall be applied by substituting `student’s’ for `resident’s’.
(6) PARENT- The term `parent’ has the meaning given the term in section 9101(31) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(31)).
(7) PHYSICAL ESCORT- The term `physical escort’ has the meaning given the term in section 595(d)(2) of the Public Health Service Act (42 U.S.C. 290jj(d)(2)), except that the meaning shall be applied by substituting `student’ for `resident’.
(8) PHYSICAL RESTRAINT- The term `physical restraint’ has the meaning given the term in section 595(d)(3) of the Public Health Service Act (42 U.S.C. 290jj(d)(3)).
(9) POSITIVE BEHAVIOR SUPPORTS- The term `positive behavior supports’ means a systematic approach to embed evidence-based practices and data-driven decisionmaking to improve school climate and culture, including a range of systemic and individualized strategies to reinforce desired behaviors and diminish reoccurrence of problem behaviors, in order to achieve improved academic and social outcomes and increase learning for all students, including those with the most complex and intensive behavioral needs.
(10) PROTECTION AND ADVOCACY SYSTEM- The term `protection and advocacy system’ means a protection and advocacy system established under section 143 of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15043).
(11) SCHOOL- The term `school’ means an entity–
(A) that–
(i) is a public or private–
(I) day or residential elementary school or secondary school; or
(II) early childhood, elementary school, or secondary school program that is under the jurisdiction of a school, local educational agency, educational service agency, or other educational institution or program; and
(ii) receives, or serves students who receive, support in any form from any program supported, in whole or in part, with funds appropriated to the Department of Education; or
(B) that is a school funded or operated by the Department of the Interior.
(12) SCHOOL PERSONNEL- The term `school personnel’ has the meaning–
(A) given the term in section 4151(10) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7161(10)); and
(B) given the term `school resource officer’ in section 4151(11) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7161(11)).
(13) SECONDARY SCHOOL- The term `secondary school’ has the meaning given the term in section 9101(38) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(38)).
(14) SECLUSION- The term `seclusion’ has the meaning given the term in section 595(d)(4) of the Public Health Service Act (42 U.S.C. 290jj(d)(4)).
(15) SECRETARY- The term `Secretary’ means the Secretary of Education.
(16) STATE-APPROVED CRISIS INTERVENTION TRAINING PROGRAM- The term `State-approved crisis intervention training program’ means a training program approved by a State and the Secretary that, at a minimum, provides–
(A) training in evidence-based techniques shown to be effective in the prevention of physical restraint and seclusion;
(B) training in evidence-based techniques shown to be effective in keeping both school personnel and students safe when imposing physical restraint or seclusion;
(C) evidence-based skills training related to positive behavior supports, safe physical escort, conflict prevention, understanding antecedents, de-escalation, and conflict management;
(D) training in first aid and cardiopulmonary resuscitation;
(E) information describing State policies and procedures that meet the minimum standards established by regulations promulgated pursuant to section 5(a); and
(F) certification for school personnel in the techniques and skills described in subparagraphs (A) through (D), which shall be required to be renewed on a periodic basis.
(17) STATE- The term `State’ has the meaning given the term in section 9101 of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801).
(18) STATE EDUCATIONAL AGENCY- The term `State educational agency’ has the meaning given the term in section 9101(41) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801(41)).
(19) STUDENT- The term `student’ means a student enrolled in a school defined in paragraph (11), except that in the case of a student enrolled in a private school or private program, such term means a student who receives support in any form from any program supported, in whole or in part, with funds appropriated to the Department of Education.
(20) TIME OUT- The term `time out’ has the meaning given the term in section 595(d)(5) of the Public Health Service Act (42 U.S.C. 290jj(d)(5)), except that the meaning shall be applied by substituting `student’ for `resident’.
SEC. 5. MINIMUM STANDARDS; RULE OF CONSTRUCTION.

(a) Minimum Standards- Not later than 180 days after the date of the enactment of this Act, in order to protect each student from physical or mental abuse, aversive behavioral interventions that compromise student health and safety, or any physical restraint or seclusion imposed solely for purposes of discipline or convenience or in a manner otherwise inconsistent with this Act, the Secretary shall promulgate regulations establishing the following minimum standards:
(1) School personnel shall be prohibited from imposing on any student the following:
(A) Mechanical restraints.
(B) Chemical restraints.
(C) Physical restraint or physical escort that restricts breathing.
(D) Aversive behavioral interventions that compromise health and safety.
(2) School personnel shall be prohibited from imposing physical restraint or seclusion on a student unless–
(A) the student’s behavior poses an imminent danger of physical injury to the student, school personnel, or others;
(B) less restrictive interventions would be ineffective in stopping such imminent danger of physical injury;
(C) such physical restraint or seclusion is imposed by school personnel who–
(i) continuously monitor the student face-to-face; or
(ii) if school personnel safety is significantly compromised by such face-to-face monitoring, are in continuous direct visual contact with the student;
(D) such physical restraint or seclusion is imposed by–
(i) school personnel trained and certified by a State-approved crisis intervention training program (as defined in section 4(16)); or
(ii) other school personnel in the case of a rare and clearly unavoidable emergency circumstance when school personnel trained and certified as described in clause (i) are not immediately available due to the unforeseeable nature of the emergency circumstance; and
(E) such physical restraint or seclusion ends immediately upon the cessation of the conditions described in subparagraphs (A) and (B).
(3) States, in consultation with local educational agencies and private school officials, shall ensure that a sufficient number of personnel are trained and certified by a State-approved crisis intervention training program (as defined in section 4(16)) to meet the needs of the specific student population in each school.
(4) The use of physical restraint or seclusion as a planned intervention shall not be written into a student’s education plan, individual safety plan, behavioral plan, or individualized education program (as defined in section 602 of the Individuals with Disabilities Education Act (20 U.S.C. 1401)). Local educational agencies or schools may establish policies and procedures for use of physical restraint or seclusion in school safety or crisis plans, provided that such school plans are not specific to any individual student.
(5) Schools shall establish procedures to be followed after each incident involving the imposition of physical restraint or seclusion upon a student, including–
(A) procedures to provide to the parent of the student, with respect to each such incident–
(i) an immediate verbal or electronic communication on the same day as each such incident; and
(ii) within 24 hours of each such incident, written notification; and
(B) any other procedures the Secretary determines appropriate.
(b) Secretary of the Interior- The Secretary of the Interior shall ensure that schools operated or funded by the Department of the Interior comply with the regulations promulgated by the Secretary under subsection (a).
(c) Rule of Construction- Nothing in this section shall be construed to authorize the Secretary to promulgate regulations prohibiting the use of–
(1) time out (as defined in section 4(20)); or
(2) devices implemented by trained school personnel, or utilized by a student, for the specific and approved therapeutic or safety purposes for which such devices were designed and, if applicable, prescribed, including–
(A) restraints for medical immobilization;
(B) adaptive devices or mechanical supports used to achieve proper body position, balance, or alignment to allow greater freedom of mobility than would be possible without the use of such devices or mechanical supports; or
(C) vehicle safety restraints when used as intended during the transport of a student in a moving vehicle; or
(3) handcuffs by school resource officers (as such term is defined in section 4151(11) of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7161(11)))–
(A) in the–
(i) case when a student’s behavior poses an imminent danger of physical injury to the student, school personnel, or others; or
(ii) lawful exercise of law enforcement duties; and
(B) less restrictive interventions would be ineffective.
SEC. 6. STATE PLAN AND REPORT REQUIREMENTS AND ENFORCEMENT.

(a) State Plan- Not later than 2 years after the Secretary promulgates regulations pursuant to section 5(a), and each year thereafter, each State educational agency shall submit to the Secretary a State plan that provides–
(1) assurances to the Secretary that the State has in effect–
(A) State policies and procedures that meet the minimum standards, including the standards with respect to State-approved crisis intervention training programs, established by regulations promulgated pursuant to section 5(a); and
(B) a State mechanism to effectively monitor and enforce the minimum standards;
(2) a description of the State policies and procedures, including a description of the State-approved crisis intervention training programs in such State; and
(3) a description of the State plans to ensure school personnel and parents, including private school personnel and parents, are aware of the State policies and procedures.
(b) Reporting-
(1) REPORTING REQUIREMENTS- Not later than 2 years after the date the Secretary promulgates regulations pursuant to section 5(a), and each year thereafter, each State educational agency shall (in compliance with the requirements of section 444 of the General Education Provisions Act (commonly known as the `Family Educational Rights and Privacy Act of 1974′) (20 U.S.C. 1232g)) prepare and submit to the Secretary, and make available to the public, a report that includes the information described in paragraph (2), with respect to each local educational agency, and each school not under the jurisdiction of a local educational agency, located in the same State as such State educational agency.
(2) INFORMATION REQUIREMENTS-
(A) GENERAL INFORMATION REQUIREMENTS- The report described in paragraph (1) shall include information on–
(i) the total number of incidents in the preceding full-academic year in which physical restraint was imposed upon a student; and
(ii) the total number of incidents in the preceding full-academic year in which seclusion was imposed upon a student.
(B) DISAGGREGATION-
(i) GENERAL DISAGGREGATION REQUIREMENTS- The information described in subparagraph (A) shall be disaggregated by–
(I) the total number of incidents in which physical restraint or seclusion was imposed upon a student–
(aa) that resulted in injury;

(bb) that resulted in death; and

(cc) in which the school personnel imposing physical restraint or seclusion were not trained and certified as described in section 5(a)(2)(D)(i); and

(II) the demographic characteristics of all students upon whom physical restraint or seclusion was imposed, including–
(aa) the categories identified in section 1111(h)(1)(C)(i) of the Elementary and Secondary Education Act of 1965 (20 U.S.C.

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By Matt Carey

Politics win over the rights of the disabled: The CRPD

8 Dec

The American Senate voted for the Convention on theRights of Persons with Disabilities, CRPD, just not by enough of a margin to pass it. The vote was 61 to 34 with 3 abstentions.

Rick Santorum was a force against the Convention. He is quoted in a number of places as stating:

“If it weren’t for you, the U.S. Senate wouldn’t have defeated the United Nations Convention on the Rights of Persons with Disabilities. Your petition signatures (over 20,000!), phone calls, emails and tweets about CRPD’s flaws made the difference.”

When I read such a statement, I am saddened that I didn’t do more to get out the word to voice support. Not that this site would have made the difference, but I wish I had done more.

The Convention was rejected by groups who felt the U.S. should not cede sovereignty over these decisions. A major point is this: the U.S. doesn’t really respond to the U.N. anyway. Sorry to put it so bluntly, but the major force behind enforcing the will of the U.N. is the U.S.. Also, if we as a people are already following the rules set forth in the Convention, we are not going to cede sovereignty to anyone, right? But, still, the specter of “the UN will tell the US how to treat their disabled children” was raised.

On CNN’s Anderson Cooper show, this point was discussed, including this rather strong statement to the contrary by John Kerry:

SEN. JOHN KERRY (D), MASSACHUSETTS: Well, I have great respect for both Rick and his wife, Karen, and their daughter and their family. He’s a strong family man. But he either simply hasn’t read the treaty or doesn’t understand it or he was just not factual in what he said, because the United Nations has absolutely zero, zero, I mean, zero ability to order or to tell or to even — I mean, they can suggest, but they have no legal capacity to tell the United States to do anything under this treaty. Nothing.

How about the other side of the discussion? In what areas might we as a people not agree with what is in the Convention? Health care. You read that correctly, health care. The country that spends the most on health care in the world is worried that the UN would impose their rule on us in health care of the disabled.

RICK SANTORUM (R), FORMER U.S. SENATOR: This is a direct assault on us and our family to hand over to the state the ability to make medical determinations and see what is in the best interest of the child and not look at the wonderful gift that every child is.

I see a familiar theme here. The disabled are all children. Moving on, one might ask, “in what way would health care be an issue?” Here is the section of the CRPD on health care:

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a.Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b.Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c.Provide these health services as close as possible to people’s own communities, including in rural areas;
d.Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e.Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f.Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

In case you are wondering what in that raised concerns, it’s this phrase: “including in the area of sexual and reproductive health”. Yes. The U.S. didn’t ratify the Convention because some groups are concerned that it includes right to birth control, including abortions.

But that’s not all. By putting “population-based public health programmes” adjacent to that statement, the door was opened for this sort of fear mongering:

Bradley Mattes, president of the International Right to Life Federation, stated, “This is a misleading measure in that it does nothing to protect life. It is disguised as a way to ‘help’ the disabled. Instead it intentionally sacrifices the most vulnerable – the disabled and the unborn – all in the name of population control.”

Yes, “population based public health programs” become “population control”. In case you are wondering, here are a few definitions of “population-based” in regards to health care, including:

Population-based care involves a new way of seeing the masses of individuals seeking health care. It is a way of looking at patients not just as individuals but as members of groups with shared health care needs. This approach does not detract from individuality but rather adds another dimension, as individuals benefit from the guidelines developed for the populations to which they belong.

No, it is not population control. “Population-based care” isn’t a scary thing.

There is another area where the way the U.S. acts today might be called into question on the issue of health care: “Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” There have been a few high profile cases in recent times where individuals were denied transplants due to disability.

In the end, this is a sad day for the U.S.. We have shown the world that we would rather not open ourselves up to criticism. Yes, criticism. That’s the most that could come out of the CRPD from members of the U.N., criticism. Which we would veto. We would rather not face criticism than provide leadership in the world and give ourselves leverage to help enact real change in other countries. If another country abuses its disabled citizens, what are we going to say? “Hey, you aren’t respecting the rights of your disabled citizens.” Yeah. That will carry a lot of weight.

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By Matt Carey

NCD Statement on Failed CRPD Ratification Vote in the Senate

7 Dec

The National Council on Disability (NCD) has released a statement about the failure of the U.S. Senate to ratify the CRPD (Convention on the Rights of Persons with Disabilities). The text of the Convention can be found online.

WASHINGTON, DC – The Chairman of the National Council on Disability (NCD), an independent federal agency, expressed his deep disappointment that the United States Senate fell short of the votes needed to pass the resolution for ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

“Yesterday, the United States had an opportunity to join more than 120 countries in a unified commitment to protect the rights of people with disabilities around the globe. It is deeply disappointing the Senate chose not to do so at this time. The CRPD was conceived with the same goals as the Americans with Disabilities Act (ADA): to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society,” said Jonathan Young, NCD Chairman. “Through the development phase of the treaty and our support throughout the process, NCD has proudly encouraged the adoption of the same protections Americans with disabilities enjoy because of the ADA to other nations worldwide.

Almost one decade ago, the National Council on Disability kicked off U.S. disability community consideration of an international treaty by publishing a White Paper titled “Understanding the Role of an International Convention on the Human Rights of People with Disabilities.” Since that time, NCD has published numerous documents and reports in support of the development, signature and ratification of the CRPD.

“It is devastating that the Senate did not take this leap forward with the same bipartisan effort the community had with the ADA in advancing the quality of life for people with disabilities in the U.S. and worldwide, but NCD will continue to recommend ratification of this historic treaty to the 113th Congress,” added Joan Durocher, NCD’s General Counsel and Director of Policy.

About the National Council on Disability: NCD is an independent federal agency of 15 Presidentially-appointed Council Members and full-time professional staff, who advise the President, Congress and other federal agencies on disability policy, programs, and practices.

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By Matt Carey

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